It was a week ago that Dr. Squiers first heard Tyler's heart murmur. I don't have to say this but it has been quite a week. It has been quite overwhelming and emotional. But I will say I have learned a few things along the way.
First, I have learned how many people love Tyler and our family. I have gotten so many encouraging emails, calls, and cards. All the kind words have really been comforting and helpful this week. I feel so blessed to be surrounded by family and friends that love us and who are so caring. So, I thank you for that. I can't imagine having to deal with this without wonderful family and friends.
I have also learned the power of prayer. I know God has given me strength over the last week. There are so many people praying for Tyler and he is on so many prayer list. I know God will continue to answer our prayers.
Lastly, I have learned that we are not alone in this journey. I have gotten so many emails and heard so many stories from other mommies who have experienced something similar with their baby. There is a woman who is a friend of a lady that I work with. When her daughter was 20 months old she had to have heart surgery. She emailed me the story of her daughter and something she said really made me think...
"It's a tough journey, but one I'm glad we had the option to take...."
This really made me think. Although, this is an awful problem, I'm thankful there is a solution. I know things could be a lot worse so I am thankful that surgery is an option and his heart can be fixed.
If I failed to mention, I have also learned how to find the positive in everything. I never knew I could be such an optimist!
Thanks again for the love and prayers....keep them coming.
Monday, March 15, 2010
Thursday, March 11, 2010
March 25th
The surgery date has been set for the afternoon of the 25th. Dr. Tam's nurse called me today to give us some more information about what to expect.
We will take Tyler in on the 24th for pre-op stuff. He will have blood drawn, a chest x-ray, and another echo. Then, we will go back on the 25th mid morning. He can eat until 6AM the day of and then have Pedialyte until 10 or 11AM. If for some reason the surgery will be later than expected, he can have another bottle. The total surgical time, including prep, will be about three hours. He will then be taken to ICU for 2-3 nights. While in ICU he will have IV's and possible chest tubes. These are all temporary, and she said it will look a lot scarier to me then it really is. Their ICU is an open ICU. This means that he can have two visitors at a time, 24 hours a day. It's not a private room but their are 10 beds separated by curtains. While he is in ICU we will be able to hold him and feed him. After ICU he will spend 1-2 nights in a regular room. This will be a private room just for him, which of course visitors are allowed. The nurse said the incision will be on his left side but he will not have any restrictions as to how he can lay. She said he can have tummy time, or even be on his side. Once they feel he is ready to go then we can bring home home. She is thinking a 4-5 day stay.
It was scary to talk with her because it made things more real. As she was talking I was picturing all of this really happening. So far the hospital and doctors have been great. They are very comforting and detailed, which I love. I'm ready for the 25th to be here so we can get this all over with.
Please keep the prayers coming.
We will take Tyler in on the 24th for pre-op stuff. He will have blood drawn, a chest x-ray, and another echo. Then, we will go back on the 25th mid morning. He can eat until 6AM the day of and then have Pedialyte until 10 or 11AM. If for some reason the surgery will be later than expected, he can have another bottle. The total surgical time, including prep, will be about three hours. He will then be taken to ICU for 2-3 nights. While in ICU he will have IV's and possible chest tubes. These are all temporary, and she said it will look a lot scarier to me then it really is. Their ICU is an open ICU. This means that he can have two visitors at a time, 24 hours a day. It's not a private room but their are 10 beds separated by curtains. While he is in ICU we will be able to hold him and feed him. After ICU he will spend 1-2 nights in a regular room. This will be a private room just for him, which of course visitors are allowed. The nurse said the incision will be on his left side but he will not have any restrictions as to how he can lay. She said he can have tummy time, or even be on his side. Once they feel he is ready to go then we can bring home home. She is thinking a 4-5 day stay.
It was scary to talk with her because it made things more real. As she was talking I was picturing all of this really happening. So far the hospital and doctors have been great. They are very comforting and detailed, which I love. I'm ready for the 25th to be here so we can get this all over with.
Please keep the prayers coming.
Wednesday, March 10, 2010
Dr. Tam
Dr. Tam, the pediatric surgeon at Cooks, called me this morning. He had not yet seen Tyler's echo but was able to answer some questions for me. He talked me through what the doctors would discuss at their meeting and what I could expect.
They met this afternoon to discuss Tyler's case and look over his echo pictures. Dr. Tam called me after the meeting to let me know what they decided....
-The coarctation (narrowing of the artery) is mild but will still need to be surgically fixed. We will schedule the surgery in the next two weeks. Before the surgery they want to do another echo to get more pictures of Tyler's heart. They want to get a better view of the leaking valve and a better picture of the coarctation. He said that his heart is contracting as if the coarctation is worse than it is. They just want to make sure there isn't anything else they are missing that would make his heart contract that way. He also said that the left side of the heart looks a bit abnormal. This could be caused only by the coarctation but again they want to double check. Often times fixing the coarctation will fix the leaking valve, so we are hoping for that. Once the coarctation is removed there is less than a 5% chance that it will come back. He said he does not foresee they will find anything else in the next echo, so I should not worry.
-Something I forgot to mention in yesterdays blog was that Tyler also has a bicuspid valve. This is something that often goes hand in hand with a coarctation. Basically our heart valves have three leaflets, but Tyler only has two on one of his valves. It's something that often causes no problem and many people have this and don't even realize it. The good news is that Tyler's looks good and is not a concern at this point.
When it is time for surgery we will go in the day before for a pre-op and they will do the echo at that time. Once the surgery gets started it will take about two hours. Tyler will then spend 2-3 nights in ICU with the other heart babies, and we should be back home within a week. Dr. Tam said that it is easier and better to do this surgery with an infant opposed to an older child. He also said that babies recover beautifully from surgery and by the time we leave Tyler will be good to go. He said we may have to give him Tylenol but nothing else.
It makes me feel good to be able to speak with Dr. Tam and that he is taking the time to call me and explain everything. It also makes me feel good that they are doing another echo to double check everything. I love that they are so thorough.
We don't have a date set yet but I will let you know as soon as we do. So, please continue to pray for Tyler, his heart, and the doctors. Thanks again for all the love and prayers.
They met this afternoon to discuss Tyler's case and look over his echo pictures. Dr. Tam called me after the meeting to let me know what they decided....
-The coarctation (narrowing of the artery) is mild but will still need to be surgically fixed. We will schedule the surgery in the next two weeks. Before the surgery they want to do another echo to get more pictures of Tyler's heart. They want to get a better view of the leaking valve and a better picture of the coarctation. He said that his heart is contracting as if the coarctation is worse than it is. They just want to make sure there isn't anything else they are missing that would make his heart contract that way. He also said that the left side of the heart looks a bit abnormal. This could be caused only by the coarctation but again they want to double check. Often times fixing the coarctation will fix the leaking valve, so we are hoping for that. Once the coarctation is removed there is less than a 5% chance that it will come back. He said he does not foresee they will find anything else in the next echo, so I should not worry.
-Something I forgot to mention in yesterdays blog was that Tyler also has a bicuspid valve. This is something that often goes hand in hand with a coarctation. Basically our heart valves have three leaflets, but Tyler only has two on one of his valves. It's something that often causes no problem and many people have this and don't even realize it. The good news is that Tyler's looks good and is not a concern at this point.
When it is time for surgery we will go in the day before for a pre-op and they will do the echo at that time. Once the surgery gets started it will take about two hours. Tyler will then spend 2-3 nights in ICU with the other heart babies, and we should be back home within a week. Dr. Tam said that it is easier and better to do this surgery with an infant opposed to an older child. He also said that babies recover beautifully from surgery and by the time we leave Tyler will be good to go. He said we may have to give him Tylenol but nothing else.
It makes me feel good to be able to speak with Dr. Tam and that he is taking the time to call me and explain everything. It also makes me feel good that they are doing another echo to double check everything. I love that they are so thorough.
We don't have a date set yet but I will let you know as soon as we do. So, please continue to pray for Tyler, his heart, and the doctors. Thanks again for all the love and prayers.
Tuesday, March 9, 2010
Cardiologist Visit...
I took Tyler this morning for the EKG and Echo to check up on his heart murmur. Rusty is in Florida, so my mom went with me. They found a few things with Tyler's heart.
First, they found a coarctation of the aorta. This has to do with the artery that runs out of his heart and supplies blood to the bottom half of his body all the way to his feet. There is a section of the artery that narrows, and this causes irregular blood flow. The cardiologist(Dr. Gillette) said at his age it's not an extremely serious concern but it will become a bigger concern the older he gets. The good news...it is something that can be fixed. The bad news...it is fixed surgically. So what this means is Tyler will be having heart surgery in the next couple of weeks. They will go in through is armpit, cut out the narrow section of the artery, and then reconnect the normal section of the artery. Apparently this is common, and Dr. Gillette said he had a baby do this same thing about a month ago. He also said that Dr. Squires did a great job of finding the murmur because it was very hard to hear. He also said there is no reason or cause for this issue. The doctors at Cooks in Ft. Worth will have a meeting tomorrow afternoon to discuss Tyler. They will then decide what step needs to be taken next. We should know Thursday morning by 10 what they decide.
They also determined the cause of the murmur that Dr. Squires heard. One of Tyler's valves is leaking. Dr. Gillette said it's only leaking about 10%. He thinks the coarctation of the artery is adding more pressure to the heart, which is causing the leaking valve. So, if we get the artery taken care of, the valve will more than likely stop leaking on it's own.
This is all of the information I got this morning, quite overwhelming as you can imagine. I cried lots at the thought of Tyler having heart surgery at four weeks old. There have been lots of feelings and emotions that I have experienced today. But, as the day has gone by I have felt more comforted and at ease for many different reasons. Mostly because God is answering my prayers and giving me comfort and strength. I have also had a chance to talk with several people in the medical field today. All of which have told me the same thing. It's common and a routine procedure. Also, I'm very lucky that they caught it so early and we can take care of it. Also, my friend Jacquelyn's dad, Al, is a Dr. in Ft. Worth. Al is good friends with the pediatric heart surgeon(Dr. Tam) at Cooks in Ft. Worth, and Al called him today to let him know about Tyler. Dr. Tam is going to call me tomorrow so I can ask him any questions I have. I have already started making my list. There are only two pediatric heart surgeons at Cooks and he is one of them. So, there is a good chance he may be the one to do Tyler's surgery. This gives me comfort as well.
So, in this whirlwind of a day, a part of me is feeling at ease and thankful. I'm thankful that Dr. Squires heard the murmur and the cardiologist was able to determine exactly what is wrong. I'm also thankful that it's something that can be fixed and healed. Mostly, I thankful that even with all of this, we still have a precious baby boy.
Please say your prayers for Tyler, his heart, and the doctors. I hate to be selfish but I would love a prayer for comfort and strength as well. I'm afraid I might cry myself to the point of dehydration if I'm not careful. Rusty will be home Thursday around noon and I'm anxiously awaiting his arrival. I will keep you updated. Thanks for all of the love, support, and prayers.
First, they found a coarctation of the aorta. This has to do with the artery that runs out of his heart and supplies blood to the bottom half of his body all the way to his feet. There is a section of the artery that narrows, and this causes irregular blood flow. The cardiologist(Dr. Gillette) said at his age it's not an extremely serious concern but it will become a bigger concern the older he gets. The good news...it is something that can be fixed. The bad news...it is fixed surgically. So what this means is Tyler will be having heart surgery in the next couple of weeks. They will go in through is armpit, cut out the narrow section of the artery, and then reconnect the normal section of the artery. Apparently this is common, and Dr. Gillette said he had a baby do this same thing about a month ago. He also said that Dr. Squires did a great job of finding the murmur because it was very hard to hear. He also said there is no reason or cause for this issue. The doctors at Cooks in Ft. Worth will have a meeting tomorrow afternoon to discuss Tyler. They will then decide what step needs to be taken next. We should know Thursday morning by 10 what they decide.
They also determined the cause of the murmur that Dr. Squires heard. One of Tyler's valves is leaking. Dr. Gillette said it's only leaking about 10%. He thinks the coarctation of the artery is adding more pressure to the heart, which is causing the leaking valve. So, if we get the artery taken care of, the valve will more than likely stop leaking on it's own.
This is all of the information I got this morning, quite overwhelming as you can imagine. I cried lots at the thought of Tyler having heart surgery at four weeks old. There have been lots of feelings and emotions that I have experienced today. But, as the day has gone by I have felt more comforted and at ease for many different reasons. Mostly because God is answering my prayers and giving me comfort and strength. I have also had a chance to talk with several people in the medical field today. All of which have told me the same thing. It's common and a routine procedure. Also, I'm very lucky that they caught it so early and we can take care of it. Also, my friend Jacquelyn's dad, Al, is a Dr. in Ft. Worth. Al is good friends with the pediatric heart surgeon(Dr. Tam) at Cooks in Ft. Worth, and Al called him today to let him know about Tyler. Dr. Tam is going to call me tomorrow so I can ask him any questions I have. I have already started making my list. There are only two pediatric heart surgeons at Cooks and he is one of them. So, there is a good chance he may be the one to do Tyler's surgery. This gives me comfort as well.
So, in this whirlwind of a day, a part of me is feeling at ease and thankful. I'm thankful that Dr. Squires heard the murmur and the cardiologist was able to determine exactly what is wrong. I'm also thankful that it's something that can be fixed and healed. Mostly, I thankful that even with all of this, we still have a precious baby boy.
Please say your prayers for Tyler, his heart, and the doctors. I hate to be selfish but I would love a prayer for comfort and strength as well. I'm afraid I might cry myself to the point of dehydration if I'm not careful. Rusty will be home Thursday around noon and I'm anxiously awaiting his arrival. I will keep you updated. Thanks for all of the love, support, and prayers.
Monday, March 8, 2010
Two Week Check Up....
We went this morning for Tyler's checkup. He weighs 10lb 1oz and is 21 1/4 inches long. His weight is in the 84 percentile and his height is 69 percentile. His head circumference is 38.25 cm, 73%.
Dr. Squiers discovered today that Tyler has a heart murmur. He did not hear it at the hospital or at his first checkup. Apparently it's fairly common but we have to go to see a pediatric cardiologist in the morning at 10:30. They will do a echocardiogram, "echo", which is an ultrasound of his heart. This will determine exactly which type of murmur it is and if it is anything to worry about. We are hoping for an "innocent murmur". This is the most common and is in healthy hearts. It tends to go away on it's own and poses no heath issues. (I've been doing my research). He tested his oxygen levels today and they were normal, so that's a good thing. Of course I'm worried and have shed my fair share of tears today. The words "heart murmur" sound scary. The thought of anything being wrong with him hurts my heart. I know that this is the first of many scary Mommy moments I will have, but that doesn't make it any easier. I'm trying not to worry and just say my prayers instead. This has been the verse of my pregnancy...
Don't worry about anything; instead, pray about everything, tell God your needs, and don't forget to thank him for his answers. If you do this then you will experience God's peace, which is far more wonderful than any human mind can understand. His peace will keep your thoughts and your heart quiet and at rest while you trust in Christ Jesus.-Philippians 4: 6-7
Tyler did great today and was quite the trooper. The good news is everything else looks and sounds good! I'm anxious for tomorrow so we will know exactly what kind of murmur it is. Say a prayer for Tyler and I will let you know what we find out.
Friday, March 5, 2010
Week Two!!
Yesterday was two weeks. I can't believe it! The hard part about this week was Rusty had to go to Philly for the week. I was very sad on Monday when he left but the good news is he is on his way home from the airport as I type!! I sent him pictures of Tyler and the dogs everyday. Barbara came to stay with me Monday night and Tuesday night. My mom stayed with me Wednesday night and my Grandma Jacki came to stay with me last night. They were such a huge help and let me get a little extra sleep. Tyler is doing great, better and better by the day. He is eating 4 oz every 3-4 hours and sleeping better at night too!
Last Friday we had a photographer come to the house to take his newborn pictures. These are the only two I have but I should be getting the rest in the next couple of days...
Here are a few others from the week....
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