Progress Report

 

We got home from the NICU at the end of October 2016. While we were in the NICU (98 days of it), we really just focused on getting through the days and swept the stressful emotions we experienced under the proverbial rug. Now that we have been home for a while, all the nasty emotions (grief, anxiety, stress, frustration, anger) have reared their ugly faces since we are no longer on the front lines of our daughter fighting for her life. Instead, whenever we have a frustrating day – perhaps she won’t eat or she doesn’t get her naps and fusses instead thus burning calories – that pent up stress comes out and makes the situation twenty times worse. Because she was born at such a low weight (1 pound 15 oz), our doctor is following her weight gain closely. While she has been gaining steadily at about .75oz/day, any day that she doesn’t gain the appropriate amount of weight, I panic. I immediately worry that she will have to go back to the GI clinic and have a feeding tube put back in for failure to thrive. I swear that feeding tube has got to be the most haunting thing for me – especially the days that I had to place it. I felt like she was going to hate me forever for jamming that tube down her nose. I just try not to think about those moments. They make me tear up. Instead, I focus on all the miraculous things she HAS accomplished since we’ve been home.

Oral Aversion: we were discharged with a strong case of oral aversion thanks to her silent aspiration and all the procedures she had done on her face thanks to oxygen support and feeding support while in the NICU. Through our practices at home, we have managed to get her to no longer fear her bottles. She actually gets excited about them – and upset when we take them away for burping. She willingly brings her hands up to her mouth now, and she also has begun to bring her toys (and her teething chewers) up to her mouth.

Weight: she was born at 1 pound 15 ounces. She now weight 11 pounds and 6 ounces. Her growth is amazing. I give myself some credit here. I have been working my butt off to provide her with breast milk that we fortify heavily with a Non-GMO supplementation formula. I haven’t had more than 6 hours of sleep in what feels like months thanks to my pumping schedule. Unfortunately, mother nature doesn’t care that I am trying to feed my child, and my fertility cycle has permanently reduced my milk supply despite my attempts to keep it up. I will keep pumping until she is off milk and onto solids or my milk supply goes away totally. I even went as far as getting a hospital grade pump to keep at it.

Development: Despite brain bleeds at her birth and her extreme prematurity, she has managed to stay on track for her gestational age, and for some of her actual age benchmarks, too! The only thing that she seems to struggle with is her oral motor skills. She uses her tongue to latch onto her bottles instead of her cheeks and lips. She is working on getting off preemie nipples and onto level one nipples, but with her silent aspiration, we’re hesitant to push those too quickly. She struggles to control the faster flow of liquids. She loves contrast and has begun to show interest in colors. She likes to bounce and play in her jumparoo and swat at things in her baby gym. She’s started grabbing rattles and shaking them. Its remarkable how blessed we are that she is showing normal development despite her prematurity.

Retinopathy of Prematurity: resolved; she has normal development of her retinas despite being on oxygen for so long.

Patent Ductus Arteriosus (PDA): closed on its own (after Ibuprofen treatment in NICU).

Lungs: She still goes to the pulmonologist, but she mainly goes for her Synagis shots. Her lungs have sounded good at every doctor’s appointment.

Overall, she is (as my OBGYN says) our miracle baby.

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