Tag Archive | milestones

Two Years

Two years ago today, I was in a hospital bed on day 2 of hopefully many more on bedrest. I was getting frequent visits from my medical team, consisting of nurses, doctors, specialists, maternal fetal medicine, my OB, and two people from the nicu. My OB was hoping to keep Little Miss Minion and I healthy enough to make it to 32 weeks. The maternal fetal medicine specialist (high risk doctor) gave us two weeks in a best case scenario, which would have put us at 30 weeks. I don’t remember who the nicu people were or what their positions in the unit were, but I remember the feeling of panic as they explained all the things they could do if Little Miss Minion had to come early. I remember words like resuscitation, breathing tube, ventilator, developmental delay, and prognosis. I remember thinking that there were an awful lot of people coming in and out of the room during the time the nicu people were with us. 
When Mr Minion went back to our house to grab more clothes and things, since we weren’t expecting me to be admitted the day before, I remember starting to have trouble reading my book. The words weren’t making sense. I read the same paragraph over and over before finally giving up. I sat in my bed, trying to ignore the uncomfortable straps of the monitoring belt wrapped around my stomach. I watched the numbers on my blood pressure readings slowly climb, trying to will them back down. 150/90, 175/95…my prepregnancy readings were usually around 110/70 or lower. One of the nurses came in to check on me and moved the monitor screen to face away from me. With nothing else to look at, I watched the line of the fetal monitoring contraception move. Every jump indicated that Little Miss Minion was doing well, moving around. After a while, the line seemed to be flattening out. I called the nurse, they did a bunch of stuff to try and get Little Miss Minion moving, and nothing worked. They called in an ultrasound team who did a biophysical profile on her. It’s a half hour ultrasound where they count how many times the baby moves and a couple other things. She didn’t move. I watched her heart beat, the only thing that moved on the screen. 

Soon after that, I suspect an urgent  conference of my medical team commenced and a few minutes later, I was on the phone with Mr Minion, who had gotten to the house and wanted to know if I had thought of anything else I wanted. The doctor came in, so I got off the phone. I remember him telling me that my blood pressure wasn’t responding to the magnesium anymore and that Little Miss Minion needed out. Tonight. As soon as they could prep me.
I called Mr Minion and told him. As I hung up, swarms of people poured into the room to get me ready. I continued to call and text people that they were prepping me for surgery and that the baby was coming. And the rest is history. 
Today, I watched my two year old daughter play with bubbles. She ran up and down the hall of our house, played in her sandbox, and drew on an easel with markers. Two years ago, I watched a blue screen descend in front of my face as a team of doctors and nurses saved my life and saved my daughter’s life. I watched as someone held out a tiny, tiny, tiny baby, her head engulfed in a newborn hat that was almost as big as she was, her skin purple and transparent. Everything I had expected was imploding before my eyes. 
Two years ago, our NICU rollercoaster ride began. It started with a stomach churning drop as our one pound, fourteen ounce preemie was brought into the world twelve weeks early. There was another drop over a cliff as she fought off gbs, sepsis, and meningitis. Things smoothed out as we turned the corner of what would be our halfway point. We shot down another towering drop as we found out about her brain damage and hydrocephalus. The subsequent surgery and recovery were bumpy. But then, we could see the exit. Eighty four days after starting this ride, we got off and started the rest of our lives. There are still bumps, potholes, rainy days, and times when we trip and fall. But the important thing is that we get up, dust ourselves off, and KEEP GOING. 
Happy birthday to my daughter, Little Miss Minion. I’m so happy I get to see you grow up. 

And the results are in….

We got the official report back from the NICU follow up developmental clinic. I was pretty optimistic about it when all I had were the preliminary numbers. I read it as soon as it came in the mail and it was even better than I thought. 

Here’s the deal: they do bunch of skills tests with Little Miss Minion and they score her on how well she does. It’s pretty much three hours of playing with her with various toys and equipment. Luckily, she’s a pretty easy going kid, so it usually goes pretty smoothly. 

The stats:

At the time of the evaluation, she was 22 months chronological, 19 months adjusted for prematurity. Since she was born three months early, we subtract those three months from her chronological age to give her time to catch up. So for these tests, we are “expecting” her to score closer to 19 months than to 22 months. 
The scores: 

Receptive communication: this is how well she understands things that other people say. Ex: we ask her to bring us something or to point to a particular object. She scored at 18 months, which falls into the “average” range. 

Expressive communication: this is how well she communicates with others. Ex: pointing to things that she wants, asking for food, toys, etc. she scored at 18 months (average) again. 

Gross motor: how well she moves the large muscles in her body. Ex: running, jumping, etc. She scored 18 months here as well, so average again. 

Fine motor: how well she moves the small muscles in her body. Ex: coloring, picking things up with fingers. She scored at 20 months here, which is still considered average.  

Cognitive: how well she interacts with her environment. Ex: figuring out how to find hidden objects, placing puzzle pieces correctly, etc. She scored at 21 months here, which is considered high. 

All in all, she scored at the Average category. That means that she is performing at the same level as other kids born on her due date. This is huge. The last part of the visit is a meeting with one of the neonatologists from the NICU where they discuss the general results. The doctor had to double check his papers because of her nicu chart. Little Miss Minion has hydrocephalus, which usually impacts some aspect of development, and she also has brain damage from the infection. So he was shocked that she was doing so well. His notes include this surprise as he states that her progresss has been very reassuring, given her history of sepsis, hydro, meningitis, periventricular leukomalacia, and four brain surgeries. 
The upshot of all of this is that she is well on her way to catching up!

Preemie Christmas Part 11

On the 11th day of Christmas, the NICU gave to me: 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. 
The thing about the nicu is that it makes you appreciate things you wouldn’t normally think of as a new parent. Things that most parents probably take for granted. Here are my top 11 silver linings. 

11. The fact that there is a special team in the operating room just for your baby. This means they have a fighting chance. 

10. You will congratulate every pregnant person you meet on reaching term (37 weeks).

9. Being in the nicu gives you 24/7 access to medical advice. 

8. Hearing your baby cry. Babies on ventilators cannot cry. 

7. Cares. This is the time of each day when you can interact with your baby. Every three or four hours, the nurses will open the isolette and you can take your baby’s temperature, change the diaper, and see her without the thick plexiglass between you. 

6. Farts. Getting excess air out of the intestines means its easier for your preemie to breathe. 

5. Getting to see (not touch) your baby. After a quick kiss in the operating room, I had to wait several hours to see her again. I’ve heard of other moms who had to stay in the ICU for several days, unable to go to the nicu. 

4. Taking care of your baby. Changing diapers, taking temperatures, arranging the baby back in their Snugli. The nurses will have to show you how to handle all of the equipment.

3. Getting to hold your baby. Sometimes it takes hours, days, weeks, it even months until they are stable enough to be touched. 

2. Getting to leave the hospital as a new mom, even though you can’t bring your baby with you. Preeclampsia/eclampsia is one of the biggest killers of new moms.

1. Getting to take your baby home from the hospital, no matter how long it takes for you to leave. You’ve watched countless other parents take their (giant) newborns home, and now it’s finally your turn. You’re waiting for the nurses to come get you and say they made a mistake. You don’t really believe it until you are home.

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. 

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. 

Pediatrician Visit: 2 months adjusted

Quick update: Little Miss Minion had her two month pediatrician appointment today. She now weighs 10 pounds, 6 ounces, and is 21.5 inches long. That’s 5.5 times her birthweight and about 1.5 times her birth length. 

She got more shots today, which I’m very happy about. She wailed for about five minutes afterward, which I found interesting because she never really cared when they would place IVs. 

The pediatrician is very happy with her. She cleared us to try rice cereal with her over the next month or so. She’ll start out with a few teaspoons and hopefully she’ll be up to 1/2 cup per day in about a month, plus her same amount of breastmilk feedings. Then we can start her on baby food. We increased her famotidine (reflux meds) a little bit, and the cereal will help with that as well. 

On the way out, I made her next two appointments and confused the heck out of the receptionist. I made her flu shot appointment for next month. Babies must be at least six months old to get the flu shot. Then I made her 4 month (adjusted) appointment for December.  The receptionist kept trying to tell me that was wrong, because of the timing for the flu shot. She finally checked with the doctor and it was good. 

1 Month Adjusted

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.