Whew! Darren spent the weekend at the farm with his parents and after spending all weekend with Claire with no help, I need a break. So I'm finally going to get surgery pictures posted while he's feeding her the last bottle of the night. There isn't really anything graphic about the pictures, but there is a very small person surrounded by lots of wires and equipment. ETA: It's now 2 1/2 days later and I'm finally finding time to finish this post...
Day 0: Pre-Op
A little daddy time as we hung out in the RMH the night before the surgery. We had a wonderful dinner at Red Lobster, gave Claire a bath, finishing with her antiseptic wipes, then settled in for a good night's sleep.
Day 1: Surgery Day
When we first go to see Claire, right after the surgery, her room was FILLED with people. We had the largest room, right across from the nurses station, and it was pretty crowded. There were probably 10-15 nurses and doctors getting her settled and all her equipment set up. We got to see her for just a minute before we were asked to leave so they could finish. After about an hour we were let back in and stayed with her from there on out. Claire had 2 nurses that were assigned to just her for the rest of the day shift and the overnight shift.
Don't you love the bow?!? It was already in her hair when we got to see her for the first time and I loved it! The patches on her forehead were to measure her O2 in her brain. On her right arm is blood pressure cuff as her arterial line (in her left wrist) wasn't working right. They were able to pull blood from it, but it wouldn't read her BP like it should have. Her catheter bag is on her left leg and the tube across her middle running down is her chest tube. She also has an access line in her neck, but you can't really see it because the vent tube is in the way.
I was really surprised that this was pretty much all the equipment that they used for her. After seeing others surgery pictures I was expecting MUCH more. She had just 2 IV poles, with many attachments, and the monitor over her head that was watching vitals. In the middle of the picture, on the right side, you can see Claire's angel watching over her.
This was a gift from her surgeon and it stayed by her bed always!
Day 2: Off The Vent and Eating
Claire got off the vent about 2am, about 12 hours after getting out of surgery. They had turned down the settings throughout the night and she was breathing over the vent well. She'd had a couple of episodes where she woke up and became very agitated until they were able to get pain meds in her. Since she was so feisty the vent was removed and she didn't have any problems at all. By morning she was looking for food and very happy to get a bottle. We started her off slowly, but she was up to eating about 3oz a feeding just a few hours later.
We had to turn her poor little hands into clubs as my monkey child loves to grab and cling to anything within reach. Unfortunately the lines in her neck, and her vent before they removed it, were most often what she grabbed on to. I felt bad for her wrists as her hands must have been heavy!
The bow from right after surgery kept falling out so we went with the whale tail on the top of her head instead!
Day 3: Holding My Girl and Moved to the Peds Floor
New day, new hair ribbon! The chest tube was removed less than 48 hours after she came out of surgery and that meant we were finally able to hold her. I don't think she was in her bed much that day as she got (carefully!!) passed from arm to arm.
New day, new hair ribbon! The chest tube was removed less than 48 hours after she came out of surgery and that meant we were finally able to hold her. I don't think she was in her bed much that day as she got (carefully!!) passed from arm to arm.
This is her new bed on the Peds floor. When she was napping we had a modified swaddle blanket around her middle and it seemed to help her sleep. We also had to keep a blanket tucked under her butt as she kept sliding down the incline. The baby legs worked wonderfully (thanks for all your advice!) and I loved that I was able to find some with hearts.
This blanket was a gift from the the volunteers who are always making things for the kiddos who are in the hospital. I love the color of it and it is so soft. Claire appreciated the fact that she could hang on to it even when her arms were covered up!
Day 4: Going Home
72 hours after coming out of OHS our little super star was released from the hospital. She was sent home on O2 to use at night and this is us (impatiently) waiting for the O2 people to bring us a bottle for the ride home.
I know not every one's surgery experience is as quick and easy as ours was, but I was just amazed by how quickly she healed and bounced back. It was hard seeing her covered in wires and tubes, but they disappeared so fast that I think one of the hardest parts for me were the blood draws. On the day we were released it took HOURS for them to get enough blood to check her potassium. They needed to give her potassium the day before, and they wouldn't let us leave until they could check her levels. And these weren't the lab people trying. I wouldn't even let them near her. These were the most experienced Peds, PICU and NICU nurses. There were probably 4-5 groups of people that tried over 3 hours before they got what the needed. Claire and I both shed lots of tears during this process!
We were awfully careful with how we moved Claire for the next couple of weeks. She was never picked up under the arms, and when we laid her on the floor I put blankets around her so she wouldn't roll and hurt herself. She started rolling to her side right after we got home, but I made her wait a bit before going all the way to her belly.
Tomorrow will be 3 weeks since her surgery, and except for her scar (which is beautiful!) you wouldn't even be able to tell she had surgery.
so incredible that 3 weeks later, except for the scar, you would never know she had open heart surgery - what a rock star :)
ReplyDeletemy daughter addison (5 months) also had heart surgery back in may. i too was amazed at how fast she went from covered in tubes to nothing once again. i am jealous that you get to put her on O2 only at night- we have to keep her on it 24 hours a day still, and it is such a pain! anyway, just found your blog and wanted to drop a comment. your daughter is sooo beautiful! love the hair! (-:
ReplyDeleteyou know its difficult for me to see beautiful claire with all those tubes and such, so I could imagine how it was for you. You are such a good mamma, and she is one lucky little girl. I love the leggings. I want to put Grady in leggins but Paul just doesn't go for it.
ReplyDeleteSo glad she is doing better and recovering so quickly. Amen!
Wow, your baby girl ROCKS! Those baby legs are perfect :-) Isn't it amazing how fast they heal? Thanks for sharing her story and all those awesome pics. I remember when I saw my sweetie after surgery. I started crying and the nurses tried to console me, but I said no, these are happy tears because we are on the OTHER side of OHS!
ReplyDeleteThanks for posting the pics! I was so glad that I took pictures of Julian when he had his heart surgery. It's nice that I have something for him to look back on.
ReplyDeleteGreat photos, and so happy all went well. Claire is getting so big!!
ReplyDeleteI am so glad she is doing well, what a trooper. Our kiddos are most certainly full of magic!
ReplyDeleteMy favorite part ...the gift from her surgeon.How incredibly sweet is that?
ReplyDeleteThese children never cease to amaze me.their resiliency and fight,rivals no other.
Our surgery experience,or rather Zoey's,seeing it was her precious chest being cracked open,was not as short as some and certainly not as long.Despite some complications,she was still out in 7 days from her AV repair.Astounding really.
I love the bows... one day I walked in and Zoey's nurse had her in pig-tails .. all passed out but cute as could be.
Have a safe and wonderful 4th!
Wow, it must have been difficult to see Claire with all those wires. I was getting teary just looking at the pics. I am so glad that she was in and out quickly and is doing so well now. She is so precious, what a little beauty.
ReplyDelete