This Month's Featured Family!
January 2006
Andrew
Born October 23, 2004
PRS, Microtia, TAPVR repaired, VSD repaired,
Co-Arch repaired, TEF repaired, Fundo,
Possible Goldenhar Syndrome
Florida
I'd like to take a moment and share the past year of my life with everyone.
When I found out I was pregnant with my second child I had a lot of mixed feelings. I was unwed and had broken off a commitment that had lasted well over a year. I felt all alone. I had no family up in the Seattle area. All I had was my 9-year-old daughter.
I will never forget the day I told her I was pregnant. I think she had major disbelief until I started showing. I did have mixed feelings at first about staying with child. I overcame that real fast with the help of some close friends and a loving mother.
When I had made a final decision to keep my child and raise it in a single-parent home, I decided to go for my checkups. All was well with me. I had all my blood tests to check for any malformations in utero.
I had a normal ultrasound. YEY!!! It was a boy. I was so happy to find out I was carrying a little boy. Heck, I had a little girl and now a boy. What else could I ever want in life...except to win the lotto...LOL!
At about six months along I wasn't feeling good and knew something was wrong. I was in labor...premature labor. I went in the hospital twice for them to stop the contractions. I was then put on bed rest. YUCK!
I then started to fear there was something wrong with the baby. I asked my doctor if all the tests were 100% for sure ok...she said yep...all is well, just rest. All along I knew something was wrong with my boy, I just didn't know what.
Well, the little turkey turned, made me puke and was breech.....lovely! So we waited and he turned again. Now we were ready...it had been long enough he was in position and I was taken off bed rest. Yippy!
About five days later my water broke, so we went to the hospital. Right then it dawned on me that this boy had to come out of me. OMG...I remembered back almost nine years ago...the pain...the agony...oh, the pain....so naturally I had an epidural. Wow! That was the perfect thing.
I had some issues so I had to wait to have this little guy for a few hours. He was in no hurry either...LOL! So they finished breaking my water a few hours later, after they got my issues under control. The mid-wife left and didn't even make it to her car when she got the page. She rushed back in and no more than 20 minutes later my boy arrived.
All of a sudden my heart sank. I didn't hear a cry. The nurses and doctors looked worried. I heard them say I can't suction him. Then I heard a little cry. So I thought all was well. My daughter had had the cord around her neck, so he must have had it, too.
Then I saw the look of panic on their faces. They called the neonatologist up. She and the nurse looked scared and puzzled. They told me they had to take him but I could hold him briefly. They put him in my arms and I noticed his ear was messed up. I thought, this can't be...it will straighten out on its own. Of course, it has to, right? Wrong!
I begged my mom to go see what was wrong. She came back and told me the doctor will be up to explain further, but my son had to go to another hospital.
I don't really remember what was said. I was in shock. All I know was I had to get out of there and off to see my boy. I got to my room and the phone calls started. First it was a GI doctor. Now what in the world was that? I had never heard of such a thing. He said my son had a TEF. Okay, whatever, I thought.
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We were taken back to the PICU. He stayed intubated for nearly three weeks. I couldn't hold my boy. Then he was extubated and was going through severe withdrawals from his meds. The doctors moved him to the floor and all decided we needed to have a fundo. We had it and well, he came down with the rotavirus. So he stayed ten days longer.
We came home and he had the most violent gagging and retching after feeds. That soon subsided. Now he couldn't spit up or burp. Sounds great, huh? Well, it wasn't that he was in pain and thank goodness we had the g-tube to vent from.
We moved to Florida in June and all was well until he came down with a virus. Back to the hospital we went. Now this was a new hospital to us. We knew everyone at the other one...LOL!! It was scary, but he was only in a few days. Now this was just last week. Now we are home and
So at three days it all started. He had that repaired and his co-arch repaired. He had tubes everywhere and was intubated. I couldn't hold him. I didn't want to hold him. Heck, I was scared!! I just wanted it all to go away! It didn't!!
Then he crashed in the ICU....he had to go to Oregon to have open heart surgery. So the next day we went. He was three weeks old and had already had two major operations. It looked grim. Real grim.
Then he pulled through. He was okay and we were back in the Seattle area in a few days. He came home in December right before Christmas.
He then became ill. He was aspirating. We fed by g-tube only at that time, which was placed after his co-arch was done. He still declined.
In February we were back in with respiratory distress. He got better and went back home, all to crash in the ER a month later. He came down with pneumonia. He was intubated again. Now he had since been diagnosed with PRS, so he has a difficult airway. I sat in the ER watching them revive my son. I have never been so alone or scared in my life. I prayed and prayed and the next thing I knew he was stable.
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Then the cardiologist called. Sheesh...why him, I thought. My son was born with a real bad heart. He had a TAPVR and a VSD. He was in bad shape. They had to figure out how to keep him alive.
I went early the next morning to the other hospital. There he was in a warmer with that still messed up ear. The doctors came over and told me he had a shallow airway and a small mandible. Okay, whatever! So he's not perfect.
Then he was leaving for surgery. OMG!! What!! Surgery? Why? It reality hit. His heart had to be fixed. So they went and made a small hole to get the blood flowing and then he developed a co-arch of the aorta. Okay, what else is wrong now?! Well, they had to get his TEF fixed.
come to find out while in the hospital he saw a few surgeons and a genetics doctor and well, a few ENTs. All of them are associated with our cleft team.
I received a call and we will be seen by the team Oct. 21. He has a cleft of the soft plate which we found out he had during open heart surgery. Like I said, what else can they find!! LOL!!
After this cleft is repaired we can move on and get him ready for his ear canal to be reconstructed in a few years. You see, Andrew can't have that fixed until he is 6 to 8 years of age. The ear has to reach full adult size to reconstruct.
Now we will have a few minor procedures regarding his heart throughout his life. We have to get him feeding well and he will get rid of his g-tube as well.
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He is my gift from God!!! All I have been through is nothing compared to what he has encountered in such a short period in his life. We will be celebrating his birthday on Oct. 23. This is a mile stone!! I never thought he'd make it, but through God's grace he has!!
I don't know what the future holds for me, my son, or my daughter, but whatever it is we can make it!! If any parents would like to get in touch with me please do so. I have a Yahoo Profile with a lot of links and a Yahoo 360 page with tons of pictures.
God Bless,
Angela Nixon
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This cleftAdvocate page was last updated March 25, 2014
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