Wyatt Turns One Today

Wyatt's nurse Susan today gave him his first birthday present. Then she played with in the Jumperoo! Finally Wyatt graduated from the Bumbo to the high chair as he joined us for his birthday dinner.




365 days later, 307 blog posts, 33,000 hits, 7 surgeries, 5 months in the hospital plus additional stays, two different hospitals = and a happy little baby... Wyatt James Koger.

Dear Wyatt,

This letter is for you. Today you turned one and I am so very proud of you. As I write this letter, one year ago today, you were born at 4am and it was a beautiful moment. You were silent and the doctors and nurses kept you healthy and were working so silently and efficiently to stabilize you. It was like an orchestra playing silently, everyone had their little job and did it very well. Then I was able to hold you, I looked you in the eyes and whispered to you "fight really hard, I love you so much." then I said a little prayer and let God look over you. I was having signs of preclampsia so I was placed on Magnesium and was not allowed to get out of bed. Your Daddy stayed by your side until I recovered. All of your grandparents were taking pictures of you and showing me. You were still on the oscillating vent and I was so happy about this. I remember thinking... thank goodness he does not need ECMO because then I know the defect is very severe. THEN, the doctor came in my hospital room to explain ECMO and asked me to sign the consent for "just in case." I had such a nervous feeling inside of me because I could not be with you. About 2am, Dr. Berkowitz came into my hospital room and sat on the bed. He informed me that they tried every medication possible to control your blood pressure and it was still uncontrollable so you were placed on ECMO about 1am. When you were placed on ECMO, you went into cardiac arrest. CPR was performed and your heart started to beat again. Dr. Berkowitz told me all of this BEFORE telling me that you were now stable. I think my entire life flashed in front of me when he said this, because I thought it was over. You were on ECMO for 13 days and everyday the doctors did a head ultrasound to check for head bleeds since you were on Heparin. Everyday, your head was fine and this made me so happy. It was like winning the lottery. After experimental trial off of ECMO two times, Dr. Abdullah and Dr. Chandler performed surgery. When surgery began, he came out of the operating room in his scrubs and very seriously told us that "babies on ECMO have a 50/50 chance of survival and that after surgery he will 1. remain on ECMO, 2. leave the cannula's in your neck 3. the most aggressive- take the cannula's out completely and you will never be able to go back on it again, since your carotid artery will be closed up completely for the rest of your life (you need to eat healthy!!). When I saw the ECMO machine roll down the hallway, four hours later my heart sank... what happened?? I sat in the waiting room completely still for four hours praying the rosary and begging to GOD to let you live. The surgeon came out of the operating room and informed us that surgery was fine, but you still have a 50/50 chance of survival for the next 48 hours and then it is a 75 percent chance. I was on pins and needles for the next 2 days. The cannulas were completely removed from your neck, the most aggressive move. The night of surgery was the roughest night you ever had in your life. Your organs could not fit back in your abdomen, so a silo (bag of organs- spleen and liver) were in a plastic bag resting upon your belly. You were bleeding at midnight, your stats were very unstable. Your hemoglobin was down to 8 or maybe less. Dr. Abdullah and Dr. Chandler did not leave your bedside and allowed us to stay with Wyatt when normally he said they would ask the parents to wait in the hallway. Dr. Abdullah picked up the silo and soaked up all your blood like you would spilled milk with a sponge. Dr. Chandler placed a chest tube in your chest. Watching her do this was cool... she was totally in her element. The room was silent and everyone was doing their job... just like when I delivered you. Then Dr. Abdullah took us out in the hallway of the PICU at Hopkins and said that their is an drug used on the soliders in IRAQ to clot blood immediately called Factor 7 and it's very expensive, insurance may not covered it, but it may save your life. Who cares about money!! We said absolutely order it for him. It was like watching ER on TV, watching the doctors figure out the dosage of the drug and to discuss if you should get it or not. It was administered in the middle of the night. The surgeons finally went home in the wee hours of the morning even though they had a full day of patients the next day. All of these things combined saved your life that night and we are so grateful. A week later, Dr. Lau placed your silo in your abdomen and things started to look up... until devastating news... you had a head bleed. First it was minor- an IVH grade 1, no big deal... and the attending on call said it was the "least of her worries." I pressed on for weekly sonograms and the bleed progressed to the worse- IVH grade 4 with a bleed to the right temporal lobe. You were sedated, so who knows the damaged this caused. I was so scared and mad because you could not get a break- ECMO, Cardiac Arrest, Silo, Head Bleed. Your head bleed did not seem to be a concern to people, but I made sure it was the center of attention and because of routine scans, Dr. Carson (one of the best pediatric brain surgeons in the world) noticed you were developing hydrocephalus and needed a shunt. I was scared and mad again, thinking "why isn't my little angel getting a break?" On Halloween, you were moved from the PICU to the NICU. In the NICU after extubation, we noticed you did not have a voice. You were completely silent, making those silent cries. Something was wrong, but what?? The ENT did a scope of your vocal cords and saw that the one vocal cord was paralyzed. Again, I was scared and mad... what will the future be like for you? Will you be silent for the rest of your life? Then one day when we were home one evening, we got a call from Hopkins saying that you had a seizure and you were now on phenobarbital (?). I felt like a huge weight on top of me. Why is this happening to you? You are so tiny and fragile and I read about so many other CDH babies without all of these issues. The medication made you sleep all the time and I did not like it because it was hindering your development. You were drinking from the bottle- 20ml. until the swallow study which showed that you aspirated and all bottle feeds had to be stopped....however, I kept pumping and also trying to breast feed you so that you would still get that human touch. The doctor informed me that you would probably have to get a g-tube. I remember thinking, what the heck is a g-tube?? Boy have I learned a lot in the past year! You were then sent to Mt. Washington, a small rehab hospital that Hopkins owns. Over the next couple of months you reherniated three times, had a g-tube inserted, and a vp shunt. The day you came home, your Daddy and I cried of joy. Wyatt, you defied the odds over the past year... you battled so many obstacles and won. You have changed my life completely and showed me the real meaning. You have brought the good out of people, have brought family together, showed me who my real friends are, and allowed me to love my life. Before you and Chloe were born, I thought what is really my purpose? I was a leader in high school and in college, involved in 4-H, public speaking, rode horses, participated in the county and state fairs, camp director, resident assistant, hall director, and loved my job as a science teacher... but NOW I know my real purpose and I feel complete in doing my job... being a mom to you and spreading the news/educating people about CDH. When I first found out I was pregnant with you and about your defect, the doctors gave me an option to abort. That NEVER crossed my mind and I would not imagine my life without you in it. It was simply not an option to us. Your sister Chloe, so young when you were born, just turned 14 months old has also been a hero in all of this. She is like a bouncy ball and enjoys life... you would never know all the times we could not be with her because she was loved my all her caretakers...grandparents, Lori, and friends/family. She knew all about you and said "Wha Wha" even though she did not meet you until you were 5 months old. Wyatt, you are a little miracle, you are Gods gift. In the words of Dr. Carson- God is Good! Thank you Wyatt for being my son and turning one today!

Love,
Your mommy

We want to thank so many people over the past year and I have so many thank you notes to send out-

Thank you to my parents for giving up their entire life for our son and daughter.
Thank you to Benji's parents for your support.
Thank you to my sister for creating this blog and your love and support.
Thank you to Joe and Maria for organizing the benefit and giving so much of your time.
Thank you to Amy for all those dinners plus so many family and friends that made meals for us.
Thank you to all those that donated funds towards Wyatt's medical needs. All funds go directly to Wyatt and in a special medical need bank account.
Thank you to everyone for your consistent support and prayers.
Thank you to all the CDH families that have babies just like Wyatt and whom I learn so much from... especially Vicki Jensen.
Most importantly... thank you doctors and nurses... espeically Nicole Chandler who not only saved Wyatt's life (BIG responsiblity!) but also became a special friend to our family. Thank you Dr. Abdullah, Dr. Lau, Dr. Columbani for handling my son as if he was yours. Hopkins is truly a wonderful place that not only puts my son first but also value's the parents.

Wyatt feel asleep early tonight so he did not get a chance to eat cake. He still has his cold and his o2 requirement has increased... so we may be asking the doctor for a chest x-ray. I am so afraid of aspiration pneumonia.

Otherwise... Happy First Birthday Wyatt. You are so loved!!!!!!!

Thank you for the birthday wishes fellow bloggers and friends-
Check out Jack's Blog, Owain's Blog, Drew's Blog, and Lori's Blog.