Wow! Ever since I've gone back to work, life just has flown by. I am so sorry I haven't posted an update. I know many of you have been wondering how Ella is doing and overall I am happy to say... She's doing really well!!!
We have had a cardiac team appointment and a cardiologist appointment recently and both went well. Ella is continuing to grow really well and her heart function looks good. Her tricuspid valve seems to have a little leak, but Dr. Hill said that he's hoping that upping her diuretics a little will help solve the problem. Each time we go to the cardiologist appointments I tend to get a little nervous. It's been at these appointments where we've been told we need to go back into the hospital so there's always a tinge of fear that that will be the result of the appointment. Dr. Hill and I also discussed the possibility of Ella needing another heart cath to check on the tricuspid valve's leak and possibly close off any extra collateral veins that her body may have produced. So we just wait until that time comes! He mentioned that the heart team is now hoping to wait until next Spring, or until she is 2, to do the Fontan (normally the third) open-heart surgery. We were originally told that they'd like to do it when she hits one and a half, but the older she is, the better and the more likely it will be successful. The only thing that scares Matt and I about waiting is that we would still be in the "interstage" phase since she isn't a candidate for the Glenn (second surgery) due to her blood clots. This just means that we still wouldn't really be able to take her in public in case she gets sick since she is still so fragile. Good thing Matt is a homebody! 😀
During the cardiac team appointment, Ella threw up and it was one of the more stressful/scary episodes. For some reason we were able to hear her cry which meant she was REALLY mad and pushed air passed the trach and through her vocal chords. Although I appreciated hearing her voice, it scared me! I originally thought the trach came out, but realized quickly it couldn't be that because I didn't hear an alarm from the vent, and I looked and it seemed to still be in place. I was kind of glad this happened though because the nurse that we see at these monthly appointments saw why we are so concerned about the vomiting--yes, that's still happening, and there's no rhyme or reason as to why...
Good News! We were up to 13.5 hours of sprinting a day up until a little over a week ago! But Eli got a cold and Ella seems to have gotten it as well. Thankfully her oxygen sats have been really good still and there's no fever. So no hospital stay for us *knock on wood*. We have only noticed that she may be sick by the color of the secretions in her suction machine (it'd be like your boogers turning color when you're sick 😜) and she let us know quickly that she did not want to sprint for a while. We saw this by how frustrated she got when sprinting on the bi-pap setting and how her sats started lowering. We are hoping to start sprinting off of the vent again soon! I am praying that she will be on bi-pap completely within the next two months and my ultimate goal is to really have her off completely by late spring/early summer. But, like we've learned, it's not always about what we want. HA! I have also come to appreciate the ventilator a little more. I believe it's what is keeping Ella at home rather than in the hospital. The filters have protected her from getting even more sick. So I guess you win some, you lose some. It's all about the silver linings, right?
We have physical therapy on Fridays and occupational therapy on Mondays every week. The progress has been slow, but really good. We are still trying to get Ella to do some tummy time, but with the trach connected to the vent, it has made it extremely difficult. I am so proud of the development that we have seen and how well she usually handles the therapies and appointments.
Going back to work for me has been good, but also tough. I find that I am exhausted by the end of the week, especially weeks like last week where we had 3 appointments, 2 therapy hours, and on top of that Valentine's Day with a class full of sixth graders 😉. But overall things at work are going well and I'm getting to know the kids a lot more and what they need from me to help them be successful. Speaking of school... My job share partner of 4 years is going back full-time next year. I am so sad to not be working alongside her and it also means that I will be switching grades. I will be going to a lower grade, not really sure which one at this point, but I know I need to work at least 40% part-time to pretty much break even with the cost of insurance and all of the other fun things that get taken out of our checks. So we shall see where God takes me!
I am realizing more and more how precious this life really is. I know that God tells us to live right now because we aren't guaranteed tomorrow, but often we get wrapped up in our own (relatively) comfortable American lives and forget what life is really about. I continue to pray for all of you who read this blog that you would know the love that Jesus gives to anyone who desires it. The only way that we have survived all that we have with Ella is because of God's grace and peace that only He can give. He has brought her through things that she "shouldn't" have survived and continues to use her to reveal Himself to those around her.
We are so thankful for all of you and the continued prayers for our family. We cannot thank you enough for all that you've done. Please pray for the families and medical staff in the PICU. We visited last Wednesday and it was busy! Glad we were just stopping by and not going in for a "stay". 😊
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| We stopped by the PICU before one of our appointments and got to see some of our favorite people! |
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| Happy girl |
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| Crazy family |
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| How Ella holds her paci in since she's not really sucking it much, it's so cute though! |
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| Eli and I took a trip with my coworker and her daughter to join our class at science camp! It was a fun day! |
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| Loving science camp and the beach! |
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| Ella loves her new bath tub. It's much more comfy and more her size! |
Love,
Jillian
