As many of you have known, we were very excited in February 2008 that we were expecting our 3rd child. We have a 6 year old son, Carson and a 4 year old daughter, Joy. I had been fortunate to have had two easy pregnancies with Carson and Joy.
At 12 weeks pregnant I went in for a transnucelous test on April 1st. I had this test done with Joy and like it because it is not invasive. I decided to bring Joy because she was so excited that she is going to be a big sister. Joy and I went into the the ultrasound room at Magella in Newport Beach. The ultrasound tech started to do the ultrasound and I was so excited to point out the heartbeat to Joy. I was immediately devastated when the ultrasound tech gasped at what she saw come across her screen. All the information the technician would give at that moment was "this does not look good". At this time, I had tears in my eyes with Joy pulling my arm asking, "what's the matter Mommy?" The technician kept apologizing and said she would be back with the doctor. The doctor came in and evaluated what she saw on the screen. The doctor explained to me that there was a very significant size cystic hygroma on the base of the babies head down to the bottom of her spine. A cystic hygroma is a large fluid filled sac that usually means the lymphatic system is not developing. The doctor also explained that because this was discovered so early in utero it was most likely related to Turner's Syndrome. At 16 weeks I had a CVS test to confirm that this was Turner's Syndrome. Turner syndrome (TS) is a medical disorder that affects about 1 in every 2,500 girls. Although researchers don't know exactly what causes Turners Syndrome, they do know that it's when there are 45X chromosomes instead of 46X chromosomes. The effects of this condition vary widely among girls with Turners Syndrome. Now, this did not sound all that bad to us but, after seeing a number of specialists and doctors they said because the cystic hygroma was so large so early in pregnancy that the baby did not have a chance of survival. Every report kept stating fetal demise, which means the baby is dying. Doctors encouraged Dennis and I to terminate our pregnancy. We did not want to play God and put our child's life in our own hands. We decided to leave this 9 months in God's hands. So, I decided when God decides to take this baby He will take her. I had a very slim chance of making it to 16 weeks and then 20 weeks and so on. I knew that I would have to do an actual delivery if the baby was anything past 20 weeks. Each week, we would head into the doctors office for weekly ultrasound checks to see if there was a heartbeat. There were many times I would skip a week or two because it was emotionally draining to see the looks on the doctors faces and come out with the same prognosis. At about 23 weeks, the swelling in the baby was so bad and the heartbeat was so weak you could barely see it. Dennis and I started to face the possible reality that if the baby passes then would we have a funeral and where? Would we have the kids there? Would we allow any friends and family? .....After 25 weeks, the doctors continued to shake their heads that the baby's heart was still beating. Although, the swelling in her body had worsened at this point we continued to take one day at a time. Both specialists had said that if she makes it to full term then most likely we will not be bringing her home.
Approximately 31 weeks, I went to another appointment and the doctor was very quiet and kept looking at everything with the ultrasound machine. I just laid there waiting to hear the same news....well, the doctor said, "Jan, I think your little one is going to make it!" To my surprise I was shocked. He said all the swelling is gone! He was definitely stumped wasn't sure what to say, what to do, he was just stumped! He tried to back peddle a little bit, he said, "IF she makes it, I think she's going to be okay."
At 33 weeks, the same doctor was still amazed at the baby's edema had gone away. However, he did make me aware of her potential heart issue and said we will need to have an eco cardiogram done when she is born. At 34 weeks, we had to start talking about the delivery. We had prepared to do a c-section at 38 weeks because the baby was breeched. Well, we made it to 37 1/2 weeks and I am going to let Dennis take over and let him tell you the delivery story...
On Sunday, September 28th, we went to church at 11 AM and lunch afterwards. Jan was having mild contractions at church and lunch. We called her doctor and he said to go hame and lay down because Jan was able to talk calmly and she said the contractions were not that bad and she was not sure if they were real contractions. Once we got home and the contractions intensified, we called the doctor again and he said get to the hospital. We got about 10 minutes from the house on the way to the hospital and Jan was in excruciating pain. I pulled over to have her lay down in the back of the car. She could barely walk to get out of the car. Once Jan was in the back of the car the baby started to come out feet first. I immediately jumped back in the car and headed to the fire station, (fortunately, we had driven by the fire station a couple minutes earlier so it was fresh in my mind). By the time I got the firemens attention and out to the car, Jan had another contraction and by then, the feet, legs and butt of the baby are out. Not good. Fireman and paramedics took over and immediately put Jan in ambulance to the hospital. Jan had the episeotmy in the ambulance and the baby was fully delivered in the ambulance. The ambulance ended up taking Jan and the baby to St. Mary's Hospital. Both Jan and baby Rebecca made it!
On 9/29, Rebecca had many tests run including an eco-cardiogram. The results showed that she did have a coarctation of the aorta, (a common cardiac problem found in Turners babys). Both baby and Mommy were discharged from St. Mary's the very next day. Baby Rebecca was immediately transferred to Childrens Hospital Orange County ( CHOC ). We were told they had the best Cardiac Surgeon for newborns there. After a long week of added tubes, pick lines, IV's and testing on a week old Rebecca, the uncertainty of when and the outcome of Rebecca's surgery was once again trying but short lived. The doctors let us know that she was scheduled for open heart surgery on Monday, October 6th. Baby Rebecca once again made it! She did really well in surgery and spent a little over a week in the CVICU (cardiovascular intensive care unit). After one week and a day baby Rebecca was transferred back to the NICU where they would concentrate on feeding issues. In order for Baby Rebecca to come home, she will have to take all her feeds by bottle. She is now taking every other feed by bottle and the rest by a tube that goes through her nose.
There have been some good days and really hard days but, Baby Rebecca continues to show us her strength and presence. Whenever we get frustrated that she is STILL in the hospital we quickly put it all into perspective....at least she is alive and here. The power of prayer has brought us thus far and her prognosis is very good. There is no odd shaped organs or brain damage. She does have some extra skin in the back of her neck area from the cystic hygroma that was spotted in the ultrasound at 12 weeks, but there is no fluid. As the Geneticist stated, "We can do a little nip and tuck when Rebecca gets older to get rid of that extra skin." We will learn more about her as time goes on. She has already taught us a few things like, patience, faith, trust and enjoying each moment and breath.
We pray that baby Rebecca will be home by Thanksgiving.
In the meantime, we are all doing well. Carson and Joy are SOOO excited about their little sister. We are so thankful to God that she's HERE!!
