Yesterday we had another appointment with the pediatric cardiologist specialist to get more pictures of our baby's atrial septum for Boston. We should hear something in the next couple days from Boston. Our specialist believes only a trickle of blood is getting through at this point. We also found out that best case scenario, they don't expect our little girl to live for more than a year. We were so heartbroken. We are praying for healing and for her to be a miracle baby. We have decided to give her every chance we can to be that miracle baby, so we will not provide comfort care for her (which means once she's born, just making her comfortable and not doing any surgeries-just enjoying the short time you have with her), but instead do everything that's medically available for her. I have joined several different support groups lately and was so encouraged last night/this morning. I had posted to one of them looking for others who have been diagnosed with the same two heart defects as we have. I found several people whose kids are doing well! It encouraged me and gave me some new hope that I needed just about now. It's only been recently that they've been able to help babies with RAS. I believe the oldest survivor is only 9 years old.
We are praying for a miracle but also praying that God prepares our hearts for this path ahead of us, regardless of how it turns out. He has strengthened us in our weakness for sure. Thanks to all who pray for us, encourage us, take care of our kids for us while we are at doctor visits, house us, feed us and so much more.
Congential Heart Defects stats:
1% of babies born have some type of Congenital Heart Defect.
8-10% of that 1% have Hypoplastic Left Heart Syndrome.
Of those 8-10% who have HLHS, about 5% also have Restrictive Atrial Septum.
In the four years our cardiologist specialist has been at Children's Mercy, she has only had 3 or 4 babies with the same issues as ours. I think the longest baby to live from our hospital (who also had the in-utero procedure done in Boston) was 10 months. We are the rarest of the rare in regards to her heart issues. These two particular issues combined make for a very, very sick baby. Prayers please!
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ReplyDeleteOh Leslie....I cannot imagine your heartbreak, your cries to God. I am praying for you, Mark, your girls and your little baby girl.
ReplyDeleteWill keep you and your family in my prayers. God will give you the strength to travel this journey.
ReplyDeleteLove your heartfelt blog! No words can describe the aching you feel in your heart when your baby is so sick. Im so sorry you are going through this, but I know first hand that through prayer babies can experience miracles!! My little Lincoln is proof of that. Your little fighter girl will be in my prayers daily! Xoxo
ReplyDeleteAmy Crouch
Leslie, I am so sad reading this news and will be praying for you, Mark and the girls as you are going through this. We are praying for a miracle for your baby girl - with God anything is possible. Love and prayers to you all.
ReplyDeleteMegan Graham
Hi Leslie. I have just recently met you in my Olathe BSF group. But I am honored to be able to pray for you and your family! Of course I will pray for a miracle for your baby - Our God is the God of miracles and nothing is too hard for him! (Jer 32:17) But I also pray for wisdom for your doctors and strength & comfort for you and your family. Thank you for so bravely sharing your story!
ReplyDeleteMonica Coltvet