November 28, 2023

Today was a busy and exhausting day. Once again David lost weight over night. His doctor is getting impatient with his weight gain so rather than give the 60 ml every 3 hours one more day, he decided to add the extra fortification today in addition to the added volume from yesterday. His nurse today said she’s not convinced he didn’t gain weight since she doesn’t know if he got an accurate weight yesterday, but today his weight matched his weight from two days ago. This means if he gained weight today, that he actually lost weight yesterday. His weight gain, or lack thereof, is the only thing keeping him in the hospital now. Overnight, there was just one bottle that he didn’t finish, otherwise, he was doing great with the extra volume.

Once again, we played around with trying to figure out a way to get David his multivitamin without disturbing him too much. Yesterday, he was gagging on it for a while before he finally settled down. Today, he ate about half his bottle, when we tried to mix it in with the remainder of his bottle. This was a mistake. He initially started drinking his bottle as if he didn’t taste it, but soon he started to get really fussy and refused the remainder of the bottle. Speech came in shortly after his started to refuse it, because I was taking a break and giving him a diaper change. They decided to see if there was another non-vitamin fortified bottle we could try instead to get him, and during the time she was gone heating up a different bottle, David threw up all over. That vitamin is just really hard on his stomach and tastes disgusting. He initially tried the new bottle after she came back and we got him all cleaned up, but his stomach was still upset with what vitamin was still in it. We gave him a break to allow his stomach to settle down as he was now spitting up the new milk but ultimately he never took any more food that feed. 

Nutrition also came in during this whole bottle ordeal. Initially I told her to come back in half an hour when he’d be done with the bottle, but by that time, he had thrown up and wouldn’t take the rest. She just wanted to talk through how to mix the bottles when we go home. We eventually were able to discuss that, but not until much later in the day when things calmed down. 

As I’m trying to get David calm to see if he wants more of his bottle, the home care people arrive with our equipment. It turns out only part of our equipment as insurance won’t cover the scale. It was so busy today that I never figured out what we’re going to do about the scale, but that’s on my agenda for tomorrow. We have an infant scale at home I’m hopeful we can use, but I have to check with David’s doctor to make sure they are ok with it. However, she did bring the pulse oximeter with and gave me a quick tutorial on how to use it. I’m going to have to get used to only testing David’s oxygen levels twice a day rather than continuously because she set his “acceptable” range to 75-85. If he is outside of that range, it will beep at us, and the alarm silence only works for 60 seconds. I would have preferred to leave it on while he sleeps; however, at the hospital, they have slowly upped his acceptable high range from 85, to 87, to 93, to 96, and now 100 because he keeps setting off the alarm for being too high. His doctor yesterday during rounds mentioned that they are closely monitoring that number and are a little concerned with how high it is, and they could tweak his medications to bring it down, but by doing so it affects other things like his blood pressure. So, they are going to leave his current medications in place for now and just monitor it.

The home care lady also noticed David still had an NG tube in, but didn’t have an order for a pump for it. I told her we’re hopeful it will come out before he goes home. After she left, right before his next feed David’s nurse came in with his bottle and announced the great news that she had permission to take out his tube! I wasn’t sure if they would decide to remove it yet since he seems to have one feed per day where he doesn’t finish his bottle and it goes into his tube. Perhaps they averaged that amount over the course of the day, and with the added volume and calories he’s getting now, decided it wasn’t too much. I’m just greatly relieved to not have to worry about that tube becoming dislodged and it’s so nice to see David’s face. He’s really enjoying his freedom since now his hands can move around freely without fear of getting into trouble. He loves to hold his bear with his pacifier now. 

That next bottle was a little difficult to get him to take. I think he was still fearful after the last one. Eventually, he took it, but only because he was tricked. He would take his pacifier, so I let him hold his bear and suck on the pacifier, then I’d get the paci out of his mouth, and put the bottle there instead and he thought he was still using his paci. He’s going to be a little stinker now. 

Finally, shortly after his bottle finished, OT arrived. David was finally asleep after his rough and busy morning, but I figured she could disturb him one final time and then he should take a great nap. She observed his tummy time. We talked about his scar and how to massage it and she gave me some useful tips on how to get him out of his carseat since we cannot lift him under his arms. I asked her about what OT looks like after he’s discharged, and she said we won’t have to do outpatient since he’s doing such a great job! 

Life in the hospital is like a time warp. Time goes by so quickly. David was finally able to nap and it was around 2 PM and I was finally able to get some lunch. You never know who is going to show up to your room and when and time just slips away. I’m hopeful tomorrow will be a calmer day; yet I feel like David will be discharged tomorrow. Everything with him has happened on a Wednesday. He was born, got his breathing tube out, and moved out of the ICU on a Wednesday, so it seems fitting that they’ll send him home tomorrow. I feel like we have a few out standing things to resolve before discharge so we’ll see. I’d like to see two consecutive days of weight gain along with David still needs his hearing tested, and we still need to figure out which app we need and how to connect it for reporting his vitals when we’re at home. I guess we’ll see what the day brings.