Well, Charlie is celebrating his one-week birthday at everyone's favorite place, inside a plastic box at the hospital. He had a very stable, uneventful weekend, so we are happy about that. Today was test day and we got some good and bad news. They repeated both the head ultrasound and echo cardiogram this morning and we were able to talk to Dr. Patel about the results. The good news is that the head ultrasound came back looking good. The radiologist said that if anything it looked clearer than the last one. That's good news because it means even if there was a brain bleed at some point, it was small and is no longer bleeding. We're still praying that there was never any brain bleed at all, but the important fact is that if there was, it has since stopped.
The bad, but not unexpected, news is that the PDA (open valve in the heart that should be closed) is still open and looks even a bit larger. Dr. Patel also told us that the heart is showing some signs of stress in one of the chambers because it has to compensate for the open PDA. The silver lining is that Charlie is well enough at the moment for the doctors to try one round of the medication. Interestingly, the medication is just a small dose of ibuprofen which will restrict the blood vessels and hopefully cause the PDA to permanently close. Charlie will be given one dose a day for 3 days and then they'll repeat his echo cardiogram to see if it worked. The possible side-effects of the ibuprofen are not too terrible, but it sometimes doesn't work to close the PDA and the surgery may be necessary anyway. Because the surgery is essentially a 100% effective option to close the PDA, we did discuss the possibility of just doing that right away, but in the end the consensus is that it is worth waiting 3 days and giving the medication a shot to avoid the trauma of surgery.
A couple things we left out from before that might help explain some of the photos below are that Charlie is a little jaundiced so he gets to spend a lot of time under the light lamp (hence, the eye mask). Also, we've discovered that he's extra sensitive to noise, so the nurses made up a little sign for him. Hopefully as he gets healthier, he'll get less sensitive.
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7 comments:
You are in our prayers. I pray for wisdom and clarity. I pray for the doctors and nurses that will be a huge part of the beginning of Charlie's life and I pray for peace of mind. I pray for sleep that is restful and energizing, and I pray that when the two of you, as parents, have big decisions to make you have unity and peace of mind.
God bless your beautiful little family.
Christian
I am thinking of you all and especially little Charlie every day! I said a little prayer for him at Easter Mass. Tatum spend last Easter in her little plastic box...not an ideal day. Hopefully you were able to enjoy some family time. Charlie looks strong for a little 26-weeker! And every day is a step in the right direction. Keep the posting up, I'm happy we have a way to check in.
Thank you Chuckie and Shannon for creating this site and keeping us all posted. We think about you and your amazing little man Charlie all the time and are constantly asking each other, "I wonder how things are going with Charlie?" Our family and friends whom we have told about your son have also been asking for updates as we are all praying for you. This way we can keep everyone informed. We love the pictures too!!! he's such a cutie pie! I love the one of Shannon with her hand on his head. Please stroke his precious little head for us and tell him Joshua, Jenny, and Levi are thinking about him, praying for him, and can't wait to meet him!!! Charlie is so lucky to have you two as parents!
From the moment I heard the news of Charlie's arrival, he has been in our thoughts & prayers. Thanks for this great blog. He is beautiful! Lots of love goes your way from the Bates' house!
Helen
My friend Jess Shane sent me to your blog - I had a 32 week NICU baby that is 2 now and very sturdy to say the least. I am touched by your comments and remembering similar pictures and the relief you describe, and all the excitement over every bit of good news you get. So, a stranger and thier 2 year old Henry are praying for Charlie and are excited for your graduation from the NICU as soon as possible! Cheers, Liz McDougall
We are so relieved to read your good news tonight - no (or no more) brain bleeding! We also are constantly saying to each other, "I wonder how Charlie is doing?" (like the Blocks) May God cause the ibuprofen to work quickly on his little heart. Your tiny son is in our thoughts and prayers everyday!
-Amy & Rob
Chuckie and Shannon - We are sooo proud of you two! What awesome parents you have become! Charlie looks absolutely beautiful and we can't wait to see him. We are reading his progress and are praying specifically for all of his needs! Congratulations !! Hugs and kisses The whole Miller Gang!
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