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

Negative for infantile spasms!!

His EEG looked normal-yay! I am so happy we don't have to trek down that road! But his neurologist said that sometimes they don't show up if they just started having them....awesome. But I think that Nick has been having his 'fits' for a couple months so we may be in the clear. I really just think he has major balance issues. It's so hard to tell when he can't even hold up his head yet. We just have to watch him and possibly catch it on video if he continues to do it.

He also saw Nephrology on Thursday and they don't seem too worried about the cysts on his kidney's or the shape of them. But they want to do a follow-up ultrasound to make sure the cysts are decreasing and not increasing. His urine test and BMP were normal.

We also got him started on some acid reflux medicine. It hasn't started working yet but his pediatrician said it would take awhile and eventually, hopefully he won't spit up very much anymore. Nick hasn't had a huge problem with spitting up but sometimes when he does he gags on it, I am sure it burns, and I really think he aspirates a lot of times...poor baby. He cries so hard he turns blue and when people see it they are kinda freaked out but I just remind them that he is okay-it happens occasionally.

We also found him some new sunglasses. We originally got him Baby Banz but they smush into his face so much he can't stand them. He doesn't have much of a nasal bridge and his cheeks are so fat it has been hard finding something. The ones we found don't have a band but he hasn't learned how to pull things off his face yet....so they work for now.

Yeah...the gold looks kinda funny :o) But it's the only color the optician had.

We have a full week ahead of us. Monday is renal ultrasound, Wednesday is his cardiology appointment, Thursday is his 6 month checkup and Friday is his PAT appointment (pre-admission testing) for his surgery the following week.

As always we want to thank you for all your prayers, comments and thoughts.

God Bless and have a wonderful weekend!

Another issue?

Well we got some not very good news on Monday....well we're not sure if it's good news or bad news really. We saw his neurologist on Monday and she thinks Nick might be having infantile spasms. Apparently, his MRI showed that a certain structure in his brain is abnormal and it increases his chances of having seizures. I am quite frustrated about this, not because of what might be going on but because we were never told this. He had an MRI while he was in the NICU at Children's that showed them this back in August! Why are we just finding this out now? I wish we had known so we could have been watching for signs if he was having a seizure or something else going on. Let me explain why the doctor thinks he might be having them, sometimes Nick seems like he is startling by wailing his arms suddenly in the air, he jerks his arms a few times then gets a terrified look on his face and sometimes he will cry. I've heard of other babies with special needs having balance issues and I thought that maybe Nick just felt like he was falling so I kinda hold my hand firmly on his chest to let him know he's okay. He usually is okay afterwards but I never thought anything else could be going on....if only I knew. He has been doing this for probably at least two months. The doctor also explained that these are pretty serious type of seizure that is usually developmentally destructive. If he is having them he will immediately be put on meds and will be put on a special restrictive diet called a Ketogenic diet, which requires hospitalization initially to make sure he does okay on it.

Please pray for our little Nick.

It's so hard to imagine anything else going on but we know that God has his hand on our little one and is watching over him....