Monday, April 20, 2015

April 20 - Dear Nicholas Sparks (Guest Blogger Sharon Munson)

Dear Mr. Sparks,

Looking back on our experiences now, January 1998 seems like it was eons ago, simply because of where Michaela was and how far we’ve come in such a short time. I had a normal, healthy pregnancy. Nothing was ever detected during my first ultrasound at 13 weeks or during my second ultrasound the morning of Michaela’s birth which was mainly to check for the position of the fetus. Only twelve hours after I felt the first pain, Michaela was born. She was in good voice when the cord was cut. She was weighed and measured, 7lbs, 8 ozs, and 21 1/8 inches long. Her APGAR scores were 3 and 9. Then they gave her to me. My husband got two pictures of us together before I casually commented on her dusky color. Before I knew what happened, they took her away to the NICU to run several tests to see if she could keep her color. When all their tests failed, they gave her two chest x-rays which showed a diaphragmatic hernia. The attending physician came in to my room about 3 hours after she was born to tell us of the problem. My husband and I were totally numb, and I can’t remember too much of what happened after that, other than my husband’s stepbrother asking all the questions. (He is also our assistant pastor, and he needed to know what to tell our minister). They suggested sending her to the University of Virginia Medical Center (UVA) since they had 2 ECMO machine, but they asked what we wanted them to do. We had to plead ignorance and put it in God’s hands. So they called a ground team from UVA up to get her.

In the meantime, while I was being helped out of bed by the nurses, the attendants in the NICU were taking Polaroid pictures of Michaela for us. I was eventually moved to a mother-baby suite and at 8:30 p.m. the crew from UVA came into my room with Michaela in a mobile incubator. My husband had to physically take my hand and put it on the baby because I was apparently afraid to. I guess I was still in shock. They left with her, and then everyone else left. The silence was deafening. I saw her again four days later. The NICU staff at UVA was so sensitive to our feelings. They knew my husband was already there once, the day her hernia was repaired (which was the day my parents came down from Pennsylvania to take me home), but they knew neither one of us had ever seen a child on ECMO, much less our own. So they had a cloth placed over the cannulas so that we would not be overwhelmed by the sight. They knew, in time, we would be curious to see how the ECMO works.

Michaela was on ECMO for a total of 6 days. They were the longest 6 days of our lives, they seemed to drag on endlessly. But once she was taken off the ECMO, Michaela reached one milestone after another. She was off the ventilator by the following weekend, just in time for her grandmothers to come down and visit with her. That same weekend, a g-tube was installed, but was only used once. She ended up nursing directly from me right away! Words cannot express how thrilled I was! The next two weeks were spent trying to wean her off her fentanyl drip. It was an extremely slow process. But eventually the drip was turned off, and arrangements were made at UVA for us to stay overnight rooming in with Michaela the night before her release.

On January 23rd, they let her go home. I was so thankful that she had received such good care at UVA. Nurses even held workshops for us, educating us on life-saving techniques, proper use of car seats, etc. They took such good call of us, all through and by the grace of God, of course. Once home, Michaela had one good week of perfect health, smiling at me whenever I would change her. Then she got a cold. Once her cold went away, she enjoyed good health all winter long. Of course, we only took her out for checkups. In fact, it was mid- or late-March when we took her to church for the first time. She developed colic the last week of March, we dealt with that during all of April. Then once April came in, she started teething. She’s only had once other cold since.

At her last post-op checkup at UVA on May 18, her neonatologist reported that some of her developmental skills are a month ahead of schedule, and her pediatric surgeon said that her lungs are up to approximately 75-80% capacity (up from 30% at birth), therefore her lungs are not in proportion to the rest of her body. But she’s growing lung every day. He also said that her left lung is still hyperexpanding.

Michaela is living proof that God is able. She has gone from a near-death situation to having hardly any lasting effects from the CDH she was born with, other than her scars and the lack of a pulse on the right side of her neck. When she was taken off ECMO, her pediatric surgeon tried unsuccessfully to reattach the severed ends of her carotid artery. So the ends had to be ligated and attached to the inner wall of her neck just behind her left earlobe.

Written by Michaela's mom, Sharon Munson (West Virginia)

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