While I am indescribably happy that LIttle Miss Minion is out of the NICU, I do miss the 24 access she had to trained medical professionals. Case in point: yesterday, she started refusing the last 30 mls of her bottles. She takes 110 mls normally, which is about 3 3/4 ounces. You get used to measuring things in the smallest possible units in the NICU. Anyway, she started refusing the last bit of her milk. I immediately thought of her shunt. But her fontanel feels ok, her eyes look great, she’s focusing on my face and other objects. She was happy (when I wasn’t trying to feed her) and smiling all day. But feed refusal is the first sign of a shunt malfunction. Its also the first sign of any number of other things, such as just being tired, starting to get sick, not being hungry, having gas, or just not wanting to eat.
Watching LMM go from (appearing) perfectly healthy, albeit very small, to being on a respitator when she got meningitis and sepsis really made my hypochondria go into overdrive. Overall, I think this will be to her benefit. However, it also means that every little shift from her normal behavior triggers an exaggerated response. For example, she might have stopped eating because she was getting an ear infection. That could spread to her shunt, which could spread to her brain, which could give her meningitis again. Or she might have stopped eating just because she had to poop. You can’t tell which it is from the outside. But do you want to take that chance?
Turns out that she just needed to go back on one of her reflux meds. Two doses later, she is back to normal.
Public Service Announcement: Get your flu shot. Apart from protecting yourself from being miserable, you are protecting premature babies, immune compromised people, and the elderly. Cold and flu season starts on Thursday: are you ready for it?
I took Little Miss Minion to the doctor yesterday to check on her shunt sutures. They looked a little red and bumpy, and shunt infections are a BIG DEAL so I wanted to rule that out. They gave her an extra strength neosporin type cream and some sensitive skin soap, and it already looks better today. It isn’t an infection, but they want it to heal faster.
We got a weight on her while we were there. Little Miss 1 Pound 14 Ounces now weighs 9 pounds 7 ounces. Almost exactly five times her birth weight. She’s almost too big for some of her Newborn onesies (I find that the onesies run small).
I set up her play gym with some new additions today. I added a chain of connecting plastic rings for her to grab and suspended her zebra from the middle. She was trying to grab at it this afternoon and actually laughed for the first time. She does this evil genius cackle thing, but this was a genuine laugh. And lots of smiles.
It’s amazing how much progress she makes every day and how quickly she picks up new skills.
First official physical therapy visit was today. Little Miss Minion did very well and earned the long nap she’s currently enjoying.
The physical therapy is offered by the early intervention team she qualified for due to her birth weight and prematurity. They send a physical therapist to our house to work with us and help make sure she’s developing according to her adjusted schedule.
She was very impressed. Head and neck control continues to be one of her strongest abilities, followed by her core/back muscles. After I feed her, I’ll usually sit her on the edge of the kitchen table and stabilize her with my arms around her as I work on the computer. She’s very secure, although I know that description is not the best. Anyway, she builds her back and abdominal muscles doing that, which is getting her very close to unsupported sitting.
She’s smiling much more and is very social, according to the PT (physical therapist). She doesn’t like to track objects with her eyes, but she will follow my face. We think she just prefers faces right now, which is normal.
Our goals for this week include 30 minutes of Tummy Time per day instead of 15. We usually do this after I “commute” home. It’s a good way for me to shift out of Work Mode and back into Mommy Mode. We will be having her lay on her sides (in preparation for rolling over) and having her do baby push ups on her stomach. She can also lay over my legs or be held horizontally on our laps. The goal with this is to build the muscles on the back of her neck. We work the front of her neck when we pull her up from diaper changes by her hands.
The only area that she needs actual practice with is her leg flexibility, and that’s more of a “she’s still too young” issue than an actual issue. They want her legs to be able to stretch a certain amount when they are extended. I can barely do it, and she’s only “behind” by about a 10 degree angle.
All in all, it was a very good therapy visit. We really wore her out.
I’ve been looking for a mom’s group since we got out of the NICU. I mentioned a couple weeks ago that I had gone to one, and it was really nice to get out of the house. In doing this research, I found that the only hospital groups I can find meet during the day during the week. What about working moms? The others I have found are located indoors and mention bringing your baby with you, which preemie parents can’t really do. If I wanted to go back to that group I attended a couple weeks ago, I have to find someone to watch Little Miss Minion while I go.
I’ve contacted the leader of the NICU parent group from our hospital to ask if there is a graduate group that I’m not finding, but I think I might have to start my own. I can’t be the only preemie parent in town who is desperate for a support venue.
This presents some logistical issues. The most pressing is a location. Somewhere outdoors would be ideal, allowing plenty of ventilation and cutting the risk of contagion. Somewhere with seating, perhaps a pavilion, would be great. We would need year round restrooms, especially for little kids. If applicable, we would need the area to be wheelchair accessible. And then what happens in the winter?
I thought about a home group meeting, but that brings up the question of contagion again. Having several people plus kids in a house would be a small version of daycare, and is unacceptable in terms of risk for passing illness.
I think having a Preemie/NICU support group is a very important thing for those of us who live it every day. Normal groups just don’t work for us. Aside from the physical inability to bring our babies with us, the information and experiences are so vastly different from our own that it becomes more harmful than helpful. Listening to people complain that their child was weighed immediately following their full term birth and there was a two minute wait before they were able to hold the baby just grates on my nerves. I personally had to wait an entire day. Mr Minion waited until the next day because she wasn’t strong enough to be out of her isolette and moved around that much. Other people have to wait days, weeks, sometimes months. We need a group who understands the journey. And no matter what people say, nobody really gets the NICU experience unless they have been there.
We had our first real smiles two weeks ago! This is usually not seen until 8 weeks of age so seeing smiles at 4 weeks is very reassuring and impressive. She also rolled herself over twice last week, so no more arm swaddling at night.
We also had our first official outing this past weekend! Two outings, technically. The first one was to a local park, and the second was to another garden type thing. The first one was a test run to see how things would work. We hadn’t used our stroller yet. We put her carseat in the stroller, pulled up the sun shade on the carseat, and then pulled the shade on the stroller up over that. She was completely contained and protected from curious, germ covered fingers. We repeated this system on the second day, with the addition of one detail. Getting into the second garden required passage through a building, so I took the carseat and LMM out of the stroller and made a run for it through the building while Mr Minion took the stroller in the elevator. I felt like I was going in for a shot on goal in hockey, ready to hip check anyone who got too close.
Once we got through that, we walked around outside for a couple of hours. It was so nice to be out of the house. Until May and the end of RSV season, we are limited to uncrowded outdoor areas, free of smoking. It will be worth it, to keep her healthy and out of the hospital.
Something must happen in the NICU that changes people. Maybe it’s the constant alarms and beeping. Maybe it’s the oddly soothing bubbling of a high humidity CPAP machine. Maybe it’s the sight of a tiny human sleeping peacefully amid more wires and tubes than you can count.
When Little Miss Minion cries, I am oddly torn. Part of me is unhappy because there is a problem that is making her upset. But another part of me, the NICU Mom, is happy. Her heart is beating, her brain is working, telling her there’s a problem, her lungs are at full capacity, and her arms and legs flail angrily, able to punch the air with impressive force. The NICU Mom knows that things could have been much different with one week less gestation, with only one round of steroid shots for lung development, or even worse if no one had noticed anything and just continued blindly on for 3 more months.
NICU moms don’t take anything for granted. First real smiles, first laughs, first rolling over–these things have happened to us in the last couple of days. We’ve had to wait longer than other parents, who probably just checked off these milestones from their lists as another normal occurrence. But we know that our wait is worth it, and that some NICU parents won’t get to see their babies smile or laugh or leave the hospital at all. Even when your own child is doing well and her alarms remain silent, the monitors constantly announce that there is another baby who isn’t. And on your baby’s bad days, it was their alarms reminding another family to be grateful for the silence.
Yesterday was Little Miss Minion’s one month adjusted birthday! Today, she gave us two gifts: we each got our very own real smiles from her, and she kicked herself over from her stomach to her back.
I took her surgery bandage off today. My friend M is a nurse and said the tape would come off with baby oil. I could have sworn we had some, but we don’t, so I used sesame body oil instead. It took about 10 minutes and she smells wonderful. The incision looks pretty similar to the old one. It’s healing really quickly.
We’ve got another big week of appointments coming up. On Wednesday, her early intervention team meets to discuss her therapy needs. Right now, she will just be getting physical therapy. On Saturday, she has a pediatrician follow up. On Monday, she has a neurosurgeon follow up. On Tuesday, she has another physical therapy follow up from the hospital. I’m going to need a personal assistant just to keep these appointments straight.