Stop Scaring Mommy - Turning Blue

Toby is doing about the same. He is on 0.2 liters of oxygen, and they have tried weaning him off of it, but every time, he drops his sats (oxygen) and doesn't do well. He seems to need just that little bit. The doctors began fortifying the milk today to help him gain weight. Last night (Sat.) he gave mommy quite a scare. He was upset and held his breathe, and then turned blue. Nurses came running in, and thankfully by this time he had started to take a breathe. It scared me, but he recovered well, and didn't do it again. His difficulty breathing seems to be due to his vocal cord paralysis, which he could grow out of, but may not be able to. It's difficult to know at this point when he might go home; it could be awhile, especially with the episodes he has. They may do a scope of his vocal cords tomorrow, and a renal ultrasound. This is an ultrasound of his kidneys, which is pretty routine for babies/kids with spina bifida - want to make sure they're not enlarged. They did decide to quit cathing him since his outputs are so great! Yeah for this! We continue to pray that his vocal cords begin working and his swallowing will be functional before we bring him home!

Wet Diapers

Toby continues to have wet diapers!! :) Overall we're cathing lower volumes, so this is a good pattern too. We have to continue to cath as they're telling us that 20-50 ml is a good amount, and that's what we're finally getting...before it's been a range between 40-120 ml. Please pray that he will continue to have wet diapers and be able to empty his own bladder, so we can cath. him less and less. We probably won't know for sure if we can change the frequency of his cathing until we go to clinic on January 26th. Grandma Fabian goes home today, so we will see how we do on our own this weekend. Thankfully, Grandma Holt comes on Monday, so we won't completely fly solo for another week! 

A Difficult Day

It's been a difficult day for me emotionally. They told us we would be going home, and the day just dragged on and on, until finally they released us at 6:00 p.m. We're also having to catheterize him more than we expected, about every 3 hours. The nerves to Toby's bladder are damaged from the Spina Bifida, therefore affecting the muscle, so his bladder gets unusually large. To keep it from being enlarged, we have to catheterize him every 3 hours. Even then, we're getting large amounts, and I just wonder how we're ever going to get any sleep. He has several doctor's appointments already scheduled also, and that is overwhelming also. I wonder how I will be able to handle these new challenges and still be there for the other two boys. God has been continually asking me today if I will trust him. I know He is in control, and will continue to hold us in His arms. We choose to continue to trust HIM for HE has a perfect plan.