Before and after lip pictures

Before


Sorry....I cannot seem to organize them on here for some reason. But you get the picture-from top to bottom lol

Home tomorrow!

So the swallow study did not go well at all. He was aspirating, quite a bit. It is unsafe for him to have anything by mouth for now. We are not sure if he's having difficulty now because of the rsv issues or the seizures causing neurological damage or maybe a combination of both. Either way, he has to be fed by a ng (nasogastric) tube for now. They want to put in a gastrostomy tube, which goes through the abdomen into his stomach, but he's been through so much and he does not need anymore stress on his little body. Plus, anesthesiology wants him to be symptom free from the rsv for 6 weeks. They plan to do surgery in about a month. I am still hesitant about doing the surgery in general though. I feel that Nick has had a setback from everything he's going through and I feel that he can recover and return to feeding by mouth, but it will take some time. To me, putting in a g-tube is a permanent solution to a non-permanent problem. Maybe I'm wrong and he will need the g-tube long term but I feel that he deserves a second chance and time to recover from everything he's been through. They plan on doing another swallow study in 6 months, I think I might try and push for another one earlier. I don't want him to loose everything he's learned, from all his oral skills, then have to start all over when they think he's ready. We will work closely with occupational therapy to keep developing his oral skills while he's using the ng-tube and hopefully he won't loose anything he has learned so far. We have been trying to do a gastric emptying test for a couple days but he has too much barium in his intestines from the swallow study to do the test yet. They will try again tomorrow morning to see if they can do it. Otherwise, it's another appointment we'll have to make.
But the good news is we get to go home tomorrow! We are so happy to get out of here and get home and try to get things back to normal before possibly having to go back for another procedure....
Thank you everyone for all the prayers! We appreciate every one.

Are we ever going home?

Well Nick is doing good. I think. His oxygen saturation levels are not good when he's off the oxygen. And last night they had to increase his oxygen to 1/2 a liter. Which is not a lot at all but he was on 1/16th of a liter for a long time. I am sure he needs to be suctioned more, probably deep suctioned too. He is eating a lot better, back up to 5 oz now. We had OT come by and she suggested that we add a thickener to the breast milk along with the formula we are already adding. The formula was for extra calories. So he still likes his milk with pedialyte and combining all these things together is pretty gross. After it's thoroughly mixed it looks like and has the consistency of yogurt. Yum. And I'm not sure if it's just the combination of things or its the pedialyte but parts of it can be chunky and clog up the nipple so it doesn't come out. Then when it does it shoots out like a water gun. Nick doesn't like that and neither do I. I already have to squeeze his bottle harder then it gets clogged and...oh my what a mess! But at least he's not choking on it when he eats anymore, that's amazing! He will have a swallow study done today, well hopefully today. Then we will know more about how much he is aspirating.
Thank you all so much for reading and for thinking and praying for us. It's been tough while in the hospital, we can't wait to get home.

Slowly getting there

Nick is doing better, slowly. He has not had a seizure since Monday-yay! The Keppra seems to be doing its job. His breathing is much better as well, he is not laboring to breath anymore. Unfortunately, he has to stay on the oxygen for awhile longer. Every time we try to take him off of it his sats drop to 88 or 89ish. So his bronchiolitis is from RSV. The initial rapid test was negative but the attending doctor said that they have had a couple rapid tests come back negative but the culture came back positive. So at least we know what caused his issues. He started to eat a little last night but this morning is refusing the bottle again....hopefully he is just tired.
On a brighter note, his plastic surgeon came by this morning and said his lip looks great. But it will probably take a little longer than normal to heal just because his body is using so much energy for fighting off infection and recovering from the seizures.
So to be able to go home Nick has to be off the oxygen and eating normally for 24 hours. Hopefully it will be tomorrow, but it's not looking too promising. I am not pushing anything because I want him as well as possible before bringing him home, I want to know he's okay.
It's been hard for Brianna and Benjamin while we've been at the hospital. We try to bring them up here but it's hard for them to be constrained to such a small area and not being able to touch anything! But they are troopers and will bounce back as soon as we get home and are able to spend some time together.
Thanks so much for all the comments and prayers, each one means so much!
Thank you for the continued prayers and hopefully we will get home soon!

Well Nick is back in the hospital. He was having trouble breathing, and had a slight cough. He actually started having symptoms the day of his lip surgery but they said he sounded fine and he didn't have a fever so they went ahead anyways. So Saturday evening he started having more trouble breathing so we decided to take him into urgent care. His oxygen levels were okay but you could tell he would having trouble breathing so they started him on oxygen. A few minutes into talking with the doctor Nick started to have a seizure. Out of the blue, and it lasted a little less than two minutes. I was so scared, the doctor grabbed him out of my arms and ran into the treatment room where they got ready to give him Ativan if he didn't stop seizing. He stopped shorty after they put him on the table. They decided to transport him by ambulance to the downtown location where they can more readily help Nick as he needed it. After being downtown for awhile they got his breathing somewhat under control but he started to have more seizures that started lasting longer and longer. They do not do anything for a person having a seizure except make sure they don't harm themselves somehow. It is very hard to watch your child helplessly convulsing and there is nothing you can do. After about the 5th seizure which lasted more than 5 minutes they gave him Ativan. It takes a minute or so to work so he continued to seize for close to 8 minutes. We felt so helpless, so vulnerable-how could we just stand here and let this happen to our little boy....it was very hard. They started him on a maintenance seizure medicine but it takes 12-24 hours to fully work so Nick continues to have seizures. Thankfully, though, they are not as long. He has had a couple that he completely stopped breathing and started to turn blue-those are the worst for me. He will have another EEG tomorrow and hopefully we will know the results quickly this time.
He's sleeping a lot and they diagnosed him with bronchiolitis, which is viral. He probably has a little bit of pneumonia which they are treating him for with antibiotics. He still has very labored breathing and sounds very congested but all we can do is give him oxygen and try to make him as comfortable as possible. He looks so miserable though, he's just not himself at all and it's been so hard.
Please, please pray he gets better quickly and that we can get the seizures under control.

Sorry I wasn't able to update earlier. We had some issues with the surgery and recovery taking quite a bit longer than expected and then we had issues with pain and Nick just not feeling well.

But Nick's surgery went well! He had his tubes done first and surprisingly he had very little fluid in his ears! The doctors were very surprised due to his wide cleft and actually seeing fluid in his ears just a couple weeks ago. The ABR went well also. He did excellent and only has mild low tone hearing loss in his left ear. God is Amazing!

Thankfully, Dr. Kaye didn't use stents in his nose again! Those things were horrible and such a pain to try and clean out. His lip looks amazing! I really don't know how they do it but it really just look awesome! He has tape covering it for awhile so you can't see it very well yet. He has been in quite a bit of pain and with only using Tylenol we had quite a fussy baby for a couple days. We decided to try and add Motrin because you could tell he was in so much pain. He would try and sleep but he would wake up every 20 or 30 minutes because of the pain. But he seems to be better now. We also had issues with desaturating again. His levels were not nearly as bad as before, they were usually around the high 80's, low 90's. We are still not sure why that's going on. My only guess is that he might have a slight cold and that's what's causing it. Hopefully it won't be an issue for long and it will jump back up to normal in a week or so.

He looks so different, he's like a new baby really. I look at him and I have to look again because I don't recognize him! Brianna had a hard time when she first saw him too. I think she was overwhelmed with everything the past few days and she said she didn't want to look at him and that she wanted him his lip to stay the way it was...that broke my heart. But she's okay now and just loves on him like usual.

His hearing is also so much better now! I can tell he is just hearing every little noise and he starts to turn his head more and look around a bit. He's very interested in all these new noises he's hearing!

Before

After

He's such a little miracle baby and God continually demonstrates that to us!

Thank you so much for praying and for the kind words! We are so blessed to have family and friends like you!!

Surgery Day

Nick's formal lip repair is scheduled for today at 1:00 p.m. We have the OR scheduled for 2 hrs 45 minutes...that's a long time! But he is also getting ear tubes and having another hearing screening done. I am calm and not anxious about anything right now, I am praying I stay that way all the way up until after we get to see him. Joe is a little anxious, he's been having a little bit harder time this time. Last time he was fine but he said it's (the upcoming surgery) has been getting to him for a few days. I think I am more okay with everything because we've kinda been through it before and I know what to expect.

I will update as soon as I can. Please pray for our sweet Nikolas during this time, that his surgery goes well and we have no complications.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11