Growing up fast

Wow Kiernan, you are getting so big. Starting eating cereal this week. Seems like such a little thing but with everything you have been through every little change is big. It's exciting to see you do new things but a bit sad to because you are growing up fast. Part of me wishes you could stay small forever but at the same time I'm glad you are growing so well. You have discovered your voice and boy do you use it. Always talking and you now get so impatient with me if you aren't getting fed right when you want to. I love listening to your little voice and all the sounds you make. The funny faces are the best, so serious when you talk to. You are out growing everything fast. Still cant get you to sleep very long in your big crib but I'm working on it. Part of it little man is that I'm not ready to have you in another room all night yet. Maybe it would be different if you slept all night. You changed your sleep habits and now you are up again like every 2-3 hours. I'm praying you go back to the other schedule you were doing. That was so nice only getting up twice. You are still taking 1 good nap during the day so that's good, I get a bit longer break in feedings. Your sissy likes it to when she is up and you are sleeping. She's got some jealousy issues shes working on but it's getting better.

I'm still waiting for you to start rolling over. I know that its coming, you just gotta do it in your own time. Your brother just left for school and you have decided you don't want to go back to sleep this morning. Hopefully that means you will take a nap with your sissy. Your playing in your bouncy seat right now and I keep looking over at you and I get the biggest sweetest grin. I love you smile, you light up the whole room. I am so happy you are doing so good buddy. What a blessing you really are. I cant wait to see the person you become in time. I love you bug, keep up the good growing.

Meet Willy

This is my friend Willy Willy was given to me the day Kiernan was born. Back at the beginning of all my troubles during pregnancy i had asked for prayers from the ladies in my moms group. There was one person that hit close to my heart. All i knew was her name and email. We had started exchanging emails and she shared her story of what she had gone through in her pregnancies. We instantly became email buddies and I found myself anxious for the next one to come in. The first time we actually saw each other face to face was the day Kiernan was born. Her and her family came to visit me at the hospital. I was so touched that the whole family went out of there way to come see me. I finally had a face to go with who Wendy was, my friend i had been emailing for what seemed like forever. When you are only allowed to eat, sleep, play on the computer, and watch t.v. your days can go by really slow. She had this dog in her hand and gave him to me with a card. She told me that he was for me not the baby. The card explained that someone had given her a similar one while her little boy was in the NICU and that i should keep him with me everywhere i go until Kiernan comes home. The card was to explain what she couldn't since it is still an emotional thing for her to. I now understand how it is still emotional. I cant look at Kiernans pictures without tears. He gets his name from her little boy, he was the one that was in the hospital when she was given hers. Her sons name is William so i found it only fitting to name him Willy since William is the one that picked him out. I took willy with me everywhere. He slept on my bed with me every night until Kiernan came home. What a comfort he was. I had no idea how much he would become to mean to me. He still sleeps at my head on the bed every night, and some nights when i get a bit emotional i still hold him. It's a small reminder of how just one caring person that may not even really know you can impact your life just by paying it forward. Thank you to the person that did it for her, thank you Wendy for passing it on to me, and thank you God for giving me the chance recently to pay it forward to another mom standing in the shoes we both did at one time.

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