Wednesday, September 2, 2015

September 2 - Dear Nicholas Sparks (Guest Blogger Christine Edwards)

Dear Mr. Sparks,

Cody Guillory Edwards, born on June 3, 1998, 9lbs. 3 oz. and 24 in. long, arrived home July 26 after almost 8 weeks in the intensive care unit of Phoenix Children's Hospital. What a wonderful and long awaited day it was for Mike and I.

But let me start from the beginning! A routine ultrasound done at 24 weeks showed a defect in the baby. A week later a level II ultrasound confirmed that our baby had a condition known as a right-sided congenital diaphragmatic hernia. What is this? Good question, we didn't know either! The diaphragm separates the chest cavity from the abdominal cavity. A hernia is a hole in the diaphragm, which then allows the contents of the abdominal cavity to float up into the chest cavity. The result: the baby's lungs do not have the room to grow properly. This happens in 1 out of 2,500 fetuses, however only 10% of those occur on the right side which is often more serious than the left side. The outlook was not good. Our baby was given a 10% chance of survival.

We spent the next 4 to 6 weeks researching this condition. Fortunately, there are two centers in the United States that study this condition and we were able to get much information from them. We also learned that this is one of very few conditions that fetal surgery is done. We qualified for fetal surgery but after much soul searching and information gathering, we felt our baby's best chance for lung development was to go full term.

After the decision was made to go full term, we then needed to set up our baby's post birth care. It was his only chance. We chose Phoenix Children's Hospital and prior to Cody's birth, met with the neonatologists, nurses, surgeons, and ECMO coordinator. We also viewed an infant on ECMO. Cody's post birth care was set up by 32 or 33 weeks gestation and then all we could do was wait and pray that he would fall into the 10%.

The day to be induced was selected and on June 3 at 9:30 p.m. Cody Guillory was born (after of course 12 hours of labor -- and no we did not know the sex until then). And then the rollercoaster ride began (the 4 months prior was nothing). The second the cord was cut, I stopped doing the breathing for Cody and he was handed to a team of 10 people who worked on him, a foot from my bed, to necessitate and stabilize him. It was tough, but after 35 very long minutes, Cody was wheeled down to the NICU. Cody survived birth, the first of many hurdles for this little guy. Three hours later a surgeon hooked Cody up to ECMO. Hurdle number two had now been overcome -- Cody made it on ECMO. He was very, very sick though. For the next 14 days, we watched our little guy struggle to survive. He had so many tubes coming out of him, it was hard to even see that there was a baby lying in the bed. Time was running out for Cody. At this point, we still had no idea if Cody had a lung (we know that he will not have a right lung, but we were hoping for a left lung). All x-rays and ultrasounds were inconclusive. And then on day 14 we got the news, a good size left lung had finally opened up! He did have a lung, but would it work. That was the next question. Cody gave us the sign, we went forward with his surgery to close the hernia and move the liver and bowl back into the abdominal cavity from the chest cavity. Surgery on ECMO is very dangerous, because if the baby starts to bleed there is little chance to stop it. But we had to go forward. At 5:30 p.m. on July 17 his surgery was done. During surgery, a small right lung was discovered. Good news, considering lung tissue grows until you are 8 years old. The surgery went well, and then we waited, praying that he would not bleed. Forty-eight hours post op, we got a call from the nursery. Cody was bleeding, we needed to come down right away. There we sat holding Cody's hand while 10 or 12 people worked on Cody trying to stop the bleeding and stabilize him. About 4:00 a.m., the bleeding seemed to stop and Cody appeared to stabilize. Mike and I stayed till about 6:00 a.m. and then went home. We spent that afternoon with Cody, in very good spirits. After a terrible night, Cody looked very peaceful and very strong.

The next morning, Father's Day, we got the call, Cody was doing great! They were weaning him off ECMO and planned to decannulize that evening. His turn around from Friday night to Sunday morning was miraculous. It had never been seen before ( and they have been doing this for 11 years). What a great Father's Day present. Mike and I went down that afternoon and at 6:27 p.m. the ECMO circuit was clamped and for the first time in 18 days Cody used his own heart and his own lungs! Two hours later he was taken off ECMO.

Still very fragile, his condition was very guarded. Any setback could be devastating. So we waited some more! And every day Cody got a little bit better and a little bit stronger. He was on a jet ventilator at this point to help him breathe. He was suppose to be on this machine about 4 weeks and after 13 days he did so well they switched him to a bird ventilator which allowed him to do more of the breathing. So after 4 long weeks, Mike and I held Cody for the very first time!! What an exciting day. The game plan was to keep him on this new ventilator 3 to 4 weeks and after 3 days he self extubated (pulled the ventilator tube out of his mouth), and started to breathe completely on his own!! It was the first time we had heard him cry -- what a great sound!!

Cody continued to get stronger every day. He started to smile and coo just like a regular baby. We finally started talking about a come home date. And on July 26, that is just what happened. Our beautiful baby boy come home to meet his big brother and sister. Cody took to being home very well! He sleeps about 18 hours a day. He came home on some equipment -- oxygen, feeding tube, and apnea monitor. But within a few months should be off all of this equipment. We all feel very blessed that Cody is home with us and we plan to take very good care of our beautiful baby boy!!

Cody's mom, Christine Edwards (Arizona)

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