After 1.5 years of trying to get pregnant, getting a positive test result was the happiest day of our lives! Soon after, the nausea started and it didn't let up. I was so miserable and eventually on two different nausea medications. I had wanted the most natural pregnancy and there I was, surviving with pharmaceuticals.
At 26 weeks I began having preterm labor. I thought it was Braxton Hicks and kept going on. I finally called my OB's office and they told me to drink a lot of water, lay on my left side and they should stop. Well they didn't. When I went in to be checked, I had started to dilate and realized they were real contractions I had been having. A test called a fetal fibronectin test was given and this could determine if I would deliver within the next 2 weeks. A positive means there's a high likelihood, but not 100%. A negative meant negative. I received a positive test result. I was given steroid injections two days in a row to help Eleanor's lungs develop and put on bed rest. I was started on medications to help stop the contractions. We did not want Eleanor to come that early.
Every week I remained pregnant was a relief. I made many trips to the hospital for preterm labor, but it was always able to be stopped. We had several non stress tests and biophysical profiles - meaning we saw Eleanor a lot!!
At 32 weeks one of the OBs was concerned about Eleanor's size because of the medications I was on and the fact that my belly wasn't growing and ordered an ultrasound to check her growth. During this ultrasound, cysts were visible on both her kidneys. We followed up with another ultrasound at 35 weeks and the cysts were still there. We were told she had bilateral autosomal recessive polycystic kidney disease. After researching this, I truly believed I was going to lose my daughter. It appeared she would need both kidneys removed, daily dialysis, bilateral kidney transplant, or death.
We were referred to maternal fetal medicine specialist and were able to see him at 36 weeks. The ultrasound there was more in depth and the tech didn't talk much to us. She did a lot of measuring and I could see the cysts every time she looked at Eleanor's kidneys. My heart had been slowly breaking for weeks and seeing her kidneys again had me terrified.
She left and the doctor came to talk to us. He sat down and began the ultrasound again to show me as he started talking. Surprisingly he said her kidneys were perfect. The renal tubules were just very clear and looked like cysts. But her heart had holes. He showed me and all I kept thinking was "Her heart can be fixed!!!!" I was so happy. I am probably the only mom to smile when told her baby has holes in their heart.
He immediately called a pediatric cardiologist and sent us for an echo that same day. After the echo, we went back to MFM to talk. He confirmed that Eleanor had a complete atrioventricular canal defect. He said this type of defect is highly associated with Down syndrome. He then looked through all Eleanor's ultrasound measurements and said her long bones measures short - also associated with Down syndrome. Having one marker wouldn't be alarming, but having these two meant she more than likely would have Down syndrome.
He suggested against an amniocentesis to confirm because I could deliver at any time. By then I was already 3cm for several weeks. He said we needed to change hospitals to deliver at so Eleanor could be airlifted to the children's hospital if she needed it. He showed us around the labor and delivery unit and the NICU.
We told our family about her heart, but we didn't mention Down syndrome. I told a few friends about the possibility of Ds and they all said the same thing - that Eleanor would be perfect. (I am so lucky to have the greatest friends in the world!!!)
Fast forward 2 weeks to when I was 38 weeks pregnant. I went into labor and progressed very quickly (start of labor to delivery was about 4.5 hours). When I woke up in the morning, I had a few cramps that just felt different. I woke my husband up and told him to take the dogs out. When he said he would in a few minutes, I said, "No, it needs to be now. I think I'm in labor." I called my doula, J, and she was actually at another birth! She gave me her backup doula's information (T) and I called her. T made childcare arrangements for her son and said she'd come over right after she dropped him off. Within 30 minutes, I had called T back and said I think we need to meet at the hospital. My contractions had gone from every 5 minutes to every 2 minutes in the 30 minutes since we had talked. I arrived at the hospital at 5cm. We informed them I wanted a natural birth, but we knew we needed the NICU team present. I was monitored for 30 minutes when we first got to the unit, but then was able to walk around and labor how I felt comfortable. An IV was never started and no one asked if I wanted pain medication or anything (which I am SO glad). Soon I was back in bed on hands and knees because walking was too hard. My contractions were consistent with no break. I labored in triage and they notified the NICU team that we were there. I started feeling like I needed to go to the bathroom and T pushed for me to get into a room because she felt I was ready to start pushing. By that point we had only been at the hospital for 2 hours. We barely made it out of triage before Eleanor came.
Fortunately I was able to have as close to the birth experience I had hoped for. I had a completely natural birth thanks to the support of Ed and two amazing doulas - one with months of a talking and building a relationship with and one that was incredibly supportive the day of Eleanor's birth. The room was so full of doctors and nurses to ensure Eleanor was safe. After she was born, I saw her for a very brief second and she was whisked away to be assessed. The nurse brought her back to me less than 10 minutes later. They said she looked great and could stay with me for a little bit before she needed to go to the NICU. In that hour, we did skin to skin and she started to breastfeed. The OB that delivered her then told us they suspected she had Down syndrome. She suggested drawing blood to run a karyotype to find out for sure. But I already knew.
I remember one of the residents saying great job shortly after Eleanor was born. In the NICU, all the doctors that rounded on Eleanor seemed OK. I don't have any recollection of negative comments or feelings. But I also don't remember a congratulations from anyone at the hospital.
The next day we had a visitor from a local Down syndrome organization. She congratulated me. She was genuinely happy. She came with a bag of things for us and shared her story with us. She told me how beautiful Eleanor was. But I wasn't ready to talk to her. Ed had just told our families. I wasn't ready to talk and I wanted to be alone with my baby. But she was in the NICU and I felt trapped by all the family around. I spent most of the days in the NICU with Eleanor and during the nights, the nurse would come get me when she needed to nurse. I am still very thankful that the whole team was so supportive of me nursing her, especially when they were so concerned about her intake and weight gain. Not once did they offer/suggest formula or ask me to pump so they could record her intake. Being able to breastfeed in the NICU is not something that is often able to happen. Breastfeeding a baby with Down syndrome can often be difficult because of low tone. Breastfeeding a heart baby is often difficult because of the high fatigue. I nursed on demand and was told to never let her go more than 3 hours without nursing. We made it work.
It wasn't until we were finally home and alone as a new family of three that I was able to process everything. We didn't have a bad experience and yet it was still a very emotional, difficult time to process everything. We had expected a different baby. There was nothing wrong with Eleanor, we just weren't prepared for her. I had to grieve for the daughter I thought I was having. I wouldn't meet her. Over time, I couldn't imagine Eleanor any different.
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