Axael Lyxander was born on December 14, 2010 at 9:58 am. It was a long wait but he was finally here. When i first saw him I was surprised he wasn't crying or moving he was a funny blue purplish color. The doctor tried his best to get him to breathe but only got a few short low yelp from him. He was quickly wisked away by the NICU team and the got to work. He's not crying I kept telling my husband. My husband just kept his hand on my shoulder looking over at the baby. He was xxrayed and that's when the found out he had CDH and more health problems the main being CDH. Congenital Diaphragmatic Hernia, What in the world is that you might ask? I asked my self the same thing. They gave me no explanation so I took to google.Thank Heaven for Google. CDH is when the diaphram fails to properly form in the early months of pregnancy, causing the organs in the lower abdomen to go into the chest preventing the lung or lungs to properly grow. He was transferred to Texas Children's Hospital. I couldn't go with him. I was forced to stare at the pink walls in the recovery room and wonder what was going on with my baby. I kept going over the list I read on the website about CDH and what are some of the treatments. The last thing I read was ECMO. I didn't know what it was but it sounded dreadful. ECMO is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function The next day we were able to be by his side. The doctors and nurse were so nice and explained just about everything I wanted to know about Axeal and his condition. Even though his night was ok it was decided he needed to go on ECMO. My heart dropped as I signed the consent forms. After a few hours he was successfully on ECMO and were able to see him.
The hardest thing a mother would ever have to see is her little day old baby on such a complicated machine. On December 16, 2010, His surgeon though is was the best day to repair him. After more consent forms and hours of waiting the surgery was complete he was stable. The surgeon found that Axeal had no diaphragm on the right side and his right lung was one sixth the size of the left lung. Axael was 5 days on ECMO. The days of the trail of was such and exciting days. Many people piled in the smallest ECMO room they had. My son, the center of all the attention. It went well so on Monday December 20, 2011 he taken off ECMO.
He was a true fighter. In the days after that I was able to do the thing I had wanted to do since I found out I was pregnant: HOLD AXAEL! He was kept intubated for a while and was transferred to the pod he would stay in for the rest of his stay. He was on and off CPAP a few times on and off nasal cannula.
He was having such bad tet spells (blue spells). Crying and crying turning blue and purple right away and no one knew why. His stats would drop to the mid 20's and he would pass out and recover. In the end it was found to be his heart that was causing the problem. On March 21, 2011 Axael had open heart surgery. He had two holes repaired by the Dr. D. Morales. The surgery took hours. He came out great. After a week in the CVICU he was brought back down to the NICU, to his old spot A7. After a week he was like a new baby. No more blue spells and just as happy as can be. A swallow study was done and he was found to have silent aspiration. Meaning anything he ate would go into his lung. A big no-no in for CDH babies. A G-button was placed on April 7,2011 and Axael was discharged April 14. 2011. Four months to the day he was Admitted. Very grateful to all the nurses we met while there all the purple pod girls and a few guys :). Especially NP Vanessa Nurse Amy and Nurse Mercy, and of course Dr. Guillory (her dedication and determination in getting Axael his heart surgery was unbelievable, FOREVER IN HER DEBT). Axael will be turning 1 this December 14, 2011. Something I can say at times I didn't think possible. He has been off oxygen since June and is only on one medication. He is on the little side but nothing time and food can't fix. He is now able to wear twelve months clothes. Heck even eighteen month and some twenty-four months clothes. He's about fifteen pounds and is twenty-seven and a half inches long. He had RSV in October. He stayed in the hospital a week and another two days in early November with a little cold. He'll always be at high risk of getting sick, but he's a fighter.
He bounces back fast. He is sitting up, waving bye bye, shaking his head no no when people say he's so cute, wanting to crawl but not quite there yet. He's just about the happiest baby ever. He is always smiling laughing and in such a good mood 24/7. God has blessed me with a wonderful baby and a great life learning opportunity in being the mother of AXAEL. Also can't go without being grateful to my family, my husband and my four year old son Jando. Jando went thru a lot this past year also and has become the best big brother and baby brother could ask for. I love my boys!
~Amanda Morena
