We're home!!

Nick did much better after we started giving him only Tylenol. Apparently, he is allergic to codeine! No more of that for him! His OSATs were still dropping periodically but not drastically (high 80s) and usually for no more than 15 seconds. He is eating again and is back to his old self-happy!

We're so glad to be home and we are so thankful for all the prayers! What a blessing to have such wonderful people in our lives who care so much about our little Nikolas.

Now....how to get ready for Christmas in time!

Thank you all again for your prayers!

Not so well...

We were hoping to go home yesterday but that did not happen. Nick is having trouble with his oxygen saturation. He keeps dropping, especially when I am holding him. The lowest he has gotten is 58%. Normal OSATs sats are 97-100%. At one point his lips were turning blue and he was really struggling to breath. It really scared me, I think even more because of the monitors and lots of people in the room. Laying in his bed on his side he does his best. We are not sure if they are dropping because of his nose stents or because he has inflammation in his airways from the breathing tube or if it's from his pain medicine. So today we are trying just tylenol to see how he does with that and if it makes a difference. So far he didn't drop like crazy when I was holding him and feeding him, it's only dropped slightly a couple times- so that's good. He also wasn't eating very well for awhile but now he's eating 2-3 ounces.

He's so sweet and likes to just stare into your face. He's not back to totally normal yet as he won't really smile, but I wouldn't be either with everything they've done with his lip.

I can't wait till everything is okay and we can go home, Ben and Bri hate having me/us at the hospital and always ask when we are coming home...it breaks my heart.

Please pray for Nikolas, he is strong but we cannot do anything without prayers and trusting in God to take care of him.

Doing well

The surgery went well. He was in quite a bit of pain when he woke up so they immediately gave him more pain meds and he fell asleep again. He's eating very well, except he still likes the flavored pedialyte added to his bottle but as long as he's taking in enough fluids they don't mind. Hopefully we will be going home in the morning!

Thank you so much for the prayers and for continuing to pray for our sweet Nikolas!

Recovering-

Playing with daddy before surgery

Surgery tomorrow...

Well his thrush is apparently gone, even though there is still stuff that is 'caked on' his tongue, they said it is not thrush. Two doctors said that it's gone. So we scheduled surgery for tomorrow at 10:30 a.m. He has to stay at least over night, and until he is eating enough.

Hopefully, prayerfully, it won't be canceled again and we can go ahead with his first surgery. I am slightly nervous, mostly because of the unknowns. How is he going to react to everything? Is he going to recover well? How will he eat now? Thankfully, I have a wonderful husband who reminds me that I should not worry. I need to have faith that God is in control and that Nick is in His hands.

Please pray for Nick and our family tomorrow, that the surgeons will have wisdom to take care of Nick and that he will recover well and we can go home as soon as possible.

Thank you everyone for your prayers and encouragement! It means so much!

Finally getting better!

I am so thankful that his thrush looks to be going away. His doctor thought it was completely gone but I am not going to take any chances and I am continuing to give him his medicine until he's finished with it. We had to give him a glycerine suppository on Monday, he had a big blowout, 9 days worth! But he hasn't pooped on his own since. His doctor said that because he wasn't eating enough his body was probably reabsorbing it all and that's why he had not pooped yet. He had only been eating 1 to 2 ounces at a feeding, which is obviously not enough. He refused to even let me put the bottle in his mouth after he would eat an ounce or so. I had to force him to eat another ounce and that was not fun. I figure out that because of one of the medicines he was taking the milk was not tasting very good to him. He would eat all of the prune juice we had to give him but would have nothing to do with the milk. So I started adding the prune juice to his milk and he would eat it all! Now he will eat about half his bottle but refuses to eat more unless we put pedialyte in it. (His doctor preferred pedialyte over juice to get him to eat). It has a fruit flavor and he really likes it. But he is eating at least 4 ounces a feeding now! We will meet with his surgeon on Monday and hopefully reschedule surgery, if not his lip adhesion surgery then at least set a date for his formal lip repair.

Thank you for all the prayers, please continue to pray that the thrush won't come back and we can go ahead with surgery.

Day 9 of no pooping....

Ugh, this is so frustrating. They put in on diflucan and nystatin and the thrush is still not gone....Plus because he was losing weight they had me adding 1 tsp of formula to his breastmilk. Well he now hasn't pooped for 9 days, I started using the formula 8 days ago. We tried stimulating his anus with a thermometer, giving him 1/2 oz of prune juice (3x's now) and nothing is working. I am getting very agitated at his pediatrician because it seems like they aren't doing anything! Nick is not an average little boy, but they treat him just like any other child. That's good in some ways but not when it comes to his medical care. I am just so frustrated and I don't know what to do, Nick normally pooped at least once a day and now for him to go 9 days without pooping is not normal!!

I am currently waiting on a phone call from his pediatrician but I will probably end up taking him to urgent care later tonight because they probably won't want to see him and will probably just call something in.