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.

Canceled again....

Well we had surgery rescheduled for Thursday but we met with the surgeon yesterday and had to cancel it because Nick still has thrush, even after more than 14 days of treatment. Poor baby, it's so frustrating because I feel like I am doing everything I can but it's not helping. I give him his medicine, wash and boil his bottles/nipples/pacifiers twice a day and he's still not eating as much as he should be either. He lost 2 ounces from last week, yesterday he weighed 11 lbs 4 oz. He barely eats 3 ounces at a feeding, sometimes less, and he takes a very long time. They tell us to limit his feeding time to 30 minutes because after that he starts burning more calories than he is taking in. At least he is not screaming his head off halfway into the feeding and he is eating more than he was 2 weeks ago, but it's just not enough.

Our surgeon will meet with us again in two weeks and if he is still not better we will probably completely cancel the lip adhesion surgery and just do the formal lip procedure at 6 months. I am not completely upset about canceling surgery again because I really don't want to see Nick go through any more pain than he has been, but I know it will ultimately be the best thing for him.

We also met with Dr. Artinger in genetics last week. His initial testing for Lenz micropthalmia syndrome was negative. Now they are testing for CHARGE syndrome. It's an acronym: C for coloboma of the eye, H for heart defects, A for atresia of the nasal choanea, R for retardation of growth and/or development, G for genital and/or urinary abnormalities, E for ear abnormalities and/or deafness. We should know the results in 3-5 weeks.

Regardless of everything Nick has to deal with, he is happy, he smiles a lot and sometimes makes a cooing sound. He tries to reach out and bat at toys and loves to be held and cuddled.

We meet with CCVI, the Children's Center for the Visually Impaired today, they will try and determine what his functional vision is and hopefully give us some tools to help him see and learn the best he can.

Thank you for your prayers, please continue to pray that Nick's thrush will go away and that he will start eating more and plumping up :o)

Surgery canceled...

Well we had his lip adhesion surgery scheduled for Monday morning but Nikolas has thrush in his mouth. I feel terrible. For the past couple weeks he has been more fussy in the evenings and has had a hard time eating. He also decreased the amount he would eat by about 10-20 mL per feeding. He would scream when he was eating like he was in terrible pain sometimes. We could not figure out what was going on, his therapist thought that it could possibly be reflux but he wasn't throwing up any more than he used to and did not act like he was in pain unless he was eating. Well now we know why- because his mouth has been hurting him. I thought the whitish stuff on his tongue was just milk and I thought I could wipe it off, maybe I could have a little bit but its hard to see in his mouth and he cannot open his mouth very wide either. Plus, it is only on the sides of his tongue, I just thought that it was normal because he has no palate. And he wasn't fussy for all of his feedings, mostly just the evening ones.

My sister and another friend came for a visit from Manhattan and my sister's son has had thrush three times now, so I asked her to look in his mouth and she thought it was thrush as well as our friend, who is a RN. I am just so irritated at myself that I did not figure it out sooner. It was mind boggling trying to figure out why he would cry so much when we fed him and why he wasn't eating as much anymore-why didn't I think of thrush?? I just feel so bad because he has been in pain these past couple weeks and I should have known it was thrush. And now the surgery is canceled because the surgeon does not want to risk infection, which I agree with, I definitely don't want an infection there either. I am somewhat glad we had to postpone surgery because I was getting anxious about it happening so soon but on the other hand, I know he needs it and I just hope that it doesn't push back the other surgeries too.

We had everything arranged too... we had someone watching the kids both Monday and Tuesday and everything seemed to be working out perfectly! All I can remind myself is that God does everything for a purpose. There is some reason that Nick is not supposed to have surgery Monday, whatever it is, we may never know why, but we just need to keep trusting in Him. He is in control.

Please pray that Nick's thrush will go away soon and that we can get surgery rescheduled quickly. Thanks and we love and appreciated everyone's support!