Wes and I always knew we would adopt but we wanted to try to conceive as well. We had no idea how much emotional & physical pain comes from infertility. After a specified amount of time & lots of prayer we decided to stop the emotional chaos of infertility treatment and focus on adoption. If you didn't believe that God is sovereign before reading this, I hope our experience will help you to understand.
So on January 27th, 2014 we submitted our application for domestic adoption to Lifeline Children's Services. We did not have our first meeting and receive our home study paperwork until February 23rd. We were told at that meeting that most home studies take about 4-6 months and placements can take anywhere from 1-5 years. For those that don't know adoption lingo a "home study" is a 5 interview process with LOTS of government and agency paperwork mixed in between all of those interviews. It is a very stressful but also introspective time in which we learned a lot about ourselves and each other. A "placement" is when a child actually enters your home/life. Our home study went a lot quicker than most. In only 2 months we had completed all of our paperwork and interviews. We were only waiting on the government to approve our background checks when we received a call from a friend at church asking if we were interested in adopting identical twins.
On May 6th, I had another surgery to help lessen the pain of endometriosis. On May 9th, we received a call from our social worker that the twins in question had been born 13 weeks early, one of the girls had been transported to Birmingham due to a birth defect and their birth parents had chosen us as the adoptive parents. Nothing dealing with adoption is 100% and Absolutely nothing is in stone until on paper & timing elapsed. We spent the next week waiting on information and receiving very little. I will not go into the nitty gritty of this week but I will say it was one of the hardest of our lives. On May 15th we finally got the call that the birth parents had signed relinquishments for our daughter, Elise, but they had chosen to parent her twin sister. God has a plan for everything on this earth and though it was hard to see at the time we are able to see it now.
So, May15th, I quit my job and hopped into the car with my amazing husband, packed and ready to spend the next several months in Birmingham with our brand new daughter! Craziness. We pulled up to Children's and navigated our way to the NICU, where we would soon call home. The nurses were a little surprised to see us because they had only minutes before been given notice that there were adoptive parents that had been waiting in the wings. Children's of Alabama's NICU is a surgical NICU so all the children there have something out of the norm going on. Because of that, all patients have individual rooms, thank the Lord. When we arrived we were brought into Elise's room. This was probably the most amazing moment of our lives. There, in her isolette, lay our itty bitty daughter who had been through more emotional trauma in one week then we had in our entire lives. And she was BEAUTIFUL!
The next day clearances had finally gone through and we were able to sit down with doctors and nurses and try to understand Elise's condition.
- First off, Elise was born 13 weeks early which means her lungs were not fully developed and very sick. She had PIE in her left lung and her right lung would often stick to itself due to all the fluid. She was on very high ventilator settings and ended up on the oscillator for a week. So, just simply being premature led to a very scary lung situation.
- Secondly and most important: Elise was born with a very, very rare condition called OEIS or Cloacal Exstrophy. OEIS only occurs in 1 out of 400,000 live births and only 1 in 4 of those cases are females. Elise is a very rare bird! Another little fact that makes Elise rare is that she and her twin sister were mono mono twins which means they shared an amniotic sac. Thankfully we knew that Elise and her sister were mono mono twins because at first the doctors could not tell us physically what her gender was. Someone unfortunately decided wrong and Elise was noted as "Baby Boy" in the computer for a long time. There is no way for mono mono twins to be anything but identical so we knew she was a girl. You better believe we decked her room out in pink to avoid confusion!
So, What is Cloacal Exstrophy?
Cloacal Exstrophy is the most severe of exstrophy cases in which the abdomen and pubis do not close causing many internal organs to be on the outside at birth.
Classic signs of OEIS/Cloacal extrophy include:
- Omphalocele (abdomen does not close causing intestines & other abdominal organs like the liver to protrude, only covered with a membrane and with time, skin.)
- Hemi-bladder with intestines protruding in the middle. (These are on the outside, bladder and intestines are inside out and flat.)
- Large Pelvic symphasis (Pelvis is not closed and very far apart.)
- Imperforate Anus (Anus is not present)
- Tethered Cord (Spinal Cord is tethered to sacrum.)
- Many OEIS children also have spina bifida. Luckily, Elise does not.
- Here is a summary written by a doctor that we hope to visit in the near future at Johns Hopkins: http://www.hopkinschildrens.org/cloacal-exstrophy.aspx
To fix all of this takes many many surgeries. Because Elise was born so early we are going very slow with her treatment because growth is imperative. Growth can also be very difficult for these children. So far so good with Elise!
Through a long hard road in the NICU, including surgery to bring her bladder sides together and create a colostomy, Elise beat the odds and came home after only 3 months, only a week after her due date. No one expected her to leave that soon! God is so good.
We have been home for 2 months today and Elise has doubled her weight since we left Children's! She is eating well and proving, as usual, to be one tough chick! She even had emergency laser eye surgery due to retinopathy only a week after we got home. Didn't phase her a bit.
At the moment we are at a stand still on treatment. She is still on a very small amount of oxygen because her lungs were so sick at birth and her omphalocele puts pressure on her lungs causing her reserves to not be as large. We see many, many doctors with lots of tests done each month. Her next surgery will either be to fix her tethered cord or the big surgery to close her bladder, omphalocele and pelvis. We will know more on this after a few tests and appointments in December.
Today, we extremely thankful for God's sovereignty, infertility, adoption and modern medicine. We stay connected with Elise's twin and birth parents through email and know God is in complete control of that relationship. We all hope to keep the girls connected and our relationship strong. God is doing wonderful things in their family as well.
Elise's adoption finalization is set for the end of November! Hopefully this date sticks, bearing some government paperwork. We have been impatiently awaiting this day for a long time! We can't wait!
I will keep those who are interested in Elise's world informed through this blog. We are very grateful for all those who have been holding Elise and us up in prayer since our story became known. We appreciate any continued prayer and support as we still navigate this rarely tread path. Although it seems very scary and unknown we have YET to feel afraid. Honestly! We can't say that we haven't felt stressed, but afraid, nope! God has given us an incredible peace about Elise's entire situation and we know He has Big plans for her! We're just so excited and blessed that we were chosen to be her parents!
