Hi everyone. We’ve had a good week overall. Jacob’s been home for just over a week now, and we’re getting into a groove. Charlie and Sammy are doing their things in the hospital and we’re getting closer to hiring a nanny.
Let’s start with Jacob. He had visits from the John Muir Home Health nurse on Sunday and Dr. Nash on Tuesday. He weighed about the same for each visit: 5 pounds, 8oz. Dr. Nash’s scale had him slightly higher at 5, 8.5.
Monday I had to travel for the day to Los Angeles, so Kristen had him on her own for about 19 hours. Overall she did really well, and so did he. I know Kristen was completely wiped out though, and when I got him at 12am, I took over “watch” through the night so Kristen could get some better sleep.
We kept the dogs downstairs with me and that has really helped them get used to Jacob being in the house. Finley is still extremely excited, but they’re not doing nearly the whining they’ve been doing. They’re still fascinated by him though, so we share that with Finley. Sophie’s barely interested and is enjoying all the distraction, since that means Finley’s food is left alone and Sophie can sneak in and eat it. I think Sophie’s had 2 breakfasts and 2 dinners at least twice this week.
Jacob didn’t poop the first few days we had him and then on Thursday night he proceeded to fill three diapers around midnight. It must have felt so good. He regularly “toots” throughout the day. Kristen calls him “Toots McGee.” There may not be much poop, but diaper changes are a regular occurrence – every three hours. This week we filled up our first Diaper Genie bag. If this is what we get from one boy in a week, I can’t imagine what it’s going to be like with three boys in the house!
We’re having fun with him home and we think he’s growing a lot. We’ve upped his feedings to about 2.5oz, or about 75mL, though on Saturday morning he took on 90mL, or 3oz.
On Saturday morning, Charlie clocked in at 2640 grams, or 5 pounds, 13 ounces. He’s gaining weight quickly. The doctors have him on 24-calorie formula to help him grow faster, which should produce better lungs.
Last Sunday, Aunt Jamie and I gave Charlie a bath and it turned out to be a total fail. We didn’t get the cheese on his neck folds or under his arms. It left him as a stinky boy. They nurses fixed the problem.Now we know better.
Charlie is back on the Vapotherm machine, at 2 liters per minute and 21% oxygen. This is as low as the unit will go. So it’s just providing some air to help give him a little help in breathing. He’s had a lung that’s not fully inflated, so this help isn’t a bad thing. He’s definitely breathing a bit slower now, which is good. He’s having fewer desats too.
Charlie’s been doing better with his bottle feedings. He’s moved from Pathway A to Pathway C, which is 4-6 bottles per day when cues are present. The nurse on Saturday morning thinks he’ll be on this Pathway for quite some time. I was thinking he’d be home next weekend, but maybe not.
Sammy’s looking better, though he’s still a bit puffy, and he’s still on his VapoTherm machine. He’s now 6 pounds, 2 ounces as of Saturday morning. He’s growing so big because they are feeding him 27-calorie formula. Similar to Charlie, the idea is to get him growing as fast as possible and that will help his lung function.
He’s still getting anywhere from 24% – 35% oxygen on a daily basis. When he’s on his tummy, about an hour after feeding, he’s at the lowest range. He’s at the higher range when he’s on his back shortly after a feeding. The little guy just needs more time.
On Friday, he had another round of Lasix, the diuretic drug. This is designed to help reduce some of the puffiness that we see, and as of Saturday morning it’s working. But his immature lungs are likely to cause fluid buildup, and swelling, again, so he’s likely to get another dose in a week or two.
We’ve made a lot of progress in our search for a nanny. On Saturday we found somebody we think we like. Now it’s just a matter of putting her through a “test” day, doing a background check and hopefully she’ll be hired by next weekend.
This coming week, I’m off to Miami for 3 days, 2 nights for some business meetings. The good news is I’ll get to see my dad and have some good Cuban food. You can’t get that here in the Bay area. While I’m gone, Kristen’s mom, Karen, will take a few days to come up and help out. Then I’m going to take the week of February 8th off to help get caught up on things.