Surgery Pictures

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.

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.

12 Days After OHS...

Claire has decided she's ready for tummy time!  She doesn't roll off her belly very well, so I only let her stay on her tummy for short periods, but she loves not being stuck on her back all the time.

Sorry for the long absence, the 2 days in the PICU with NO sleep took longer to get over than I thought they would.  Clarie is doing fabulous.  She's got a ton more energy (which mean shorter naps...) but she is also eating better.  She can finish a bottle much faster, and is usually eating more and more frequently.  Her incision is healing beautifully and we'll be be ready to head to the pool to check out the splash park soon.

We had a cardio follow up and echo on Thursday and the Dr said her repair looked beautiful.  Right after surgery they thought they saw a very small VSD, but on last week's echo they couldn't see it at all.  So, either it was never there to begin with, or else it already healed closed.  Claire is still on O2 while she sleeps, but I'm hoping her levels are better at her check up next week and we can get rid of the extra tubes!

I loved spending last week with Claire, but am ready to get back into the office for a couple of days this week.  I'm not so good at this working from home thing....

My Amazing Baby!

Yesterday, 72 hours after having open heart surgery, Claire was released from the hospital!  Her recovery has been absolutely amazing, and we are so happy to be HOME!!

Today, we went to church, took a super long nap and are just so thankful to being hanging out with our girl at home.  I have lots of pictures to get posted, but tonight will be spent snuggling on the couch.

Thank you again for all of your prayers and support.  I truly believe you all lifting Claire up is what has allowed us to be home so soon after such a major surgery.  God is so good!

Wire Free and Holding My Baby!

Claire is now wire free!  The chest tube, IV, and O2 were all removed this morning.  Her O2 dips a little while she's sleeping, but not enough that they are worrying about it.  We are moving to the Peds floor (hopefully sometime) this morning.  They've been working on the move for about two hours now and not much has been accomplished, so it's hard to say when we'll actually get to the new room.

The best part of the day, by far, is being able to hold my girl again!  I'm a little nervous moving her around, but once we get settled in the chair it's just wonderful.  She's doing so well it sounds like we may be going home on Sunday!  God is so good!

Sorry for the short update, but it's my turn to hold Claire again. :)

Off the Vent and Eating

Claire is a ROCKSTAR!  I knew she would do great, but she is doing even better today than I imagined.

Claire was extubated around 2am.  She had a couple of spells overnight where she was fighting the vent and getting really agitated.  The pain meds were only lasting about an hour and she was breathing above the vent well, so they took it out.  Within a couple of hours she was looking for a bottle.  We held off on feeding her until the surgeons came to check on her this morning.  Everything looked great and they said she could eat whatever she wanted.  Daddy is feeding her the second small bottle of the morning right now.

The doctors also took out her catheter and arterial line.  Claire is her usual wiggly self and she managed to dislodge the IV in her foot.  They are going to try (for the second time) to get an IV so they can take out the line in her neck.  Once the neck line and the chest tube are out (probably tomorrow morning) she'll be able to move to the Peds floor.

Thank you so much for the comments, emails and prayers!  We appreciate them so much, and love you all!

Claire is doing great!

Claire is settled in her room and is doing great!  All her vitals are perfect.  She is starting to wake up and we hope she'll be off the vent soon.  The vent been turned down twice, and she has been breathing some on her own.

Sorry for the short update!