Thursday, May 29, 2008
We also received news that Matt's second cousin Cassie (odd that we even know Matt's second cousins, but he comes from an exceptionally close family) who is pregnant with her first little boy was recently diagnosed with Hypoplastic Right Heart Syndrome (similar to our original diagnosis). It's hard to believe that two conditions, DILV and HRHS, that are so rare and so foreign to our family history are now becoming a part of our vocabulary. It also seems remarkable to me that our babies are likely to share some time in the PICU together if not through their first surgeries, then for their Glenn and Fontan operations. Where God sends trials he also sends unexpected sources of strength. Hopefully, our babies can strengthen each other to push through their rough starts to grow up big and strong and full enough of themselves to compare scars. Please keep Cassie and her baby in your prayers.
My other boys are doing great as well. Preston has finally got the hang of potty training and I could not be happier. They both seem so big and independent lately. I feel ready to have another baby in the house and am truly looking forward to a fantastic summer full of mini-adventures with them.
We feel so blessed by all of your well wishes and offers of help. We are actually doing fantastically well. Until next time!
Wednesday, May 14, 2008
We learned that our baby does not have HLHS, but double inlet left ventricle (DILV) with a large VSD. He was misdiagnosed because his heart has actually grown in a reversed position on the right side of his chest (weird, but not life threatening). So everything the initial ultrasounds detected was correct, but in reverse. Instead of having a small left ventricle, the baby has an underdeveloped right ventricle. The hole or VSD between the two ventricles is also quite large, which in a normal heart would be a problem, but for him because both upper chambers of the heart empty into the left ventricle, it will actually help him move blood. Lastly, he has no blood flow through his pulmonary artery. That's a big problem if we want him to be able to oxegenate his blood. Here's a couple pictures that illustrate some of what's going on. The first is a normal heart. The other is a heart with DILV.
Why is all of this a miracle? It's a miracle because instead of having to live the rest of his life with just his right ventricle, the weaker of the two, he'll make it work with just his left -- the more powerful of the two ventricles. It's a miracle because instead of having to go straight into open heart surgery within days of his birth, he will have a much less serious operation in his first few days here to create a shunt of sorts for blood flow from his heart into his lungs. That will tide him over until his is three months old and big enough to handle the first of two open heart surgeries that will be required to re-route blood flow permantly so he can lead a near-normal life. It's a miracle because instead of having a 75 percent shot at making it through his first surgery, the doctors said today he has a 99 percent chance of coming though the first operation. HOORAY!!
I know it is still bad news, but it's better bad news, right? I feel such relief knowing I will be able to hold him and take him home much sooner than we expected. I know he still has so much ahead of him, but I feel if we can just ask for these small miracles along the way, it will add up to one amazing miracle baby!
I came across this poem on another heart mom's blog and just had to share:
For some reason this special spirit is ours. When the lead cardiologist told us they see only three or four cases of this a year at Primary's we just had to laugh. Some might say, "What are the odds?" But that's just it. It's not the odds we play. There is rhyme and reason in this somewhere, it's just not mine.
So for now I am supremely thankful for the perspective this experience is giving me on life, what's important, and in whom I need to trust. When Ty learned today that the baby's heart was a little better than we first thought he told me that he was glad that his prayers were fixing it. And you know what, I'm glad too! I am also learning after 10 years and two kids what an amazing man my husband is. He is my confidant, my friend, my sanity, my gift. Not a bad reminder of all the reasons I love him after a decade of life together, right?
Here's to one amazing day.
Wednesday, May 7, 2008
In other baby news, I had a routine check up yesterday and all seems well. The nurse said I've definitely grown, but I could have told her that. The baby's heartbeat sounds great, but it was hard to get a good count because he kept kicking the machine. It was quite funny, actually. He's getting more active all the time and I'm sure he'll be just as spunky as his brothers.
Sunday, May 4, 2008
During the blessings today my sweet Preston fell asleep in my arms (a miracle in and of itself if you know Preston!). I seriously cannot remember the last time he did that. I knew the Lord was sending me a hug and reminding me to cherish what I have while I have it instead of worrying about all that is to come.
Tonight I know the Lord has prepared us to face what lies ahead in very specific ways. Let me just start with the long list of details that absolutely give me the chills when I consider how great, specific, and knowing the Lord's plan is for us:
- My home teacher and my bishop are both OB/GYNs and have offered to answer any of the endless questions we may have whenever we want them answered.
- My sons' pediatrician just happened to be in the hospital the day the baby was diagnosed with HLHS and let us know that cardio was his specialty during his pediatric residency. He became our pediatrician more than five years ago when Ty was born on a blind referral from our birth coach. Can you believe the glory of God's plan?
- Our sweet friends and neighbors, the King's, are unbelievably educated about the baby's condition because he works with artificial hearts and she is a former Primary Children's nurse. I spoke with her on Friday and she has shared just a little to prepare me. I can't imagine how we will pester them with questions in the months to come.
- Matt's firm represents the doctors of the University of Utah and Primary Children's and the partners have already given us recommendations for surgeons and specialists we have yet to meet. (That relationship also makes the doctors we have met immediate friends with Matt~everyone loves their lawyer, right?)
Those are a few of the many "coincidences" that have come our way in the past six weeks. If I didn't know it before, I know it now. God knows us. He is aware of us. He sends us trials to strengthen us, but surrounds us in those trials with tender mercies that make it all bearable and witness that He is. I do not claim to understand the why's and how's of His plan, but I have faith in it and in His love for me and my family.
I read something today that said, "Faith is the opposite of fear." That motivates me to strengthen my personal faith so I can eliminate the fear I feel today and replace it with hope for all the miracles that are to come.
I am so grateful for the kind words and thoughtful support that has been offered by our friends and family. I cannot imagine going through this without you!