Tag Archive | physical therapy

Preemie Christmas Part 10

Having a cold can really derail things. 

On the 10th day of Christmas, the NICU gave to me: 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 

Preemies are often “followed” by various specialists in the nicu. Depending on their specific health concerns, some babies could be followed by several doctors in addition to the normal neonatologists. 
Little Miss Minion had a very diverse medical team looking after her during her 3 months, so get ready to meet them! 

1. Neonatologist: a doctor who specializes in preterm/newborn babies. These are the main doctors of the NICU. Every baby in the nicu is followed by the neonatologists. 

2. Respiratory therapists. These people are assigned to babies who are using any kind of breathing assistance, whether it’s a ventilator, CPAP, or cannula. They come in periodically and check the settings, adjust hoses, and generally make sure that everything is working perfectly. 

3. Physical therapists.  Even in the nicu, physical therapy is a big deal. PT is there to create a plan to keep baby’s muscles developing properly. Babies in utero have the resistance of the womb to push against, while “outside babies” have nothing but the special beds of the nicu, which aren’t quite the same. PTs are also the main players in keeping the baby from developing a flat head and/or torticollis, which is imbalanced neck muscles. 

4. Occupational therapists. This one threw me a little at first. What could a Preemie possibly need with occupational therapy? Turns out, they serve a pretty important purpose: setting the plan for baby to learn to use a bottle. Many preemies find bottle feeding to be easier than breastfeeding, Little Miss Minion included (see my previous posts about the joys of pumping). The occupational therapist determines the best position for each baby to feed in, the size of bottle nipple, and they pin point the stress cues that each baby exhibits during a feed. Little Miss Minion was fed by “pace feeding,” which is when the baby is propped up like they are sitting in a chair and the bottle is only slightly inclined. This allows the parent to control the flow of milk. She used an Ultra Preemie nipple for several months before graduating to the regular preemie nipple, and then FINALLY the regular newborn nipple. 

5. Opthalmologist. This is a medical eye doctor. Many micro preemies develop ROP, or retinopathy of prematurity. This doctor’s job is to monitor eye development and see if ROP is occurring or if other issues are happening in the eyes. 

6. Pediatric neurologist. This is a doctor who specializes in the workings of the brain. They make sure that the brain is functioning correctly, that the messages are being transmitted and received. This doctor can easily be confused with…
7. Neurosurgeon. This doctor also specializes in the brain, but in the physical function of it. In Little Miss Minion’s case, the neurosurgeon monitors her hydrocephalus and makes sure her shunts are working. 
8. Lactation specialist. This is a person trained to help new moms breastfeed or pump. 

9. Nicu follow up team. This is a group of nicu personnel who test and measure the progress that the preemie makes once they graduate the nicu until they turn 2 or 3. 

10. Pediatrician. This is the doctor that the preemie will see once they graduate. 

Orthotics: Round Two

Little Miss Minion got fitted for her second pair of orthotics this afternoon. She’s on her toes much less, but enough to cause trouble down the road when she gets really good at walking. She’s toddling around in 10 foot bursts now, but sometimes, she will go up on her toes and lose her balance. The orthotics will make her muscles stretch so they aren’t so tight (hypertonia), as well as get her used to a correct gait for walking (not going up on toes). They took casts of her feet and ankles, which she did not appreciate. They send those off to be fabricated into the actual orthotics, and we should have them back in about two weeks. Then we have to find shoes to fit over them! Little Miss Minion is going to have shoes! She was hysterical while the measurements were being taken, until the physical therapist and I bribed her with food and the iPad. The PT said “she’s such a toddler now, wanting the electronics!” And she figured out how to open my phone screen…so if you get a weird call from me that sounds like a hyena, it’s not me. 

We got the official letter from the opthalmogist, which basically says the same things I already talked about. He sent a copy to her pediatrician and another copy to her neurosurgeon. Eye pressure and shunts can be related, so it’s probably a good idea to keep everyone in the loop. There were no concerns with her shunt, so this is a good baseline. Although, if her eyes are anything like mine, it’s just going to be a long, slow slide into glasses and contacts. But at least it’s hereditary and not a preemie thing! 

Other than that, there isn’t too much going on. Oh, she’s getting another tooth! So now she’s got her two front, two bottom, one canine, and the other one is coming in. And she starts a daycare center this week. We took her by when we signed her up (we visited a couple of times without her) and the other kids are soooo big. They are all between 14 and 12 months old, but they must outweigh her by five pounds and a couple inches. Small but mighty!

15 Month Check Up

Little Miss Minion had her 15 Month checkup this morning, so I have new stats, as promised. She is 17 pounds, 8.9 ounces,  which is about 9 1/2 times her birth weight. She is 27 1/2 inches tall, which is s little over twice her birth length. She’s at 7 percentile on the FULL TERM growth chart. Which is awesome. This means that if you took 100 girls born on her birthday at full term, she would outweigh 6 of them. 

The pediatrician is very happy with her. She’s doing great in terms of growth, and she’s doing really well developmentally, even using her chronological age. She got more shots today, so we can kiss chicken pox, MMR, and Hep  A goodbye. 

Next month will be a busy one. She’s got an opthamologist  appointment to check out her eyes, a nicu follow up clinic, her early intervention meeting, and probably a new orthotics appointment. Busy, busy, busy. Such is the life of a former micropreemie. 

And, we have an almost-walker!  She uses her walker to walk across the house. It’s her new favorite thing. 

Almost April

Little Miss Minion said her first word tonight! Drumroll….it was “Mama.” So exciting. 

In other news, we are looking at getting orthotics for her feet. Due to her small areas of brain damage, she’s at a higher risk for hypertonia, or high muscle tone. Basically, this means that the muscles would be in the stretched position instead relaxed. She does this with her toes, so we want to get them fixed before she starts trying to walk on them. What will happen if we ignore it is that she will walk on her tiptoes. Right now, she stands up on her toes whenever we pull her to standing, and when she’s sitting down, her toes curl in frequently. 

The orthotics will be custom made, and will look kind of like shoes. They will stretch her foot muscles while she sleeps, allowing her to stand and walk normally. They are similar to the ones I wear for plantar fasciitis. When I manage to remember to wear mine, my feet always feel so much better, and I hope hers do too.

She’s getting one more Synagis shot, since rsv is pretty bad this year. I’ll have an updated weight on her then too. 

Other than that, not much to report. She’s rolling herself everywhere these days, and starting to get into everything at floor level. Time to start putting things up.

NICU Development Follow Up

Every six months, Little Miss Minion will be evaluated to make sure she is meeting age adjusted milestones. She had her first one the other day, a little after her nine month chronological birthday! 

The results: she’s doing really well. She’s right on target for her adjusted age of 6 months on cognition and language. She’s at 7 months for fine motor skills, and she’s at 8 months for gross motor skills. Fine motor skills are things like picking stuff up, moving things with your fingers, reaching for things. Gross motor skills are things like rolling and sitting. She’s got two and a half more years to catch up with her chronological age, so this is a great start. 

They looked at tons of different things. We started off with a debrief of her nicu stay and what she’s been doing since she got out. We talked about her shunt stuff, her eating, her sleep habits, her general temperament. They loved how alert and interested she was in everything going on. They weighed her and measured her height. She’s 14 pounds, 10 ounces, and 24.5 inches tall. She’s staying right on her curve for both, which is great. 

The next thing was a visit with physical therapy, which was pretty much an hour of playing with her. They watched how she played with different toys, how she tried to get to toys placed just out of reach, how she reacted to different noises while playing. They stretched her, moved her arms and legs, played with her fingers and toes, watched her roll and reach for things. 

The next thing was going over her results with one of the nicu doctors. They went over each of the areas that the assessments covered and how she scored. We got a list of things to help her build on, and then they gave her a hearing test. The hearing test was two different tests, conducted in a soundproof booth. I held her while they did both tests. The first one is a repeat of the one she was given in the nicu. They put super fancy earphones on her and bounce sounds off her eardrums to test the reaction of the cochlea, the physical part of the ear that lets you hear. Some sort of sensor thing in the earphones measures how the cochlea react to the noise. The second part of the test was to see if she would turn to hear noises. One person would distract her with a toy and then someone else would talk to her on a speaker in the corner of the room. She passed both tests with excellent marks. 

Little Miss Minion needed her hearing tested for two reasons. The first is because she had meningitis during her nicu stay. The illness can cause hearing damage by itself. The second reason is that the antibiotics they used to treat the bacteria are ototoxic, meaning they can cause hearing damage. She was on those antibiotics for 21 days. Of course, hearing damage would be a small price to pay, but we are glad that she got full marks. 

The next NICU follow up will be in six more months, when she will be 12 months adjusted. 

A Banner Day of PT

Our physical therapist was so excited yesterday! She was sick last week and therefore canceled, so she hadn’t seen LMM in two weeks. So much rolling, raspberry blowing, reaching, sitting, kneeling, and vocalizing! Two weeks has made a huge difference. She’s very excited about the rolling, and the next mobility step is…CRAWLING! So we are prepping her by stretching her knees and her hamstrings so she can scoot, which she is starting to do already. She’s bringing her legs up when she’s on her stomach, which is really good. 
Looks like we need to start baby proofing the house!

8 months old

Sorry it’s been so long since the last post…time flies. 

Little Miss Minion turned 8 months old on the 14th! And she turned five months adjusted on the 6th! Some of her favorite things include smiling, laughing, screeching, grabbing things, and putting everything in the world into her mouth. She’s rolling from belly to back pretty consistently, although only over her right arm. Her PT thinks this might be a muscle imbalance from her last surgery, since she preferred her right side for so long due to the new shunt. We are working on getting her to equally use her right and left sides, which is something I feel like we’ve been doing in one form or another since she came home. First it was the left, now it’s the right. 

Mr Minion and I went on our first vacation in like a year and a half. It was also the longest we have been away from her since she was born. The previous record was about 16 hours. This was four days, and it was not nearly as hard as we thought it would be. We felt like terrible parents until we realized that we had gotten used to leaving her at the NICU. Plus, we knew she was in good hands (thanks to Mr Minion’s parents). We went to Universal Orlando to see Hogsmeade and Diagon Alley (Harry Potter) and it was amazing. We had seen Hogsmeade before, several years ago, so we focused on Diagon Alley. And they have hot Butterbeer now! I’ve been researching recipes since we got back. 

I was very anxious about traveling and pumping. Going there was not going to be a problem, since all I had was my pump, but coming back, I knew I would have several days of milk, about 100 ounces. What would I do with it while I was in Orlando? Would they let me on the plane with it? I did some research and printed out the TSA rules about breastmilk and pumps as medical devices (therefore not counting as one of your carry on bags) and highlighted the parts that applied. I put several copies in my pump bag, just in case. They sent the pump through the X-ray machine and cleared us without a second glance to leave home for Orlando. Coming back through, they pulled the cooler bag full of milk for a physical search, which I totally understand because it looks like a bag of liquid, which, as we all know, is VERBOTEN on airplanes. The guy put gloves on (which must be standard procedure), which the preemie mom in me appreciated because of germs. He opened it and picked a couple of the bags up to see what was in the cooler. 

Another mom (with a baby) was getting her formula and a couple bags of milk examined as well and said something like “good job, Mama! Liquid gold right there. I wish I could pump like that.” It made me feel really good to have a total stranger acknowledge that the effort and time and frustration of pumping is worth it. And it reminded me that, even though I would much rather LMM take it “from the source,” I’m still doing something that not all moms can do. Even though breastfeeding was incredibly difficult for her in the nicu (suck, swallow, breathe is so much easier with a bottle), and I pretty much gave up on it because she handled a bottle so much better, and even though that was my last possible “normal” childbirth experience that got thrown by the wayside, I am still doing something incredible for her. 

LMM got her monthly Synagis shot this week, and her newest weight is 14 pounds and 0.8 ounces. I’m totally counting that 0.8 ounces because that is 2% of her birth weight. She’s now 7 and 1/2 times her birth weight of one pound fourteen ounces, and she’s 24 inches tall, which is only 3 feet shorter than me. 🙂 And it’s so close to double her birth length of 13.5 inches. 

I’m going back to work at my physical office in a couple weeks, but they are going to let me keep working from home a couple days a week. I’m so unbelievably lucky that they have been willing to let me work from home since she came home in August. We hope to start her in daycare around May or June, but I’m positive that keeping her in isolation this winter has made a huge difference with her immune system. I asked her pediatrician about when Preemie lungs catch up to full function and immunity, and she said that it’s usually about a year for every month of prematurity. Since LMM was born three months early, she will probably catch up at around three years old. Since she was such a rockstar at birth, not needing a ventilator at 28 weeks gestation, I have high hopes for her lungs. Thank you, steroid shots and surfactant!

Other than that, there isn’t too much going on here.