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    Wife to Bryce and mother of three children, LJ, Noah, and Sofia. Living in a very "special" world of special needs. LJ has cerebral palsy, myoclonic seizures, developmental delays, and cortical visual impairment. This is our yellow brick road.
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LJ’s Birth Story: Part 6 The First Week

Catch up here.

We checked into The Children’s Hospital, my anxiety on the rise. We headed to the fourth floor, where we had to sign in again, and sign some waivers on whether or not they could update family members when they called. We decided to have them withhold that information.

We scrubbed our arms and hands, and walked down a hall. The first entrance was filled with cribs and lots of colorful things. The nurse led us to the entrance at the end of the hall, which opened up to a line of babies in plastic compartments. Most were intubated, some were completely enclosed, which I assumed were for the premies. It was one of the saddest things I’ve ever seen.
In the second “crib”  was LJ, sleeping almost peacefully. He was still intubated and was hooked up to quite a few monitors. Any time the monitors went off, my heart would start racing and Louie would practically drag a nurse over there.
Social workers dropped by, one to let us know that they’d put our names in to see if we could stay at the Ronald McDonald house, since we lived 45 minutes away, and I had just given birth. Many people came up to me, telling me to rest, or offering me drinks.
We sat down with a lactation consultant, where she supplied us with all the works for pumping milk. The actual pump was being rented out to us, but they gave us the rest of the equipment at no charge.
It was hard to leave. We weren’t allowed to sleep next to his crib and there weren’t any beds in the Ronald McDonald house. I cried myself to sleep almost every night.
The first week was completely overwhelming. We weren’t prepared for the negative views of some of the doctors and we didn’t know what questions to ask. If it hadn’t been for a few excellent nurses, that didn’t mind going out of their way, we would have been lost.
Every morning, Louie and I would pack up our things; a shirt (in case I needed it), cameras, water bottles, and whatever item we had purchased for LJ the evening before. We’d pick up breakfast on the way and spend almost eight hours a day by LJs crib.
Within the first day, LJ pulled his IV out, so they had to place it in his head. He didn’t even cry, which concerned the doctors. No matter how much they poked or prodded, he would barley make a sound. The doctors spoke bleakly about LJ’s future; they weren’t even sure he’d be able to breathe without the ventilator.
But by the end of the week, he proved them wrong. Not only was he able to breathe without the ventilator, he was able to start taking breast milk, which was given to him through a tube in his nose, to make sure his stomach was ready for it. He still didn’t fuss very much but they seemed less concerned about that now.
We finally got to hold him, after he was taken off the ventilator. Our nerves forced us to wait until the second day he was off of it before we held him; we wanted to make sure nothing would happen. And finally, Louie got to hold his little boy for the first time.


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