Love For Clara

For: Clara Henderson and her Family
Organizer: Amber Johnson and Rebekah Little
of $50,000 goal.
Raised by 139 donors
51% Complete
This fundraiser is closed. Thank you for your support!

The Story

This is a series of messages narrating her birth, surgery and progress.

These were shared by Dustin and Sandi Hendersin, in their own words. 

Clara was born at 1243, 6 lbs 8.1 ounces and a bit over 18 inches.

We are on our way to Children's. The fluid around her heart is still causing some concern and the doctors want Clara brought over just in case. She will be in the CICU for the foreseeable future.

The surgical team is assessing her over the afternoon to determine which procedure to get going with, we will hopefully know their plan this afternoon.

I just finished talking with the chief cardiac surgeon and we have been informed that the problems with her valves are such that we will be bypassing the balloon catheter. The surgical and cath teams went over her echo this morning and decided that her tricuspid valve will not self correct after the stenosis is cleared due to one if the valve leaflets not being able to move properly due to attachments to the ventricle wall. Because of this we are sending Clara in for open heart surgery at 1pm tomorrow. They are going to repair her tricuspid valve and open the stenosis at the same time as well as close the duct they have been keeping open with medications. She will be in surgery for about 4 hours and in recovery for about an hour to confirm the surgery was successful. There is a slight chance that they won't be able to repair her tricuspid or that the repair do what is needed to correct
the blood flow and they will need to perform another surgery to bypass the right ventricle with a stint directly to the pulmonary arteries to keep blood flowing to her lungs. After her surgeries we have been told to expect a 2-3 week stay in Seattle.
Sandi is progressing really well toward being able to leave UW and come to Children's to spend time with Clara before her surgery. If she isn't able to leave tonight it sounds like Children's will make sure Sandi is still able to be here before surgery. We are looking forward to having all three of us in the same room. This definitely was not in our after birth plan but we are happy she is here.

Clara just went into surgery. She has had a very calm morning-last night she was somewhat restless, so it was very nice to see her calm and resting. Watching her struggle with breathing, and being physically uncomfortable because of all the sticks, pokes, tubes.. It has been hard. She is getting a rest tonight, and our hopes are that she will come out of surgery and be able to learn how to use her body as a functioning unit.

We've received 2 updates during Clara's surgery, both about an hour after that "she's gone in" text. The first, that they were starting, the second that she was on bypass and it was going well. That was maybe 2.5-3 hours ago. They said the next update we will receive will be when she is off bypass. There is a chance that she may still go back on before the Sx is over. I just don't want to have to send "oh wait, just kidding" messages. But right now she is still within the "at least this long" time frame that they said the surgery would take.

We have had a calm, actually pretty stress free wait. We came back to the house, had lunch, listened to music, danced in our room...

Baby Clara is all done, actually been off bypass for about 3 hours now! Clara actually had the Chief of surgery come perform her operation. It sounds like it was far more intricate than anticipated. Lots of removing leaflets, reattaching, stitching-it sounded like a big craft project. But she is done! And doing well. She exceeded all of the "after" results & stats expectations that they monitor.

The more technical explanation of Clara's surgery:
There were problems with not one, but two of the three leaflets of her tricuspid valve. One had so many extra chordae tendineae (attachments that connect the valve to small muscles that make sure the valves open and close properly) that it was held permanently open and the other had longer muscular attachments that were allowing it to balloon into the atrium. Dr. Chen released and added some extensions to the first leaflet, tightened the musculature on the other and stitched the edges of the two together at one point so they had more limited mobility but also resolved the majority of the regurgitation.
The pulmonary valve was fused and narrowed as well as having fibrous attachments where there should have been none. They removed the attachments and opened the valve to relieve the pressure her right ventricle had to overcome.
The Patent Duct that had been kept open by medication has been removed.
The very first heart question that was raised and looked at by Dr. Clark (perinatologist) and then Dr. Hardy (pediatric cardiologist) in Missoula was looked at again and they decide that the foramen ovale (hole that connects the right and left atria before birth) was large and oddly shaped. They closed up about 50% of the hole for a "pop-off" so that any blood forced back through the tricuspid can enter circulation through the left side of her heart and allow the right ventricle to start to relax. If the hole doesn't close on its own over the next few days it is in a location that can be easily closed by a plug in the cath lab. We have been told to expect a lower blood oxygenation over the next few days due to a combination of larger right ventricle/slight regurgitation through the tricuspid/"pop-off" foramen allowing some mixing of de-oxygenated sand oxygenated blood in the left heart
until the right ventricle relaxes and the "pop-off" is closed. The regurgitation should also lessen as her right ventricle relaxes and works at a more normal strength. 

Clara is still intubated, and her chest is still open as well-both things we were told to expect. Her chest is still open to allow for surgical swelling to subside and also to allow her lungs some good room to expand as they've been living a rather cramped existence over the last few days. "When will they close" has the same stock answer we've used so many times over the last several months-it will depend on her. :) but most likely the beginning of next week. After that, they will slowly start to wake her a bit before removing the breathing tube. After that, it will be general "catching up"-eating, more healing, being a baby, etc. 😄

They have drained quite a bit of fluid from her abdomen (about 90 ml) and are starting another fluid drip with the hope that it will stay in her vessels and lower her need for blood pressure meds as well as stimulate her kidneys. No news yet on the surgery front. Still praying and waiting.

Today could be better.. But could be worse. Clara's body isn't letting go of fluids like it needs to and her blood pressure is a bit too low. They are placing a drainage tube in her belly at the moment and are going to give her a few hours to respond. If that doesn't work, she may end up in surgery again tonight.

We are breathing a little bit easier this morning. Last night was hard, probably the hardest I've had since we got here. There was a point where things were really going south and I was pretty much losing my grip on things.

Baby Clara's systems basically weren't working-she wasn't making urine, her body was swelling, her blood pressure was too low, her heart rate too high, too many acids in her body..

I started reading Clara a story around midnight and then Dustin and I sat at her bed and talked to her about her family and friends and the things we like to do. We talked to her about the carousel, the farmers market, dragon hollow, camping, her families obsession with Star Wars.. :) we talked to her until 4 in the morning and over that time, she took a turn in the right direction. A small one, but huge at the same time. Her numbers are still slightly getting better so we are slightly breathing again. 😌 sorry for the short, no real info texts yesterday. It was pretty crazy.

Clara is doing amazing today! All of her numbers have continued to get better today-several of them (temp, lactaid acids, blood pressure, a few others) are actually perfect. Yesterday her lactaid was an 8. It's supposed to be around a 2. They just tested it and she's at a 2. That's in.. 12 hours? They've removed one blood pressure med completely and lowered another and her BP is maintaining itself. She is making urine, still losing fluid off her belly, all of her labs are looking good.. Honestly.. It is a complete 180 from last night and it has been an emotional day, but in a good way. Everytime I hear a silly number I start crying because it's one number closer to our sweet girl getting better. She is still quite sick, but been on an uptrend long enough now that it doesn't seem like a fluke.
Love you all!

Clara was a little rock star over the night! Yesterday was spent really letting her organs and stats catch up to what they needed to be at and by the end of the night, she had really reached normal or at least close to it on everything. The next goal we had to meet was for her pee outtake to kick into gear before they close her chest. (Have I mentioned that her chest is still open from surgery? They left it open to allow room for swelling and such. It's a good thing because they actually had to get back inside her chest that first night to do a procedure on her lung and it would have meant cutting her back open if they had closed her.) Anyhow, her body stopped producing urine after surgery and her little body swelled up like a balloon. Before they close her chest, she needed to get rid of all the fluid. The put a tube in her tummy which really helped, and also helped kick start her turning the corner. She started to make a tiny bit of urine, about 1 ml every hour and everyone was thrilled to have that. They added some lasix (a diuretic) yesterday and last night, she started putting out about 30 ml an hour! We came back today to a completely different looking little girl! She still has more to lose, but they had to give her a bit back because the rapid loss affected her some of her stats just a bit. Not even to a worrisome point, but the idea is why push it?

Baby is doing great. :) I haven't been sending pictures because honestly, they are pretty sad looking and I've felt protective of her little self image. 😌 We fell in love with little puffy faced/super chunky Clara too though, and today is the first day she has looked similar to the Clara we met that first day. It's an odd feeling. :) she's down a few more medications too, and even lost a couple cords today!

Fundraiser Updates

Posted on June 28, 2014

Posted on June 28, 2014

BIG Bazaar today!!! Raised funds for Clara. Check out the  pictures. 

Posted on June 28, 2014

Posted on June 28, 2014

BIG Bazaar today!!! Raised funds for Clara. Check out the  pictures. 

Posted on June 20, 2014

Posted on June 20, 2014

The Henderson Family is struggling as Clara was  re-admitted to Seattle Children's Hospital. There were a brief couple days when Clara was doing well enough to settle in at Sandi and Dustin's temporary home, the Ronald McDonal House. By the way the Ronald McDonald house has been amazing and provided much needed security during this difficult time. 
One Day at a Time has become a reality of life with a medically fragile child. 

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