Monday July 14th: I was 41 weeks 3 days and admitted to the hospital at 9:43 am for induction. Our younger children were at the home of some dear friends, while our eldest son my husband and I prepared to welcome the newest addition to our family.
Nathen had been present at the birth of our daughter Jessica 2 years prior. He was 10 then and it was a great experience. The nurses were wonderful with him and discreet with my needs during labor that we were all comfortable. we were hoping to have a repeat of that experience. after settling in, the three of us walked the halls in hopes of kick starting my labor.
After hours of walking, medication (Cervidil and pitocin) resting without medication my labor was not progressing as it should have. It was strange especially since I'd been down this road 3 times prior. In truth the induction was difficult as Alyssa didn't respond well to the medications used to initiate labor. Her heartbeat continuously would drop dangerously low. I was prepped for a C-section, which included getting an epidural and the OR was prepped to receive me. Our goal was to have the safest delivery and our hope was that would be a vaginal delivery.
I tried different positioning to see which way the baby would best tolerate labor. She didn't seem to like any way but each time going to the OR was mentioned Alyssa's heartbeat would steady. I was on oxygen and remained on my right side for 6 hours + to assist Alyssa in tolerating labor. My epidural pooled to my right side so I could feel labor on half of my body and a minimized labor on the right side. I was given fluids through IV and infusion through the uterus. Our doctor was committed to our desire to deliver vaginally by continuing to use various methods to maintain labor until it came to the point when Alyssa's heart rate didn't recover quickly. The decision to deliver her was made; the OR was about to be called when her heart rate steadied and instead I was instructed to push. Three long hard pushes later; Alyssa arrived into the world with a soft but audible cry.
Alyssa's daddy chose her name (we had a boy’s name too). We hadn't agreed on a girls middle name. However the phrase “by God's grace" often ran through my mind during my pregnancy when thinking about how the Lord had been at work in my life. By my 5th month of pregnancy the perfect girl's name came to me Alyssa Grace. It wasn't until days before her birth that I shared this name with Ed. He didn't give me the "okay" until the nurse announced the arrival of our daughter and asked "what is her name?" In unison we responded "Alyssa Grace"...
By this point it was about 12:40 am on Tuesday July 15th. When Dr. A held Alyssa up for us to see, she looked small but no smaller than our other babies. I like Dr. A because he takes his time in examining a newborn after birth. He also delivered our daughter Jessica. As Dr. A examined Alyssa, I heard him say under his breath asymmetrical appearance and inter uterine growth restricted (IUGR) before passing her off to the nurses. Alyssa was I my arms about 5 -10 minutes later. By that point the placenta was expelled and Dr. A in a surprised tone said" hey, look at this tiny placenta!" The placenta could be held in the palm of 1 hand it was the size of a tennis ball. We didn't take much note of it because our girl was in my arms.
As I held her I noticed the nurse kept her hand at the back of Alyssa's head, even when I attempted to reposition her. I held her for about 5 minutes or so when the nurses took her back to the isolate to warm her. It was then I was asked if I knew of Ehler's Danlos. Unfortunately because of a Hannah (a young person from church http://www.caringbridge.org/visit/hannah317) I did know what it was. The NICU doctor thought Alyssa's joints were lax and that it could possible be a sign of Ehler's Danlos. When she came to my bedside and saw that I too was extremely hyper mobile, she said well maybe she just inherited your joints. By that point we were told because of Alyssa's small size, (they didn't get a weight yet but she looked small) she was heading to the NICU and off she went.
It was about two hours later that we caught our next view of our little girl. It was not what we were expecting at all. She was intubated with a breathing tube and hooked up to all sorts of wires. We were told that she needed a little extra oxygen and then due to a mass in her lungs and the tube was kept in as a precaution. At some point it was mentioned that genetic samples of the placenta was going to be taken due to her restricted growth. Okay no problem...and I went off to bed anxious but feeling as though she was well taken care of.
I slept for about an hour, showered and back at my daughter's bedside. It was a mid Tuesday morning when Ed and the rest of our crew met me there. We were then told that Alyssa was being prepared to be transferred to the Children's Hospital of Philadelphia (CHOP) due to the lung mass. One doctor mentioned to me that she saw somethings that led her to believe that Alyssa could have a genetic problem. When I pressed for more information she said something like downs or trisomy. She was very easy going about it saying something like...I don't see any issues, I think she's fine we just want to know what the mass is; cause if she had something like trisomy that would be awful. Not a good outcome.
I should mention that I was a Case Manager for a number of years for the Department of MH/MR (mental health and mental retardation). The doctor was aware of this when speaking to me and I indicated to her that I was aware of the nature of downs (Down Syndrome) and familiar with Trisomy. Although I really wasn't sure about Trisomy I heard the name before but not any true details...that would come...
I didn't mention the conversation with Ed, just tucked it away in my mind ans focused on viewing the radiology scans she was about to show us. It was just after 11:30 am and within an hour the transport team from CHOP had arrived. By 1pm our daughter via ambulance was in transport to CHOP.
I had obtained a discharge approval from my doctor's and was out the door behind her not too long after.
We arrived at CHOP in the early evening with all the kids in tow. Alyssa we were told was stable but still intubated. We stayed as late as we could with the kids and then left for home. It was hard leaving her and not clearly knowing what was going on...
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