Needless to say, it’s been a long and crazy week. Hailey and I are exhausted, but we are so happy. Foxx has been doing super well. On Sunday, they told us he might even come home on Monday. But then the nephrologist came by and said he thought it would take another week for him to get to his weight gain target. Well, he ate and he ate and he ate! He entered the hospital at 4.5 lbs and severely malnourished because his kidneys were dumping the good with the bad. in only 10 days he gained a whole pound! That’s 22% of his body weight in 10 days. Really encouraging. All of the key indicators were up. We were able to make some good progress on supplementing his food with enough electrolytes, fats, and proteins to get him to gain weight and maintain his blood chemistry enough to go home. So, Wednesday, we spent the day getting his 8 prescriptions filled and getting his supplements and doing checkout work. He came home Wednesday night and just kept right on eating like a champion! He’s now been home 10 days and is up to 5 lbs 14 oz. He’s getting chubby and we couldn’t be happier to see that! He is pretty much bottle feeding on pumped breast milk. That enables us to monitor super closely his intake and to fortify and supplement so that he can gain weight. He was prescribed twice the normal volume of milk as a normal kid his age and development, but he’s outpacing that by 30-50%! So, he’s eating close to 2.5x what any other 6 week old would normally consume. It seems to be working! He looks so healthy and eats in twice as much in 30 minutes as he used to eat in 1-2 hours. He’s doing awesome! He has 3 meds that he takes twice daily, three once daily, one three times per day, and another with every feeding. Some are mixed with his milk, some a dosed orally through a syringe. It’s a huge amount of work for mom and dad. We are so dang tired. It’s finally hit. I’d say both Hailey and I are twice as tired as we were those first 3 weeks. Now, we’re hoping to recoup some of the sleep that has been lost and regain some energy! We’ve had so much support through all of this and we feel incredibly blessed. We have learned what true friendship is and the blessing of having loving and supportive family all around. Perhaps more than anything, we have learned just how much we love each other and our little Foxx. Prayers have been offered and prayers have been answered. Thank you for your prayers, thoughts, support and kind words. And, we thank our Heavenly Father for sending us this perfect little angel of a boy to grace our lives and brighten each day and every 2-3 hours each night ;) Going forward, Foxx has lots of follow-up visits with his kidney and urology doctors. He will continue to need lots of lab work and nutritional assistance. His kidneys are working, but not well. His urinary tract is in bad shape, but there are surgeries to try to address that and the prognosis is good. We continue to expect miracles and look forward to Foxx getting big and strong and being all he was meant to be. His complications are significant enough that he should max out our deductible each year. Add co-pays and ancillary expenses and we’re looking at $500/month for the next 18 years. Something close to $100k. It’s crazy to think about. And, our situation is so much easier than so many people we came across in the NICU. We feel so grateful. What a blessing each day is. Saturday was Foxx’s 6 week birthday and also his original due date! He is a miracle to us, and to me particularly because it’s been a 40 year wait. His struggle has strengthened our marriage and strengthened our testimonies that we are children of a loving Heavenly Father who weeps when we weep and rejoices when we rejoice and who loves us infinitely more than we love our little Foxx.
Posted on: Tue, 02 Sep 2014 07:48:07 +0000
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