Dec 25th, AM:
"Noah was moved to the ICU yesterday because he developed pneumonia. He is doing a lot better today but being in the PICU means we aren't able to visit him as a family (only 2 people at the bedside at a time). Before his transfer he spent most of the day vomiting and stressed his nurse out so much she left in tears. When she came back I gave the poor girl a hug and showed her the things we've been doing to best help him.
I felt bad for her and terrible for him but at the same time this was the nurse who earlier didn't believe me when I described his vomiting at home and lectured me about how sometimes 'spit up' can seem worse than it is. He hasn't thrown up today and his breathing is much better. They also found an obstruction and a narrowing in his intestines that may be causing the vomiting and may mean another surgery in the next few days. I'm hoping Santa left some healthy baby dust under Noah's crib last night."
When I got to the hospital I was pretty angry with his nurse. This was the same nurse who the day before had essentially told me there was no way he was vomiting at home the way I said he had been. They hadn't yet seen it at the hospital. When we got to Noah on this day he had vomit all over his face, his pillow, in his nasal cannula, on his chest, and stomach contents leaking from his g-tube onto his belly. I picked him up out of his bed, held him in my lap and started cleaning him from head to toe with a warm wash cloth. I sent Daniel out to talk to his nurse about the condition we found him in.
She said he was vomiting so frequently that as soon as she got him clean he was vomiting again, so she put him on his side and went back as she was able to clean him up. I was so angry because I had told her what it was like, I had told her how he vomited and how we had been handling it but she chose not to believe me and then when she saw it she chose not to treat him as I would expect her to treat her own child, or really any child. Who leaves a child sitting in their vomit?! I know it's hard to keep up with because we've been doing it ourselves, but because we've been doing it I know it CAN be done. If I can keep him clean while mothering a 3 year old she can certainly handle wiping vomit off of him or ask someone (like the hospital full of people) to help. Anyway, we took care of him and asked that that nurse not be assigned to him again. I did feel bad for her because it was so clearly causing her a great deal of stress and she had only been experiencing it for about 5 hours.
As for his G-tube leaking, I knew how to fix it. A leaking G-tube area usually means the little balloon holding it in place has just lost volume (at least that's what Noah's has always been). I asked the charge nurse to find me a syringe small enough to check the volume. I checked the volume, saw it was low, asked his nurse to hold his g-tube button in place while I filled the syringe with the correct volume and refilled the balloon. Then I cleaned his belly and the G-tube button, attached a clean extension tube, put a gauze dressing around his button to make it extra comfy and then he was set. I think it was good for that nurse to be able to see how to best help G-tube babies but I think it was odd she was assigned to him when she knew next to nothing about G-tubes.
Dec 25th, PM:
|Our Christmas miracle! Noah is doing much better and has been moved out of the ICU and back to the Infant Unit.|
I met with Noah's team of doctors in the afternoon on Dec. 25th. His head pediatrician explained that for the last 3 months we've been acting as Noah's nurses and EMTs when we shouldn't have had to, he should've been in the hospital. He told me we've done an incredible job working around the clock doing a job that they expect their nurses to do 12 hours at a time and with support staff helping them.
On the morning of the 26th Noah had a PICC line placed (basically an IV going from his arm to his heart). He's on TPN through his PICC line now. TPN is essentially getting full nutrition straight into his veins without anything needing to go through his belly. He was on the same thing after his malrotation surgery in the NICU. This means regardless of what they are trying or stopping with his formula feeds he will still always be getting the nutrition he needs. Daniel and I wanted the PICC and TPN when he was first admitted because we knew he would vomit anything they tried to introduce and would lose weight but the doctors didn't feel it was worth the risks before this point, once he had lost a concerning amount of weight. He lost half a pound, dropping him to 4lb, 9oz before they placed the PICC line. We understand the delay because there are a good amount of risks involved with a PICC line, they aren't just a simple IV.
|Dec 26: Visiting baby brother. Wearing a mask to make sure no ickies are given to Noah.|
|Dec 26: Watching Monsters University "with baby brother". She insisted the TV stay positioned so he could see too :)|
"Noah turned 5 months old yesterday and now weighs 4lbs 9oz, down half a pound since going into the hospital a week ago.
He started on formula at 10mL an hour through his NJ tube today (up from 5mL yesterday) and seems to be tolerating it well so far. He did have a twist in his small intestine that was blocking it off and it resolved on it's own a few days ago.
His pneumonia seems to be clearing up. His fever seems to be doing better and his blood work is improving too. They tried again to wean him off oxygen and he would have none of it, desatting anytime his oxygen was lowered even slightly. He's still just got a nasal cannula and isn't on a ton of oxygen but he's probably going to stay with that for a while.
We are doing absolutely everything we can for Noah. Today I asked the nurse to arrange for volunteers to come talk to him while he's awake when we aren't there. Noah is very social and loves to be looked in the eye and talked to. At home if he can't see us he's upset :) He insists on always having Daniel, Aurelia or I in his sight :) The nurses kept saying he was grumpy but seemed medically fine and we explained it was most likely because he was lonely and wanted to see someone. So sad! He doesn't want to be laying there alone with no one to talk to. His NICU nurses knew that well. Several of them told us during his stay that he would get fussy when they would leave and just want them to stay and talk to him. Isn't he sweet? So now hopefully his nurses understand a little better and will be better about spending time with him when we can't be there."
"We are giving Noah absolutely every bit of ourselves and doing everything we can to help give him his best beginning. It has been really difficult giving him all the time he needs when we have Aurelia. During his hospital time we've been trying to be together as a family as much as possible but Aurelia got sick and we've been having to separate with one parent at home and one at the hospital. Noah is so social and loves being talked to so it hurts me so much that he ever has to be alone when he's awake.
We've talked with our old adoption caseworker and our current caseworker to see what other resources are available to us to help best care for him. They were able to help us a little and suggest more possible resources for once he's back home. We are doing everything we can for him and love him to the moon and back. We're talking to hospital social workers, our adoption caseworkers, everyone who can help us figure out how to meet his medical needs at home. We want him to have everything he needs to be healthy and happy. We can all really use lots of prayers right now as we try to figure out what is best for this tiny, beautiful, brilliant, miraculous little guy."