It turns out that Lila was not responding to the meds they gave her to close one of the holes in her heart (the PDA) after all. Though they couldn't hear the murmur any longer, the echo cardiogram they performed on her today not only confirmed the hole is still there, but also that it is a very large hole (the fact that it is very large is probably why they couldn't hear it any longer). At this point, they are stepping up the meds to make a last ditch effort to get her to respond, but the doctors are not real optimistic that it will do the trick. If it does not close on its own and does not close because of the meds, the only options will be to wait it out or to operate.
She is not showing any ill effects from the hole at the moment, but there is still plenty of concern that she will begin to have issues. The question for us will be do we go ahead and operate while she is doing well so that she can handle the operation better or do we wait until she starts to have issues before we operate. Clearly, this is not a decision Casey and I would like to be faced with!
We were contacted through the blog by a mother of triplets whose child had to go through this operation. She said that it went great and her daughter did much better once everything was over. Thank you, Shelley, for your words of encouragement! I don't believe that this is an all too uncommon thing for premies to go through, but it is a scary one nonetheless. We should know something in the next couple of days. In the meantime, please pray for Lila's little heart!
God Bless,
Ethan
www.JonesLife.net
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13 comments:
Praying for you guys.
Ethan and Casey, I will definitely be thinking of you all, especially little Lila.
--Barbara Schantz, MOM of two sets of twins (Greta & Cora, 4 years, and Carlton & Franklin, 7 months)
We're praying for all of you. We'll be praying for clarity of mind for you & Casey, that you'll know what decision to make if needed and peace about whatever comes. We pray Casey is recovering better each day and trying to take it easy! Thanks for updating so much, it's great to read and stay up to date.
I'm a March of Dimes volunteer who briefly met Casey at the NICU on Saturday. I just wanted to say that my 25wkr had a PDA ligation at 2wks old. It was a very scary experience especially given how teeny tiny my daughter was but the surgeon was great and everything went smoothly.
I'm praying the medication closes the PDA and it never even comes to surgery.
I live in Florida and found your blog through the Wilkinson site. I don't know any of you, but my prayers have gone out since the beginning. I have four grown children. My oldest daughter had a stroke when she was born and was in NICU for a month so I understand the difficult emotions you are both dealing with - times 5 of course. Your faith is strong so continue to believe that God is watching over all of you. Best wishes.
LibrarysCat
You are welcome! I will continue to pray for Lila and her heart! Reese was 4 weeks old when she had her surgery. She heart & lungs were working very hard by that point so we knew she had to have it. If you have any questions about it feel free to email me. randallbarron@verizon.net
"Bless her heart" is what I was thinking! ;) I will keep sweet lil Lila in my prayers.
Just found your blog through a friend's link. Praying for little Lila's heart and that the medication closes the PDA. God is in control!
I hate to hear this about Lila. We'll continue to pray for her and can't wait to meet all of them!
Ethan & Casey, We'll definately be praying for Lila to respond to the medication, but also that whatever is needed that it will all go smoothly and work well!
We pray for you guys every day. You are doing awesome.
My son had open heart surgery when he was 5 days old. He was not a preemie and had a major heart defect, but I wanted you to know what amazing things those doctors can do to help your baby's heart. My "baby" is now 21 months old and is doing amazing.
I pray that you will see more miracles everyday and be strengthened in this journey!
Hugs & Prayers,
Christina
Momma to Jacob (TGA)
www.jacobsheart.blogspot.com
I love reading your blog and seeing all the amazing things God is doing. What a blessing your family is to Seton NICU and others that are coming in contact with you. I know God is using you to bring so many people closer to Him. Will be praying for Lila and Ryan's hearts. I am sure they will heal perfectly. My daughters were 24wkrs and had the PDA surgery at 4days old. Today they are healthy 14mth olds with out any issues.
Jennifer Cheatham - Mallory/Kelby 14mths
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