The other day, my cousin's wife sent me a message on Facebook about their son. My cousin's wife is a PICU nurse in Texas so I have relied heavily on her words and wisdom as we have been dealing with Claire's TOF and prematurity. She's been an awesome help to us!!! Anyways, back to the story. Her son had been playing and was using his digital camera to "examine" his doll's heart. He then announced to his mom that his doll's heart had some extra pieces that needed to be fixed. She said she thought he was thinking of Claire. I thought that it was so sweet that he was learning about Claire. It also made me look at Claire's heart defect in a totally new light. There's nothing wrong with Claire's heart - she just has a few extra pieces that need to be fixed. If he could figure that out, why couldn't I?
Well the date that these extra pieces will be fixed has been set. Claire's open heart surgery will take place at Duke on February 23rd. We have known this day was coming since August when we found out that she had TOF. But now that it is actually on the calendar, I am starting to get scared.
Along the way we have heard so many different milestones that we thought Claire would have to meet before the surgery like being 4-6 months old, weighing around 5000 grams (or 11 lbs), etc. But the surgeon is ready to operate and he is sure Claire is ready now. Mom and I spent about an hour with the surgeon yesterday while he taught us and explained in good detail every step of the surgery process. I will have to say I was very overwhelmed and don't remember everything he said. But I will try to remember the highlights (good and bad) and describe here.
We will be taking Claire in on Tuesday for her pre-op stuff like labs, x-rays, and a liver ultrasound. Then we will take her back sometime Wednesday morning for her surgery and it will last into the afternoon. I didn't ask how many hours exactly it would be, but I have heard about 5 hours in the past. So it will be a long day. They will put Claire to sleep and put in a ventilator to breathe for her. They will stop her heart and put her on a pump that will pump her blood through her body for her. They will cut through her breast bone to get to her heart.
Then they will take a piece of cow skin (I think skin) and use that as a patch for the hole between her ventricles. They have to be very careful how they stitch this because they can't do it too tight or it will pull out. They can't do it too loose or it will leak. They can't go too deep into her heart because they could hit the electrical system in her heart that controls the synchronizing of the beating. If that happens, they will have to put in a pacemaker.
Once the hole is patched they will move onto the pulmonary artery. He described this part in 3 sections. You have one section of this artery that is attached to your heart and is made of muscle. This part is what could have extra muscle tissue that restricts blood flow from going into the artery. Depending on it's size, they will possibly have to slice it open and insert a patch to open it up. They can also go in and "core out" some of the muscle. He described this part like a donut. It's kind of thick since made of muscle. So they can kind of cut some of that thickness out if they need too and open up that hole.
The next part would be the part that goes to your lungs. It's on the opposite end of the artery than the donut part. It's a thin wall so there's no coring this one out. If it's too small, they will slice it open and insert a patch here too. So like if you have a paper towel roll and the hole inside was too small, you would slice it the long way and open it up and then put a patch on it to keep it wider. It's hard to explain here.
The trickiest part of the artery is the valve portion. This is located in the middle of the artery between the heart end and the lung end. There are "curtains" that open and close each time your heart pumps. The blood flows through the curtains and then the curtains close so that the blood doesn't go back into the heart. They may have to cut the curtains down some if they are too close together since they really can't open up this part because it would leave a space with no curtain. This is where leaks can happen if they curtains are not fixed properly.
A lot of this is a judgement call once they get in to Claire's heart. I asked what her valve looked like from the echo cardiogram. He explained that they use a standard deviation from zero to say how small her valve is. So zero would be the perfect size. Claire's valve is a -1. So she is one step away from the perfect/normal size valve. He said he would be concerned if it was like -6 or -7. I also asked how her right aortic arch would affect anything. The surgeon said he actually preferred her to have it! He said the way the aorta and the pulmonary artery wraps around each other, it makes it more difficult to do the heart surgery. So with Claire's being backwards, it makes it easier to do the surgery.
So once they get all of that done, they start her heart back beating sew her up (I think) and do an echo cardiogram to see if every thing isworking like it should. If so, then she's done. If not, then they go back in and fix it right then. Claire will be on the breathing tube for a few days then weaned off. She will also have draining tubes from around her heart and draining out of her chest to get any accumulation of fluid out. Once the fluid stops, the tubes will be removed. She will go straight to the PCICU (Pediatric Cardiac Intensive Care Unit). Duke has just built this specialty unit for pediatric cardiac patients. So it will not be the NICU where she was, but just like that only for heart patients. Once she is ok and after a few days, she will hopefully then be moved to a regular hospital room on the pediatric floor. This will be nice because I can stay with her 24 hours a day and spend the night and I think she'll have a bathroom and TV and stuff. I think.
There are lots of risks involved with this surgery. Number 1 it's open heart surgery. What more can I say? There's risk of death, infection, and stroke to name a few. I asked the surgeon if he had ever lost a baby with this surgery and he said he had lost one baby in his first year of doing the surgeries. The baby didn't die because of his TOF or the surgery, but he had something really wrong with his brain and that is what caused the complications. I asked if he thought Claire's liver issues would cause any concern. He said no.
There is a possibility when Claire gets older that she would have to have the whole valve replaced. But they won't be able to know this until she's in her late teens or early 20's. It just depends on how her heart grows and if the valve begins to leak or becomes too small again for normal heart function.
So we have to keep Claire well and away from germs!!!! If she got sick they would have to reschedule the surgery. And this surgeon is going out of the country a week after Claire's surgery, so we don't want to reschedule.
Please, please, please start your prayer chains now for her. I am already losing my hair due to some post pregnancy hormone mess, so I will probably really be bald after the surgery from twisting my hair. Oh well!
We know that Claire already has a team of nurses and doctors up there that will be looking out for her and us. We will be with a whole new team of nurses in the PCICU and if they are anything like the ICN nurses, we will be ok.
I think that is all I can remember about the surgery. I know the surgeon told us a lot more. I caught myself in shut down mode and tried several times to snap out of it. So I caught bits and pieces. (My shut down mode is when I hear something bad or scary I stop and dwell on that bit of info and tune out the rest. That's why we write down everything b/c I can't remember.)
This surgeon is not the original one we met with in September, but I think they will both be there. This surgeon has been doing these repairs since 1995 and seems very knowledgeable and nice. I really liked him and his personality!
On another note, we got to see Nurse Marie, Eliza's mom, and a few of Claire's other NICU doctors and cardiologists. We are hoping Eliza went to camp today. That was the plan! Eliza gave Claire the greatest book yesterday called "Who Loves Claire?" It goes through and on each page it asks "Who loves Claire?" Then it says mommy and daddy love Claire, Eliza loves Claire, nurse Marie loves Claire, nurse Susannah loves Claire, Doctor Rachel loves Claire, and all of Claire's Duke friends love Claire! It has other stuff like how much each of them love Claire - as big as the ocean, as much as the stars in the sky, etc. It's so NEAT! It even has a message to Claire from Eliza, her "very first BFF." So we are hoping that they are at home RIGHT NOW!!
We also did the interview for the MIX 101.5 radiothon yesterday. I was a nervous wreck. I hate talking in front of people. I know no one could really see me, but lots of people could hear me. Claire was sleeping beautifully until they said it was our turn, then she got hungry and mad so my mom had to carry her away. Thinking back now I should have put the microphone up to her mouth and let her cry on the radio and said that she was unhappy because the phones were not ringing! Oh well. There's always next year... Claire did make out and got a cute pink stuffed teddy bear for participating! Claire also got to spend time with her aunts and uncles yesterday too. It was a good but very long day.
So please keep Claire and the doctors in your prayers in the coming days. Once she gets those extra pieces fixed there will be no stopping her!
The Scott Family