Tuesday, November 30, 2010

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)

Saturday, November 13, 2010

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!