Archive | February 2016

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. 

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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!

Paradoxes 

About a year ago, Mr Minion and I were announcing the impending arrival of the Minion, expected in August. Within the past two weeks, I have had no less than five people announce their pregnancies, all due between May and August. As a normal human being, I’m happy for them, of course. As a Preemie/NICU mom, I’m a little less enthused. The smiling faces unburdened by the possibility that things might not go as planned. The ultrasound photos with the estimated length and weight of the baby as a novelty–baby is the size of a blueberry, of a banana, of a large orange–not desperately trying to figure out if the baby weighs enough to survive on the outside, if it is far enough along that the doctors will attempt resuscitation, if needed. The due dates, given as a matter of certainty, not as a day that seems forever away when the baby arrives 12 weeks early. 

Of course I’m happy for them. It’s exciting, having a baby. Soon they will talk about decorating the nursery, buying clothes, planning a shower. Our nursery was painted on a weekend while she was still in the NICU. She didn’t get to wear clothes for the first two months of her life, mostly because even the preemie sized ones were huge, and also because you don’t need clothes when you live in an isolette. My shower was about a month after she was born. I showed pictures of her because she was (obviously) still in the NICU. I had to go stand in a bathroom stall and pump about halfway through. 

Then will come the impatience. “I’m so tired of being pregnant.” “I’m so huge.” “None of my clothes fit me anymore.” “Why won’t this baby just come out already?” “Trying all the labor tricks today!” And it will take all my strength and all my self control not to smack them. How dare you try to wish your baby into coming early! Don’t you know the last couple weeks are crucial to lung and brain development? Not to mention the antibody transfer? Are you really so selfish that you would put your child in the NICU on respiratory support just so that you can squeeze into some jeans?

And they don’t really mean it like that. No one would wish a NICU stay on another family. 

Then will come the birth. The preparation of packing a bag. The excitement when you realize that this is it, that your baby is coming. Getting to the hospital, having leisurely conversations about what to have for dinner when you come home in a day or two. The actual birth. Skin to skin. Holding your baby. Nursing the baby, if you want to. Being wheeled down the hall on your way home, baby wrapped in your arms, getting adoring looks from strangers and people congratulating you. 

Unless you have the baby before you have a chance to pack a bag, to consider your options. Med free? Epidural? The stark terror and disbelief that numbs you when the doctor says that your baby is coming in an hour, even though you are only in the first day of the third trimester and the latest ultrasound puts your baby at a pound and a half, and you have only been able to feel her moving for a few weeks.  Being pumped full of magnesium and boiling alive, unable to comprehend written words. Wondering if your husband will make it back in time, since this wasn’t supposed to be Baby Day. The actual birth. Seeing your impossibly tiny baby for only a few seconds with tubes pushing oxygen to her nose and her head nearly disappearing into the standard sized newborn hats. Giving her a kiss and then being alone as she is whisked to the NICU with your husband following behind. Not being able to hold her for an entire day after her birth, and then only if she keeps breathing and her heart rate stays up. Leaving the hospital after you are discharged without your baby. No one knows why you are here, though you shuffle across the floor, unable to straighten without hurting your incision. Though you wear a name tag declaring you “Mom.” 
But I am happy for the newly announced parents-to-be. I wish for them to get everything I missed out on. 

Trees and Baby Ewoks

It was like 50 degrees here this afternoon so Mr Minion and I took LMM for a walk around our neighborhood. We dressed her in her coat, which is pink and furry and makes her look like a pink baby Ewok from Star Wars. I hooked her into my baby carrier and off we went. As soon as we went out the door,  she knew something was going on. The only time she ever goes outside is in her car seat for doctor appointments. She was looking around everywhere, smiling at Mr Minion and I and taking it all in. As we walked, I noticed that she kept looking up and just staring. It was the trees. She was just amazed by the trees. 

So excited for spring and nicer temperatures so that we can do this more often! How many parents get to watch their kids cognitively experience things like trees and birds for the first time? I guess this is the silver lining of RSV isolation. 

6 Months Adjusted 

Little Miss Minion is 6 months adjusted today! 

Weight today was 14 pounds, 6.8 ounces. Weight at birth was 1 pound 14 ounces. Length today was 24.5 inches. Length at birth was 13 inches. 

Her favorite things to do include eating baby food, screeching, standing with stabilization, and rolling from her stomach to her back to her stomach across the floor. 

Agenda for the week includes another Synagis shot, an MRI, and a neurosurgeon appointment. This will be her first official follow up, because she’s always had a shunt issue that brought us to the ER way before her scheduled follow ups. 

We bumped her up to level three bottle nipples and she is chowing down. We also got her a sippy cup, but she’s not too interested in that yet. 

Attention: Milestones ahead

This has been a good week so far for milestones. Little Miss Minion rolled from stomach and back over her left arm the other day, and tonight she rolled from her back to her stomach! Theoretically, she could roll around the house now, if she wanted to. She’s also gotten really fussy with her bottles in the last couple of days, and since her fontanel feels fine, we are thinking that she needs the next size up in bottle nipples. The pediatrician told us in December that we could start her with a sippy cup, but she hasn’t really been ready for it until now. So this weekend, I’ll be buying size 3 bottle nipples and some sippy cups!

We’re still working with her on consonants. I sing the Star Wars theme to her with all B sounds, and she likes to hear it but she won’t repeat it yet. 

It is Appointment Central over here. She has an MRI and neurosurgeon follow up (the first one we will have made it to, since she kept having shunt issues). She has her Synagis shot. She’s got her six month follow up NICU visit. She gets physical therapy once a week. Sometime soon, she needs to see her pediatric opthomologist, an audiologist, her pediatric neurologist (different from her neurosurgeon), and she’s got another pediatrician check up in there somewhere. 

It’s a good thing I have such a good memory. 🙂 

Trusting the Groundhog

According to the Groundhog, spring is coming early this year. This is the first year of my life that I’ve been excited to say goodbye to winter, mostly because the end of winter means the end of cold/flu/RSV season. It’s a little closer to the day when we can finally take Little Miss Minion out into the world for something besides a shot or a doctor’s appointment. Come on, spring, hurry up!

Our physical therapist is going to be so excited tomorrow when she finds out that LMM has been rolling over both arms. She had only been rolling over her right arm, and it looks like all her hard work has made a difference!