Camden's Heart, Deer Park, TX
When I was about 8 weeks pregnant I found out that I was having twins. I was both excited and nervous at the same time. My husband and I already had three boys at home. Well the day came at 19 weeks when we went to find out what we were having. We were praying for at least one girl. The technician started with all her looking around and we got to talking and we told her our story about having three boys at home. She got curious and wanted to see what they were before she finished all her measurements. She looked at Baby A and said “well it’s a boy”. My heart started to beat faster, I thought to myself, one more shot. She looked at Baby B and said, “I’m sorry, but it’s another boy”. I was so disappointed and upset. I was doing everything I could not to cry my eyes out. The technician continued on with her measurements and shortly I could tell something was wrong, she eventually went out of the room and got another technician. They came back and continued to look. Before I knew it, I didn’t care the sex of my babies anymore. I was scared for their health. She told me that they were concerned about Baby B. It looks like he has a heart defect. They couldn’t tell me exactly what was wrong. They set me up an appointment with a specialist and sent me on my way. The cardiologist confirmed that Baby B did in fact have a heart defect. They diagnosed him with Hypoplastic Left Heart Syndrome (HLHS). They told me that he was going to require three different surgeries, first one at about a week old, and eventually a heart transplant. My heart dropped. I could not believe that this was happening.
From that point on, there were constant appointments and ultrasounds to keep an eye on both babies. They were both developing very well (with the exception of the heart defect). I was 36 weeks along when I went into labor. I was fortunate and was able to deliver both babies naturally. I got to see Baby A, but when Baby B came out I was not able to see him. They had told me that as soon as he was born they would have to take him and give him a medication that would keep him alive until he had his first surgery.
The next day, my husband wheeled me down to the NICU to see my Baby boy, Camden. He looked good. You would never know that anything was even wrong with him. It was hard being so happy with Baby A, Cayson, knowing that Camden was going to be fighting for his life. I felt guilty when I was enjoying spending time with Cayson.
The nurses had told me that I would not be able to hold Camden before his first surgery. Imagine if something had happened to him and I was never able to hold him. The day before his surgery another nurse let me hold him, she said that there was no way that my son was going to have a major surgery like that without him mother holding him. It was the best feeling, as I looked down at him he briefly opened his eyes and looked up at me.
10/15/2010-Day of surgery for the Norwood procedure. It was truly the scariest day of my life. Knowing that the surgeon was going to be stopping my baby’s heart and opening up his chest to cut on his heart. It was so hard to say goodbye to him. I held his hand and prayed over him. Then they wheeled my baby back and we went to the waiting room for a long day. They gave up periodic updates, told us when he went on bypass, how far along they were, when they were about to take him off bypass. But the best update was when they told us that his heart was beating again on his own. When we finally got to see him in the NICU I couldn’t believe all the machines and medication around him. How can such a little baby handle all of this.
Day by day he got stronger and stronger. He was doing just what the doctor ordered. Three weeks later one morning we were coming in to see him and they were doing rounds. The doctors asked, so are you ready to go home? Of course I said yes, but there was that part of me that was scared to death. How was I going to take care of him, what do I do if something goes wrong? I knew we were going to be alright.
Bringing him home that day felt great. Our whole family is together. For the next three months we didn’t go anywhere. We missed Thanksgiving and Christmas with our family due to the doctors telling us that the time in between the first and the second surgeries were the most critically. This is the period in which they have the most deaths. They don’t know why that is the case though. So being the mother I am, only immediate family came to see him and we went no where.
February 2011, we finally got scheduled for his second surgery. I was really excited to get past the surgery even though I know there was a huge risk with this surgery, it was necessary. He made it wonderfully through the surgery and once again we were able to come home faster than we thought we would be able to.
Meanwhile, during Camden’s recovery in the hospital I was surprised to find out that I was pregnant yet again. This was really unexpected and unplanned. I remember telling my husband in our driveway at home and as soon as I told him, he started to laugh. Not exactly the reaction I was expecting. A week later we got to bring Camden home. His condition continued to improve and he recovered great.
Summer of 2011 I found out that I was finally having a girl. We were very excited!
Camden has been having checkups every 6 months and has been doing great. His surgeon keeps putting his next surgery off until he is a little older and bigger since he has been doing so well. After his last check up in July 2014, they doctors have decided to start looking at finally doing the third surgery. He is scheduled now for the Fontan surgery on April 8, 2015. At this point we are just living life to its fullest and loving every day of it.
I am a stay at home mom and my husband will need to take off work for at least one month and will not get paid. We are trying to raise money for missing income and medical expenses during this time.
Thank you for taking the time to read Camden's story.
God Bless You
