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| This is how Claire was feeling about spending another day at the doctor today ;) |
Our biggest concern at this point is most definitely Claire's heart. She has lost 7oz since last week and is now down to 8lb 4oz (0.46th percentile) which is officially considered "off the chart." Her heart is working extra hard and she is also working hard to breathe which means that she is burning extra calories but it's also making her too tired to eat well. Because of all of this, she had an NG tube put in today so that we can supplement her feedings with fortified breast milk. She HATED it and has been gagging on it a lot today but hopefully she gets more used to it. They showed me how to put it back in if she pulls it out, I'm really hoping that doesn't happen anytime soon ;). The tube should also help with her aspiration and her stooling since we will not have to add thickener to the breast milk that we put through the tube. Now with all of her feeding supplies/syringes, medicines, and our supplies for her bowel and breathing management, our living room is starting to look like a medical supply store -- and I'm on the hunt for a new purse/diaper/on-the-go bag to fit all of the things that we need for our appointments!
She had her first fever (101.7) yesterday and gave us quite the scare but she didn't have any other new symptoms and her vitals were all fine so we aren't sure what that was all about.
Since we were already up at the health center today for another appointment, Claire's surgeon brought us in for an x-ray and an impromptu visit because she is still having lots of tummy issues - the thickened breast milk (for aspiration) is causing her to become pretty backed up so they've increased her irrigations (and dilations as these will hopefully help stimulate her to go as well) again, hopefully this helps get things moving! Constipation (especially since she just had a fever) is very scary for kids with Hirschsprung's because they can get enterocolitis very easily. She has increased us back up to weekly visits with her until we can get Claire doing a little better with her stooling.
From here, the plan is just to focus on getting Claire as big as possible and getting as close to 6 months as we can so that her body will be as prepared as it can be for heart surgery. There is no telling how long her heart can stay like this so we might make it and we might not, we are watching her very closely. Her cardiologist called today to move up her next "heart check-up" from 1 month to 2 weeks since she is having such a hard time breathing (this is still terrifying to me), eating and maintaining her weight, this could be an indicator that we might need to do something sooner than we had hoped.
Her pediatrician will see her once per week to check her oxygen levels and I can take her to see him directly anytime I feel like she might be having any worsening symptoms - we did this yesterday with her fever. I walked in and told them her name and they knew who we were and got us right back to see him, we didn't even have to wait. I love that we have this option of reassurance but it's also scary to know that she has needed and could possibly need that kind of fast/emergent care in the very near future.
We also have to be very careful to keep her healthy as even a cold at this point could cause her to become very ill and require hospitalization. Our doctor has applied to our insurance for extra vaccinations and we have been instructed to keep her "cocooned" until she is fully recovered from her heart surgery. We are quickly (and reluctantly) becoming "germ freaks" and "homebodies" but it will all be worth it to keep her healthy and so that she can go into her surgery as healthy and as strong as possible.
We are back to feeding her every 3 hours day/night until she starts to gain weight so I've got my alarm set to make sure that she gets all of her calories in! Night <3.
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| Have a happy weekend friends!! Thanks for praying for me. <3 Claire |
NG tubes are kind of scary. But I am sure you will become a pro fast. Charity had one when she was a baby and one time our dog went between the couch where I was and the coffee table where I had the pump sitting and out came the NG tube. I was able to put it back in easily. So I know you don't have a dog, but they are about the same as our 2 year olds :) love ya. I have a feeling my family is about to become germaphobic also :(
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