Tag Archive | nicu graduate

NICU Developmental Clinic

Every six months since she graduated from the NICU, Little Miss Minion has gone to the NICU Developmental Clinic for follow ups. Our first visit was nerve wracking. Only a week after graduating from the nicu, I had to transport my three month old to a medical center full of little kids (aka germ cesspools) and see how she was measuring up to her chronological age (spoiler alert:not very well, as was expected). We talked about her NICU stay…how she had come early due to my preeclampsia and HELLP syndrome…how she had stayed 84 days and developed sepsis, meningitis, and hydrocephalus…how she had endured brain surgery at 6 weeks old. They had me feed her, so they could see how she was handling the bottle and the Super Preemie sized bottle nipples. I left feeling like this was going to be our lives forever–shuffling her to and from various doctors and specialists. The weeks and months after that were as I’d expected. We saw pediatric neurologists, opthalmogists, hearing specialists, physical therapists, speech therapists, neurosurgeons, and our regular pediatrician. But as the months went on, the number of specialists began to dwindle as she “graduated” from their services. 

Today, LMM graduated from the NICU Developmental Clinic. I won’t have the official results for a couple of weeks yet, but here are some quotes from today’s appointment. 

“She’s absolutely perfect.”

“I can’t believe she has two shunts and presents like this.”

“I ran out of tests for this category. She blew it out of the water.”

“Didn’t she have some PVL (essentially, brain damage)? I am amazed at her development.”

The only thing we need to keep working with her on is expressive speech. The current theory is that she knows the words if they are given to her, but she has trouble “finding” them when she wants to use them. For example, if you give her a series of pictures and ask where is X, she will find it every time. But take those same pictures and ask “what’s that” and she has trouble. 

I’m happy to cross out another specialist from our list. If I’m not mistaken, this takes her down to just a pediatrician and a neurosurgeon, plus our early intervention team. She graduates from them this spring…and might even test out of the school district program that the early intervention shifts into at age three. 

All in all, it’s been a good day in the Minion household. 

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Hydrocephalus Awareness Month!

Happy September! 

September is Hydrocephalus Awareness month. In case you are a new reader, my daughter Little Miss Minion was born 12 weeks early and developed hydro as the result of a series of complications from an infection, sepsis, and meningitis. She had her first surgery at around 2 months old, followed quickly by three more within two months. We are coming up on two years since her last surgery. 
Hydrocephalus is a tricky disease. For the caregiver, it creates a constant see saw of “is it or isn’t it” because it can mimic almost any illness or general toddler behavior. Headaches, nausea, vomiting, crankiness, sleepiness… could be typical toddler behavior or it could be hydro rearing its head. 

The only cure for hydro is brain surgery. That’s not ok. 

Two Years Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. 🙂

Support

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.

Little Miss Big Eyes

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.

NICU Mom

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.

Social Life

For the first time in 4 months, I went somewhere just for me. A friend from my old job invited me to a local moms’ group a couple weeks ago and I finally worked up the nerve to go. I was planning to go last weekend, but we had Little Miss Minion’s shunt revision fiasco instead. I debated about going because A) I can’t bring my baby and B) I wasn’t sure if I could handle being around so many “normal” babies with their “normal” problems and their moms with their “normal” pregnancies. 

So I went anyway. 

And it wasn’t that bad. 

I’m sure I looked like kind of a creeper, sitting there with no baby, scoping out everyone else’s. We went around an introduced ourselves and our babies. I need to work on mine, since I was flipping through my phone to find an early, not terrifying picture of her to show off. Most of the babies are around her chronological age, even though she physically resembles the 10 day old baby more. The group is technically a breastfeeding moms group, led by a lactation consultant, so we started off with questions anyone had about that and then general questions, then everyone ended up on this huge blanketed play area with their babies for impromptu Tummy Time. This seems in retrospect to be a natural segue, but since I had no baby with me, it didn’t occur to me to join them on the rugs for about 15 minutes. I sat on one of the couches, listening to the different conversations. There was an exchange of birth stories, where I heard how horrible it was that people had to wait five minutes to hold their babies, how people’s “traumatic” births were really just that they caved and got an epidural, about their Miracle Babies who “only” weighed 6 1/2 pounds when they were born (with no actual medical problems, at full term). 

When I finally realized that the conversation was moving to the floor, I started eavesdropping on the different groups to see where I should sit, based on what everyone was talking about. I heard people talking about their jobs, about breastfeeding, about being parents, and then I heard “my language”: someone was throwing around “OT,” “PT,” neuro, therapy, and NICU. BINGO. 

Her baby had aspirated meconium and was being followed by several specialists. She was talking to another mom, who is a nurse. After I started talking to them, I felt much less awkward. 

All in all, it was nice to get out of the house and talk to other people. It was much harder, mentally, than I thought it would be, especially because our group leader is 34 weeks pregnant. At the hospital, I would power walk from the lobby to the elevators as fast as I could without running to avoid seeing the inevitable round stomachs and hear the whining about how they were sick of being pregnant and why can’t this baby just come now. 

I did feel pretty good about my freezer milk stash. People were talking about being worried about running out of milk and supply issues, and the leader mentioned the “mythical” freezers full of frozen milk that people see on Pinterest and think is normal. I said that, due to her incredibly small volumes at first, I now have that mythical freezer and I’m still worried about running out.