Here are some photos from Charlotte's surgery. Nothing can quite prepare you for seeing your child like this but I am thankful for those friends and online support group members who had either posted their pictures or talked me through some of the elements we were going to possibly run into. I wasn't completely knocked over with the shock of it all.
Here she is all dressed up and ready for surgery....*mother is breathing in and out repeatedly and talking a ton to keep from having a breakdown*
She was sooooooo s t i l l.
Honestly, the days are all kind of smashed together in my brain so I'm not able to explain which days are which from here on out....but the pics are mostly in chronological order.
Not awake yet but off the vent! She had oxygen for a while to keep her going. Every morning they did chest x-rays to see how things were looking and by the next day she was needing some help getting her lungs fully functional. High flow oxygen was ordered along with regular cpap treatments. The respiratory therapist likened it as a dog hanging his head out the window of a car careening down the highway. tongue out and mouth open. This air was humidified so her lungs wouldn't dry out so she basically bubbled her way through the next hours. It was between really funny and really sad watching her. Her little cheeks would just blow out continually like you'd just popped a balloon. Eating with all that going on was pretty futile, but thankfully it wasn't prolonged for days.
Here's one pictures of the c-pap treatment. This forced air was another helper in getting her lungs fully inflated.
She did run into a few little hiccups but not from the cardiac issues. On Saturday they did her 'discharge' echo and her cardiologist said everything looked great! We could've gone home on Saturday.
Our older kids might have a future in graffiti....
Here's a little data: during surgery they put in a couple of 'lines' to measure pressures from her heart. Don't ask me the nitty gritty details - I don't remember them. :/ One is an arterial line-put in the artery of her right arm. The other - a Central Line. This one goes into the jugular and has three lines that shoot off of it. VERY ODD LOOKING There were three ports so that they could administer meds and draw blood without extra pokes. GREAT except that two of her lines went bad so they had to pull it out a bit early.
She wound up with something going on at the arterial site. Her arm/hand looked very odd and they were keeping an eye on it from the time they took out the line. After a few days it was still cold, pale or blueish depending on the moment. No pulse at the wrist. (She still hasn't regained it.) After an ultrasound on her arm and a few consults with some vascular surgeons, it's basically been determined that she either had a blood clot at the site or damage to that artery. We spent the next few days getting visits every few hours from doctors and working on getting a Heparin dosage that would be good but not BAD. Heparin is a blood thinner. You have to dial that one in pretty close. They had to draw blood every 4 hours for a day then our cardiologist switched it to 6, bless his heart. She's classified as a 'hard stick' now. Meaning it's not easy to get a good poke. Sigh.... It happened that a few times that when they actually got in and were able to collect the blood needed for the test, as it was getting to the lab it would clot, rendering it useless. My one moment of being close to ticked off was one of these times. Through all that she now has only about 2 veins left that are usable. In her scalp. Ack. After a few days they'll come back but yeeeesh....
She's home now but her mother has to be a big girl and give her baby injections twice a day. Charlotte is being way more mature about it than I am. She is setting quite the example for her brother and sisters who would rather do anything (like math) than get a shot. :/ This means blood draws at the lab frequently and we may be watching her for a clotting disorder. I hope not.
We are still working on getting her pain under control. Hiccups are mean at certain times of the day...
It's felt like a blur and an exhausting race all in one. I am feeling really grateful to be home. My brain is still on 'scattered' time and I'm not sure it will settle down any time soon but the relief in having open heart surgery behind us is H.U.G.E.. Everyone in our family feels it.
Thank you all for your prayers, company, notes, food, chocolate and watching of our older kids during this escapade. We are amazed at the community of friends, the medical community and God's handiwork in this human body.
Fearfully and wonderfully made indeed....