Wednesday, January 26, 2011

Whole Heart Birthday

What is that, you might ask? Well, it is the celebration of the day that Kai had his heart repaired. Kai was born with a heart defect called an AV Canal. It is the most common heart defect found in children with Down syndrome, and is almost found exclusively in said children. He also had a Coarctation of the Aorta, but they werent real sure about that one until they fixed the first and ligated his PDA(another small heart issue).

Today marks the 2nd Birthday for Kai's heart. We are very fortunate that it was fully repaired on the first surgery, especially since he was only 10 weeks old and weighed in at 8lbs. He went into heart failure much sooner than to be expected, so rather than string him along trying to get his weight up, they did the surgery while he was small yet relatively healthy. It was all very unexpected. We went into the hospital because he was having some 'grey' spells. It was our second visit in 2 weeks. We had just spent 6 days at Texas Children's on the 15th floor just 8 days ago...and here we were back again. The next morning the doctors told me that Kai would have his heart surgery before we would be released from the hospital again, so within the next 2 weeks. A couple days later they came and told me his surgery would be the next week, probably Wednesday. Saturday night they came and told me his surgery would be first thing Monday morning...

But...there were so many things I still had to do. I was supposed to get pictures of him made. I had not had any professional pictures of him yet, and I wanted some before they hacked into his chest and scarred him all up. I had not had enough time with him yet. I hadnt read the books I wanted to read to him yet. I hadnt taken him to the places I wanted him to see yet. I hadnt told him 'I love you' enough times for him to know and remember that just in case. We didnt even know each other yet. What if? What if...

To this day I cannot finish that last statement. It is as if saying it will somehow cause it to happen, and I dont think I can even let my mind go there. I was so scared the night before. How do you squeeze in a lifetime of memories into one night? I dont know, but I tried my best...just in case. I stayed up all night. I held him all night. The closer it got to 7AM, the more I watched the clock, the louder the ticking became...every time someone walked by our room I tensed up because I was sure they were coming to take him and I was sure I would make a scene. Then it became clear and logical to me. All I had to do was remove his IVs, his NG tube, pulse ox, yadda yadda, pick him up and just walk out of the hospital with him. I would get in the car, drive him home, put him in his bed next to ours and we would go to sleep and not have to worry about all of this. Ironically enough, these were the true thoughts that went through my head, and they sounded absolutely logical to me at the time. Fortunately somewhere deep down inside I knew that was not in his best I sat and waited. I kept replaying in my mind the scene. Some large burly nurse would come in and take him from my arms and leave the room and I would be left alone in his room with all his things, all alone.

Surprisingly that is not how it went. We got to go with him to the pre-op area. We all rolled his big metal crib to the 18th floor or 20th, I cant remember, and went into the pre-op area to meet the surgeon. He was a very nice man. I had already been told that Dr H was the surgeon to have and that became apparent within minutes of meeting him. He told us he would treat Kai as if he were his own son, and I believed him. I dont know if he meant it or not, but I dont think even the best actor can get around a Mommy's BS radar when it comes to her children. They did all the pre-op stats and checked him over. Then the time came.

I dont remember how many of them there were. I think 3, maybe 4, pushing and pulling the big metal crib. Daddy and I walked out behind them into the hallway. We went down the hallway and took a right. Then the time came. A hallway on the left approached us. It said something to the effect of Hospital Staff only. I knew it was time. I still can not get through this part of the story without crying. The tears are already there even though I can hear him sleeping in his crib over the monitor...but it will probably be the most vivid memory of my son ever. It is the epitome of raw emotion that a parent feels for a child. And I am sorry if you arent a parent because you really really wont get this until you become one. The hallway came. Daddy and I stopped and the 'team' made a left. We watched them as the walked down to a double set of doors to what I can only guess to be the OR. Right before they got to those double doors to turn into them, Kai started frantically looking around. Left, right...and then he literally flipped his head upside down and behind him to find us. He made eye contact with me just before they turned the corner. I have never felt such anguish in my life. If Daddy had not been there to catch me I would have fallen to the ground. I collapsed into a heap on him and I sobbed. They just wheeled my life away from me in a big metal crib and that last frantic effort for him to see his mommy could very well be the last memory I have of my little boy. The pain I felt at that moment was and still is indescribable.

We went to the waiting room on the 18th floor, I think it was. We were the first ones in there. It was huge. It had several areas of chairs and couches and recliners, a whole area past that that was a kitchen with more tables and chairs to eat at, a full kitchen, food in it. Beyond that were showers and restrooms. Other families started coming in. We were all there for the same reason. This waiting room was just for families whose children were having heart surgery. We didnt talk and socialize much, but we gave each other knowing glances and timid smiles. Periodically they would come in and call a families name. They would take you into a private room and give you an update. These updates were lifelines...breadcrumbs. You would get one, come out all smiles and then just sit and wait for the next one. The waiting room was pretty full. As the day wore on families were called and then actually taken to see their child. How great that was to see. Except it was family after family...but we were the first ones in at 8AM. Why is it after 6PM and here we still sit? Was something wrong? Are they not telling us something? Its been a long time since we got the magic call to a private room for an update...finally someone comes. A Resident or Fellow or something...he tells us that the major issue was repaired, the AV Canal and the PDA, but they had to warm him up, take him off the heart/lung machine, restart his heart and then measure the aorta for the coarctation. There was one. It wasnt a bad one, but enough that the surgeon felt it should be repaired now rather than risk surgery again down the road. So the Resident/Fellow person proceeded to tell us that they then had to re cool the body down to whomp whomp whomp, whomp whomp whomp, yeah...because that is all I heard after re cooling his body to some ungodly cold number. It was in Celsius, so I cant be exact. The look on our faces must have been enough for Dr Fellow to realize he had divulged a little TMI. So, like a prom dress, he was off...

Finally, finally at like 8PM or something, Dr H, the surgeon came down to speak to us. The relief that washed over me followed quickly with panic. Was he supposed to come talk to us? Did something happen? But no, it was all OK. He just explained what he had done and that Kai had pulled through like a champ. We were ecstatic and relieved. It would still be an hour or so before we could see him though. They had to get him moved to CVICU and stabilized. That was OK. As long as my Bear was OK, I was OK. Finally, at 10PM, we got the OK to go and see him. I was so scared again. I was afraid he would be swollen and battered. He wasnt. He was still my Bear, just with some accessories. I could see past all of that and just see my little boy. The incision and scar I was so worried about I didnt even notice. I just wanted to look at his beautiful face. Its the first time I saw him not breathing 60 or more times a minute. His lips were so pink. He looked amazing. At that moment I really knew what we were dealing with. This boy was going to be a fighter. And he didnt prove me wrong. We went home 8 days after surgery. He did have Croup that was somehow missed prior to surgery, thankfully it didnt hinder his recovery too much.

And from that day forward he has been marching the beat of his own drum. He does what he wants and how he wants, regardless of what the Drs said in the past and say today. He will be delayed, he wont grow well, he wont eat well, he will have deafness, he will be sick a lot...he will, he will, he will.

I will tell you what he WILL be...he WILL be anything that he wants, because that is what I expect of him. And by that, he will expect it of himself. He will still have his hardships and some delays, but he will achieve anything he wants with a lot of hard work, but that's OK, because the things in life that you are most proud of are the things that you really work hard and fight for...which is why he is the thing in my life I am most proud of...

Happy Whole Heart Birthday Bear!

That is all.


  1. Julie- that made me all teary eyed. I remember it all so vividly as well. It was definitely the scariest day of my life, but also one of the best. I remember when the surgeon came out and I should have known not to read his expression as he had no personality at all(which was ok, because he was great,) but I did and feared the worst because you would of thought something bad had happened. Anyways, I am enjoying reading your blog, Kai is one lucky boy to have you as his mom, and I know I don't have to say this, but you are also very lucky to have him!

  2. thank you for sharing your story...we are facing the surgery in June 2011. I am soo scared...I was crying reading your story...because I know that will be me also.

  3. Thank you for sharing your story, I cried through most of it... We are facing the same surgery on our little Ellie Mae in June 2011. She has complete AV canal defect and down syndrome. I am soo scared of this is so massive...and have every prayer chain in the entire world praying for her. I know I will be just like you were when they come to "take her away" for the surgery...Any advice about the surgery/hospital/post hospital experience you would like to share would be welcome...I think the fear of "what if" and the unknown is what is worrying me soo much...thank you also for the picture of your little guy after the surgery...