There are many aspects of my pregnancy which I did not share because I was scared to do so. I did not want to fall apart every time someone asked me about it. There were only a few people who knew what we were going through, not even all of our families knew.
When I found out I was pregnant I was expecting to have a normal run of the mill pregnancy. I was starting seeing my midwife and was planning another homebirth with great anticipation. At 13 weeks when we found out I was carrying twins, our plans started to change. I was torn about my deep desire to have a homebirth and the higher risk associated with twins. After much prayer and soul searching we decided to have a hospital birth. I still fully expected to have a natural birth and have two healthy and perfect babies.
We went in for our 20 week anatomy ultrasound excited to find out the sex of our babies; two girls as it turned out. It appeared that everything was fine to our eyes. I got a call a few days later that they noticed a few abnormalities with Baby A and wanted us to see a Maternal Fetal Specialist in Portland. I called my husband Luke crying and asked him to come home from work.
Our appointment with the specialist was a few days later. A level 2 ultrasound tech preformed the ultrasound then we waited in the little room for what seemed like forever to hear the results. Our sweet perfect baby had what they thought to be a sub-arachnoid cyst between the hemispheres of her brain and was also measuring several weeks behind Baby B. I was crushed that there was something wrong with our baby. A repeat ultrasound was scheduled for 4 weeks later. At that ultrasound it showed that Baby A was still falling behind, but thankfully the cyst was not growing.
At my 24 week routine check up I went by myself for the first time. They did a cervical ultrasound and discovered that my cervix was shortened, funneling, and that I was having contractions. I was immediately sent over to Labor and Delivery to try to stop the contractions. I called Luke to let him know what was going on. He rushed over as soon as he could. Thankfully my wonderful sister was watching my daughter Kara and was ok with keeping her longer. I spent the night in the hospital and then spent the rest of my pregnancy on bedrest.
Finally at our 35 week appointment with the specialist they found that Baby A was no longer growing and had fallen below the 10th percentile. I had been having weekly biophysical profiles done where they look at the babies and check for movement, practice breathing, heartbeat, and placental flow. My doctor told me that for the sake of Baby B, that as long as Baby A was still doing well on the biophysicals we would wait until 37 weeks to deliver. At that time Baby A was breech and due to her size would have to be a c-section if she didn’t turn. I spent the next 2 weeks doing everything I could to make her turn. I went to the chiropractor, did inversions, put cold stuff on the top of my abdomen; nothing worked.
On Monday, October 29th I received a call from my OB saying that due to Baby A’s small size and the lack of a NICU she wanted me to have the babies in Portland. I could either have them that day or Tuesday, when we had originally scheduled. As it so happened that day was Luke’s late father’s birthday. We decided to do it that same day. So I packed everything up and made arrangements for Kara. The 2.5 hour drive to Portland seemed to go too quickly. I knew that I was going to have a c-section and I knew that it was what was best for my babies, but the fear and utter disappointment still made it difficult to handle.
My delivery was scheduled for 5:00pm, but since the hospital didn’t have my records they had to run numerous tests and then wait for all the results. At 6:30pm I started getting prepped and taken to the OR. At 7:05pm Ella Lucile came into the world crying and beautiful. She weighed just 2 pounds 14 oz and measured 16.75′. Her cord was so short that the doctor was barely able to pull her out and place her on my belly. I got to see her briefly before she was taken to the NICU. Two minutes later Aubrey Joan was born weighing 6 pounds 1oz and measuring 19.75″. I was able to hold her right away. She had to be taken away from me though as I started hemorrhaging and the nurse needed to put in an emergency IV in case I needed a blood transfusion. My uterus would also not contract which made the bleeding worse so I was given pitocin.
When I was finally closed up I was taken to the recovery room where I was able to hold and nurse Aubrey. After 2 hours I was able to leave the recovery and go to the NICU where I got to hold Ella for the first time. She was so tiny, but so strong. She nursed right away. Unfortunately I could not hold her for long because she couldn’t keep her temp up. I was taken to my room and had to leave one of my babies behind.
The next day I was able to be wheeled down to the NICU and feed and hold Ella. It was so terrifying. She looked too small and delicate and the IV in her hand was scary. Yet it was so nice to finally be able to cuddle my baby. After two days her IV came out as well as her feeding tube. She had slight jaundice but it cleared up quickly. The pediatrician performed and ultrasound on her brain and discovered that not only was the cyst possibly not a cyst, but a fibroid; she also had partial agenasis of the corpus collosum. Which means that the halves of her brain do not have full communications. When Ella was able to maintain her temp outside the incubator she would have an MRI.
Friday, November 2nd Aubrey and I were released from the hospital. We had a friend bring her horse trailer with living quarters over for me to stay in with Aubrey.
On Monday, Luke and Kara went home. I spent the next week by myself at the hospital being with Ella as much as I could. She started to gain weight and got out of the incubator. The MRI was performed and she did in fact have a fibroid and a partial corpus collosum. The fibroid would most likely be asymptomatic and would not need operation, but the collosum could either be so mild that it is never an issue or it could be totally debilitating. There is nothing that can be done. We can only wait and see. This has broken my heart that my baby might be different than her twin and unable to have a full life. Once my grief and mourning past I was able to take comfort knowing that this special little girl was sent to my family for a reason. We love her and would not trade her for anything.
After 13 days in the NICU we were all able to come home. As difficult as it was to be away from my family, I am grateful for the time I was able to spend with just my babies and have no other responsibilities except to take care of them.
It is now 6 months later. Ella is doing amazing. She is a miracle. With everything else she was also diagnosed with partial lissencephaly. This means portions of her brain are smooth. After meeting with a neurologist we were told that she is doing things she shouldn’t be able to. Her development is right in line with what it should be. She shouldn’t be able to roll over, or nurse, or sit unsupported, or get her belly off the floor. In fact children with her diagnosis do not usually reach the development of a 6 month old until they are 2 years old. She is happy, healthy, and her and her twin Aubrey nurse exclusively. We are hopeful for her future and terrified. If you look up lissencephaly you will see why, but we try not to think too much about how long we will have her and just enjoy the time we do have.