Some of you have read the post where I speculated that Laura may in fact be an alien. I admit it is a interesting notion, and is certainly funny when you really think about it.
Another acurate description would be to say she is a perpetual motion machine. Unless she is being hled she is constantly on the go. Yes, I know she does not crawl yet. However, when she is laying down (on her back, side or stomach, it makes no difference), or when we are trying to get her to sit up, she is constantly moving. Even whe she is asleep, she has some place to go. She stayed home with me on my day off last week, and she wore me out. I think Tara and I are going to have to put a bell on her when she starts crawling.
Now, when you combine that constant energy with what appears to be an unquenchable curiosuty, I think we are toast. When she is awake, her head is on a swivle. She is constatly turning it. She tries to study anything and everything. She wants to be apart of everything. It really is kind of cool to see.
It is funny how our life mimicks Laura. Starting yesterday was the start of a very busy 8 days. Laura's Granny had a party to intorduce Laura to all of Granny's friends yesterday. Natually Laura was a big hit, and soaked up the constant attention. She was happily passed from one lady to the next, and she loved every minute of it. The party started at 2:00 pm and we did not get home until nearlly 8:00 pm. Laura got some really cool new stuff at the party as well. So to all of you who brought gifts, Thank you.
Of course Tara and I are both working this week. At R.E.I. we have a group of new hires I get to train later this week. That means a little more to do at home during the week. Saturday is the Down Syndrome Association of Houston Buddy Walk (go to www.dsah.org to sign up or donate). Our team, Laura's Lions, has around fourty walkers signed up, and they are coiming in from all over to be apart of the action. Then Sunday Laura has her Bible Presentation at Second Baptist Church Houston at the 9:30 service at the Woodway campus. It is looking like there will be a big turn out for that as well.
So our life this week will feel like it is non stop. We will be in perpetual motion. We do have a few pictures from yesterday, that I will try to post later this week. I will also try to post the Picture we have of Laura in her tutu. It was her costume for Halloween. She was very cute.
Monday, November 9, 2009
Wednesday, October 28, 2009
Things are becoming . . . Normal?
That's right folks, after only 4 months of capture and domination by this completely alien thing in our lives, and we are starting to see some normalcy again. Of course I am reasonably sure Laura is not an actual alien, but what better description for a semi gelatinous mass that squirms, wiggles (around our house we have combined the two words to form a new more powerful word squiggle), makes weird noises (which she will do for long periods of time, whether you are there to talk back to her or not) and completely dominates every aspect of our lives. She smiles almost constantly. Nothing like that big toothless grin to turn the day around. Perhaps further evidence that Laura might be an alien, she has unusual powers (as I just mentioned, her smile).
The girl is a mess. For a child that cannot move under her own power, she is all over the place. Tara and I live in constant fear of two things. First, that when she starts to crawl and walk we will never get any rest as she will be on the go. I had really better start getting into better shape. In truth this would be a great thing. She already shows incredible curiosity about her surroundings. We are very excited about reaching a time when she can explore them more thoroughly.
The second thing we live in fear of, is that Laura will be a constant talker. You know, the type of person that just never shuts up, no matter what you do or say to them to get them to leave you alone. As I said above, Laura is constantly making all kinds of noises, whether you are there or not. That is great. Tara and I encourage her constantly to be more vocal. But we are afraid that once she figures out how to form words, she will go from two and three words sentences to hours long dissertations on her stuffed animal in no time. God help us all. Actually, given her Down Syndrome I would be very proud of her if she were to make that leap.
Ok, now for the updates. By now Laura should be over 14.5 pounds. She had her 4 month check up and shots last week and she weighed 14 pounds 6 ounces. She is 24 inches long. This all means that she is above the 90% range for height and weight. That is great news. Everything I have described in the post so far continues to point to Laura's surgery being a complete success. We are incredibly grateful for that.
Other tidbits. We are down to 6 feeds a day. This means we have an 8 hour period at night where we can try to get some sleep. I hope we are able to further reduce her number of feeds in the not to distant future. Yes she sleeps very well through the night.
Laura has successfully rolled from her back to her belly all on her own. Tara and I were very excited to see this. Laura looked a little confused about how she had gotten that way, but once she got back onto her back again she tried to turn over again.
She is also starting to reach for things. Up until now, if she had something in her hand it was either placed there or she found it by accident. Now she pulls burp clothes off of shoulders to suck on them. She also reaches for toys that she can see in her stroller or carrier.
Most importantly, she is starting to figure out how to feed from her bottle. For over a month before her surgery she fed pretty much from an NG tube. She has fed primarily from the tube since her surgery. We work with her on almost every feed. She is constantly taking about 5 mL. But she usually has one feed a day where she will take more. This is a great thing.
So as you can see things are constantly changing around here. It is fun to see it all happening. I will try to get pictures up soon. We have some great ones.
Just a reminder, the Down Syndrome Association of Houston 2009 Buddy walk is November 14th at Jones plaza. There is still time to sign up to walk or donate to DSAH. To do either go to www.dsah.org. On the left side of your screen you will see the word Buddywalk. Click on it. Then in the middle of your screen you will see a link to the 2009 Buddywalk page. Click on that link. Then click on the link for Find Team. In the first blank field on the right side of your screen type Laura's Lions, and click the search button just below. Then click on the link to Laura's Lions team page. From there you can donate, sign up to walk or both. To all those who have already donated or signed up to walk, we cannot thank you enough.
The girl is a mess. For a child that cannot move under her own power, she is all over the place. Tara and I live in constant fear of two things. First, that when she starts to crawl and walk we will never get any rest as she will be on the go. I had really better start getting into better shape. In truth this would be a great thing. She already shows incredible curiosity about her surroundings. We are very excited about reaching a time when she can explore them more thoroughly.
The second thing we live in fear of, is that Laura will be a constant talker. You know, the type of person that just never shuts up, no matter what you do or say to them to get them to leave you alone. As I said above, Laura is constantly making all kinds of noises, whether you are there or not. That is great. Tara and I encourage her constantly to be more vocal. But we are afraid that once she figures out how to form words, she will go from two and three words sentences to hours long dissertations on her stuffed animal in no time. God help us all. Actually, given her Down Syndrome I would be very proud of her if she were to make that leap.
Ok, now for the updates. By now Laura should be over 14.5 pounds. She had her 4 month check up and shots last week and she weighed 14 pounds 6 ounces. She is 24 inches long. This all means that she is above the 90% range for height and weight. That is great news. Everything I have described in the post so far continues to point to Laura's surgery being a complete success. We are incredibly grateful for that.
Other tidbits. We are down to 6 feeds a day. This means we have an 8 hour period at night where we can try to get some sleep. I hope we are able to further reduce her number of feeds in the not to distant future. Yes she sleeps very well through the night.
Laura has successfully rolled from her back to her belly all on her own. Tara and I were very excited to see this. Laura looked a little confused about how she had gotten that way, but once she got back onto her back again she tried to turn over again.
She is also starting to reach for things. Up until now, if she had something in her hand it was either placed there or she found it by accident. Now she pulls burp clothes off of shoulders to suck on them. She also reaches for toys that she can see in her stroller or carrier.
Most importantly, she is starting to figure out how to feed from her bottle. For over a month before her surgery she fed pretty much from an NG tube. She has fed primarily from the tube since her surgery. We work with her on almost every feed. She is constantly taking about 5 mL. But she usually has one feed a day where she will take more. This is a great thing.
So as you can see things are constantly changing around here. It is fun to see it all happening. I will try to get pictures up soon. We have some great ones.
Just a reminder, the Down Syndrome Association of Houston 2009 Buddy walk is November 14th at Jones plaza. There is still time to sign up to walk or donate to DSAH. To do either go to www.dsah.org. On the left side of your screen you will see the word Buddywalk. Click on it. Then in the middle of your screen you will see a link to the 2009 Buddywalk page. Click on that link. Then click on the link for Find Team. In the first blank field on the right side of your screen type Laura's Lions, and click the search button just below. Then click on the link to Laura's Lions team page. From there you can donate, sign up to walk or both. To all those who have already donated or signed up to walk, we cannot thank you enough.
Friday, October 16, 2009
Joys and frustrations
Well it has been an interesting week, to say the least. I am going to deal with the frustrations first, so I can work them out of my system.
Some of you know that we have applied for medicaid for Laura. Medicaid, of course, is a government run health care program for low income families. To qualify you cannot make more than a certain amount of money depending on how big your house hold is. We did not qualify. We did not expect to. That is fine. Let those who need this program take advantage of it.
A similar program, that is supposed to provide assistance for those who can not work is run through Social Security. For those of us who work, yes the same government institution that feels the need to take a portion of everyone of our pay checks. The program is called SSI Disability. You may have seen lawyers talking about it on television. The goal of this program, is to provide health care to those who cannot work due to some disability. To qualify for it, you have to first qualify for Social Security Supplemental Income. Now, how do you know if you qualify for the supplemental income you ask? Simple, they use the exact same guidelines as Medicaid.
Can you say "from the Department of Redundancy Department"? Two separate programs that are supposed to be aimed at two very different groups, yet they use the exact same guide lines. So if you are in a lower income tax bracket, or are an illegal immigrant, you can help yourself to as much government funding as you need. For those who want to curtail and rein in wasteful programs, here are two different yet the same programs for you to start with. Here is the bottom line, if either Tara or I quit our jobs, or we have more kids, Laura will qualify for these programs. Someone explain to me how this makes any kind of sense please.
Ok, that is the frustration side of things. Now for the fun stuff.
Laura had her regular therapy session this week. Leigh, Laura's therapist, continues to be impressed with how Laura is doing. Laura's muscle tone continues to look good. Low muscle tone is a common problem in children with Down Syndrome. Low muscle tone can lead to problems like slow development of speech patterns, delays in crawling and walking, and other further reaching issues. Laura however, works out rigorously several times a day, and so does not appear to have low muscle tone issues.
She currently is capable of holding herself on her side. That means we can place her on her side and she will stay there on her own, with no assistance from us. She has rolled on to her side several times in the last few weeks, and earlier this week she rolled from her side to her stomach all by herself. We are very excited.
Speaking of speech patterns, Laura is a little chatter box. If you are close to her and have captured her attention (the child is fascinated with light sources, it is the weirdest thing) she will coo, and grunt and moan at you for as long as you will pay attention to her. Her smile is a constant source of joy around our family. All of this is continued proof that physical therapy does work.
This week we went and toured the Arbor School here in Houston. The Arbor School is a private school that accepts and works with all kinds of children with all kinds of challenges. We were impressed with their setup and their future plans. Over all a very nice program. That being said, if we are given a choice between The Arbor School and The Rise School we would likely choose The Ris School. Mainly because the Rise School caters to Children with Down Syndrome. However, both are great programs.
The final bit is an update on the Down Syndrome Association of Houston Buddy Walk for 2009. Laura's team is set up. It is called Laura's Lions. It is Captained by Judy Johnson, Laura's Grammy. To date we have 30 walkers signed up and have raised almost $1,000.00 dollars. There is still plenty of time to sign up.
PLEASE go to www.dsah.org web site and select the Buddy Walk link on the left side of your screen. From there, to get to Laura’s page click on the Buddy Walk Link now in the middle of your screen. Then, on the find a team option please type Laura’s Lions under team name. From Laura's page you can click on the Home button to read more about the Buddy Walk program and details of the days events. From here you can either sign up to walk (a $10.00 per person fee) with us on November 14th, you can choose to donate or you can do both.
We hope you decide to participate in this year's Houston Buddy Walk by either registering as a walker for our Team, "Laura's Lions", or by donating to our cause. We are looking forward to adding more lions to Laura's pride!!
Some of you know that we have applied for medicaid for Laura. Medicaid, of course, is a government run health care program for low income families. To qualify you cannot make more than a certain amount of money depending on how big your house hold is. We did not qualify. We did not expect to. That is fine. Let those who need this program take advantage of it.
A similar program, that is supposed to provide assistance for those who can not work is run through Social Security. For those of us who work, yes the same government institution that feels the need to take a portion of everyone of our pay checks. The program is called SSI Disability. You may have seen lawyers talking about it on television. The goal of this program, is to provide health care to those who cannot work due to some disability. To qualify for it, you have to first qualify for Social Security Supplemental Income. Now, how do you know if you qualify for the supplemental income you ask? Simple, they use the exact same guidelines as Medicaid.
Can you say "from the Department of Redundancy Department"? Two separate programs that are supposed to be aimed at two very different groups, yet they use the exact same guide lines. So if you are in a lower income tax bracket, or are an illegal immigrant, you can help yourself to as much government funding as you need. For those who want to curtail and rein in wasteful programs, here are two different yet the same programs for you to start with. Here is the bottom line, if either Tara or I quit our jobs, or we have more kids, Laura will qualify for these programs. Someone explain to me how this makes any kind of sense please.
Ok, that is the frustration side of things. Now for the fun stuff.
Laura had her regular therapy session this week. Leigh, Laura's therapist, continues to be impressed with how Laura is doing. Laura's muscle tone continues to look good. Low muscle tone is a common problem in children with Down Syndrome. Low muscle tone can lead to problems like slow development of speech patterns, delays in crawling and walking, and other further reaching issues. Laura however, works out rigorously several times a day, and so does not appear to have low muscle tone issues.
She currently is capable of holding herself on her side. That means we can place her on her side and she will stay there on her own, with no assistance from us. She has rolled on to her side several times in the last few weeks, and earlier this week she rolled from her side to her stomach all by herself. We are very excited.
Speaking of speech patterns, Laura is a little chatter box. If you are close to her and have captured her attention (the child is fascinated with light sources, it is the weirdest thing) she will coo, and grunt and moan at you for as long as you will pay attention to her. Her smile is a constant source of joy around our family. All of this is continued proof that physical therapy does work.
This week we went and toured the Arbor School here in Houston. The Arbor School is a private school that accepts and works with all kinds of children with all kinds of challenges. We were impressed with their setup and their future plans. Over all a very nice program. That being said, if we are given a choice between The Arbor School and The Rise School we would likely choose The Ris School. Mainly because the Rise School caters to Children with Down Syndrome. However, both are great programs.
The final bit is an update on the Down Syndrome Association of Houston Buddy Walk for 2009. Laura's team is set up. It is called Laura's Lions. It is Captained by Judy Johnson, Laura's Grammy. To date we have 30 walkers signed up and have raised almost $1,000.00 dollars. There is still plenty of time to sign up.
PLEASE go to www.dsah.org web site and select the Buddy Walk link on the left side of your screen. From there, to get to Laura’s page click on the Buddy Walk Link now in the middle of your screen. Then, on the find a team option please type Laura’s Lions under team name. From Laura's page you can click on the Home button to read more about the Buddy Walk program and details of the days events. From here you can either sign up to walk (a $10.00 per person fee) with us on November 14th, you can choose to donate or you can do both.
We hope you decide to participate in this year's Houston Buddy Walk by either registering as a walker for our Team, "Laura's Lions", or by donating to our cause. We are looking forward to adding more lions to Laura's pride!!
Sunday, October 11, 2009
Laura's Lions
As many of you know my daughter, who has Down Syndrome, Laura Allison Schaefer had open heart surgery before she was three months old. The surgery was a complete success, and she is doing great.
The Lion in the picture below is her favorite stuffed animal. It was the first toy she really responded too. It was a great source of comfort to us while she was in surgery. We felt like it is a great representation of the way Christ watches over all of his people. Plus, it is an amazing reminder of just how many people were preying for Laura through that part of her young life. It helped to keep us all sane while she was in the operating room, and out of our care.
Now the Down Syndrome Association of Houston (dash for short) could use your help. They are having a Buddy walk on November 14th. Please check the link to the dash web site the right for more details. If you would like to participate on our team, Laura's Lions, I need to know no later than Thursday the 15th of October. This is so we can get you registered as a member of our team.
If you would like to donate your financial support please let me know. Funds that are raised will go to support Down Syndrome research
Our Team Captain is Laura's Grammy (Judy Johnson). However, all of Laura's grandparents and parents will be trying to get people to join our team. So the more the merrier. If you are available on November 14th come take a stroll with Laura, because each of you are already one of her Lions, we would love to have along.
The Lion in the picture below is her favorite stuffed animal. It was the first toy she really responded too. It was a great source of comfort to us while she was in surgery. We felt like it is a great representation of the way Christ watches over all of his people. Plus, it is an amazing reminder of just how many people were preying for Laura through that part of her young life. It helped to keep us all sane while she was in the operating room, and out of our care.
Now the Down Syndrome Association of Houston (dash for short) could use your help. They are having a Buddy walk on November 14th. Please check the link to the dash web site the right for more details. If you would like to participate on our team, Laura's Lions, I need to know no later than Thursday the 15th of October. This is so we can get you registered as a member of our team.
If you would like to donate your financial support please let me know. Funds that are raised will go to support Down Syndrome research
Our Team Captain is Laura's Grammy (Judy Johnson). However, all of Laura's grandparents and parents will be trying to get people to join our team. So the more the merrier. If you are available on November 14th come take a stroll with Laura, because each of you are already one of her Lions, we would love to have along.
Wednesday, October 7, 2009
The Latest . . .
Well Laura is almost four months old. Where did the time go?
Here are the technical updates. As of her last appointment with her cardiologist, she is right at 23 inches long and just under 14 pounds. Of course when they weighed her she had missed a meal, so she may be over 14 pounds now. She certainly does not look like she has missed a meal.
Now for what everyone wants to know. Her recovery is going great. She is so much more active and alert now. Everything she does is about trying to interact with her environment. In the last few days she has made a concerted effort to reach for her toys when you dangle them in front of her. For the last week or two she has tried to reach for your face when you hold her (assuming she does not fall asleep in your arms, which is very common). Now her gross motor control is not very good yet, so all this reaching is basically controlled flailing, but her daddy likes brag on her and exaggerate what she is doing.
She also trys to talk to you. Her therapist calls it cooing. I like to call it talking. We are supposed to mimic the sounds back to her so she will keep making them.
She has also started to try to support herself in a sitting position. What do I mean, you are asking? I don't blame you. I could have phrased that better. Basically, if we have her sitting in our lap she will use her abs to try and support herself in that position. Usually what happens is she gets a rocking motion going as she tenses then releases her ab muscles.
Our therapist also has us doing some leg exercises with her. This is to help her build muscle tone so that she will hopefully start moving on her own close to the same time as most babies.
Most importantly, we are trying to feed her from a bottle again. Since she has a good suck and is trying to talk to us, she should be able to feed from the bottle. We are very excited about the fact that she will take a milliliter or two at each feed. We are hoping that this means she will take to it sometime next week. Right now it is small victories, like she will open her mouth when she sees the bottle. We are very excited.
Laura watched her first College football game this past weekend. Unfortunately, the Aggies lost. However we got these great pictures out of it. We hope you enjoy them as much as we do.
However, the most important thing she has ever done is seen in these pictures. As everyone can plainly see she is trying hard in the second picture to give the Aggie Gig'em sign. She will get a second chance this Saturday. I will let you know if she succeeds.
Here are the technical updates. As of her last appointment with her cardiologist, she is right at 23 inches long and just under 14 pounds. Of course when they weighed her she had missed a meal, so she may be over 14 pounds now. She certainly does not look like she has missed a meal.
Now for what everyone wants to know. Her recovery is going great. She is so much more active and alert now. Everything she does is about trying to interact with her environment. In the last few days she has made a concerted effort to reach for her toys when you dangle them in front of her. For the last week or two she has tried to reach for your face when you hold her (assuming she does not fall asleep in your arms, which is very common). Now her gross motor control is not very good yet, so all this reaching is basically controlled flailing, but her daddy likes brag on her and exaggerate what she is doing.
She also trys to talk to you. Her therapist calls it cooing. I like to call it talking. We are supposed to mimic the sounds back to her so she will keep making them.
She has also started to try to support herself in a sitting position. What do I mean, you are asking? I don't blame you. I could have phrased that better. Basically, if we have her sitting in our lap she will use her abs to try and support herself in that position. Usually what happens is she gets a rocking motion going as she tenses then releases her ab muscles.
Our therapist also has us doing some leg exercises with her. This is to help her build muscle tone so that she will hopefully start moving on her own close to the same time as most babies.
Most importantly, we are trying to feed her from a bottle again. Since she has a good suck and is trying to talk to us, she should be able to feed from the bottle. We are very excited about the fact that she will take a milliliter or two at each feed. We are hoping that this means she will take to it sometime next week. Right now it is small victories, like she will open her mouth when she sees the bottle. We are very excited.
Laura watched her first College football game this past weekend. Unfortunately, the Aggies lost. However we got these great pictures out of it. We hope you enjoy them as much as we do.
However, the most important thing she has ever done is seen in these pictures. As everyone can plainly see she is trying hard in the second picture to give the Aggie Gig'em sign. She will get a second chance this Saturday. I will let you know if she succeeds.
Tuesday, September 29, 2009
The Journey, part 3
As some of you know, back in July I put up a couple of posts entitled "The Journey". I have not continued it for several reasons. Chief among them is the next part. It talks about what we were going through when we began to learn something was not as we expected it to be.
Some of you will have seen the email that is posted below. If you have not, I have finally convinced myself to post it because it is a story that can help others see that they are not alone in how they are reacting to finding out difficult news about their children.
"Howdy,
As all of you know, Tara and I have been attending our regular appointments for our baby girl Laura. These appointments have all been nothing but good to great news, until today.
Today at our regular appointment, Dr. Plavidal saw an enlarged ventricle in the left hemisphere of Laura’s brain. This caused him great concern. So much so, that he sent us to a specialist. The specialist, Dr. Kirshon, found an additional enlarged ventricle in the right hemisphere of Laura’s brain. When he took a look at Laura’s heart, he also saw a defect there. These two conditions combined, caused Dr. Kirshon great concern. Dr. Kirshon then told us the different possible scenarios about what is going on and what the cause might be.
The first scenario is that there is a defect on either the 13th or 18th chromosomal pair. This is the worst case scenario, because if this is the cause then Laura’s life is not viable. This scenario has us both scared out of our minds. Especially, since there is nothing that can be done. There is no surgery, pills or treatment that can fix her. Once she is born she will not have long to live.
The second scenario, is that there is a defect on the 21st chromosomal pair. In this scenario, Laura will have Down’s Syndrome. This is not all bad, as she will be a loving, happy child all of her life. How many of us wish we could be that lucky.
In the third scenario, the defect is on any of the other chromosomal pairs. If this is the case, a minor surgery will be done once she is born to repair the affected areas and she will have a long healthy life. We are holding on to this scenario, because rest of her development is right where it should be. Brain size, heart activity, head size, torso size and arm and leg development are all in line with a child in her 27th week of gestation. There is no clubbing of the hands or feet. There is nothing unusual about her head or face. Although these are secondary and we do not have a medical reason, we are hoping they are good signs for this third and least likely scenario.
To determine what the cause is, we had Dr. Kirshon do an amniocentesis. This will allow the doctors to see if it is a chromosomal defect causing these conditions. We should have the preliminary results before the weekend. We will get the final results in a few weeks. Dr. Kirshon has also arranged for us to have an echo cardiogram done. This will give us a better look at her heart, which will enable us to see what exactly is wrong so we can plan out the proper treatment. This will be done in two to three weeks. We are waiting to hear from Texas Children’s Hospital to find out when the appointment is.
We know that God has Laura’s entire life in His hands. We know that He will not put her, or us, through anything we cannot handle. We know that worrying does not add one more day to our lives. We know that He knows our hearts and our minds better that we do. We also know that when His people pray He hears it and He moves mightily. That is why we are asking for all of you to pray. Pray for Tara and I as we are emotional wrecks right now. We bounce form acceptance to terrified to blaming ourselves for what is going on with Laura. Please pray that He surrounds us and wraps us in His love, comfort and support. Please pray for the doctors that they are able to determine what the cause of these conditions are, so we can plan the best course of treatment. And most importantly, please pray that God protects our precious girl."
The above happened on March 25, 2009.
Just for dramatic affect I am going to wait until tomorrow to post the next part of the journey.
Some of you will have seen the email that is posted below. If you have not, I have finally convinced myself to post it because it is a story that can help others see that they are not alone in how they are reacting to finding out difficult news about their children.
"Howdy,
As all of you know, Tara and I have been attending our regular appointments for our baby girl Laura. These appointments have all been nothing but good to great news, until today.
Today at our regular appointment, Dr. Plavidal saw an enlarged ventricle in the left hemisphere of Laura’s brain. This caused him great concern. So much so, that he sent us to a specialist. The specialist, Dr. Kirshon, found an additional enlarged ventricle in the right hemisphere of Laura’s brain. When he took a look at Laura’s heart, he also saw a defect there. These two conditions combined, caused Dr. Kirshon great concern. Dr. Kirshon then told us the different possible scenarios about what is going on and what the cause might be.
The first scenario is that there is a defect on either the 13th or 18th chromosomal pair. This is the worst case scenario, because if this is the cause then Laura’s life is not viable. This scenario has us both scared out of our minds. Especially, since there is nothing that can be done. There is no surgery, pills or treatment that can fix her. Once she is born she will not have long to live.
The second scenario, is that there is a defect on the 21st chromosomal pair. In this scenario, Laura will have Down’s Syndrome. This is not all bad, as she will be a loving, happy child all of her life. How many of us wish we could be that lucky.
In the third scenario, the defect is on any of the other chromosomal pairs. If this is the case, a minor surgery will be done once she is born to repair the affected areas and she will have a long healthy life. We are holding on to this scenario, because rest of her development is right where it should be. Brain size, heart activity, head size, torso size and arm and leg development are all in line with a child in her 27th week of gestation. There is no clubbing of the hands or feet. There is nothing unusual about her head or face. Although these are secondary and we do not have a medical reason, we are hoping they are good signs for this third and least likely scenario.
To determine what the cause is, we had Dr. Kirshon do an amniocentesis. This will allow the doctors to see if it is a chromosomal defect causing these conditions. We should have the preliminary results before the weekend. We will get the final results in a few weeks. Dr. Kirshon has also arranged for us to have an echo cardiogram done. This will give us a better look at her heart, which will enable us to see what exactly is wrong so we can plan out the proper treatment. This will be done in two to three weeks. We are waiting to hear from Texas Children’s Hospital to find out when the appointment is.
We know that God has Laura’s entire life in His hands. We know that He will not put her, or us, through anything we cannot handle. We know that worrying does not add one more day to our lives. We know that He knows our hearts and our minds better that we do. We also know that when His people pray He hears it and He moves mightily. That is why we are asking for all of you to pray. Pray for Tara and I as we are emotional wrecks right now. We bounce form acceptance to terrified to blaming ourselves for what is going on with Laura. Please pray that He surrounds us and wraps us in His love, comfort and support. Please pray for the doctors that they are able to determine what the cause of these conditions are, so we can plan the best course of treatment. And most importantly, please pray that God protects our precious girl."
The above happened on March 25, 2009.
Just for dramatic affect I am going to wait until tomorrow to post the next part of the journey.
Thursday, September 24, 2009
Getting back to a routine.
Well, we have been home for about a week now. In some ways it seems longer. In some ways it seems like only a few days. Laura is doing great. She either sleeps, or demands to be the center of attention.
As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.
I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.
We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.
Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.
Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.
So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.
Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.
As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.
I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.
We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.
Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.
Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.
So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.
Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.
Tuesday, September 22, 2009
The latest info
Yesterday, Laura had a check up with her Cardiologist after being home only 4 days
I could not think of a better way to present this information than how my wife, Tara, put it in an email earlier today. That is right, I am blatantly stealing from my wife.
"I cannot express how deeply thankful Marcus and I are to each of you for your prayers for Laura. We truly believe in the power of prayer.
Laura is doing very well. She had a great checkup yesterday with the cardiologist. Her lungs are still a little wet, but not congested. The medication will continue to improve this. She weighs 13lbs. and is 22.5” long, and is such a wiggle worm! She is definitely going to keep us on our toes.
Laura still needs the feeding tube, while she works on bottle feeding. This is a slow process, because she has a very sensitive gag reflex. Please pray that we will be successful with this."
In addition to the above information, Laura also had her stitches out yesterday. She did not enjoy this process. However, she did calm down once they were out.
Laura is much more active now. This is both fun and challenging. Challenging because we find our selves ducking and dodging legs and feet during diaper changes. Nothing like getting kicked while trying to change your daughter.
She smiles constantly, which just melts our hearts. The bottom line is that she is just to cool for words.
I could not think of a better way to present this information than how my wife, Tara, put it in an email earlier today. That is right, I am blatantly stealing from my wife.
"I cannot express how deeply thankful Marcus and I are to each of you for your prayers for Laura. We truly believe in the power of prayer.
Laura is doing very well. She had a great checkup yesterday with the cardiologist. Her lungs are still a little wet, but not congested. The medication will continue to improve this. She weighs 13lbs. and is 22.5” long, and is such a wiggle worm! She is definitely going to keep us on our toes.
Laura still needs the feeding tube, while she works on bottle feeding. This is a slow process, because she has a very sensitive gag reflex. Please pray that we will be successful with this."
In addition to the above information, Laura also had her stitches out yesterday. She did not enjoy this process. However, she did calm down once they were out.
Laura is much more active now. This is both fun and challenging. Challenging because we find our selves ducking and dodging legs and feet during diaper changes. Nothing like getting kicked while trying to change your daughter.
She smiles constantly, which just melts our hearts. The bottom line is that she is just to cool for words.
Monday, September 21, 2009
Home Sweet Home
Well we have been home now for three entire days and most of the afternoon last Thursday. What a relief. Laura is still on about 5 billion medications. Well not really just 5. Two are to help her heart pump a little easier (Lasiks twice a day and Captopril 3 times a day). She is also on asprin to help with blood pressure and zantac to try to control reflux. She also is is on Tylenol as needed for any residual pain from her heart surgery.
Short post today because I have to start getting us ready for her doctor's appointment. I will try to post more later.
Short post today because I have to start getting us ready for her doctor's appointment. I will try to post more later.
Thursday, September 10, 2009
The Bionic Child . . .
"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Ever since Laura's surgery was first described to us, I have pictured Steve Austin the Bionic man. I have repeatedly heard the narrator's commentary during the open sequence. He would generally say something like "We can rebuild him. We can make him faster, and stronger. We have the technology."
After seeing Laura yesterday with all of the tubes in her, that thought has been nothing but more prevalent. However, today they started removing those tubes. She still has many of them, but having two or three less makes it seem like she is almost back to normal. She still has many tubes in her (mostly to drain fluids that the body might excrete as a result of her surgery), but they continue to come out. The doctors think that they might transfer Laura from the C.V.I.C.U. tomorrow to the normal recovery floor.
What is really cool, is that she is already moving and squirming and wiggling like she was before the surgery. She actually started yesterday evening. The doctors are very impressed and proud of how quickly she is bouncing back. All I can say to this is, God is awesome.
Tara and I are very excited about this. You see we were worried that because of some unknown factor (bad reaction to a drug, defective bypass) that she might suffer brain damage, or some other set back, that would change her very sweet but inquisitive personality. That does not seem to be the case. Laura is responding to our voices and is trying to interact with her immediate environment. For those of you that have met Laura, you know that means that it will not be long before she figures out how to pull some of those tubes out herself. She is even making her normal noises. Her voice sounds a little horse, but that is not unexpected.
She once again has an N.G. tube for feeding. However, this will not be a permanent thing. We are anxious to be able to start bottle feeding her, so we can get rid of that thing. The C.V.I.C.U. doctors have taken her off of Morphine and put her on a different pain medication. It is not as strong as morphine, but it will be as tough on her stomach. They have also restarted her on the heart medications she was on before her surgery. They want to keep her lungs dry, and decrease her blood pressure so her heart will not have to work as hard. They have also started her on a kidney medication, to help her body naturally drain any excess fluids.
Overall, things continue to progress at a very good pace. I am hoping we will be able to bring Laura home Monday afternoon or evening.
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Ever since Laura's surgery was first described to us, I have pictured Steve Austin the Bionic man. I have repeatedly heard the narrator's commentary during the open sequence. He would generally say something like "We can rebuild him. We can make him faster, and stronger. We have the technology."
After seeing Laura yesterday with all of the tubes in her, that thought has been nothing but more prevalent. However, today they started removing those tubes. She still has many of them, but having two or three less makes it seem like she is almost back to normal. She still has many tubes in her (mostly to drain fluids that the body might excrete as a result of her surgery), but they continue to come out. The doctors think that they might transfer Laura from the C.V.I.C.U. tomorrow to the normal recovery floor.
What is really cool, is that she is already moving and squirming and wiggling like she was before the surgery. She actually started yesterday evening. The doctors are very impressed and proud of how quickly she is bouncing back. All I can say to this is, God is awesome.
Tara and I are very excited about this. You see we were worried that because of some unknown factor (bad reaction to a drug, defective bypass) that she might suffer brain damage, or some other set back, that would change her very sweet but inquisitive personality. That does not seem to be the case. Laura is responding to our voices and is trying to interact with her immediate environment. For those of you that have met Laura, you know that means that it will not be long before she figures out how to pull some of those tubes out herself. She is even making her normal noises. Her voice sounds a little horse, but that is not unexpected.
She once again has an N.G. tube for feeding. However, this will not be a permanent thing. We are anxious to be able to start bottle feeding her, so we can get rid of that thing. The C.V.I.C.U. doctors have taken her off of Morphine and put her on a different pain medication. It is not as strong as morphine, but it will be as tough on her stomach. They have also restarted her on the heart medications she was on before her surgery. They want to keep her lungs dry, and decrease her blood pressure so her heart will not have to work as hard. They have also started her on a kidney medication, to help her body naturally drain any excess fluids.
Overall, things continue to progress at a very good pace. I am hoping we will be able to bring Laura home Monday afternoon or evening.
Wednesday, September 9, 2009
Houston we have success . . .
"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Anybody who has known me for very long, knows that Houston Texas is not one of my favorite places. It is far to humid here. The only elevation change is some minor stuff that fluctuates between 50 feet below sea level, to 50 feet above sea level. For those that do not know the history of this town, it is built on a swamp that was converted to rice fields, then into what would become the 4th largest city in the United States of America.
Today, Houston is my favorite place in the whole wide world and all of Gods creation. One of Houston's greatest assets is the Houston Medical Center. Many of the hospitals there are ranked among the world leaders in their various specialties. When walking through any one of the hospitals, it is not uncommon to hear as many as 20 different languages and seemingly innumerable different dialects. People come from all over the world, to be treated at the various hospitals that make up the Houston Medical Center. Doctor's all over the world clamor for the opportunity to be considered for a position at one of these hospitals.
Texas Children's Hospital is among these elite organizations. They are consistently ranked among the best Childrens Hospitals in the world. We have already seen the dedication to caring and excellence once this year, when Laura was first born. Today, we it in action yet again.
At 7:00 am the surgical nurse came to get Laura for her open heart surgery, that was described in a previous post. At 8:00 am we said good bye to her, so that she could be prepped for surgery. We met with the anesthesiologist, surgeon and her cardiologist before her preparation began. 8:00 am began what can only be described as the most agonizingly long day ever.
At about 10:30 am the charge nurse came out, and told us that Laura was doing great and gave us an update on the surgery. She would do this every two hours up to about 3:00 or 3:30 pm. After that time, it would be up to either the surgical nurse or the surgeon himself to give us updates. Each update was like a little nugget of hope, sunshine, gold and dark chocolate all rolled into one. Unfortunately, it also meant another 2 hours before the next update.
At 4:30 pm we were told that Dr. Morales (the surgeon) would want to meet with us. We met about 4:50 or so. He told us that the operation went beautifully and that Laura was doing fine. She would be heading up to the I.C.U., and after that we would be able to see her. We finally got in to see her at about 6:00 pm. I had been preparing myself for a sight that would have covered her entire body in wires and tubes. I had convinced myself that only a little face and hands to be seen. When we saw her it was not nearly as bad as I thought (I kept flashing to Obi-Wan's description of Vader being more machine than man). However, it was still a little disturbing to see all of those wires and tubes running in and out of her. But none the less, there she was. Out like a light. Beautiful.
There were many tears this evening. Some from everyone who was there, and I am sure many more from those who were not. Thank you all for your prayers, kind words of encouragement, gifts, thoughts and support. It has meant the world to Tara, myself and Laura's grandparents. We will never be able to express how much each of you have meant to us during this ordeal. Thank you.
Some of you are probably wondering what is next. This is how I understand it. Each of those wires and tubes is hooked up to something that is helping Laura function. Over the next 24 hours they will begin to scale down that support for her (as she can tolerate it) with the goal being to have Laura functioning on her own. After that, she will remain in the I.C.U. for another day or two for observation. From there, they will send her to the recovery ward (if that is what you still want to call it) where Tara and I, and Laura's grandparents will learn how to care for a 12 week old who has just had open heart surgery. Ideally, she will only be there for a few days. After that she gets to come home. For three to five more weeks she will be pretty much isolated at home (not counting doctor's appointments) until she is properly healed and her immune system is strengthened. Then, with her cardiologist permission, it is back to life as normal.
Today I love this town, and there is no place I would rather be.
Folks, I am telling you prayer works. Laura is living proof of that simple statement. Again, thank you all.
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Anybody who has known me for very long, knows that Houston Texas is not one of my favorite places. It is far to humid here. The only elevation change is some minor stuff that fluctuates between 50 feet below sea level, to 50 feet above sea level. For those that do not know the history of this town, it is built on a swamp that was converted to rice fields, then into what would become the 4th largest city in the United States of America.
Today, Houston is my favorite place in the whole wide world and all of Gods creation. One of Houston's greatest assets is the Houston Medical Center. Many of the hospitals there are ranked among the world leaders in their various specialties. When walking through any one of the hospitals, it is not uncommon to hear as many as 20 different languages and seemingly innumerable different dialects. People come from all over the world, to be treated at the various hospitals that make up the Houston Medical Center. Doctor's all over the world clamor for the opportunity to be considered for a position at one of these hospitals.
Texas Children's Hospital is among these elite organizations. They are consistently ranked among the best Childrens Hospitals in the world. We have already seen the dedication to caring and excellence once this year, when Laura was first born. Today, we it in action yet again.
At 7:00 am the surgical nurse came to get Laura for her open heart surgery, that was described in a previous post. At 8:00 am we said good bye to her, so that she could be prepped for surgery. We met with the anesthesiologist, surgeon and her cardiologist before her preparation began. 8:00 am began what can only be described as the most agonizingly long day ever.
At about 10:30 am the charge nurse came out, and told us that Laura was doing great and gave us an update on the surgery. She would do this every two hours up to about 3:00 or 3:30 pm. After that time, it would be up to either the surgical nurse or the surgeon himself to give us updates. Each update was like a little nugget of hope, sunshine, gold and dark chocolate all rolled into one. Unfortunately, it also meant another 2 hours before the next update.
At 4:30 pm we were told that Dr. Morales (the surgeon) would want to meet with us. We met about 4:50 or so. He told us that the operation went beautifully and that Laura was doing fine. She would be heading up to the I.C.U., and after that we would be able to see her. We finally got in to see her at about 6:00 pm. I had been preparing myself for a sight that would have covered her entire body in wires and tubes. I had convinced myself that only a little face and hands to be seen. When we saw her it was not nearly as bad as I thought (I kept flashing to Obi-Wan's description of Vader being more machine than man). However, it was still a little disturbing to see all of those wires and tubes running in and out of her. But none the less, there she was. Out like a light. Beautiful.
There were many tears this evening. Some from everyone who was there, and I am sure many more from those who were not. Thank you all for your prayers, kind words of encouragement, gifts, thoughts and support. It has meant the world to Tara, myself and Laura's grandparents. We will never be able to express how much each of you have meant to us during this ordeal. Thank you.
Some of you are probably wondering what is next. This is how I understand it. Each of those wires and tubes is hooked up to something that is helping Laura function. Over the next 24 hours they will begin to scale down that support for her (as she can tolerate it) with the goal being to have Laura functioning on her own. After that, she will remain in the I.C.U. for another day or two for observation. From there, they will send her to the recovery ward (if that is what you still want to call it) where Tara and I, and Laura's grandparents will learn how to care for a 12 week old who has just had open heart surgery. Ideally, she will only be there for a few days. After that she gets to come home. For three to five more weeks she will be pretty much isolated at home (not counting doctor's appointments) until she is properly healed and her immune system is strengthened. Then, with her cardiologist permission, it is back to life as normal.
Today I love this town, and there is no place I would rather be.
Folks, I am telling you prayer works. Laura is living proof of that simple statement. Again, thank you all.
Tuesday, September 8, 2009
Ladies & Gentlemen start your waiting
"trust in the Lord with all ofyoir heart and lean not on your own understanding in all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Well it is 9:30 pm on Tuesday September 8th. We have been at TCH since 7:30 am. Wehave been in our room since about 2:00 pm. Needless to say we are exhausted. Laura has come through it all like a champ. I wish I had her stamina, strength and ability to sleep at less than a moments notice.
She has had a trying day today. She went through the normal weight (over 12 pounds), length (over 22 inches) and pulse when we checked in. She also had her blood oxygen level checked. This not unusual for her. We then had to have blood drawn. This was not fun, to say the least. It took three nurses and over an hour to draw the needed blood. Laura was not a happy camper. The rest of the testing went well. X-Ray, EKG, more blood oxygen levels all went smoothly. We even got to have lunch.
At about 2:00 pm we were admitted to the hospital. We are first up for surgery tomorrow at 8:00 am. They will come and get her to prep her for the surgery at 7:00 am. This means another early day tomorrow (we were up at 5:30 am today). I am not looking forward to that time.
Please keep praying for Laura, her various medical teams and her family. We all need it.
Good night.
Proverbs 3; 6 - 6
Well it is 9:30 pm on Tuesday September 8th. We have been at TCH since 7:30 am. Wehave been in our room since about 2:00 pm. Needless to say we are exhausted. Laura has come through it all like a champ. I wish I had her stamina, strength and ability to sleep at less than a moments notice.
She has had a trying day today. She went through the normal weight (over 12 pounds), length (over 22 inches) and pulse when we checked in. She also had her blood oxygen level checked. This not unusual for her. We then had to have blood drawn. This was not fun, to say the least. It took three nurses and over an hour to draw the needed blood. Laura was not a happy camper. The rest of the testing went well. X-Ray, EKG, more blood oxygen levels all went smoothly. We even got to have lunch.
At about 2:00 pm we were admitted to the hospital. We are first up for surgery tomorrow at 8:00 am. They will come and get her to prep her for the surgery at 7:00 am. This means another early day tomorrow (we were up at 5:30 am today). I am not looking forward to that time.
Please keep praying for Laura, her various medical teams and her family. We all need it.
Good night.
Monday, September 7, 2009
Unto the breech we charge
It is all in God's hands.
It is all in God's hands.
It is all in God's hands.
As we get closer and closer to Laura's surgery date (which is Wednesday September 9th), I find myself repeating this more and more. Several days ago I was fine with everything that is going to happen. As we get closer and closer I become less sure that I can handle this.
For anyone who does not know, Laura is having open heart surgery. She has what the doctors have called a Balanced A/V Canal defect in her heart. What this means is that in her heart, the wall that seperates the two atriums did not fully form. Neither did the wall the sepreates her two ventricles. As a result of this situation, Laura only has one valve in her heart instead of two. This means that she has increased blood flow to her lungs (which causes fluid to build up on them), and decreased blood flow to her body. This is because the body is a high pressure system and the lungs are a low pressure system. Blood being a liquid, will always take the path of least resistance. Fortunately, this is repairable with surgery.
So here is the scenario. Tomorrow morning (Tuesday September 8th) we will arrive at Texas Childrens Hospital at an unreasably aerly time of between 7:30 am and 8:00 am to begin her final check and screen. The Marcus is not happy about this early start. He may have to hold his breath and stomp his feeet tomorrow. After all the tests are completed we will get to wait (and hopefully eat lunch). After the waiting is over we will meet with the doctor and go over the test results. If everything looks good Laura will be admitted to the hospital tomorrow afternoon or evening. She will no longer be allowed to feed after midnight, but she will be hooked up to an IV. Wednesday she will have her surgery. All we know about when the surgery is, is that surgeries generally start at 8:00 am. That does not help as many people ask us what time her surgery is and all we can do is shrug and tell them after 8:00 am.
The surgery will go like this. The surgoen will make an incision along her breast bone. Then he will sperate the sternum (breast bone). Next he will cut the skin like material that is under the breast bone. This will expose her heart and lungs.
At this point the surgoen will hook Laura up to a heart and lung machine. After that he will stop her herat and lungs. From there he will open Laura's heart and get his first true good look at what he has to work with. X-ray's and echo's and the like are great for getting an idea of what is going on, but they really only reveal shadows. Once the surgoen opens her up he will make his final decision on what to do next.
Our preferred soluthion is that he repair the defect. However, if he feels that there is not yet enough material in the existing valve to build two valves we will opt to place a band on the vein that flows from Laura's heart to her lungs. This will have the effect of creating a high pressure system that blood has to flow through to get to the lungs. This will also increase her blood flow to her body. He will then close up her heart, resart the her heart and lungs and take her off of the heart and lung machine. From there he will close the incision in the skin like material, close her sternum and finally close up her skin. This is a stop gap messure. If this route is taken then Laura will still have to have the surgery to fix her heart in the future.
So how is the surgery going to work (if it can be done)? If the surgoen decides that there is enouigh material to build two valves from one, then that is where he will begin. After he builds the valves he will repair the the two walls. He will do this by taking some of the skin like material under her rib cage and using it to complete the walls. He will then close up her heart, restart her heart and lungs and take her off of the heart and lung machine. Fromt there, he will close the inciesion in the skin like material, close her sturenum and finally close up her skin. If all of this is able to be done, then she will be fine. There will be regular checkups with her cardiologist, but there should be no further need for surgery.
As good as the team at Texas Children's is, there are risks. Laura could get bumped for an emergency case. That means we would have to reschedule everything and go through all of this aghain at a later date. Not a possibility that I am happy about. Laura could be bumped even after she is sedated and into the operating room (as long as no incisions have been made).
Laura could die. This is open herat surgery on a child that is less than three months old. Things are small. There are any number of things that could go wrong.
There could be a problem with the heart and lung machine, that could result in permanent brain damage. These are scary to contimplate, but they are very real riskes.
For those who have been wondering why there have not been any updates the last few weeks, that is my fault. Some how it seemed like if I wrote about it, Laura's surgery would some how become more real, and that our worst fears might be realized. Feelings similar to what we went through back in March, are statring to become more common. So please pray for Dr. Morales (the surgoen) and his team, the staff at Texas Childrens Hostpital, Laura and her family, and anyone else who is going to be involved in all of this. We could all really use it.
Thank you.
It is all in God's hands.
It is all in God's hands.
As we get closer and closer to Laura's surgery date (which is Wednesday September 9th), I find myself repeating this more and more. Several days ago I was fine with everything that is going to happen. As we get closer and closer I become less sure that I can handle this.
For anyone who does not know, Laura is having open heart surgery. She has what the doctors have called a Balanced A/V Canal defect in her heart. What this means is that in her heart, the wall that seperates the two atriums did not fully form. Neither did the wall the sepreates her two ventricles. As a result of this situation, Laura only has one valve in her heart instead of two. This means that she has increased blood flow to her lungs (which causes fluid to build up on them), and decreased blood flow to her body. This is because the body is a high pressure system and the lungs are a low pressure system. Blood being a liquid, will always take the path of least resistance. Fortunately, this is repairable with surgery.
So here is the scenario. Tomorrow morning (Tuesday September 8th) we will arrive at Texas Childrens Hospital at an unreasably aerly time of between 7:30 am and 8:00 am to begin her final check and screen. The Marcus is not happy about this early start. He may have to hold his breath and stomp his feeet tomorrow. After all the tests are completed we will get to wait (and hopefully eat lunch). After the waiting is over we will meet with the doctor and go over the test results. If everything looks good Laura will be admitted to the hospital tomorrow afternoon or evening. She will no longer be allowed to feed after midnight, but she will be hooked up to an IV. Wednesday she will have her surgery. All we know about when the surgery is, is that surgeries generally start at 8:00 am. That does not help as many people ask us what time her surgery is and all we can do is shrug and tell them after 8:00 am.
The surgery will go like this. The surgoen will make an incision along her breast bone. Then he will sperate the sternum (breast bone). Next he will cut the skin like material that is under the breast bone. This will expose her heart and lungs.
At this point the surgoen will hook Laura up to a heart and lung machine. After that he will stop her herat and lungs. From there he will open Laura's heart and get his first true good look at what he has to work with. X-ray's and echo's and the like are great for getting an idea of what is going on, but they really only reveal shadows. Once the surgoen opens her up he will make his final decision on what to do next.
Our preferred soluthion is that he repair the defect. However, if he feels that there is not yet enough material in the existing valve to build two valves we will opt to place a band on the vein that flows from Laura's heart to her lungs. This will have the effect of creating a high pressure system that blood has to flow through to get to the lungs. This will also increase her blood flow to her body. He will then close up her heart, resart the her heart and lungs and take her off of the heart and lung machine. From there he will close the incision in the skin like material, close her sternum and finally close up her skin. This is a stop gap messure. If this route is taken then Laura will still have to have the surgery to fix her heart in the future.
So how is the surgery going to work (if it can be done)? If the surgoen decides that there is enouigh material to build two valves from one, then that is where he will begin. After he builds the valves he will repair the the two walls. He will do this by taking some of the skin like material under her rib cage and using it to complete the walls. He will then close up her heart, restart her heart and lungs and take her off of the heart and lung machine. Fromt there, he will close the inciesion in the skin like material, close her sturenum and finally close up her skin. If all of this is able to be done, then she will be fine. There will be regular checkups with her cardiologist, but there should be no further need for surgery.
As good as the team at Texas Children's is, there are risks. Laura could get bumped for an emergency case. That means we would have to reschedule everything and go through all of this aghain at a later date. Not a possibility that I am happy about. Laura could be bumped even after she is sedated and into the operating room (as long as no incisions have been made).
Laura could die. This is open herat surgery on a child that is less than three months old. Things are small. There are any number of things that could go wrong.
There could be a problem with the heart and lung machine, that could result in permanent brain damage. These are scary to contimplate, but they are very real riskes.
For those who have been wondering why there have not been any updates the last few weeks, that is my fault. Some how it seemed like if I wrote about it, Laura's surgery would some how become more real, and that our worst fears might be realized. Feelings similar to what we went through back in March, are statring to become more common. So please pray for Dr. Morales (the surgoen) and his team, the staff at Texas Childrens Hostpital, Laura and her family, and anyone else who is going to be involved in all of this. We could all really use it.
Thank you.
Friday, August 21, 2009
Fear and Thanks
"... The Lord is my rock and my fortress and my deliverer;
My God, my rock, in whom I take refuge,
My shield and the horn of my salvation, my stronghold and my refuge;
My savior, You save me from violence.
I call upon the Lord, who is worthy to be praised ..."
2 Samuel 22: 2-4
Well it is several days later, and Tara and I are still struggling with Laura having to go through open heart surgery on September 9, 2009. It is what we have talked about most since Tuesday morning. When the date was finalized we were both gripped with a near overwhelming fear that our Laura would not survive the surgery. That God would choose to call her home during the surgery. We know God is working in this situation. We have seen it in the way everyone we know has prayed, offered words of comfort and basically rallied around our precious angel. But we are still scared.
In the last few days we have each had conversations with people who have either been through what we are going through, or are going through something similar. This has been a huge comfort for us. We see Gad is watching over Laura and Tara and I. We know he will not let anything happen that we cannot handle. It is just hard to work through all of this, when we have a date for her surgery that is just three weeks away. She will not even be three months old at the time her surgery is done.
The flip side is, that Tara and I cannot believe that God has given the doctors and surgeons the knowledge and skills necessary to work on a heart that is so very small delicate. We now see that He has kept us here in Houston for this reason. This is the best place in the world for Laura. For that we are grateful as well. That last bit was hard to write, for as many of you know we want to move out of this city in a bad way.
We are so blessed to have friends, family and coworkers that care about us and our daughter so deeply. At REI many of my coworkers either have already, or are planning to, donate sick/vacation time to me, so I can be off for her surgery and still get paid. At Second Baptist, they are allowing Laura to stay in Tara's office, so that Laura can have a further reduced chance of getting sick before the surgery. Your emails and prayers the last few days have meant the world to us. Thank you.
My God, my rock, in whom I take refuge,
My shield and the horn of my salvation, my stronghold and my refuge;
My savior, You save me from violence.
I call upon the Lord, who is worthy to be praised ..."
2 Samuel 22: 2-4
Well it is several days later, and Tara and I are still struggling with Laura having to go through open heart surgery on September 9, 2009. It is what we have talked about most since Tuesday morning. When the date was finalized we were both gripped with a near overwhelming fear that our Laura would not survive the surgery. That God would choose to call her home during the surgery. We know God is working in this situation. We have seen it in the way everyone we know has prayed, offered words of comfort and basically rallied around our precious angel. But we are still scared.
In the last few days we have each had conversations with people who have either been through what we are going through, or are going through something similar. This has been a huge comfort for us. We see Gad is watching over Laura and Tara and I. We know he will not let anything happen that we cannot handle. It is just hard to work through all of this, when we have a date for her surgery that is just three weeks away. She will not even be three months old at the time her surgery is done.
The flip side is, that Tara and I cannot believe that God has given the doctors and surgeons the knowledge and skills necessary to work on a heart that is so very small delicate. We now see that He has kept us here in Houston for this reason. This is the best place in the world for Laura. For that we are grateful as well. That last bit was hard to write, for as many of you know we want to move out of this city in a bad way.
We are so blessed to have friends, family and coworkers that care about us and our daughter so deeply. At REI many of my coworkers either have already, or are planning to, donate sick/vacation time to me, so I can be off for her surgery and still get paid. At Second Baptist, they are allowing Laura to stay in Tara's office, so that Laura can have a further reduced chance of getting sick before the surgery. Your emails and prayers the last few days have meant the world to us. Thank you.
Tuesday, August 18, 2009
Updates and surgery
"... The Lord is my rock and my fortress and my deliverer;
My God, my rock, in whom I take refuge,
My shield and the horn of my salvation, my stronghold and my refuge;
My savior, You save me from violence.
I call upon the Lord, who is worthy to be praised ..."
2 Samuel 22: 2-4
Well it is about 10:30 pm on Tuesday August 18. It has been an interesting day. Actually it started yesterday. Tara and Laura went in for a follow up appointment. Dr. Macicek upped Laura's medications, and her food intake. He upped her food intake because he did not want Laura to plateau in her growth and weight gain before her surgery. He upped her medications because of how she is breathing.
The breathing issue brings us to the test results from from last week. Although everything looked fine, they did see some fluid on Laura's lungs. Dr. Maccicek is hoping that by upping Laura's medication we can get a grasp on the fluids on her lungs if he can. The other purpose of all of the tests that they ran on Laura, last week, was to establish a base line for her. This will be important when the doctors do a pre-op. exam and screen. Dr. Macicek did say that Laura's breathing is more shallow and rapid, but that she still seems to be getting plenty of air. He also said her heart is beating a little faster, but for now she appears to be able to handle it ok. So overall, a good report.
What a difference a day makes. This morning about 9:00 am we received a phone call from Texas Children's Hospital. They have scheduled us to have a consultation visit with Dr. Morales to discuss Laura's open heart surgery. This will be Tuesday September 1, 2009 at 2:00 pm. At this point we will discuss the procedure in some detail. We have been warned that this will likely scare us.
Then, on September 8 (a week later) we will go back to TCH for the pre-op exam and screen. This is done to make sure Laura is not sick and is healthy enough to have the surgery. Then we will be told to go to lunch. After lunch, we will meet back up with the doctors to discuss the results of the exam and screen. If everything looks good, Laura will be admitted that afternoon to Texas Children's Hospital. Currently, it is expected that Laura will have her surgery on Wednesday September 9, 2009. I do not know how long she will be in the hospital. It is expected that she will be unable to go anywhere other than home and doctors appointments for eight weeks after her surgery.
To have Laura's surgery upon us already threw me this morning. I called Tara at work, and let her know. I spent most of the day in one state of being scared or another. Yes we knew it was coming, but it is still terrifying to me to know that my 2 month old daughter is going to have open heart surgery before she is 3 months old. That just cannot be right. To have it put right there in front of you, that there is nothing you can do to help your child except hope and pray that everything goes well is not easy to deal with. I found myself praying off and on all day. I still have not settled down completely. Tara is doing better than I am. Laura seems fine with it as long as she gets held, fed and changed.
So that is the latest. We need all of your prayers. Please pray that Laura remains healthy and strong as we all go through this process the next few months. Please pray for the surgical team, that they do great work, that there are no complications and that God continues to bless them with great talent. Please pray for the post-op team that will watch over Laura after the surgery, that they take great care of our angel. Lastly, please pray for Laura’s parents and grandparents. We all knew this was coming. But now it is here, and in our own ways we are having a hard time with it. We are scared, we are excited to get the surgery done and begin to move to life after surgery, we are all experiencing many other emotions in our own way. The bottom line is, we need you all.
This next bit is for any and all REI employees that read this blog. You may or may not have known that while REI honors the Family Medical Leave Act, for hourly employees (such as myself) it is unpaid leave. I am anticipating being on leave under the FMLA for at least 4 weeks starting Monday September 7. As I used up almost all of my vacation and sick time after Laura's birth, this means I will be unpaid during my leave. I am asking that if any REI employees have any sick or vacation time they would not mind donating I could sure use them. If you are interested in donating some time please contact Deena Kreitz, Nick Curtis, Paul Houston or Michael McCoy at the Houston Galleria store (store # 55) and let them know. I am sure they will need your employee number. Thank you for your help.
My God, my rock, in whom I take refuge,
My shield and the horn of my salvation, my stronghold and my refuge;
My savior, You save me from violence.
I call upon the Lord, who is worthy to be praised ..."
2 Samuel 22: 2-4
Well it is about 10:30 pm on Tuesday August 18. It has been an interesting day. Actually it started yesterday. Tara and Laura went in for a follow up appointment. Dr. Macicek upped Laura's medications, and her food intake. He upped her food intake because he did not want Laura to plateau in her growth and weight gain before her surgery. He upped her medications because of how she is breathing.
The breathing issue brings us to the test results from from last week. Although everything looked fine, they did see some fluid on Laura's lungs. Dr. Maccicek is hoping that by upping Laura's medication we can get a grasp on the fluids on her lungs if he can. The other purpose of all of the tests that they ran on Laura, last week, was to establish a base line for her. This will be important when the doctors do a pre-op. exam and screen. Dr. Macicek did say that Laura's breathing is more shallow and rapid, but that she still seems to be getting plenty of air. He also said her heart is beating a little faster, but for now she appears to be able to handle it ok. So overall, a good report.
What a difference a day makes. This morning about 9:00 am we received a phone call from Texas Children's Hospital. They have scheduled us to have a consultation visit with Dr. Morales to discuss Laura's open heart surgery. This will be Tuesday September 1, 2009 at 2:00 pm. At this point we will discuss the procedure in some detail. We have been warned that this will likely scare us.
Then, on September 8 (a week later) we will go back to TCH for the pre-op exam and screen. This is done to make sure Laura is not sick and is healthy enough to have the surgery. Then we will be told to go to lunch. After lunch, we will meet back up with the doctors to discuss the results of the exam and screen. If everything looks good, Laura will be admitted that afternoon to Texas Children's Hospital. Currently, it is expected that Laura will have her surgery on Wednesday September 9, 2009. I do not know how long she will be in the hospital. It is expected that she will be unable to go anywhere other than home and doctors appointments for eight weeks after her surgery.
To have Laura's surgery upon us already threw me this morning. I called Tara at work, and let her know. I spent most of the day in one state of being scared or another. Yes we knew it was coming, but it is still terrifying to me to know that my 2 month old daughter is going to have open heart surgery before she is 3 months old. That just cannot be right. To have it put right there in front of you, that there is nothing you can do to help your child except hope and pray that everything goes well is not easy to deal with. I found myself praying off and on all day. I still have not settled down completely. Tara is doing better than I am. Laura seems fine with it as long as she gets held, fed and changed.
So that is the latest. We need all of your prayers. Please pray that Laura remains healthy and strong as we all go through this process the next few months. Please pray for the surgical team, that they do great work, that there are no complications and that God continues to bless them with great talent. Please pray for the post-op team that will watch over Laura after the surgery, that they take great care of our angel. Lastly, please pray for Laura’s parents and grandparents. We all knew this was coming. But now it is here, and in our own ways we are having a hard time with it. We are scared, we are excited to get the surgery done and begin to move to life after surgery, we are all experiencing many other emotions in our own way. The bottom line is, we need you all.
This next bit is for any and all REI employees that read this blog. You may or may not have known that while REI honors the Family Medical Leave Act, for hourly employees (such as myself) it is unpaid leave. I am anticipating being on leave under the FMLA for at least 4 weeks starting Monday September 7. As I used up almost all of my vacation and sick time after Laura's birth, this means I will be unpaid during my leave. I am asking that if any REI employees have any sick or vacation time they would not mind donating I could sure use them. If you are interested in donating some time please contact Deena Kreitz, Nick Curtis, Paul Houston or Michael McCoy at the Houston Galleria store (store # 55) and let them know. I am sure they will need your employee number. Thank you for your help.
Saturday, August 15, 2009
Stage 2 is now complete. The stage in review
"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well it is Saturday and we have survived stage two of the crucible. Tara and I are tired. Laura is still going strong.
If my grammar and word choice is off, I apologize now. It is 7:30 am, and as most of you know, I am not exactly a morning person. In the mornings I am not very pleasant. I am liable to growl at you just for having the nerve to be in the same zip code as I am. On top of that, the brain does not work very well for the first couple of hours after I wake up. It feels fuzzy and sluggish. No, eating something with protein does not help. Sometimes a shower does, but not all the time. As an example, after getting Laura's bottle ready this morning I decided I needed a glass of water for myself. So I went in to the kitchen to get it. I looked around and could not find my glass. I looked for it in our living room and our bed room. Nothing. So fearing the worst (it had disappeared in to some alternate dimension that my SciFi loving brain had cooked up) I asked Tara if the dishes in the dish washer were clean or dirty. She said they were dirty, and then reminded me that I had emptied the clean dishes a couple of days ago. All I could think of is how rude she was to speak.
Yup being a non morning person is great. I am just glad that Tara is not much of a morning person, and that Laura appears to be following our lead. It makes things a little easier since we are all on the same page when we get up. That being, who ever invented the idea that we had to rise with the sun should be taken out beaten, drawn and quarted, tarred and feathers, have bamboo stacks shoved under their finger nails, sit and listen to someone drag finger nails across a chalk board and then shot. And that would be the first stage of punishment.
I really do not like the mornings or morning people. When I was growing up my dad would wake me up on a Saturday and tell me day light was a wasting and that I needed to brush my teeth and then come down and eat breakfast. A grumbling, grouchy teenager who just wanted to sleep was beyond his comprehension. Took make matters worse, if my grandparents were in town, I was not even afforded the ability to sleep to 9:00 am. Paw-paw (my grandfather) would get me up at 6:00 am to help him with some project around the house. It was incomprehensible to him that I would want to sleep past that time. If I did not get up he would make my life miserable until I did get up. My father apparently enjoyed this, as he would sleep until 8:00 am, then put on his bathrobe, get a cup of coffee and come smiling to see what we were doing. His smug expression really pissed me off. He really enjoyed it (he is probably reading this and smiling).
Let see, this was the week of doctors and birthdays. The doctor visits all went well. Dr. Pielop, our pediatrician, is very pleased with where Laura is and how she is progressing. He also gave Laura her two month shots. She seemed handle them with out to much trouble. She cried a little, but the rest of the day she seemed fine.
Our cardiologist, Dr. Macicek, started Laura on a new medication that is in addition to the Lasiks. This medication will help lower Laura's blood pressure, so her heart does not have to work as hard to push blood through her system. This new medication, called Captopril, is the second in the cascade of medications that she will be on before her heart surgery. Laura gets both the Lasiks and Captopril every 8 hours.
Dr. Macicek has said that Laura will likely have her heart surgery in September. This is not written in stone, but he wants to get Laura onto the surgeons radar. this was not surprise to Tara and I since Laura's breathing has changed in our opinions. She also seems to start labor more quickly when she feeding or we are working with her.
Tara started back to work Thursday. She said it was very hard for her. We are lucky that Second Baptist has a day care program for their employees. However, not everyone get is. There are a limited number of spots for each class. A new class is formed each year for the newborns, and that is it. We got the last spot for this years class. Laura's class is down the hall from where Tara works, and is in the same building. This is great, because Tara and Laura are so close together. We are very lucky to have access to such a program
Tara has said it is hard for her to leave Laura's room and go to work. She would rather stay with Laura. I cannot blame her for that. I found that I was very bothered
Thursday by the fact that all of my girls were not home (our dachshund Jenna obviously opted to stay home). I have met and trust the folks up at Second that are taking care of Laura. They do a great job. They are very sweet and loving. They are excited to learn how to care for Laura with her special issues. It just sucks that Laura and Tara are not home. Something about them being here, even when I am at work is reassuring to me. So Thursday I had a hard time as well.
Tara has loved getting to show Laura off. Who can blame Tara. Laura is beautiful. From Tara's descriptions, I would say Laura is the most popular person at Second for now. This is as it should be.
Thursday was Laura's Grammy's (Tara's mother) birthday. We took Grammy to a restaurant that we all like. Laura had a good time. She got to eat with us (more or less) through her feeding tube. I spent about 20 minutes with my hand in the air holding the tube up so that gravity could do its job. I felt like should be in a class room trying to ask the teacher a question. We all (there were 5 of us) spent most of the time sitting and staring at Laura. I cannot figure out why?
Tara, Laura and I went to see The Ugly Truth. This was a truly funny movie. I would caution that there is allot of fowl language and blatant discussions of sex, but a fun movie for a married couple to go see on a date night.
We are now on the down hill trek of the crucible. For the remainder of August, the birthdays are more spread out. There are also fewer doctors appointments. We are hoping to get a little better routine established by the end of the month.
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well it is Saturday and we have survived stage two of the crucible. Tara and I are tired. Laura is still going strong.
If my grammar and word choice is off, I apologize now. It is 7:30 am, and as most of you know, I am not exactly a morning person. In the mornings I am not very pleasant. I am liable to growl at you just for having the nerve to be in the same zip code as I am. On top of that, the brain does not work very well for the first couple of hours after I wake up. It feels fuzzy and sluggish. No, eating something with protein does not help. Sometimes a shower does, but not all the time. As an example, after getting Laura's bottle ready this morning I decided I needed a glass of water for myself. So I went in to the kitchen to get it. I looked around and could not find my glass. I looked for it in our living room and our bed room. Nothing. So fearing the worst (it had disappeared in to some alternate dimension that my SciFi loving brain had cooked up) I asked Tara if the dishes in the dish washer were clean or dirty. She said they were dirty, and then reminded me that I had emptied the clean dishes a couple of days ago. All I could think of is how rude she was to speak.
Yup being a non morning person is great. I am just glad that Tara is not much of a morning person, and that Laura appears to be following our lead. It makes things a little easier since we are all on the same page when we get up. That being, who ever invented the idea that we had to rise with the sun should be taken out beaten, drawn and quarted, tarred and feathers, have bamboo stacks shoved under their finger nails, sit and listen to someone drag finger nails across a chalk board and then shot. And that would be the first stage of punishment.
I really do not like the mornings or morning people. When I was growing up my dad would wake me up on a Saturday and tell me day light was a wasting and that I needed to brush my teeth and then come down and eat breakfast. A grumbling, grouchy teenager who just wanted to sleep was beyond his comprehension. Took make matters worse, if my grandparents were in town, I was not even afforded the ability to sleep to 9:00 am. Paw-paw (my grandfather) would get me up at 6:00 am to help him with some project around the house. It was incomprehensible to him that I would want to sleep past that time. If I did not get up he would make my life miserable until I did get up. My father apparently enjoyed this, as he would sleep until 8:00 am, then put on his bathrobe, get a cup of coffee and come smiling to see what we were doing. His smug expression really pissed me off. He really enjoyed it (he is probably reading this and smiling).
Let see, this was the week of doctors and birthdays. The doctor visits all went well. Dr. Pielop, our pediatrician, is very pleased with where Laura is and how she is progressing. He also gave Laura her two month shots. She seemed handle them with out to much trouble. She cried a little, but the rest of the day she seemed fine.
Our cardiologist, Dr. Macicek, started Laura on a new medication that is in addition to the Lasiks. This medication will help lower Laura's blood pressure, so her heart does not have to work as hard to push blood through her system. This new medication, called Captopril, is the second in the cascade of medications that she will be on before her heart surgery. Laura gets both the Lasiks and Captopril every 8 hours.
Dr. Macicek has said that Laura will likely have her heart surgery in September. This is not written in stone, but he wants to get Laura onto the surgeons radar. this was not surprise to Tara and I since Laura's breathing has changed in our opinions. She also seems to start labor more quickly when she feeding or we are working with her.
Tara started back to work Thursday. She said it was very hard for her. We are lucky that Second Baptist has a day care program for their employees. However, not everyone get is. There are a limited number of spots for each class. A new class is formed each year for the newborns, and that is it. We got the last spot for this years class. Laura's class is down the hall from where Tara works, and is in the same building. This is great, because Tara and Laura are so close together. We are very lucky to have access to such a program
Tara has said it is hard for her to leave Laura's room and go to work. She would rather stay with Laura. I cannot blame her for that. I found that I was very bothered
Thursday by the fact that all of my girls were not home (our dachshund Jenna obviously opted to stay home). I have met and trust the folks up at Second that are taking care of Laura. They do a great job. They are very sweet and loving. They are excited to learn how to care for Laura with her special issues. It just sucks that Laura and Tara are not home. Something about them being here, even when I am at work is reassuring to me. So Thursday I had a hard time as well.Tara has loved getting to show Laura off. Who can blame Tara. Laura is beautiful. From Tara's descriptions, I would say Laura is the most popular person at Second for now. This is as it should be.
Thursday was Laura's Grammy's (Tara's mother) birthday. We took Grammy to a restaurant that we all like. Laura had a good time. She got to eat with us (more or less) through her feeding tube. I spent about 20 minutes with my hand in the air holding the tube up so that gravity could do its job. I felt like should be in a class room trying to ask the teacher a question. We all (there were 5 of us) spent most of the time sitting and staring at Laura. I cannot figure out why?
Tara, Laura and I went to see The Ugly Truth. This was a truly funny movie. I would caution that there is allot of fowl language and blatant discussions of sex, but a fun movie for a married couple to go see on a date night.
We are now on the down hill trek of the crucible. For the remainder of August, the birthdays are more spread out. There are also fewer doctors appointments. We are hoping to get a little better routine established by the end of the month.
Wednesday, August 12, 2009
A new of medication
"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well as stated in my previous post, we had an appointment to see Laura's Cardiologist today. Overall, it went as we were expecting.
They did an x-ray, an E.K.G. and an Eco cardiogram. We should get these results sometime next week. The purpose of them was to establish a base line for Laura.
We also added a new medication. This one is called Captopril. It will continue to help with Laura's breathing and fluid build up on her lungs. It will be administered every 8 hours. We are also moving the Lasiks up to once every 8 hours.
Tara asked about Laura's weight gain. Dr. Maciek said that the slow down maybe caused by Laura starting to burn more calories. This result is not unexpected, and is why we were going with a richer formula at her feedings in addition to breast milk.
This has caused Dr. Maciek to want to see Laura next Monday for a follow up. He wants to see how she is doing on the new medication.
All of this caused Dr. Maciek to call in the attending doctor at Texas Children's Hospital (this is common). It is their opinion that Laura's Heart surgery will likely be in September. They felt that she is progressing faster than they thought she would. Again this is not a surprise or unexpected. Tara and I have been wondering if Laura was moving along quickly. So, while we would have chosen not to have to go through this at all, we are glad it looks like the surgery will happen sooner rather than later.
We are hoping to have more information after the follow up on Monday.
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well as stated in my previous post, we had an appointment to see Laura's Cardiologist today. Overall, it went as we were expecting.
They did an x-ray, an E.K.G. and an Eco cardiogram. We should get these results sometime next week. The purpose of them was to establish a base line for Laura.
We also added a new medication. This one is called Captopril. It will continue to help with Laura's breathing and fluid build up on her lungs. It will be administered every 8 hours. We are also moving the Lasiks up to once every 8 hours.
Tara asked about Laura's weight gain. Dr. Maciek said that the slow down maybe caused by Laura starting to burn more calories. This result is not unexpected, and is why we were going with a richer formula at her feedings in addition to breast milk.
This has caused Dr. Maciek to want to see Laura next Monday for a follow up. He wants to see how she is doing on the new medication.
All of this caused Dr. Maciek to call in the attending doctor at Texas Children's Hospital (this is common). It is their opinion that Laura's Heart surgery will likely be in September. They felt that she is progressing faster than they thought she would. Again this is not a surprise or unexpected. Tara and I have been wondering if Laura was moving along quickly. So, while we would have chosen not to have to go through this at all, we are glad it looks like the surgery will happen sooner rather than later.
We are hoping to have more information after the follow up on Monday.
Stage 2, The 2 Month check up and Shots
"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
As I said in my previous post, we are through stage 1 of the August Marathon and into stage 2. Stage 1 of August was celebrating many birthdays in a short amount of time with various groups. Although this is allot of fun, it wears Tara and I out. Little Laura recovered more quickly than we did. Of course she slept most of Monday. Go figure.
In stage 2 we have several doctors appointments, and yes more birthdays to celebrate. One of those appointments was yesterday. It was Laura's 2 month check up and shots. Laura is 10 pounds on the nose and 22 inches long. Overall, Dr. Pielop is pleased with her growth to this point. He said she is in the 75% range for length and weight. She is also in the 50% range for her head size.
Last week, we had an ultrasound on Laura's hips. Dr. Pielop wanted to do this for several reasons. First, because she was breech. It can sometimes lead to hip dysplasia. Also, there are some concerns about her hips because she has Down Syndrome. Those who get to hold her, or any Down's child, try to keep their arms and legs in the center line of the child's body. That means, do not let their legs straddle anything (for example your hip) or let their arms flop around when holding them. Instead, hold them with their legs together and their arms either by their sides, or folded on their chest. This is better for the child long term. It also helps them to fight issues that Dpwn's patients have due to having loose joints (a common problem with Down Syndrome). Dr. Pielop said that the results of the ultrasound were fine, and that her hips looked good.
Laura also had her 2 month shots yesterday. Tara said Laura came through it like a trooper. Laura cried a little, but calmed down shortly after the needle was taken out. This sis not a surprise to me. She is a very relaxed baby. When she was given her first round of shots, the moment they took the needle out she stopped crying. Tara did relish the opportunity to comfort Laura. I cannot say that I blame Tara. Even after two months my favorite thing is to hold my daughter. As a result of her shots, Laura slept a little bit more yesterday than she normally would.
The one thing that caused Tara and I pause was that Laura's weigh gain seemed to slow. In other words, we were expecting her to be 10 pounds and 4 to 8 ounces based on previous weigh ins and check ups. Although I am sure it is just a natural slowing in her growth cycle, we both found ourselves wondering if she has started burning more calories due to her heart condition. If this is the case, it was expected. We are just curious. Tara is going to mention it to Laura's Cardiologist today.
The best news from yesterday is that we got to adjust her feeding schedule. She now gets 97 mL 7 times a day as opposed to 85 mL 8 times a day. What does this mean you ask? Well, it means Tara and I can get close to 6 straight hours of sleep. Last night was so wonderful. Except that now my body needs to adjust to the new routine. I do not think it will take long. We are so happy.
I have not finished it yet, but I highly recommend Another Season by Gene Stallings. I was referred to it by a new friend of ours Beth. She has been a wonderful guide through everything. She has patiently and happily answered all of our questions. We cannot begin to express how grateful to her we are to here. The book is about Gene's son Johnny. It is a great and heartbreaking message. If you are struggling with the blessing of a Down's child, this book is an amazing reminder that you are not alone. There are many people that can help you, and who will love your child just because your child is there.
That is all for now. Please check back soon for more information.
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
As I said in my previous post, we are through stage 1 of the August Marathon and into stage 2. Stage 1 of August was celebrating many birthdays in a short amount of time with various groups. Although this is allot of fun, it wears Tara and I out. Little Laura recovered more quickly than we did. Of course she slept most of Monday. Go figure.
In stage 2 we have several doctors appointments, and yes more birthdays to celebrate. One of those appointments was yesterday. It was Laura's 2 month check up and shots. Laura is 10 pounds on the nose and 22 inches long. Overall, Dr. Pielop is pleased with her growth to this point. He said she is in the 75% range for length and weight. She is also in the 50% range for her head size.
Last week, we had an ultrasound on Laura's hips. Dr. Pielop wanted to do this for several reasons. First, because she was breech. It can sometimes lead to hip dysplasia. Also, there are some concerns about her hips because she has Down Syndrome. Those who get to hold her, or any Down's child, try to keep their arms and legs in the center line of the child's body. That means, do not let their legs straddle anything (for example your hip) or let their arms flop around when holding them. Instead, hold them with their legs together and their arms either by their sides, or folded on their chest. This is better for the child long term. It also helps them to fight issues that Dpwn's patients have due to having loose joints (a common problem with Down Syndrome). Dr. Pielop said that the results of the ultrasound were fine, and that her hips looked good.
Laura also had her 2 month shots yesterday. Tara said Laura came through it like a trooper. Laura cried a little, but calmed down shortly after the needle was taken out. This sis not a surprise to me. She is a very relaxed baby. When she was given her first round of shots, the moment they took the needle out she stopped crying. Tara did relish the opportunity to comfort Laura. I cannot say that I blame Tara. Even after two months my favorite thing is to hold my daughter. As a result of her shots, Laura slept a little bit more yesterday than she normally would.
The one thing that caused Tara and I pause was that Laura's weigh gain seemed to slow. In other words, we were expecting her to be 10 pounds and 4 to 8 ounces based on previous weigh ins and check ups. Although I am sure it is just a natural slowing in her growth cycle, we both found ourselves wondering if she has started burning more calories due to her heart condition. If this is the case, it was expected. We are just curious. Tara is going to mention it to Laura's Cardiologist today.
The best news from yesterday is that we got to adjust her feeding schedule. She now gets 97 mL 7 times a day as opposed to 85 mL 8 times a day. What does this mean you ask? Well, it means Tara and I can get close to 6 straight hours of sleep. Last night was so wonderful. Except that now my body needs to adjust to the new routine. I do not think it will take long. We are so happy.
I have not finished it yet, but I highly recommend Another Season by Gene Stallings. I was referred to it by a new friend of ours Beth. She has been a wonderful guide through everything. She has patiently and happily answered all of our questions. We cannot begin to express how grateful to her we are to here. The book is about Gene's son Johnny. It is a great and heartbreaking message. If you are struggling with the blessing of a Down's child, this book is an amazing reminder that you are not alone. There are many people that can help you, and who will love your child just because your child is there.
That is all for now. Please check back soon for more information.
Monday, August 10, 2009
Stage 1 Complete, Stage 2 under way
"But let all who take refuge in You be glad,
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well, we are through the first week of August and Laura is going strong (wish I could say the same for her mom and dad). She had a busy weekend meeting her great aunt Joan (pronounced Joann), her cousin's Deborah and Sharron.
She did great. She was her sweet, charming, inquisitive self. Joan and Deborah both got to hold her for some time. They were a little reluctant at first, but Laura won them over quickly and easily. Friday night she was a little fussy, but she had been in her car seat most of the day. Let's face it, her car seat is not exactly her favorite place to be and I do not blame her. Saturday and Sunday were much better since she spent more time in people's arms than anywhere else. This made her much happier.
She did have a small adventure Sunday. As we were coming back from lunch, one of the tires on the car decided to throw its tread. We suspect is was from wheel rot. She slept through the entire ordeal. If anyone is wondering, yes all four tires have been replaced and everything is fine now.
She spent most of today asleep. Or perhaps a better description would be, she spent the day recovering. Tomorrow she has her two month check up and shots. We are not looking forward to the unhappy baby that is going to come from those shots. I am hoping she responds in a manner that is similar to how she handled her shots at the hospital. She cried for a moment, but once the needle was pulled out she calmed right down. Here is hoping.
Below are a couple of pictures from the weekend. The first one is Laura and her granny on her grannies birthday. In that picture, the framed picture to the right (granny's left) is of my grandmother (Laura's Granny's mother). The second is Laura and her aunt Joan.
Let them ever sing for joy;
And may You shelter them,
That those who love Your name may exalt in You."
Psalm 5: 11
Well, we are through the first week of August and Laura is going strong (wish I could say the same for her mom and dad). She had a busy weekend meeting her great aunt Joan (pronounced Joann), her cousin's Deborah and Sharron.
She did great. She was her sweet, charming, inquisitive self. Joan and Deborah both got to hold her for some time. They were a little reluctant at first, but Laura won them over quickly and easily. Friday night she was a little fussy, but she had been in her car seat most of the day. Let's face it, her car seat is not exactly her favorite place to be and I do not blame her. Saturday and Sunday were much better since she spent more time in people's arms than anywhere else. This made her much happier.
She did have a small adventure Sunday. As we were coming back from lunch, one of the tires on the car decided to throw its tread. We suspect is was from wheel rot. She slept through the entire ordeal. If anyone is wondering, yes all four tires have been replaced and everything is fine now.
She spent most of today asleep. Or perhaps a better description would be, she spent the day recovering. Tomorrow she has her two month check up and shots. We are not looking forward to the unhappy baby that is going to come from those shots. I am hoping she responds in a manner that is similar to how she handled her shots at the hospital. She cried for a moment, but once the needle was pulled out she calmed right down. Here is hoping.
Below are a couple of pictures from the weekend. The first one is Laura and her granny on her grannies birthday. In that picture, the framed picture to the right (granny's left) is of my grandmother (Laura's Granny's mother). The second is Laura and her aunt Joan.
Thursday, August 6, 2009
Enter the Crucible . . .
"Trust in the Lord with all your heart
And do not lean on your own understanding.
In all your ways acknowledge Him,
And He will make your paths straight."
Proverbs 3: 5-6
Well it is August. There are two months out of the year that scare me to death. March and August. You see over 90% of our family have birthdays in these two months. They bother me more that Christmas. Since we are in August, I will only cover this months birthdays.
Moving from the beginning to the end, we start with my mother's Birthday on the 5th. Then mine on the 7th (thank you for the happy birthday comment, I swear I heard it). On the 13th is my mother-in-laws. On August 23rd is both my father and my step-niece. On the 26th is my cousin Cohen (it will be his first birthday). Add to this a cousin and an old friend who have birthdays on the 1st. Another old friend of Tara's on the 5th (yes the same day as my mother). Yet another old friend of mine who has a birthday on the 6th (she is exactly 365 days younger than I am). And finally, another old friend of Tara's is on the 27th (she and her husband just had their first child a couple of weeks before Laura). Yes, I am well aware that I have forgotten some people. For those of you I did not mention, please accept my apologies, and post your birthday in the blog comments section. All of this is just off of the top of my head.
Now add in the following events. First we have 3 E.C.I. appointments this month (one was today and went very well). Today we had to take Laura to have an ultra sound on her hips. Because she was breech there is a chance that she could have hip dysplasia (kind of makes it sound like Laura is an elderly dog). This is compounded by the fact that Down's kids sometimes have hip dysplasia as well. We will get those results next week. Tomorrow my aunt and cousin come into town to celebrate my mother's and my birthday with us for the weekend. This will be the first time they will get to see Laura since she made her break for the real world. I have warned her that she will have many pictures taken of her. Unlike her mommy and daddy she likes to be the center of attention, so hopefully it will go well. I am thinking of instituting a rule for the weekend that says if you are holding Laura when she messes her diaper, then you have been chosen to change her.
Monday, Tara has a routine Doctor's appointment. Tuesday, Laura has a two month check up and shots with Dr. Pielop. Wednesday, Laura has a cardiologist appointment. Thursday, Tara goes back to work, and E.C.I. will check in on Laura.
I will be so glad when September gets here. Maybe we will be able to get some rest. I am looking forward to tomorrow. Wait it is after midnight here, so it is my birthday. That means I am looking forward to today. Is it me, or does that sound a little weird. We are going to go see G.I. Joe. I expect it to be cheesy, but Rey Park is in it as Snake Eyes so I have hope. If anyone is trying to figure out where they know his name, he played Darth Maul in Star Wars: Phantom Menace. I still think that they should not have killed off Maul until Anikin could do it in Star Wars: Revenge of the Sith. That battle would have been awesome. If any of you Star Wars junkies out their want to know what I would have done with the prequels to include his character let me know, and I will post it here. He also played Toad in the first X-Men movie. He is also a multi time Martial Arts World Champion.
Over all Laura is doing well. She is approaching ten pounds. She is just getting bigger and bigger. I told my step-mother the other day that one morning not to long ago I swear she grew over night. That is impressive since we get her up to feed her at least three times between 11 pm and 8 am everyday. Our E.C.I. therapist is concerned that Laura is laboring in her breathing and asked us to speak to our cardiologist about it. She is already on Lasiks, and I suspect that the doctors will up her medication. Otherwise she is doing very well.
Laura has had a big week already and the month is just getting started. I am hoping to be able to post again Sunday and let everyone know how we are surviving.
And do not lean on your own understanding.
In all your ways acknowledge Him,
And He will make your paths straight."
Proverbs 3: 5-6
Well it is August. There are two months out of the year that scare me to death. March and August. You see over 90% of our family have birthdays in these two months. They bother me more that Christmas. Since we are in August, I will only cover this months birthdays.
Moving from the beginning to the end, we start with my mother's Birthday on the 5th. Then mine on the 7th (thank you for the happy birthday comment, I swear I heard it). On the 13th is my mother-in-laws. On August 23rd is both my father and my step-niece. On the 26th is my cousin Cohen (it will be his first birthday). Add to this a cousin and an old friend who have birthdays on the 1st. Another old friend of Tara's on the 5th (yes the same day as my mother). Yet another old friend of mine who has a birthday on the 6th (she is exactly 365 days younger than I am). And finally, another old friend of Tara's is on the 27th (she and her husband just had their first child a couple of weeks before Laura). Yes, I am well aware that I have forgotten some people. For those of you I did not mention, please accept my apologies, and post your birthday in the blog comments section. All of this is just off of the top of my head.
Now add in the following events. First we have 3 E.C.I. appointments this month (one was today and went very well). Today we had to take Laura to have an ultra sound on her hips. Because she was breech there is a chance that she could have hip dysplasia (kind of makes it sound like Laura is an elderly dog). This is compounded by the fact that Down's kids sometimes have hip dysplasia as well. We will get those results next week. Tomorrow my aunt and cousin come into town to celebrate my mother's and my birthday with us for the weekend. This will be the first time they will get to see Laura since she made her break for the real world. I have warned her that she will have many pictures taken of her. Unlike her mommy and daddy she likes to be the center of attention, so hopefully it will go well. I am thinking of instituting a rule for the weekend that says if you are holding Laura when she messes her diaper, then you have been chosen to change her.
Monday, Tara has a routine Doctor's appointment. Tuesday, Laura has a two month check up and shots with Dr. Pielop. Wednesday, Laura has a cardiologist appointment. Thursday, Tara goes back to work, and E.C.I. will check in on Laura.
I will be so glad when September gets here. Maybe we will be able to get some rest. I am looking forward to tomorrow. Wait it is after midnight here, so it is my birthday. That means I am looking forward to today. Is it me, or does that sound a little weird. We are going to go see G.I. Joe. I expect it to be cheesy, but Rey Park is in it as Snake Eyes so I have hope. If anyone is trying to figure out where they know his name, he played Darth Maul in Star Wars: Phantom Menace. I still think that they should not have killed off Maul until Anikin could do it in Star Wars: Revenge of the Sith. That battle would have been awesome. If any of you Star Wars junkies out their want to know what I would have done with the prequels to include his character let me know, and I will post it here. He also played Toad in the first X-Men movie. He is also a multi time Martial Arts World Champion.
Over all Laura is doing well. She is approaching ten pounds. She is just getting bigger and bigger. I told my step-mother the other day that one morning not to long ago I swear she grew over night. That is impressive since we get her up to feed her at least three times between 11 pm and 8 am everyday. Our E.C.I. therapist is concerned that Laura is laboring in her breathing and asked us to speak to our cardiologist about it. She is already on Lasiks, and I suspect that the doctors will up her medication. Otherwise she is doing very well.
Laura has had a big week already and the month is just getting started. I am hoping to be able to post again Sunday and let everyone know how we are surviving.
Wednesday, July 29, 2009
Musings, Thoughts and Other Stuff
"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose"
Romans 8: 28
I have been thinking about our current direction in life allot the last few months. Because we found out before Laura was born we were able to prepare emotionally and mentally for what the three of us would be going through. I am still amazed at how much the two words "Down Syndrome" that we heard back in March have taken hold of our life. Because of these two words we are making friends, and meeting people that we would have never met. I can tell you that the Down's community is an incredibly supportive, informative and caring community.
As you know, we toured the Rise School Last week. Their program is incredible. When we toured the school we were amazed. Each of the teachers and care givers were very active with the kids. They used multiple teaching techniques (which included singing and a microphone that the kids could not wait to use) that helped the kids to better learn the lesson for the day. Sign language was taught, to give the youngest kids the ability to communicate. In one class room the kids were so excited to see a new baby, that they gathered around Laura and oohed and ahhed over her every movement and squeak. It was so much fun to see them enjoying everything about their day, and to be treated like normal 2, 3 and 4 year olds. What really surprised me was to see how many adults with Down Syndrome worked at the school. The Director told us she was very proud of the fact that she is able to employ 5 Down's adults. We are currently on the waiting list and are very hopeful we will get in, in 2010. So if you are on the same waiting list and are ahead of us, please know that your spot will go to a beautiful girl if you decide not to attend the Rise School.
Some of the doctors we have met have also introduced us to a few couples. These couples are a little further along in their lives with a Down's child, but they have been amazing resources for us. They have guided us to several of the websites that you see posted on this blog. We are looking forward to getting to meet them face to face in the future. This will likely happen at one of the many support group meetings that happen in, and around Houston.
We have also met a couple who have a newborn with Down Syndrome. Their child is just about the same age as Laura. We are excited about being able to go through this with a couple that is in our same place. There is something reassuring about knowing you are not alone. Having these kinds of resources to draw from, beyond friends and family (whom we love and are incredibly supportive as well), is amazing.
If you are feeling overwhelmed, scared, frustrated, angry or any other "negative" emotion it is OK. You are not alone. There are many people out there who know how you feel and what you are going through. Reach out to them. We have found that being able to lean on the Down's community has helped us in ways we could never fully understand. We thank God daily for all of you.
Tuesday, July 28, 2009
A cascade of prescriptions later . . .
"And we know that God causes all things to work together for good to those who love God, to those who are called to His purpose."
Romans 8: 28
First, I need to apologize. I am sorry there have not been any updates in over a week. Unfortunately I was sick for most of that time. I had a urinary track infection and bad diarrhea. One day I was running to the bathroom every 20 minutes. I know that is more information than anyone needs, but those who know me know I sometimes like to go for that ewwwwwwwwwwww factor. It is fun for me. An antibiotic and some Imodium AD and I am feeling better. Blasted conditions made me miss three days of work. Even worse I could hold or play with Laura. I just got to wave to her from a short distance.
Now for the really important things. Laura is doing great. Friday, Laura had an audiology exam. Everything seems to be OK. The Doctor and Audiologist were alittle confused about why E.C.I. would want a full work up on a 5 week old. Especially, since it would not add any information to what was learned in Laura's newborn screen. The audiologist said that this would normally be done around the 6 month time frame. They were going to contact E.C.I. and try to find out the reason for the screen. We have not heard back from either. I skipped the appointment because of my afore mentioned health issues.
Yesterday, we had 2 appointments for Laura. The first was with her pediatrician for a weigh in. Laura is coming in at 9 pounds and almost 8 ounces. She is growing and growing and growing. Tara and I are having a hard time wrapping our heads around the fact that Laura has put on nearly 2 1/2 pounds since she joined us in the out world. I swear, most of that weight is in her cheeks. Dr. Pielop did notice she had a yeast infection. He gave us a couple of prescriptions for Laura (one topical for her behind and liquid for inside her mouth). Lets hope they work.
Yesterday afternoon, we went back to TCH to meet with Laura's cardiologist. Here we waited forever. I do not understand how an office that stresses that you be on time for your appointment can make you wait for over an hour. It can drive me a little nuts. Sometimes Tara suffers the brunt of my frustration and boredom. She really is a trooper. I think I will keep her.
Once we got in things moved a little faster. Laura's cardiologist asked us how she was doing . We told him that her breathing was becoming more labored. When he checked her lungs he did not hear anything unusual. He did notice that her heart was beating a little faster than it should. This was expected given her heart condition. He said otherwise everything looked fine. We told him we seemed to get the feeding thing up and running one day (for a day she took more than 40 mL's at each feeding and had one feeding where she took over 55 mL). Then we dropped back down to about 20 mL on average. This was also expected, and is a sign that she is laboring more. At this point the doctor wrote a prescription for Lasiks. This should slow things down a little and hopefully get her back to feeding properly.
On the way our we saw Dr. Ayers. She is the specialist that diagnosed Laura's Heart problem. It was great to see her, and have her meet Laura for the first time.
The real scare happened today. To fill you in completely about what happened we must get in our time machine. Yesterday, between appointments Tara noticed a few drops of blood when she check Laura's NG tube placement. She called Dr. Pielop. They talked for a few minutes and decided to keep an eye on it. He said more than likely the NG tube had either given Laura a small nose bleed that had run to her stomach or the tube had irritated Laura's stomach. For the rest of the day everything seemed fine.
This morning at 4:30 (I still cannot believe I regularly and some what willingly get up that early, even if am grumpy) I checked the placement of Laura's tube in preparation for feeding her. I pulled .5mL of partially digested blood from Laura's stomach. This prompted a call to our pediatrician. He told us to take Laura to the Emergency Room at TCH. I did not go (because I did not want to miss another days work). It turns our that it was acid reflux, and that Laura has to much stomach acid. Tara and I are not sure who she get that from, as we both deal with it on a regular basis. Another prescription later, and she is doing fine. The doctor did tell us that we needed to keep Laura more upright when feeding her through the tube as well as for 30 minutes after. He also recommended raising her bed alittle higher. That last bit might have been the pharmacist over at Briargrove Pharmacy. I was very glad to get to get off of work a little early so I could hang out with Tara and Laura this afternoon.
I have never been a fan of not knowing. I do not like being in situations where I look like an idiot. Who does. But this morning was worse, while I was waiting for Tara to call me. Yes I was at work. Yes I did my work. But it was torture knowing there was something wrong with Laura, and there was nothing I could do about it. I know this is going to be a reoccurring situation, but that does not mean I have to like it. It really was not allot of fun.
In Less than 36 hours we now have 4 prescriptions for Laura. I do not think that I have ever had that many doctor ordered drugs to take at one time. Obviously that seems Like allot to me. So that is the catch up on Laura and what is going on. I hope everyone who reads this is doing well. I will have more later.
Romans 8: 28
First, I need to apologize. I am sorry there have not been any updates in over a week. Unfortunately I was sick for most of that time. I had a urinary track infection and bad diarrhea. One day I was running to the bathroom every 20 minutes. I know that is more information than anyone needs, but those who know me know I sometimes like to go for that ewwwwwwwwwwww factor. It is fun for me. An antibiotic and some Imodium AD and I am feeling better. Blasted conditions made me miss three days of work. Even worse I could hold or play with Laura. I just got to wave to her from a short distance.
Now for the really important things. Laura is doing great. Friday, Laura had an audiology exam. Everything seems to be OK. The Doctor and Audiologist were alittle confused about why E.C.I. would want a full work up on a 5 week old. Especially, since it would not add any information to what was learned in Laura's newborn screen. The audiologist said that this would normally be done around the 6 month time frame. They were going to contact E.C.I. and try to find out the reason for the screen. We have not heard back from either. I skipped the appointment because of my afore mentioned health issues.
Yesterday, we had 2 appointments for Laura. The first was with her pediatrician for a weigh in. Laura is coming in at 9 pounds and almost 8 ounces. She is growing and growing and growing. Tara and I are having a hard time wrapping our heads around the fact that Laura has put on nearly 2 1/2 pounds since she joined us in the out world. I swear, most of that weight is in her cheeks. Dr. Pielop did notice she had a yeast infection. He gave us a couple of prescriptions for Laura (one topical for her behind and liquid for inside her mouth). Lets hope they work.
Yesterday afternoon, we went back to TCH to meet with Laura's cardiologist. Here we waited forever. I do not understand how an office that stresses that you be on time for your appointment can make you wait for over an hour. It can drive me a little nuts. Sometimes Tara suffers the brunt of my frustration and boredom. She really is a trooper. I think I will keep her.
Once we got in things moved a little faster. Laura's cardiologist asked us how she was doing . We told him that her breathing was becoming more labored. When he checked her lungs he did not hear anything unusual. He did notice that her heart was beating a little faster than it should. This was expected given her heart condition. He said otherwise everything looked fine. We told him we seemed to get the feeding thing up and running one day (for a day she took more than 40 mL's at each feeding and had one feeding where she took over 55 mL). Then we dropped back down to about 20 mL on average. This was also expected, and is a sign that she is laboring more. At this point the doctor wrote a prescription for Lasiks. This should slow things down a little and hopefully get her back to feeding properly.
On the way our we saw Dr. Ayers. She is the specialist that diagnosed Laura's Heart problem. It was great to see her, and have her meet Laura for the first time.
The real scare happened today. To fill you in completely about what happened we must get in our time machine. Yesterday, between appointments Tara noticed a few drops of blood when she check Laura's NG tube placement. She called Dr. Pielop. They talked for a few minutes and decided to keep an eye on it. He said more than likely the NG tube had either given Laura a small nose bleed that had run to her stomach or the tube had irritated Laura's stomach. For the rest of the day everything seemed fine.
This morning at 4:30 (I still cannot believe I regularly and some what willingly get up that early, even if am grumpy) I checked the placement of Laura's tube in preparation for feeding her. I pulled .5mL of partially digested blood from Laura's stomach. This prompted a call to our pediatrician. He told us to take Laura to the Emergency Room at TCH. I did not go (because I did not want to miss another days work). It turns our that it was acid reflux, and that Laura has to much stomach acid. Tara and I are not sure who she get that from, as we both deal with it on a regular basis. Another prescription later, and she is doing fine. The doctor did tell us that we needed to keep Laura more upright when feeding her through the tube as well as for 30 minutes after. He also recommended raising her bed alittle higher. That last bit might have been the pharmacist over at Briargrove Pharmacy. I was very glad to get to get off of work a little early so I could hang out with Tara and Laura this afternoon.
I have never been a fan of not knowing. I do not like being in situations where I look like an idiot. Who does. But this morning was worse, while I was waiting for Tara to call me. Yes I was at work. Yes I did my work. But it was torture knowing there was something wrong with Laura, and there was nothing I could do about it. I know this is going to be a reoccurring situation, but that does not mean I have to like it. It really was not allot of fun.
In Less than 36 hours we now have 4 prescriptions for Laura. I do not think that I have ever had that many doctor ordered drugs to take at one time. Obviously that seems Like allot to me. So that is the catch up on Laura and what is going on. I hope everyone who reads this is doing well. I will have more later.
Monday, July 20, 2009
"'For I know the plans that I have for you,' declares the Lord, 'plans for welfare and not for calamity to give you a future and a hope.'"
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Friday, July 17, 2009
The Journey, Part 2
"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works, and my soul knows it well."
Psalm 139: 13-14
Where did we leave off? Oh that's right the new doctor in December. Enter Dr. Plavidal. To say the least he is a character. I am sure everyone remembers the lamp that Ralphie's dad gets as a reward in the movie "A Christmas Story"? Well Dr. Plavidal liked the lamp so much, that he has 4 of them in various sizes. He thinks they are to funny. His staff roles there eyes at him allot. Needless to say Tara and I liked him right off the bat.
So the first appointment with him goes well. This was in December 2008. The first ultrasound is shown below. The next bit is the email I sent out after the appointment:
"Well the three of us had our third doctor visit today. The little one is just over 2 inches long and is doing great. In fact the little tike was very active and refused to stay still for much of the appointment. Every time Dr. Plavidal had the ultrasound equipment positioned to take “a perfect picture” the baby moved. The doctor would then spend the next minute or two trying to get a good position for a good shot of the baby. It was actually quite entertaining to watch. It also continues to affirm my belief that this baby is dominated by my side of the gene pool. My many proofs are this:
a. When Tara eats spicy food (especially Mexican food) she feels better
b. When Tara eats french fries she feels better (most of the time)
c. When Tara eats Blue Bell’s Cookies and Cream ice cream she feels better
d. The baby does not like to have its picture taken
The included picture is a great profile shot the kiddo. Clearly visible are the head, torso, legs and left arm. You can also see the skeletal structure starting to form. The bones will be the brighter white patches on the baby. The heart is beating at 163 beats per minute, which is right in the proper range for being 12 weeks along. Overall, Dr. Plavidal is very pleased with how the baby is looking and developing.
The coolest thing about this appointment is that we got to hear the baby’s heart beat. It took a few tries to hear it, because the little turkey was moving so much. The sound of the baby’s movement was strong enough to overpower the sound of the baby’s heart beat. Once we got a relatively still baby, and a good picture, the doctor turned on the sound. It was really great to hear, for about 3 seconds. Then the kiddo decided to move again and the movement drowned out the heart beat."
In January we had our next appointment. It went well, but our excitement was tempered by the loss of Tara's grandmother. To all of your who sent prayers and well wishes to us and for us, we again thank you. I did not send and email update because of everything surrounding Granny's passing. At this time we declined to do an amniocentesis as we did not think we had a reason to. Furthermore, we knew that no matter what it revealed, we were going to keep the baby. So there did not seem to be a good reason.
In February we had our next appointment. With this one we received a major piece of information. One everyone one of our friends and family had been asking us about. Here is the email I sent out to everyone.
"Well it has been an interesting month. 4 weeks ago we went for our monthly check up and everything looked fine according to the doctor. We got to see the baby’s brain. That was so cool. Both hemispheres were formed and district. The he showed us the baby’s stomach. It was a tight, round, dark ball and was filled with amniotic fluid. He said that the shape is good to see, because with down syndrome babies the stomach often (not every time) will look like a dumbbell. That was not the case, so the doctor is quite happy.
As most of you know two days later Tara’s grandmother passed away. Her passing tempered our excitement over the last appointment.
Now we are in week twenty, and just had another check up. The doctor said everything looks great, and that the proud mother to be is progressing nicely and is right where she should be. The doctor did a quick ultra sound and said the baby is developing beautifully. Which brings me to the question everyone has been PESTERING us about. We do know the sex of the baby. It will be a . . ."
I then turned on the out of office assistant, and shut off the computer. The our of office assistant read this way
"Like we would tell you the sex of the baby over email. You are just going to have to call us."
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works, and my soul knows it well."
Psalm 139: 13-14
Where did we leave off? Oh that's right the new doctor in December. Enter Dr. Plavidal. To say the least he is a character. I am sure everyone remembers the lamp that Ralphie's dad gets as a reward in the movie "A Christmas Story"? Well Dr. Plavidal liked the lamp so much, that he has 4 of them in various sizes. He thinks they are to funny. His staff roles there eyes at him allot. Needless to say Tara and I liked him right off the bat.
So the first appointment with him goes well. This was in December 2008. The first ultrasound is shown below. The next bit is the email I sent out after the appointment:
"Well the three of us had our third doctor visit today. The little one is just over 2 inches long and is doing great. In fact the little tike was very active and refused to stay still for much of the appointment. Every time Dr. Plavidal had the ultrasound equipment positioned to take “a perfect picture” the baby moved. The doctor would then spend the next minute or two trying to get a good position for a good shot of the baby. It was actually quite entertaining to watch. It also continues to affirm my belief that this baby is dominated by my side of the gene pool. My many proofs are this:
a. When Tara eats spicy food (especially Mexican food) she feels better
b. When Tara eats french fries she feels better (most of the time)
c. When Tara eats Blue Bell’s Cookies and Cream ice cream she feels better
d. The baby does not like to have its picture taken
The included picture is a great profile shot the kiddo. Clearly visible are the head, torso, legs and left arm. You can also see the skeletal structure starting to form. The bones will be the brighter white patches on the baby. The heart is beating at 163 beats per minute, which is right in the proper range for being 12 weeks along. Overall, Dr. Plavidal is very pleased with how the baby is looking and developing.
The coolest thing about this appointment is that we got to hear the baby’s heart beat. It took a few tries to hear it, because the little turkey was moving so much. The sound of the baby’s movement was strong enough to overpower the sound of the baby’s heart beat. Once we got a relatively still baby, and a good picture, the doctor turned on the sound. It was really great to hear, for about 3 seconds. Then the kiddo decided to move again and the movement drowned out the heart beat."
In January we had our next appointment. It went well, but our excitement was tempered by the loss of Tara's grandmother. To all of your who sent prayers and well wishes to us and for us, we again thank you. I did not send and email update because of everything surrounding Granny's passing. At this time we declined to do an amniocentesis as we did not think we had a reason to. Furthermore, we knew that no matter what it revealed, we were going to keep the baby. So there did not seem to be a good reason.
In February we had our next appointment. With this one we received a major piece of information. One everyone one of our friends and family had been asking us about. Here is the email I sent out to everyone.
"Well it has been an interesting month. 4 weeks ago we went for our monthly check up and everything looked fine according to the doctor. We got to see the baby’s brain. That was so cool. Both hemispheres were formed and district. The he showed us the baby’s stomach. It was a tight, round, dark ball and was filled with amniotic fluid. He said that the shape is good to see, because with down syndrome babies the stomach often (not every time) will look like a dumbbell. That was not the case, so the doctor is quite happy.
As most of you know two days later Tara’s grandmother passed away. Her passing tempered our excitement over the last appointment.
Now we are in week twenty, and just had another check up. The doctor said everything looks great, and that the proud mother to be is progressing nicely and is right where she should be. The doctor did a quick ultra sound and said the baby is developing beautifully. Which brings me to the question everyone has been PESTERING us about. We do know the sex of the baby. It will be a . . ."
I then turned on the out of office assistant, and shut off the computer. The our of office assistant read this way
"Like we would tell you the sex of the baby over email. You are just going to have to call us."
We then left home to run some errands. This did not go over well with a great many people. We received several very upset, to out right angry, phone calls to our home then our cell phones. I still do not understand why everyone did not think that this was as funny as I did. I guess most people do not have as good a sense of humor as I do. Oh well.
The next appointment was very uneventful. I did not even send out an update. By this time we were at the end of February or at the beginning of March 2009, and we were approaching the end of the second trimester. I will pick up here next week.
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Wednesday, July 15, 2009
First days suck!!!
"For Your formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are your works,
And my soul knows it well."
Psalm 139; 13 - 14
For as far back as I can remember I have never been a fan of first days (except summer vacation). First day of school, first day of work, first game of the little league football or baseball season, pretty much the first day of just about anything. I always viewed them as the start of something that I had no influence over. Because I did not know what to expect, I did not want to go.
My some what pessimistic out look always had me viewing these new starts as potential disasters waiting to happen. It would be the start of new school year, and I would fail every class (the ensuing punishment from my parents did not bother me because it would have been deserved). It would be the start of a new job, and I was sure I would do something to get fired (which would have my wife and I out on the street because we could not pay our bills). If I was playing sports, I would cause our team to lose every game (I was sure of it).
However, today's first day sucked for a completely different reason. It was my first day back to work after Laura's birth. My boss Nick was very grateful to see me. At least he said he was on several occasions as we discussed what projects he had waiting for me. For those who do not know I work for a retail company called R.E.I., and my bass and I spent most of my first hour and a half back at work discussing what tweaks could be done to enhance the department.
It was nice to have a bit of the old routine back. Seeing many of my coworkers again was quite nice as well. It fun to catch up with what is going on in their lives, and to discuss Laura and how she is doing.
However, the day sucked because after spending the vast majority of the last month with my daughter, I did not want to leave her. When I had people ask me if I was glad to be back to work I answered honestly no. I would have rather been home playing with my daughter. I know she still sleeps most of the time, but there is something reassuring about being able to check on her when ever I want. To hear her little squeaks and noises, to be able to pick her up, feed her and yes change her diaper is just to much fun.
So today sucked, but I made it through. It will get easier for me I know. That does not mean I am happy about it getting less and less difficult to leave my daughter. At least when Tara goes back to work she will get to take Laura with her.
I am hearing the sounds that indicate that my daughter needs some attention from her daddy. I think I will go investigate what surprise she has for me now.
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are your works,
And my soul knows it well."
Psalm 139; 13 - 14
For as far back as I can remember I have never been a fan of first days (except summer vacation). First day of school, first day of work, first game of the little league football or baseball season, pretty much the first day of just about anything. I always viewed them as the start of something that I had no influence over. Because I did not know what to expect, I did not want to go.
My some what pessimistic out look always had me viewing these new starts as potential disasters waiting to happen. It would be the start of new school year, and I would fail every class (the ensuing punishment from my parents did not bother me because it would have been deserved). It would be the start of a new job, and I was sure I would do something to get fired (which would have my wife and I out on the street because we could not pay our bills). If I was playing sports, I would cause our team to lose every game (I was sure of it).
However, today's first day sucked for a completely different reason. It was my first day back to work after Laura's birth. My boss Nick was very grateful to see me. At least he said he was on several occasions as we discussed what projects he had waiting for me. For those who do not know I work for a retail company called R.E.I., and my bass and I spent most of my first hour and a half back at work discussing what tweaks could be done to enhance the department.
It was nice to have a bit of the old routine back. Seeing many of my coworkers again was quite nice as well. It fun to catch up with what is going on in their lives, and to discuss Laura and how she is doing.
However, the day sucked because after spending the vast majority of the last month with my daughter, I did not want to leave her. When I had people ask me if I was glad to be back to work I answered honestly no. I would have rather been home playing with my daughter. I know she still sleeps most of the time, but there is something reassuring about being able to check on her when ever I want. To hear her little squeaks and noises, to be able to pick her up, feed her and yes change her diaper is just to much fun.
So today sucked, but I made it through. It will get easier for me I know. That does not mean I am happy about it getting less and less difficult to leave my daughter. At least when Tara goes back to work she will get to take Laura with her.
I am hearing the sounds that indicate that my daughter needs some attention from her daddy. I think I will go investigate what surprise she has for me now.
Tuesday, July 14, 2009
The end of appointments for now.
"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."
Psalm 139; 13 - 14
Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.
OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.
Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.
Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.
We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.
Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.
The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.
Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.
To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.
We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.
The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.
We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.
OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."
Psalm 139; 13 - 14
Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.
OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.
Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.
Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.
We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.
Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.
The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.
Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.
To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.
We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.
The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.
We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.
OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.
Monday, July 13, 2009
Appointments, appointments, & more appointments
"For You formed my inward parts;
You wove me in my mothers womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."
Psalm 139: 13-14
Well today started last night. You see, we had two doctor's appointments today. One was for Tara with Dr. Plavidal. The second was for Laura with Dr. Macicek at Texas Children's Hospital.
To prep for these appointments, I got Laura's stuff ready last night. This included getting a couple of bottles ready, and putting two nipples aside. Grabbing her two syringes (one small, one large) in case we need to feed her through her NG tube. And of course her stethoscope to check the placement of the NG tube, before we do the tube feeding.
Then there was packing Laura's diaper bag. Diapers, baby wipes, Vaseline, baggies, change of clothes, blankets, and I think that was it.
Today we got up about 6:00 am. Tara headed off to feed Laura, while I grouchily went about getting our breakfast ready. As many of you know, I am not exactly what you call a morning person. Getting up before 9:00 am seems like the most egregious of sins to me. How can anyone be happy to get out of a nice warm bed for any reason. I have been known to sleep through alarm clocks going off (those that survived). But up I got. After everyone ate, it was a hustle to get everyone ready. Mostly Tara and I, because of what I had thought I had done last night.
So, I do all of this prep work last night, to help get us out the door by 8:15 am to be at our 9:00 am appointment with Dr. Plavidal. Some of you maybe saying that is an awfully early time to leave for a 9 am appointment, and you are right. But you may not be familiar with the RUSH HOUR TRAFFIC here in Houston. It sucks, to say the least. So the smart money, when you live in the Galleria area of town and are planning to get on the South West freeway for any amount of time, is to plan for a long creeping drive. So imagine my surprise when we leave at 8:10 am (yup 5 minutes earlier than planned) and we are at Dr. Plavidal's office by 8:25 am. That is right, no traffic. Tara and I did not know what to say or do. We were in a state of shock. I know it is the baseball all-star break (go Hunter and Tejada), but I did not know that meant everyone was off for the day. It was both cool and a little eerie.
The appointment with Dr. Plavidal went well. Tara is cleared to do what ever she wants or needs, aside from lifting heavy weights (you know cars, heavy bags, furniture). She was quite excited. So was I. She can drive me around now.
We were out of Dr. Plavidal's office by 9:30, and headed to Texas Children's Hospital for our 10:00 am appointment with Dr. Macicek. Fortunately they are not far apart and it only took about ten minutes to drive and park. We got checked in and waited, and waited, and waited. Then just when we were about to be bored out of our minds, we waited some more. At about 10:45 am we decide we needed to go ahead and feed Laura. We get a bottle warmed and discover that I forgot to pack the small syringe, plunger for the large syringe and the stethoscope to check the NG tube placement. This means that we had to feed her from the bottle. Which is fine. Yesterday she got up to taking an ounce from the bottle in about 30 minutes (this fact will become interesting in a minute). So as we are getting started with the bottle feeding we get called back for the X-ray of Laura's lungs.
So we go back. In order to get the best picture possible, we had to take Laura's shirt off. While I was taking it off, I accidentally pulled her NG tube out. This pretty much nixed NG tube feeding for the day. Anyway, we get the X-ray done. Then we get sent back out for . . . can you guess?
I bet you can.
That's right, more waiting. Fortunately, this time it was not as long. Only about 10 minutes or so.
So it is now about 11:15 and we are all tired and hungry. And sure enough every time we try to feed Laura someone comes in to check her or talk about her. It was really frustrating. So we meet with Dr. Macicek and the attending for about an hour to discuss what is going on with Laura. Bottom line is they want to increase her caloric intake. Dr. Macicek calls over to the nutrition department to have a Dietitian come over and discuss what we need to do.
This lady comes over, sits down, and asks what our current routine is. We explain that Laura gets about 85 mL milk/formula every 4 hours. The lady's response is that, this is wrong and we need to be feeding Laura every 3 hours. She then asks why we are on this type of schedule. We explain to her that our Pediatrician is trying to get Laura to wake up for feedings instead of us waking Laura up. She again informs us that this is wrong and that we should be feeding Laura every three hours and waking Laura up. I pointed out as nicely as I could (I was fuming at her attitude and the fact that according to her, everything we are doing is wrong) Laura sleeps through the feedings at 3 hours. We also pointed out that when we were feeding Laura every 3 hours, Laura was getting 72 mL's. At every 4 hours, Laura gets 85 mL. She continued to tell us that Laura is not getting enough and that we need to change it back.
She then asked about Laura's therapy. We told her that E.C.I. comes about 3 times a month. She spent about 2 minutes trying to discredit E.C.I. then said that this therapy schedule was unacceptable, and that Laura needed to be in therapy multiple times a week. She then told us that TCH has many therapist's that could work with Laura, or she suggested that we could even hire a private therapist to work with Laura. It was all I could do to not rip this lady a new one.
When we finally left I was livid. Fortunately, Tara and I were able to talk it out and I felt better. Tara was not much happier than I was. Unfortunately, things like this are going to happen. If these suggestions made by "knowledgeable people" do not work with what you can do, you do not have to give in to them. You are going to do the best you can with your Down's child. That is all any of us can do. Make sure that you love your child, and you are showing your child your love. That is what they need more than anything else. The rest will fall into place.
Anyway, we finally left TCH about 1:00 pm picked up lunch on the way home and then crashed from the day, after we replaced the NG tube (again, I hate that thing). Thank you to Jennifer Trevathan for bringing us dinner tonight. It is much appreciated.
Below is a picture of Laura once we got her back home today.
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