Wednesday, June 10, 2015

June 10 - Dear Nicholas Sparks (Guest Blogger Tacara Brown)

Dear Mr. Sparks,

My baby was born on March 6, 2001, around 9:27 a.m. He weighed 6 pounds and 11 oz and measured 19 and one-half inches long. I learned about this condition when I was watching a program on T.V. At that time, I was two months pregnant. I didn't find out that my baby had this condition until I was four months pregnant, and when the doctor told me, she scared me a little because she was talking about how her friend's baby died because of this condition, and she told me that I had to go to Gainesville, FL. So I was treated as a high-risk pregnancy at that time. I was sad because I remember the program that I saw earlier, but it was very hard to tell my husband that our baby had CDH.

During my pregnancy, I found more information about this condition, and I knew it was serious, but how serious, I didn't know for my child; I had to wait and see. By the time I was 7 months, I had had 12 ultrasounds, and I had been to Gainesville twice just to see which side it was on. The doctors confirmed that it was the right side but couldn't tell how much of a lung he had on that side. Then we met the doctor named Dr. David Kays, whose specialty is taking care of babies with this condition. My husband and I met him, and basically, he explained everything to us, including about ECMO. He said he usually takes the baby around 37 weeks, so he wanted me to come back on March 5th of 2001. My husband and I had mixed feelings because we didn't know what to expect, but we were happy that we found someone who was devoted to his work, and we could tell that once a CDH baby is born, those were his children.

On March 4th, I went in to labor, and I went to St. Luke's Hospital at 3:30 in the morning. The doctor checked me, and I was an inch dilated, so he told us to go ahead and go to Gainesville, which we did. Once there, they checked my contractions and as luck would have it, I wasn't dilating. So we checked in a hotel free because it didn't make sense to go home, and the next day change our lives forever.

On March 5th, I checked in around 3:00 in the afternoon, nervous since this was my first child. I didn't know what to expect. They had to induce me in order for me to contract, which was painful. Then the next morning, the baby was in distress, and they went in, and I had a c-section. Tara'mais John Lamkin Brown was born at 9:27 a.m. I remember when he came out, he had that face like he was mad, and he made a little noise. That sounded good because I knew he had life, but that was just the beginning of his life. Within a few hours, they told me he had to be on ECMO.

When I saw my baby, I started to cry because he was so small and fragile, but yet I couldn't hold him. The machine he was on was so big, and the tubes-- it was very overwhelming for me. I was mad because he shouldn't have had to go through this, and it wasn't fair. My husband and I cried like children, we couldn't stand to see Tara'mais like that. He was on ECMO for a few days before they could repair him. They repaired him on March 12th. The surgery usually took two hours, we were told, but to repair Tara'mais's took 3 hours. He came back and said that our baby almost didn't have a diaphragm at all and his liver was far in his chest, smashing the right lung. He said that he might not live, and the next two hours were critical.

The next morning, he was awake and squeezing my hand very hard; that let me know he was strong. He was on VV ECMO up until March 22nd; then they switched him to VA ECMO. I didn't know which was worse. I was hoping for the best recovery because I couldn't wait to take him home with me. The nurses there took good care of him. I remember him trying to pull the tube out of his mouth, and they had to watch him. Everyday my baby was getting stronger. He kept on fighting with the nurses; he wouldn't be still, plus he didn't like to be touched when he was sleeping. I remember one morning, he had his eyes open, and he stared at me and had those little hands in the air, like he wanted me to pick him up. I told him,"Not yet, little man, but soon."

Then one day, on April 1st, he coughed really hard and split his diaphragm open again. They called me that night and told me that his stomach was hanging out, and they had to call Dr. Kays, and once again, they had to do another surgery. I was up all night long with the nurses; he scared everyone that day.

Tara'mais was on ECMO for a month, and he was improving a little, but the doctors had a different story. They took him off ECMO on April 11th, and they gave him 50 percent chance of living, 50 percent of dying, which was hard for us. But the next day, he was awake and squeezing my hand hard, letting me know that he was not done. On April 27th, he was off the ventilator and on a c-pap, which he was doing really well on. The only condition they are concerned about is his heart because it is slightly enlarged due to the fact that he was on ECMO for so long. Now he is on a nasal canulus and still gets upset when the nurses give him his vitals. Those hands ball up in a fist with his hand in the air; the only difference now is that he cries, and it is so cute.

Tara'mais' mom, Tacara Brown (Florida)

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