Thursday, May 28, 2015

May 28 - Dear Nicholas Sparks (Guest Blogger Jennifer Blair)

Dear Mr. Sparks,

I remember the day I found out that our baby had a diaphragmatic hernia. I had never heard of it. I found the CHERUBS website and cried and cried and cried. I called my mom and told her more about this terrible birth defect and brought home information to my husband. We cried some more. Days passed, and each day I would go to work and read more stories off the CHERUBS website. It upset me so much, but I wanted to find out all the information I could so that we would be prepared. I finally came to the conclusion that it was not going to do any good for me to be miserable for the next four months. My family and I prayed a lot and hoped for the best. I remember thinking that one day I was going to have a good story to put on the website.

Well, it has been 18 months, and I am finally writing Caitlin's story, and it is a good story.

My husband and I had tried to get pregnant for a year and a half before we finally got good news on November 5, 1999, that I was pregnant. We were so excited and our parents were on cloud 9 since this would be the first grandbaby. The months went by and I felt wonderful. I went to the doctor for my five-month checkup, and on the way out, I remembered that they could do an ultrasound to determine the sex of the baby this month. Since the doctor didn't mention it, I decided to ask him if I could have an ultrasound done. He said I could and an appointment was set up for March 2, 1999.

My husband and I, along with the two anxious grandmas, went to find out the sex of our little one. As the girl was doing the ultrasound, everything looked good, and she said it looked like we were going to have a baby girl. The grandmas had to leave, and Lee and I were enjoying watching our little girl moving around. About that time, the doctor came in, and he and the girl doing the ultrasound were looking at the screen and talking softly. Lee and I looked at each other and knew that something was odd.

The doctor told us that it looked like the stomach was up higher than it should be, and he wanted to send us to a specialist for a second opinion. He told us that it was hard to tell because she kept moving around. We were shocked, but we figured everything was fine, and he just couldn't see it right since she was so active.

That next week, I received some paperwork to bring with me when I saw the specialist. It was noted on the paperwork that their prognosis was that our baby had a diaphragmatic hernia. This is when I began finding all the information I could on this defect, but at the same time praying and hoping that the doctor was wrong. On March 9th, we went to Arnold Palmer Hospital, and it was confirmed. We were bombarded with information, and our roller coaster ride began. We were put in touch with a genetic counselor, neonatologist, pediatric surgeon and fetal specialist. Lee and I and our families were all in shock and we all cried a lot. I told myself that it was not going to do any good to cry and make myself sick for the next four months, so I put it in God's hands. He made our baby, and he has a reason for everything. We had a few church services on miracles and healing. This built my faith, and I gave it to God. People all over were praying, and that was all we could do.

On March 21, we saw our fetal specialist to have an amnio done. When the doctor came in, he asked me if I wanted to have an amnio done. I said, "Not really," and he said he would do an ultrasound and then we could talk about it. He kept saying head - normal, lip - normal, everything was normal, and we were so encouraged. Afterwards, he said everything else looked fine, and it was up to me to do the amnio. We decided not to do it, and we left with smiles on our faces. He was the first doctor to give us hope.

The months progressed and everything was going well. On June 5, 2000, Caitlin was born, one month before her due date. When she came out, she didn't cry, and I didn't get to hold her because they intubated her right away. They had prepared us for what she would look like the first time we got to see her. There were tubes everywhere, and she was so small at 4 1/2 pounds. One week after she was born, she had her first surgery to repair her diaphragm and put her organs back in place. She had her stomach, all of her intestines, her spleen and part of her liver up in her tiny chest. It was a miracle that she needed so little oxygen up until then. One of the nurses told us that after Caitlin was born, they put her by the ECMO machine because they thought she would need it, but she never did, thank the Lord!

The next few weeks were up and down, and Caitlin did not seem to be improving. She was still on the ventilator and had lots of tubes everywhere. She developed a condition called cylothorax, where a tear in her chest lining was allowing all of the fluid and nutrition that she received to come out of her chest tube. When Caitlin continued not to improve, the doctors decided that a hole in Caitlin's heart was the problem. We got to hold our little angel for the first time one month after she was born. I know the reason they let us hold her was because they didn't know if she would make it through the heart surgery. They repaired her heart and cylothorax on July 5th. She had two holes in her heart, a VSD and an ASD. The surgery was a success, and she began to improve. Slowly, the nurses started giving her milk through a tube and started decreasing her vent settings. After a lot of ups and downs, Caitlin had learned to breath on her own and drink her milk through a bottle. She came home on August 22, 2000. Caitlin was on oxygen and required lots of medications and breathing treatments three times a day. We know that it could have been a lot worse, and we thank God every day.

Caitlin is now 18 months old and is doing great. We still see several specialists quite often, and she will probably require surgery again to repair her curved spine. She has had three colds and done really well with the help of breathing treatments. Not a day goes by that we don't thank God for what he has done. Looking back, I know that God had a perfect plan, and he put so many people in the right place at the right time. I even think that he made her a feisty little redhead because he knew that she would have to fight to survive from day one. She is our "miracle," our angel from heaven.

Caitlin's mom, Jennifer Blair (Florida)

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