On November 26, 2005 at a little over 18 weeks, I went in for a sonogram that my sister and one of her co-workers were going to do to see if they could determine whether I would be having a boy or a girl. It was a last minute thing. My sister called and said they were slow and that if I wanted to go in that I needed to do so immediately. So, of course I went, I was so excited! Little did I know that this day would change the rest of my life. While there Sofia’ s father called from Pakistan just to check on me and I told him to call back in about 30 minutes because I was going to find out what the baby was. They did the sonogram and my sister was able to tell me immediately that I was having a baby girl! I couldn’t believe it! We had already been calling her Sofia even before we knew she was a girl! My sister and I left and I went to meet my step mom at the mall. While she was in the dressing room my dad had called on her cell phone to talk to her from out of town. He told her that something bad had happened and he needed to talk to her but that he would wait till later. She and I were worried and had no idea what was going on. Apparently my sister’s co-worker called her and she called my dad. The next day I was over at their house to see my dad when he got back in town. My sister also showed up without her kids which was very strange to me but I said nothing. We sat around the table just talking and she said she needed to talk to me. My dad asked her to wait because he was waiting for someone else to come over. I was so lost. The doorbell rang and my mom was at the door. I was a little freaked out at this point. Then my sister grabbed my hands and started to cry. She told me that when her friend had done my ultra sound that she thought that she saw that Sofia possibly had a birth defect called Congenital Diaphragmatic Hernia. My step mom had looked it up the night before when my dad had told her, so she had printed out some info for me which was not very positive at all. I was totally devastated. I couldn’t believe what was happening. Everything that I looked up said that Sofia only had a 50% chance of surviving. I got into a doctor right away and was referred to a Maternal Fetal Specialist or Perinatologist. He did more ultra sounds and confirmed that Sofia did have CDH. Other than an amnio I can not remember what other tests I had during my pregnancy. I just know that every time I went to the doctor after that until I was 26 weeks that I was offered the chance to terminate my pregnancy if I wanted to and was told again that there was a very big chance that Sofia was not going to survive. I felt that it was not my decision to make whether or not Sofia would live and chose to continue with my pregnancy. In January 2006 I met a group of 6 other mothers also expecting CDH babies. They were the greatest support ever along with several other mothers I had met who had also dealt with CDH. It still amazes me to this day how many of us there are.
I saw my doctor on April 12, 2006 and decided to schedule and induction for April 20th. On Monday, April 17th, I had gone in to see my Perinatologist for my weekly sonogram and non- stress test. While I was having the NST I overheard him talking to the Sonogram Tech and asking him where I was because I needed to get to the hospital right away. Apparently my water had been leaking and there was not a lot of fluid left around the baby. I immediately went to the hospital and induction was started at 4pm. I had opted for a slow induction to make sure that I dilated so that I would not have to have a c-section. So, I did not have Sofia till 10:33pm. After my doctor unwrapped the umbilical cord from around her neck and her daddy cut the cord, Sofia was passed on to the NICU staff in the room and was immediately intubated and rushed to the NICU. I don’t even remember seeing her. At around 2am the nurse came in to tell me that I could now go to the NICU to see my baby girl. Sofia was so beautiful. A nurse had stuck a big gold and yellow bow to her head! She was on nitric-oxide and on an oscillating (high frequency) ventilator. She also had 2 chest tubes. The next day they had to place a third chest tube. We were really concerned about ECMO because there were only 2 machines at the hospital and they already had 2 babies on them. So, if Sofia needed ECMO she would have had to be transferred to another hospital here, but it is a Military hospital. Also Sofia’s blood pressure was really low and the docs had maxed her out on blood pressure meds. So, they told us that they had done all that they could do for her and that she needed to start doing some of the work herself. At days old, Sofia was taken off the oscillator and put on a conventional vent and also weaned from the medication that kept her paralyzed. The next day she woke up and looked at me for the first time. It was so hard to see her cry since there was nothing I could do for her and we couldn’t even hear her. On May 3rd, Sofia finally had her repair surgery. They started at 4:30pm and came out at 5:18pm to tell us surgery was done and Sofia was doing well. The doctor also told us that Sofia’ stomach, liver, intestines and spleen were all up in her chest cavity. This was worse than what they had thought. The hole in her diaphragm was small enough to be sutured together and did not require a patch. But, she was wide awake when we went in to see her! The next day Sofia was finally taken off of nitric oxide. They also had to take Sofia to the OR for another surgical procedure to place a central line. That one also did not take long and again Sofia came back wide awake! On May 7th, Sofia was extubated and was able to sleep on her tummy! She really likes that! We also got to hear her cry for the first time and she sounded like a little frog! Late that night I was allowed to hold my baby girl for the first time. I was the only one there other than the nurse, so it was very special. I thought I would never let her go! She was also moved into a “big girl” crib! On May 10th, Sofia was finally given breast milk. She was finally content with food in her tummy! She tolerated her feeds well and only had to be on a one medication for reflux. On May14th, Mother’s Day, Sofia was transferred to the Special Care Nursery! This was such a big step! On May 20th, Sofia was taken off oxygen completely and did very well! I knew it was getting close to being time to go home! Sofia’s last couple of obstacles we had to overcome were that she had MRSA and had to be cleared of that and also to get her taking 8 feedings with a bottle everyday. Well, on June 8th I finally got to take my baby girl home after 7 ˝ weeks in the hospital. It was the most wonderful day ever 2nd to the day she was born!
Today, Sofia is a very healthy and active 2 year old. She has caught up on everything that they thought she would have delays with and is actually a little advanced for her age. We aren’t sure what the future will bring for her, but we are pretty confident that she will not run into anymore health problems.
