Finally Home!

After we received Noah's diagnosis when he was 5 days old, we spent another 5 days in the NICU. The doctors wanted to see him gain more weight, regulate his body temperature and get his bilirubin levels under control (jaundice). Every day was still a guessing game, as the doctors and nurses could never really give us a straight answer as to when we might be going home. So we just plugged along, back and forth between the hospital and home, trying to stay afloat despite the physical and emotional exhaustion.

Finally one afternoon Dino, our favorite nurse, told us that Noah had been consistenty gaining weight, was feeding well (from a bottle, he still wasn't able to nurse) and should be ready to go home the next day. He had been out of his "warming hut" for several days and had proved able to keep his temperature stable. He'd been out of the jaundice lights for over 48 hours and his bilirubin levels were normal. The only thing left was for him to pass the car seat test. Babies who are premature are at higher risk for oxygen desaturation, apnea and bradycardia (slow heart rate), especially in the semi-reclined position of a car seat. In order to pass the test, the baby has to sit in the car seat for 90 minutes while hooked up to all of the monitors (heart rate, breathing and oxygen level) and have no episodes of desaturation, apnea or irregular heart rate. The only problem was that our car seat was designed for babies over 6 pounds and the hospital couldn't send us home in that. While we were discussing our options, Dino said "Let me check. I may have something that will work." Sure enough, she found a car bed for us. I had never seen or heard of one of those before. It's basically a flat car seat that has a harness similar to a typical car seat and the baby lies flat instead of reclined. Noah passed the car seat test with flying colors and after signing mountains of discharge papers, we were headed home!

At home we were met with a great welcoming committee, gorgeous flowers from my work, balloons, an awesome sign made by Jessi and Landon and a clean house, courtesy of my mom and Mark!

Leaving the hospital with our 10 day old baby, still only 4.5 pounds, left me with mixed feelings. We were so happy to get him home and not be living at the hospital anymore. However, it felt a little scary to not have the support of the hospital staff. If you held Noah (or any other preemie) when he was first born, you know how tiny and fragile he was. He had been hooked up to a number of monitors and was being continually checked on in the hospital. Not having the assurance that someone was watching his vitals 24/7 was nerve wracking. The first couple days he was home I barely slept. All night I kept reaching over to the co-sleeper next to our bed and putting my hand on his chest to make sure he was still breathing.

Noah's discharge papers had a section called "Active Diagnoses" which outlined all of the things that Noah was currently diagnosed with. I guess when you get induced at 35 weeks you can't really expect a completely normal delivery and healthy baby, but this was far more than we ever envisioned.

Prematurity
Intrauterine Growth Restriction
Trisomy 21
Atrial Septal Defect
Ventricular Septal Defect
Nutritional Support
Hyperbilirubinemia
Thrombocytopenia
Failed hearing screening

It all felt very surreal. Everything normal seemed simultaneously comforting and like a lie. How could Cameron and I enjoy an ice cream date on a beautiful sunny Seattle day when we had just found out our baby has Down syndrome? Why did I get so much comfort from wandering up and down the grocery store aisles like nothing had changed? Shouldn't I be home with my preemie every second of every day? I oscillated between needing some freedom, some sense of normalcy, and then feeling guilty about it. Those first couple weeks were pretty rough. I'm so thankful for the support of our friends and family during that time. We were overwhelmed by everyone's thoughtfulness - meals, prayer, emails, calls, date nights, encouragement.

Aside from all the emotional turmoil I was feeling, day to day life once we got home settled into a nice routine. Noah was (and still is) a very easygoing, happy baby. He was a great sleeper and was on a manageable 3 hour schedule thanks to the nurses in the NICU. In fact, he was such a good sleeper that we actually had to wake him up for most feedings. As a new parent, this seems extremely counterintuitive. "Never wake a sleeping baby" was not an adage to abide by in our household. Noah was still underweight and we had to make sure to get as many calories in him as we could. Unfortunately, that meant he had to eat no less frequently than every 3 hours, even at night. Nighttime was not fun. I would try to prep everything the night before - pump set up, bottle in the fridge, pillow and burp cloth at the ready, iPad primed with a show. My alarm would go off at midnight, 3 and 6 and I would roll out of bed and start the routine. Because Noah wasn't nursing at that time, I would have to pump and also give him a bottle at each feeding. I actually became skilled enough to pump while simultaneously feeding him a bottle. I know, pretty impressive :) Anything to get more sleep!

Slowly but surely the little guy began to gain more weight and we went from daily weigh ins at the doctor, to weekly, to monthly, and now at 13 months he's a healthy 20 pounds. Go Noah! It's been amazing to see his development progress and I'm excited to share all that he's been up to in the coming posts.

Jess

Tagged as: Noah
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Comments (1)

Anne

September 29th, 2014

1:29 am

Yay!
 

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