Introduction to Kiernan

I am starting this blog as a way for Kiernan to look back at his journey. He is now 5 months old and doing very well. Weighing in at about 14lbs 6oz.

If you are reading about Kiernan for the first time let me fill you in on his journey so far. He was diagnosed in utero with having a pretty significant Congenital Diaphragmatic Hernia as well as being karyotyped as having Klinefelters syndrome. To quickly explain The hernia (or CDH) was a hole in his diaphragm that allowed his small intestines to go up into his chest and prohibit the growth of his lungs as well as put some strain on his heart by shifting it to the right side (or wrong side) of his body. His severity was unknown until he was born.

The Klinefelters syndrome means that instead of having just an x and y on each chromosome he has xxy on each. The affects it will have on him will remain unknown for now. His fingers were long and his testes are undescended which is believed to be from the Klinefelters but not known for sure.

We spent the 4 weeks after diagnosis preparing ourselves for his birth and any possibilities it might have brought. It was the grace of God it was found early. He was born at 36 weeks and his Hernia was repaired at 4 days old. He had the most amazing team of doctors, surgeons, nurses, and specialists we could have ever asked for. He was born at St. Joes in Phoenix on August 20th, 2008.

He was born by c-section and was not breathing when he was born. They immediately intubated him and he spent the first day of his life on an oscillator and at day 2 he was transitioned to a ventilator. Kiernan was 14 hours old before i got to see him for the first time and 3 days old before i got to hold him. The day before his surgery I was allowed to rock him for a few minutes. It took his nurses about 15 minutes to get everything situated enough for me to hold him.

The next couple days after surgery were probably the most stressful. I was released from the hospital and could no longer just hop on an elevator to the next floor whenever I missed him. It was one of the hardest things I have ever had to do. Leave the hospital without my baby. It was now a 30 minute drive to the hospital and because of the c-section i was restricted from driving myself. Things did work out for the better that we just happened to be living with my husbands parents so it wasn't as hard on our other two kids. We began making the journey to go see him every night after the other two went to bed, trying to do our best not to disturb there routines as much as possible. My oldest didn't understand why Kiernan couldn't come home.

From surgery on Kiernan began to get stronger and heal and make progress. Everyday he amazed us and his doctors. Out came the breathing tube and he was breathing on his own, then out came the catheter, the number of iv pumps went down (he started with 9). He was beginning to be a normal baby. I have a calendar i have every little change marked down in. next he got moved out of the NYICU and into intermediate care then once he was eating on his own and no longer needed his picc line he was moved to the annex.

September 10th, 2008 Kiernan came home and our family was finally complete. Though he had made it through surgery and was healing we still had a long road ahead of us. Follow ups and specialists and a future surgery. But.... He was home. AMEN