"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.
Showing posts with label Cardiologist. Show all posts
Showing posts with label Cardiologist. Show all posts
Wednesday, September 9, 2009
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.
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.
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.
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.
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.
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