Teddy’s due date was on Monday! He should now officially be here, it’s a huge milestone. In fact they start counting his age differently in the NICU now. Until now they’ve counted his actual age the way we do on this blog, by days, but also by his gestational age- so what we would be saying if he were still in the womb. So on Sunday he was 39 weeks and 6 days. As of Monday however we start counting his “actual” or “adjusted” age. We will continue to use this “adjusted” age as our benchmark for his developmental goals. So, generally speaking, we’re looking for Teddy to be hitting normal milestones for a newborn and a 1 month old in the next month. Of course, he HAS had some more practice in many things than most newborns. He loves staring at and tracking his mobile, he looks at people in the face and is likely starting to see more colors than the newborn’s black and red. He’s been doing tummy time for the past month. I’m proud to say that my “1 day old” actually rolled over on his own on Tuesday, from stomach to back.
I’m not going to try to be eloquent here (not, that I’ve achieved that in the past), but rather fit in as many facts in as little time as possible. Teddy is great! 7 pounds 6 ounces this morning. He’s a regular monster in the NICU these days.
He had his eye exam yesterday to check on his ROP (retinopathy of prematurity) and for the first time the doctor said that he eyes looked matured. Instead of saying “We’ll see him every week,” or “Every two weeks,” he said that they would want to see him again in 3 weeks. There wasn’t a mention of regular checkups! This is wonderful.
He still has CLD. He has chronic lung disease. Short and unacademic summary: He developed this in the weeks he struggled to breathe and was on the vent and it caused permanent damage to the lung tissue he has. The thing is that he’s going to grow a lot more lung tissue as he grows up, and the damaged lung will form less and less a percentage of the whole, until it doesn’t really affect him. But now it means that he is having a hard time weaning off of oxygen. He’s been cycling from 3 to 2 to 1.5 to 3 to 2 liters of flow for the past month with, until yesterday a consistent need for 30-40 percent oxygen. Yesterday saw him have some ability to do well in the lower 20s percentages. But this is accompanied by large desats and a very blue looking baby – something that until recently he had had fewer and fewer of. It’s frustrating, even as we cheer on the babies who have been on the journey here with him, we wish that he too was now off of oxygen. His lung disease means he has to work to breathe. It’s tiring. But they WILL send him home on oxygen.
Eating is tiring too. They WON’T send him home until he can take all of his food by the nipple. This isn’t true in the very long term, but let’s not go there – he’ll get there. But it’s slow. While he is now gestationally and size wise a typical newborn, he still can’t automatically do all the things we take for granted in newborns, like the ability to suck, swallow and breathe all at the same time. It exhausts him, and he is still unable to do it for all of his feeds. Right now, instead of nippling every other, or every third, we’re starting to nipple him any time he looks awake enough or shows interest in it (smacking his lips). Then, if he poops out during it, we gavage the rest via his NG tube. If he is blatantly too tired to try, and he is very good at letting us know this- he just won’t open his mouth for the nipple, then we just gavage him for a whole feed. This is what keeps him in the hospital.
But the doctors are preparing for him to all of a sudden “get it.” They’re talking about switching him to the type of oxygen machine that we would use at home. Its called a pedia flow (don’t hold me to this, I haven’t googled it yet, so I might even have the name wrong). According to his respiratory therapist the difference between this and the machine he’s on now is there is no blender – no machine mixing regular air with oxygen, which is what we talk about when we speak of oxygen percentages. This machine would provide him with pure oxygen, something they wouldn’t do until the risk of ROP was passed. The eye doctors proclamation of maturity was a big step toward this! His eyes are ready for pure oxygen without risking damaging immature capillaries. SInce it is pure oxygen, there isn’t a need for the flow that he currently has. Right now he’s getting 1.5-3 liters of flow, on the pedia flow he could conceivably only need .5 or even .1. Dr. Fuentes said that some babies, once placed on this different type of oxygen, wean very quickly, so I’m hopeful.
It’s daunting to thinking of bringing home a baby, our first baby for two people with very little experience with them, on oxygen. More than that, his immune system and especially his lungs will be very susceptible and fragile. A small virus called RSV, what looks like a minor cold in adults, could put him back in the hospital on the ventilator, or worse. This is why Teddy won’t be able to go to the wonderful daycare he and Gabe were on the waiting list for. It was right across the street from Heather’s office as a part of the university’s childhood development graduate program. He can’t be in the same room with other little children. So we will need to hire a nanny instead. It’s funny, these little things are hard… We will also have to be very careful about who touches him, and who comes in our house. While many parents of preemies totally isolate them when they come home, we really don’t want to do that. But to give Teddy the social interactions of friends and family that we want him to have, we’ll have to ask those friends and family to remove their shoes at the door, wash their hands immediately, sanitize their phones or place them in bags, and use sanitizer before touching Teddy. And we’ll have to trust everyone to not come in if they are sick, or have been around people who are sick. This is a big thing, and also hard.
But the thought of having our boy, our big, big boy home is still the most awe-inspiring miraculous thing. I hope hope that it’s soon. His nursery is all ready for him, filled with the gifts you’ve all sent, and family items passed down through the generations.
I have so much to tell you all, and no time these days. Thank you. Thank you so much for everything. It’s overwhelming the love and support we’ve received. Thank you.