Tag Archive | feeding therapy

End of an Era

A few weeks ago, Little Miss Minion had a special education evaluation through our school district. They did a series of tests to see how she performed in several areas, like speech and gross motor skills. This morning, we got our answer. Little Miss Minion has been disqualified for further services. This means that, according to the school district, she is caught up with her peers on gross motor skills, speech, language, and cognition.

It’s a strange feeling to know that we don’t have to schedule weekly speech therapy and physical therapy anymore. We’ve had someone come to our home to work with LMM ever since she came home from the NICU. So many appointments, tests, clinics, screenings. Part of me is a little in denial. How can my one pound fourteen ounce 28 weeker NOT qualify for additional services? She’s had five brain surgeries! She has actual brain damage (called periventricular leukomalacia). She spent the first 3 months of her life under 24 hour care in the best NICU in our area.

She caught up. That’s how she doesn’t qualify. Not only did she have to consciously learn to breathe on her own, how to suck, swallow, and breathe while taking a bottle, how to regulate her own temperature, how to regulate her heartbeat, how to live in the world three months too soon, but she did all that and more. 36 months after her dramatic entrance, she’s caught up to where she should be. At this rate, who knows how far she can go?

Our next steps are to come back for another evaluation (if we feel like she needs it) in about 7 months and to continue to be utterly impressed by our little rockstar.

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Preemie Christmas Part 12

It’s finally here,  albeit a little off schedule. 
On the 12th day of Christmas, the NICU gave to me: 12 feeds to freedom, 11 silver linings, 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. 
In the NICU, we never said “when is Little Miss Minion going to have her next bottle?” It was always “her next feed is in an hour.” Nicu jargon seeped into our lives so much, people actually thought I had medical training, with my talk of vents and shunts and tpn and csf. 
When things were starting to look like she would be coming home soon, the nurses talked to us about what she would need to be able to do in order to leave the nicu. The easy parts, the parts that she would either do or not do, included passing her car seat test (90 minutes in her car seat without setting off her monitors), a hearing test, going a week without setting off her monitors, and maintaining her body temperature without the help of the isolette. The big one was that she had to drink all of her milk by herself for about three days. 
From the time she started getting milk, she took it via a thin, flexible tube that went from her nose to her stomach. When she started taking bottles, it was very tiring for her, so they would give her a little bit from a bottle and “gavage” the rest through the tube. As she got better at drinking from the bottle and her mouth muscles got stronger, she took more and more at each feed. 
In order to leave, she would have to drink all her milk by herself for 24 hours. At that point, they would pull the tube. If she could keep it up for two additional days, or 12 feeds, she would be out the door. 
About a week before she was actually discharged, when we were playing a game of “so close, but not enough,” she pulled the tube out herself. The nurses decided to leave it out and see if she still needed it, which she did, but for those 2 hours, we could see her face without nasal cannula, without tubes, without duoderm tape on her cheeks. We had seen her face without some of these things when they would redo the tubes and tape, but never all at the same time. She looked like any other baby, even though she was almost 3 months old and only 5 pounds. We could really see her face, her expression. It was wonderful.  

1 Month NICU graduate

Yesterday was one month since Little Miss Minion was discharged from the NICU. She weighed 5.9 pounds that morning, and she weighed 7 pounds, 14.4 ounces last Friday.

Yesterday, she had a feeding therapist appointment, an occupational therapy appointment, and a pediatric neurologist appointment. These were all follow ups to make sure that everything continues to look good with her.

The feeding/OT appointment went really well. We talked about how much she eats, how often, how she generally does at feeding, etc. I told them we had moved her to a level 1 nipple and explained why, since she was discharged on an ultra preemie size. She was getting tired and angry toward the end with the ultra preemie because she had to work so hard to get anything out. Since she wasn’t dribbling or coughing, we bumped her up to the preemie. When the same thing happened, we bumped to level 1. They were very impressed. We are cleared from having to come back to either of them, unless there is a problem in the future.

The pediatric neurologist visit went well too. He did some measurements, tested her reflexes, looked at her muscle tone (whether her arms and legs flex and relax), and measured her head circumference. We are cleared from him for 6 months. He’ll want to make sure that she is hitting her adjusted age milestones on time. So when we come back in February, when she is chronologically 9 months old, he will want to make sure that she is at least doing things that a six month old can do.

I finally busted out What to Expect the First Year, since she’s 1 month adjusted now. She can do everything for a 1 month old and about 1/2 oz the 2 month stuff. So she’s progressing really well. It does mention smiling, so I’m going to have to work on that. I don’t want her to inherit my chronic bitch face. 🙂

I’m going to a new mom group tomorrow. One of my friends from my old work invited me, and it will be nice to get out of the house for a while. I’ve been looking for preemie groups online and then it finally occurred to me that there aren’t any because none of us can go out!

Looking forward to the long weekend!