"... 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.
Friday, August 21, 2009
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.
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