Nora did well throughout the night and got some good rest. Her Mommy and Daddy were also afforded the luxurious opportunity to get some sleep, thanks to our awesome, wonderful nurse and friend Amy S. who stayed up with Norns through the night.
William went back home and I went down the hall to one of the parent sleep rooms. Beggars cannot be choosers and I was delighted to sack out in this quaint little accommodation. ~
Nora’s potassium levels were low this morning. Because of the volume of potassium needed to get in her belly they had to install an NG tube. It’s not safe to have her taking anything orally right now being on the high flow oxygen. Her levels have checked out good since.
She’s had some mild fevers this morning and the cooling blanket was able to keep things balanced out.
The doctors are concerned that a bit of this pneumonia may be bacterial based on one of the lab counts that came back this morning. They opted to insert a PICC line and administer a higher strength antibiotic through that. PICC stands for Peripherally Inserted Central Catheter. This is Nora just before the insertion. We had to leave her for about an hour as it needed to be done in a sterile environment with positioning checks by X-ray. She has numbing cream and warming packs on her arms — not sure which arm they were going to use at that point.
The insertion was successful on the first attempt! Nora now has a trusty PICC line AND this girl is certified!
We heard she wasn’t too happy about some things and is now completely tuckered out.
The fevers have waned and her cooling blanket has actually been pumping some warmth through it instead of the frigid cold! That really relaxed her and she’s been sleeping so peacefully!
The doctor who listened to her lungs this afternoon said they sounded better than they did this morning. Her oxygen flow has been decreased a little bit and generally she is doing better! Our prayers are being heard loud and clear!
While I was waiting for the TPN (liquid nutrition) the nurse came in with a bottle of fresh milkies!!!!! That will be administered to her through her now ND tube (tube going directly into her intestines to bypass the risk of pukes from her belly) instead of the NG (into belly) tube.
Thank you so very much for your prayers and a of your encouraging words!! We are so blessed by all of you!!
The pic line is a wonderful tool that they can use.
I lost a baby girl with Trisomy 18 when I was 7 months pregnant with her. Before that, Nora’s story was one I came across during my research on it. I have since been following your blog but never commented until now. I just love her and absolutely love every single picture of her sweet face. When I read that she had RSV and was in the hospital, my heart sank. I went to work and worried about her all day, nearly in tears every time I thought about her. I’m so glad she’s doing better!! Aside from that, it seems like any time I get on here to catch up, one of your Bible verses always speak to me. Romans 15:13 is what helped me get through my pregnancy and death of my girl so any time I see it here(anywhere really, but especially here since our girls have T18 in common) it heals my heart a little.
So happy to read this update. Praise God for agreeing with our prayers and helping Nora fight off these nasty bugs. She is so sweet and what a tough little sweetie.
Prayers from Westchester Ohio. I have been thinking about Nora and your family since last night when I hoped on to do my “nora check”. May you know that many people are thinking of you guys and praying.
I’m so glad this little angel is doing better. I’ll send more prayers. I didn’t know they could feed babies directly through the intestines. God has made people to invent these great technologies to save lives.
Glad to see such wonderful news. Continued prayers for you all…BTW, how big is Nora now!?! She looks like such a big girl in the pics!
Glad to hear Nora is doing better. I’ve followed your blog for quite a while, but never commented. I work in the CICU at Children’s and just as I was leaving the other morning, they were saying Nora was coming over. As much as I would love to meet this little cutie in person, I hope that Nora is improved enough to be out of the CICU before I come back next week.
Hope her fever is coming back down this afternoon, continuous praying is going on at this CCHMC location! Poor little Nora (and the rest of the family!!)