I’ve made it to the first milestone the neonatologist mentioned last week: 29 weeks! From here on out, Hope will not need synthetic surfactant whenever she is born because the steroid they gave me has had the week it needed to become effective. The next biggie he mentioned is 32 weeks, so we’re a quarter of the way to that one. I don’t remember what the change is at that point; I’ll have to go back and look later.
Not-so-fun fact that I forgot to report in yesterday’s “one week” update: in the first week in the hospital I was stuck with needles 20 times that I am sure of. There may have been some the first day that I forgot. I cannot count my bruises from said stickings; they often blend together.
Today was a really good day! Particularly because of my conversation with a physical therapist this afternoon. I thought this PT evaluation was going to just be so that I know what kinds of movement and exercise are safe for me at this point. While that particular evaluation will happen tomorrow morning, today’s meeting with the PT was actually to talk about the NICU. I was confused when she told me that. She is a neonatal therapist, and she told me all about what her rehab team of PTs and OTs does upstairs with the preterm babies in the NICU. It was fascinating! I had no idea PT or OT was even a thing that happens with tiny babies! She called what they do “Developmental Care.” In a nutshell, their job is to recreate the physical environment of the womb to the greatest extent possible outside the womb to aid the baby’s physical, sensory, and central nervous system development (there may be other categories too but those are the big ones I remember). I told Nathanael tonight that I’m actually excited (although I know it will be a hard road) to help the baby reach physical and developmental milestones she normally would have reached naturally just because of her environment in utero.
The PT showed me a few pieces of equipment they use in the NICU to help support the babies physically when they’re lying down and to create the resistance and pressure around them they need that the womb provided. Preterm babies need to develop flexion in their limbs, and in order to do that they need something to resist their arms or legs when they try to extend them out. Apparently before like 24 weeks babies are actually spread out and floppy in the womb. They start to develop flexion and curl into the little ball we’re used to seeing newborns in at 25 or 26 weeks (I may be off by a week or so; working from memory here). If a baby is born really early and then allowed to lay flat in a crib, the weight of gravity is so strong that they can’t learn to pull their arms and legs into their midline, which is important for their proper development. She said “Think about all the things you do at your midline. You brush your teeth, your touch or scratch your face, you feed yourself.” Babies need to be able to bring their arms in to eventually learn to comfort themselves by sucking a thumb or touching their ears or having their hands up by their faces. And the eventual ability to move their arms in and out builds muscle tone. So PTs in the NICU position babies in their beds very carefully to promote their gain of strength and flexion and all sorts of things. They use a “snuggler” to provide resistance for a baby’s legs or bottom, depending on the baby’s position. They put this wormy pillow thing around the babies to provide that same resistance to their arms. There’s another pillow that’s called the Friendly Frog or something like that that they can manipulate the weight of by shifting the filling of it around to either provide pressure against the baby’s head like they would have in utero, or overtop of the baby’s side or back or arms.
I also learned that for premature babies it’s actually really helpful for them to sleep on their stomachs because it helps improve their trunk strength and provide resistance against their arms. It also aids their digestion. Pacifiers are also a really helpful tool for preemies because it helps teach them to suck even when they’re not being fed by mouth yet. When a baby is being fed by a tube they’ll give them a pacifier at the same time to help them learn to suck while associating the motion with getting food.
Apparently it’s not good to lightly touch or stroke a premature baby. They need firm but gentle touch, hence some of these weighted pillow-type devices. A light stroke can be too much for their underdeveloped CNS to handle. They get overstimulated really easily. She said once a baby is big enough to hold and you’re rocking them and singing to them you may notice they’re starting to give you stress signals like avoiding eye contact or flailing or arching. They’re probably overstimulated. She explained that it’s really important that these little ones be kept in quiet, dark environments, and that we’re careful to keep stimulus to a minimum. Really premature babies can’t handle being touched and spoken to. One at a time. I’m pretty sure Hope is already gestationally beyond that level of sensitivity, but it was still super interesting to learn about.
After 32 weeks OT will also get involved in a baby’s care. They focus mainly on feeding and infant care like something called “swaddle bathing” (don’t know what that is yet). The woman I met with didn’t go into a lot of detail about the OT side of things. I’ll have to learn more about that later. There was so much more that she told me about but I can’t remember it all right now, and it would be a lot to share every detail anyway. I’m sure I’ll add other things into future posts as I remember them or find myself pondering them.
I forgot to mention a couple of days ago that I called the NICU to find out if I would be allowed to come up and hold babies that need to be held. They do have a “Cuddlers” volunteer program, and they thought it was sweet that I wanted to do that, but you have to take a training for it and the next training isn’t until June. When we went up for our tour on Monday night and I asked if the nurse guiding us was the one I talked to, she said no but that even if there was a training I might not actually want to volunteer for that; as she put it, “You’ll be up here plenty later. You don’t want to spend more time in the NICU than you have to.” Probably wise advice. Another friend also wondered if holding tiny babies could affect my hormones and potentially trigger labor, kind of like when a nursing mom hears a stranger’s baby cry and her own milk lets down. Also a good point! I hadn’t thought of those things. I just like to hold babies and want things to do while I’m here.
Our BPP this morning went well, all of the monitoring went well (which I learned yesterday is called a NST: non-stress test. All the nurses on my floor just called it tracing or monitoring, but upstairs in maternal fetal medicine they call it an NST), and Hope has been moving like CRAZY in the last 24 hours. I learned during our sono this morning that the reason I’m feeling her movement so much more today is because she rotated and is now facing my belly (still head down). So all her limbs that she has balled up in front of her are against the surface of my belly now. It has looked like there’s an earthquake happening across my stomach so often today. I love it.
Another highlight of my day that I cracked up at myself about for quite awhile is that I started and stopped my own monitoring this afternoon! This morning as the nurse was getting it setup I was helping put the little sensors on my stomach like I have been the past couple of days (but I hadn’t had her as my nurse since last week), and she laughed at how I knew what to do with it already. I told her I keep asking the nurses if I can just hook myself up and let them know, and she said something like “You probably could,” or something that indicated “go for it” in my mind. So I told her “Ok next time I’m going to do it myself and I’ll call to let you know.” She laughed and walked away. So this afternoon when I had to be monitored again soon I was out walking the hall and saw her, and I told her I was going to go do it myself. She laughed at me and said she’d come check on me soon. And I did it! Well mostly. I did it all exactly right but then the paper in the machine jammed! I didn’t realize it jammed though, so I thought I must have done it wrong and tried a few more times, pressing the buttons in different orders. The sound and everything was working, it just wasn’t actually recording anything on paper. So I gave up and paged the nurse, turned it off, and when she came in I started it up again so she could tell me where my mistake was. She said I did it right, opened the paper tray, and found that it was jammed. So I DID do it myself! More or less. I turned it off and put it away myself too and thought about taking the paper with the tracing out to the nurse’s station for her, but then I thought if she wasn’t there somebody else might scold me for walking around with part of my chart without it being documented anywhere yet. She saw me walking a bit later and was like “You took yourself off of it too?!” Haha :o) Little things like that are helping me have fun here.
Oh I also got the code for the “pantry” today, so now I can get my own water and juice and put my own snacks from home in the fridge without having to bother the staff! Yay independence!
So I’m 29 weeks pregnant. And we’re a full day into the second week of our hospital adventure. So far everything medical is still going really well, but I think Nathanael and Ella are both starting to feel worn down by all of this. Nathanael is juggling so much right now. I can tell he’s exhausted. Luckily my mom will be here on Sunday, and I think having a consistent person there for Ella every day will be a huge relief. And Ella seems to be teething, so that’s making her very sensitive right now, and having all this disturbance to her normal life to deal with while she’s also in pain made for one pretty rough day today. There were lots of tears from Ella and multiple FaceTime calls to me in hopes that that would help soothe her. Poor girl. Hopefully she’ll get a good night’s sleep and rally a little bit tomorrow. Having Grandma around every day will be a big help. As wonderful as everyone has been so far in taking care of her, and as much as she has had a blast with so many friends coming to play every day, a whole week without the usual routine really wears on such a little person. Babies and toddlers really need consistency. Pray for her and for Nathanael to be able to tough it out a few more days until some longer term backup comes. And many thanks to everyone who is already helping so much by spending time with Ella and dropping off meals. This would be a million times harder without you all.