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!

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Scheduled the first surgery...

We met with Dr. Jang today to setup Nick's lip adhesion surgery. Right now he wears tape across his lip to hold it together and the surgery will basically take the place of the tape. Wearing the tape has already made his face look different. Before the tape his profile was flat, you couldn't see his nose. But it's looking great now, his cheeks are getting quite chunky and that helps too. The surgery will be November 15 and I am not looking forward to it. Knowing the risks of surgery is scary and having him taken away for me, even if it's only a couple hours, is going to be very hard. Plus, he won't be able to eat for 4 hours before the surgery and I know that won't be fun either.

This is not his formal lip surgery, he will have that at 6 months old. This surgery will keep his cleft from becoming wider and will allow a better overall outcome when he has his formal lip repair.

We have a therapist that comes every other week to work with Nick. She helps me figure out some good exercises for him. Right now we are trying to get him to be able to lay on his stomach. His muscle tone is pretty tight so it's hard to get him to straighten his arms out but the more we work on it the better he seems to get which is reassuring. He still has to wear splints on his hands for his fingers. The contractures are still pretty tight but the splints seem to be helping.

He weighed in at 11 lbs today! He is really filling out and his legs have quite a few dimples!! All of my kiddos have been pretty chubby babies and I don't expect Nick to be any different :o) He loves to hear rattle sounds, it's the one thing that gets him to smile every time! It's very cute!

As always, thank you for the continued prayers.

Eyes

Nikolas met with the opthamologist at Children's Mercy on Thursday. It was not fun because he hates his eye's being touched, and especially being pried open then having a bright light shown in them. Thankfully, they did not have to use the horrible speculum things again, oh my those things are torturous! She explained to me how coloboma's are formed: when babies are forming in utero their eyes are like tubes coming off their brains, then as they continue to form they become upside down u's, and eventually they reform to create o's again and form the whole eye. Well Nick's eyes did not come completely back together and unfortunately this is the same with his retina's and optic nerves. She said he will probably have functional vision but she couldn't say to what extent. There is nothing they can do either, maybe he would need glasses one day, but there's no procedure they can do. She gave me a bunch of information about services for children for the visually impaired.

Wow...I am not sure why but I took this pretty hard. I was really praying (and still am) that he would at least be able to see normally. I feel that he can see a little bit and if you are talking with him and playing with him he will smile, but I'm not sure if blind babies smile...

I really am having to just keep reminding myself that God is in control and that He gave us Nikolas for a reason, otherwise I think I would be a total mess.

Thanks for reading and for praying, it means so much.

Ears

Nick had another ABR test done on Monday to recheck his hearing and he did great! They said his right ear has pretty normal hearing, he is right on the borderline for abnormal with the high tones though. His left ear is a little worse and the test showed that he has slight hearing loss at all tones. But he still has fluid in his ears and that could cause the test to not be as accurate. He will have another ABR done while he is sedated for his lip repair. Yesterday we met with Dr. Ursick, which is his ENT. He said that he will need to have tubes put in at 6 months, and they will combine it with his formal lip procedure. There is a slight possibility that he could have issues with having the tubes in, his doctor explained that with his cleft there is a chance that his throw-up could come out of his ears and that could cause ear infections but if he didn't have the tubes it would be in his ear drum anyway so it's better that it drains if it can.

He weighs 9 lbs 11 oz! He continues to eat very well and is growing like a weed! He still sleeps A LOT but when he is awake he is looking around and squirming. He still doesn't like to be on his tummy and he has a hard time moving his arms to help him push up but we are working with a therapist through Infant Toddler Services that will hopefully be able to help him.

He doesn't sleep through the night but might sleep for 4-5 hours at a time which is really nice for me!

He has an appointment next week with the eye doctor so hopefully she will be able to tell us more about his eyes and how much he can possibly see.

Thanks for keeping us in your thoughts and prayers!