Feb 11, 2016 Latest post:
Mar 13, 2016
Everything about Eliza is surprising, including the day she was born. I went to the hospital for yet another ultrasound at the high risk OB. When your child has been diagnosed in-utero with a potentially life threatening condition (Eliza has Edward's syndrome/trisomy 18...more on this later), you become a frequent flyer at the ultrasound office. The reception nurse nodded me in when I arrived, we drove 45 minutes to these appointments once a week and they all knew without asking that I would have to pee as soon as I got in the door. I proceeded straight from my usual restroom stop to the chair where they checked my blood pressure and to my growing horror each week, my weight.
Eliza is our first child, so not only was I experiencing the unexpected twists and turns of a high risk pregnancy, I was experiencing the unknowns of pregnancy in general. Who knew that ankles could become so large without bursting...Anyway, they took my blood pressure and it was abnormally high. I was a stressed out mother to be who had been told my child probably wouldn't survive birth...so having a high blood pressure didn't shock me at that moment. The tech agreed that we would check it again after the ultrasound.
It was December 4th, my original due date was December 25th (Our Christmas Baby) but due to the risk of third trimester miscarriage that comes along with Eliza's syndrome, we were planning to induce on December the 7th. So it's the Friday before I'm scheduled to deliver and I'm at a routine ultrasound, knowing that my actual due date is weeks away. I never imagined that before December 4th was over, my daughter would be in my arms.
The ultrasound tech completed the ultrasound and the doctor came in, enlarged brain ventricles, hole in the heart, very small chance of survival...it was the same thing every week. I started to tune it out. I know they're doing their job and that they are required to prepare mothers for the worst, but as that mother, approaching her delivery after 9 long months of being told your baby is going to die and crying and screaming and crying some more, you kind of want to just say, yes I heard you, can we stop repeating it? We checked my blood pressure again after the ultrasound, it was higher.
Pre-eclampsia, I got to add that one to my long list of new medical vocabulary. Basically my body could no longer handle the pregnancy and I was at risk if we didn't deliver that day. I then threw the most ridiculous tantrum of my life. We can't deliver this baby today, I don't have my BAG and I didn't shave my legs this morning! The doctor just told me I could die if we don't deliver my baby and I'm worried about stubble and having my own tooth brush. I'm pretty sure my husband thought I'd lost my mind. Honestly, I just felt like I had no control over my pregnancy or my daughters condition, but I had a plan for her birth, a date, a time, AND A BAG. Loosing that little bit of control was the last straw.
If you were to ever meet me in person you would understand that I am an analytical, OCD nightmare, who plans every detail in advance and research's every scenario before making a decision. This is a blessing and a curse for the parent of a trisomy 18 child. I'll take a moment to explain the syndrome now, for those of you who already know about Edward's syndrome, feel free to skip ahead. Trisomy 18 occurs when a third copy of the 18th chromosome is present in some or all of a child's cells instead of the usual two. Most people are more familiar with Down's Sydrome, also known as Trisomy 21. Same idea, three of the 21st chromosome instead of the usual two. This doesn't seem so bad, having an extra chromosome, what's the big deal?
Unfortunately, that extra chromosome has a tendency to wreak havock on the body's vital systems. Each individual is affected differently depending on how many cells are affected and in which ways but you can bet something is going to turn out wonky. Heart problems, digestive system issues, cleft lips and palate, abnormal structure of the hands and feet. The list is long and a child could have some or all of the possible defects. They told me not to google Trisomy 18 after her diagnosis but of course I did anyway. What you'll find can be terrifying and tragic, but when you really start reading the stories about these children and their families you find love, resilience, grace, and hope. Regardless of the outcome, children with Trisomy 18 are loved in equal measure with average children. And yes, some of them die before birth but some of them do live. Whether it's for hours, days, weeks, or even years, and we the parents love every minute we get, because we have been told we may not get any. A life is made up of moments not minutes.
But this post is not about Trisomy 18, it's about Eliza. So back to the hospital where I'm being a drama queen about not having my bag and Eliza is about to be born. They get me into a hospital robe with my stubble legs hanging out and for 11 hours I am in induced labor. No epidural, no pain medicine, no monitoring, just me, my breathing, and my husband playing eye of the tiger on is cell phone...he felt Eliza needed a theme song. In truth, my mom and my husbands parents sat with us for most of my labor. We watched stupid comedy movies on TV and joked. It was not the somber birth most people would have expected. At the last minute when I was about to push I said I'm sure Zeb (my father-in law) took off a long time ago, but if he hasn't now would be the time! My husband held my hand, laughed at my ridiculous behavior and I started to yell.
When Eliza finally appeared at 4 lbs 4 ounces we all thought the worst. She was so blue and she wasn't breathing. The doctors did some suction and stimulated our tiny floppy baby and her daddy pep talked her through it, breathe baby. She did. The smallest cry emerged from her lips and it was the sweetest sound I have ever heard. The name Eliza means "God's Satisfaction." We did not pick this name because of it's meaning but it could not fit her better. She was so beautiful. The doctors placed her in our arms and said I can't believe it but she's breathing. Love her, you don't have long.
We held her, the chaplain came and baptized our angel and we cried. An hour or so later, she surprised us all again as she continued pinking up. It is the most terrible feeling in the world to be exhausted from labor and hold your baby in your arms wondering each minute, will this be her last breath? Finally, the doctors decided she should go to the NICU for fluids but they were still not optimistic. We agreed and encouraged them to help our baby. We were presented with a DNR, typical in Trisomy 18 births. We modified it to a limited DNR in which no extreme measures would be taken, but she could still be brought back by traditional methods of oxygen and bagging if needed. She coded once that first night. I was a wreck. I rarely left Eliza's side and slowly I started bonding with some of the nurses assigned to care for her. They helped me save her life. They taught me how to care for her and helped me get the doctors on board.
After lots of pushing, we started getting care for our remarkable daughter such as a bath, blood tests, and other aspects of newborn care that would have been done immediately for most babies. She became more surprising every day as she continued to improve. She was in the NICU 10 days and the only assistance she had was a feeding tube and lights to help maintain her temperature. They moved us into a rooming in room where nurses could monitor her from the main part of the NICU, but only checked on us periodically. My husband and I took on her round the clock care. We brought her home at just under 5 lbs on hospice. Still on a feeding tube, supplemental oxygen to help keep her comfortable, and a monitor to let us know if she stops breathing. The outlook was still very bleak.
Eliza however, did not care that she was on hospice, she loved her pink EVERYTHING and the nurse that came to check on her each week and like the nurses in the hospital, once you begin to work with Eliza you can't help but fall in love with her spirit. She thrived at home. Each week the hospice nurse was floored by her progress. At two months and over 7 lbs she finally went to her first pediatrician appointment this week. She discharges from hospice next week and we start seeing a team of specialists that will help me and my husband continue to provide Eliza what she needs to succeed.
Her fight isn't over. She will always have Trisomy 18 and how that will affect her may present itself in many ways over time. Right now, she has a feeding tube and a hole in her heart. Both need to be managed as we move forward, but as the Shakespeare quote goes, "Though she be but little, she is Fierce." I don't know what the future holds for my fierce little daughter, but if I had to bet on anyone, I'd bet on her. However long she has left with us, and we hope it's a long time, we will love her as fiercely as she loves life.