Two years ago today began a 117 day journey that will forever be a part of our lives
1lb 13oz, and 13.3" long, covered in plastic to keep her warm the very first day
Kept in an isolette to keep her body temperature constant, and sickness out
Bright red skin, an eye patch, and phototherapy for Jaundice
CPAP in her nose; feeding tube down her throat; pulse oximeter on her hand or foot; temperature sensor; IVs in her hand/arms/feet/legs, electrodes to measure heart-rate, respiration, and blood pressure
IVs were changed every 2-3 days, she was poked and prodded sometimes for an hour as they tried to find a vein in her tiny arms and legs; they were all used up, and they told me they might have to use her head. A PICC line was inserted instead, an infection resulted, but the doctor caught it immediately
Her little body working so hard to keep warm, take poops, and survive out of the womb, that weight gain (and loss) was measured in grams/ounces, and it took a full month to gain 3 ounces!
Held for the first time at 4 days old, eyes fused shut for 5 days
Her eyes were black; her skin was so fragile and translucent you could see the 4 sections of her heart and everytime it beat; her ears had no cartilage and needed to be folded back to form a natural shape
She had hair all over her body, including her face; over the first month, we watched her eyebrows form as the hair became less and less
Glucose measured for weeks to track her spikes; feedings adjusted to not disrupt her little body and prevent serious illness.
I learned to advocate for her, learned the terms of the NICU, all the tubes and controls on the monitor, all of the nurses' names; I learned to pick her up by myself, we learned to take her temperature and change her diaper.
CPAP was taken out around 2 weeks old and she breathed on her own for a full 10 hours! When she began de-satting, she was put back on low-flow O2. She had trouble breathing, remembering to breathe, and had no energy to do so; a nurse spent an hour with her just concentrating on getting her to breathe. She was put back on CPAP.
I learned the monitor's beeps. The slow rhythmic beeping that her O2 was low but okay, the faster beep meaning that an electrode was probably loose, and the important beep that jumped you out of your chair to make sure she brought her pulse back up again. The hoping that you'll eventually get that noise out of your head when you sleep at night, and you'll be able to live without that noise assuring you that your baby is okay. Hearing the most important monitor sound of all down the hall, and having your own heart drop seeing all the nurses sprint to the room. Seeing a family member hear the intercom at a grocery store go off and instantly looking around reminding themselves they're not in the NICU.
She eventually made it from 2lbs to 3, and it became more steady from there; we started seeing progress instead of worrying every day; she was old enough to put the feeding tube down her nose instead of in her mouth
We went from needing permission once a week to hold her, to being able to take her out twice a day, to only needing to mention to the nurses that I was going to take her out.
Her eye exam came and I was told that I might want to leave the room. The eye doctor had clips formed for the little preemies' eyes to hold them open. Ady screamed, but only for a minute. It was the biggest scream I had ever heard come out of her little mouth.
She was big enough to wear her first onesie; she was stable enough to graduate from the NICU to the CCN; she could maintain her body temperature and graduated from her isolette to a bassinet, to an open crib; I could hold her whenever I wanted; we started bottle feeding; she got her first bath; her grandparents held her for the first time; she stopped needing O2; we took her off of her monitor for the first time; I learned to live without the monitor, and started to trust myself; she got a barium swallow x-ray to detect reflux issues; we tried rice cereal and different bottles/positions; her due date came and went; she got a brain MRI; she passed her carseat test; we worked with the doctor on adjusting her feedings, and the doctor trusted me; it took 5 weeks for her to learn how to feed, but Ady finally ate what she needed, and we went home on October 10, 2012.
June 16 may have began the 117 day journey in the NICU; but October 10 began our journey at home, and raising a little girl.
She was 9lbs 2oz the day she was discharged from the hospital. A few days later for her first doctor's appointment, she was 9lbs. I panicked a little, thinking we were going to have to go back to the NICU. The doctor scheduled another appointment for the next week, and she weighed 9lbs 4oz, and he wasn't worried. She started smiling, holding her head up, holding her own bottle; She started noticing things around her, like her toys, the cat and dog,
and the people. She would follow us with her head/eyes as we walked around, heard us
before we entered the room.
She still hated eating, and we tried several bottles and I finally found one that she would use without problems. She started enjoying her bottles, and I was so relieved I almost cried. We checked off her milestones, one by one; some of them were a little late, but some of them were really early. I started relaxing when she learned to roll over, and to sit up. She was going to be fine!
She's a little climber; she started to climb up people, chairs, couches, anything she could pull up on before she could crawl!
It took a little longer for her to learn how to walk; she was 14 months adjusted, but she did it! She started learning words, peoples' names, and then she started learning and making sense! She knew Chloe was a dog, but she also knew Chloe was her name. She knows which door to go to when she wants to give Chloe a snack, when she wants to go get the mail, to go get Nana, to go to the bathroom, or to go to sleep.
We really enjoy her temper tantrums as well. I used to not be able to deal with her whining when she was a baby, or her temper tantrums when she was 1. Now though, she's starting to understand me; I know that she knows I want her to stop crying when I say "look at me", so if she continues to have a fit, well than that's her issue! We have learned that "all done" or "all gone" helps prevent her from having a tantrum if something is taken away, and that "byebye" helps when she needs to stop something, like playing on the slide or in the pool.
She knows that "row row" (row your boat) is the song we sing when we brush her teeth; she knows poo and pee, but she's not ready for the potty yet; she knows please, thank you, excuse me, and bless me; she has a 9-11pm bedtime because she doesn't want to slow down, and she wants everybody possible around her when she's going to sleep.
We have learned her personality, and we make adjustments to try to help her; the little 1lb 13oz baby is 2 years old, and she knows what she wants when she wants it! It's been quite the journey so far, and we have a ways to go with her prematurity and possible learning disabilities, but I've learned to let go and try not to worry; we have her now in this stage, and it's fun, and time for us to enjoy her tantrums because we have come so far from those 117 days! Happy 2nd birthday, Adalyn!!
