Days after I had Jackson I decided to write everything down in a journal. I knew that everything was happening so fast and I wanted to be able to remember what exactly happened. I just started reading the journal I wrote in the other day and it brought back so many memories. Great memories. Some of them were sad and some of them brought me tears of joy. The little improvements Jackson was making and how excited we got for such little things like he pooped! :) I figure it's better to just re-write my journal to tell the rest of the story while we were in the hospital.
I was in the recovery room for 2 hours after I had you. It felt like a century. I wanted to see you so bad. They finally wheeled me to your room 3 hours after my c-section. I knew they were going to take you to the NICU but they told me that I would have time with you first. I tried to prepare myself for this but it was never what I thought it would be. None of this is. When I was a little girl and played house I thought about my perfect family. Then when I was married I thought about having babies and it being full of joy not sadness, fear and the unknown. They only let me see you for a few minutes and I don't really remember it with the medicine they gave me for my surgery. I slept for several hours which was ok since I couldn't see you anyway. I couldn't see you for 12 hours after the last time.
Around 3pm your Dr came in and told me they were puzzled by your situation so they sent pictures of you to a specialist in Cincinnati. Dr. Adams at Cincinnati Children's wanted you there as soon as possible. At 5pm they had an ambulance here from Cincy to take you there. Daddy and Mimi (Pete's mom) went with you. Grandma stayed with me. They brought you in to see me before you left. I couldn't really see you. You were hooked up to so many machines, wires, and tubes. I couldn't touch you because of the incubator. It was one thing that you were down the hall but to be an hour away, heartbreaking. I felt like they were taking you away from me. I just wanted to hold you, to be with you. They took my baby.
6/11/10
I convinced my Dr that I was well enough to leave. I couldn't spend one more night away from you. Grandma took me home to grab some things and we were off to Cincinnati. I finally got to see you, all of you. I touched you and my heart sunk. You were real, you were mine.
You were still hooked up to many wires. They had to give you another blood transfusion and you were hooked up to a C-pap machine to help you breathe. You had IVs in your head, belly button and arms. You had pulmonary hypertension and low glucose levels. Your liver and kidneys weren't working correctly either. All of those things are typical when you are born premature. Dr. Adams is your specialist for your condition with your legs. You have a syndrome called Klippel Trenaunay. They also call it capillary venous lymphatic malformations. Basically, it means that these systems didn't develop correctly in your lower extremities. The blood vessels are malformed and are full and close to the skin. This creates a dark birthmark looking area on your left leg, its called a port wine stain. Your lymphatic system can't properly re-absorb fluid in your body. They have a lady who specializes in compression wraps to help get that fluid back up your legs. Overgrowth can also be a part of KT. Your right foot is much larger than your left. This also affects your toes on both feet. The thing that was causing you the most problems when you were born were your 'blebs'. These are like blood blisters that are filled with blood and/or lymphatic fluid that can burst open without any notice or with the slightest irritation to the skins surface. You had quite a few large blebs on your legs when you were born that had burst open and were bleeding out in your amniotic fluid. This is how you lost so much of your blood and why you were in distress. You have some of these blebs under the skins surface as well. You will have to have compression wraps on 24 hrs a day. The only time they are removed are for baths and Dr apts no more than once a day and they are only off for a few minutes. There is no cure for this disease and they have no idea what causes it. Some researches think its a mutation of a gene but still they don't know what gene or how to detect it. When you are little older, 3 or 4 months, they will do an MRI to find out exactly what is going on with all the blood and lymph vessels. Until then, they are working on resolving the issues that are from you being premature and maintain what the can with the KT.
Your case of KT is not extremely severe. Daddy and I have looked up several things on the Internet and we are blessed that is isn't as bad as some others we've seen. This shouldn't stop you from doing many things in life. You are still our perfect little boy and you always will be.
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