It's been over two weeks since Noah's surgery. His lip and nose look wonderful! Noah had his follow up appointment with the surgeon today who was pleased with how Noah's lip has healed. He removed the rest of the stitches in Noah's nose. Noah didn't even flinch, much to the surgeon's amazement! The arm restraints are now gone too and Noah is enjoying his new found freedom. And best of all, Noah got his soothie back!! He didn't know what to do with it at first, but after a few minutes, he was in heaven sucking away! We need to start massaging Noah's scar every day to keep it from becoming raised as it heals.We discussed the desats that Noah was having in the hospital (his oxygen levels dropping periodically), and the concerns I have about this. So Dr Ross sent a referral to respirology to address this. Hopefully we will see them soon and they will decide if Noah needs to be on a monitor and perhaps oxygen during the night. We also discussed the possibility of having to do a jaw surgery in a few months, depending on how Noah's jaw grows. Because of his PRS, Noah has an abnormally small lower jaw and an "unusual" airway. The concern is that when they close his palate up, they may be closing off his airway. We will just have to wait and see what happens over the next few months with Noah's breathing and jaw growth. Sounds like palate surgery won't happen for at least another year. 
So more hurdles for Noah to overcome in the next few months. Noah is now 6lbs 3oz so we are slowly moving in the right direction again. In a few weeks after his lip has had more time to heal, he will have a swallow study done to see if he is still aspirating. If he passes we will be able to start some spoon feeding which would be exciting!
It is day 5 following Noah's surgery and he is doing quite well. He is still taking his tylenol round the clock, but he seems to be feeling pretty good! We are getting more and more smiles and giggles today. The swelling continues to go down and his nose is looking better and better. I can hardly wait to see him without the steri-strips and watch his new face continue to take shape over the next few weeks!
He is still definately missing his pacifier and so he wakes a few times at night. I have heard that some surgeons allow the soother back as early as 2 weeks. So I'm hoping Dr Ross will allow this at our 2 week follow-up appointment! I can hope anyways!! The arm restraints don't seem to be bothering him too much. 
Here is Noah showing off his new Mic-Key button. Unfortunately we are having lots of problems with leakage through the button which means the valve is probably not working already. So we will have to contact our home nutrition nurse next week and find out what we should do about this. We have also increased his breastmilk/neocate concentration as his weight was starting to plateau again before surgery. Hopefully we will see some weight gain now again. He is now up to 160kcal/Kilo (a normal baby gains weight on 100kcal/Kilo). He just burns off the calories so quickly!
We are home from the hospital! Noah is doing well. He still had another desat overnight, but only for a few seconds and he self resolves. So they weren't too concerned anymore and we just need to watch him closely at home. If we notice him having any bluish episodes we need to take him back in. He is a much happier boy since they took his nasal stents out and as long as he gets his tylenol, he's quite content. He doesn't even seem to be missing his soother anymore. The swelling is slowly starting to come down. He has to wear arm restraints (blue's clues restraints - a bit hit with the kids!) and the steri strips until our follow up appointment with Dr Ross in 2 weeks. The surgeon was also able to attach the lip muscle during surgery so that should help massage his gum line and teeth into a better position. We should notice a difference over the next few weeks.We are so glad to have this latest hurdle behind us at last. Now we can enjoy Noah's new face!! Thanks to all for your many prayers and words of encouragement!
On Monday morning Noah went in for his lip/nose repair, ear tubes and Mic-Key g-tube button. We arrived at 9am and first met with Dr Ross, our plastic surgeon. After examining Noah he decided that he would likely not be able to do a full lip repair this surgery because his cleft was so wide and he is so tiny, but he would do a lip adhesion instead and the rest of the repair at a later date. 
We had to get one last picture while the nurse got Noah ready for surgery.
Noah went in to surgery at 10:45am for 3 hours and things went better than expected. Dr Ross was able to do a complete lip and nose repair, with a whole lot of stretching!! We were quite happy about this. Anesthesia was also able to take him off the ventilator right after surgery which was excellent. 
We met Noah's new face for the first time in recovery room. It was a bit of a shock for a moment. He was very swollen and bloody. He had nasal stents in his nose to keep the cartilage in place as things heal and steri strips across his lip. I felt like we were looking at a stranger at first glance, but it didn't take long to fall in love with his new face.
Noah went to a monitored bed on CK3 and needed some oxygen overnight. We were able to start feeding him by g-tube Monday evening and he tolerated it great. He was pretty miserable and was definately missing his soother. He kept trying to suck his new lip, causing himself even more pain. But he got Tylenol and morphine which definately helped.
Tuesday morning the oxygen was taken off and Dr Ross decided that Noah was doing well enough to go home as long as his oxygen levels stayed good for the morning. But, true to Noah's style, he decided he needed to prolong his hospital stay and had a couple of desats (his O2 levels dropped for a few seconds). So he had to stay and be monitored another night. 
Today, he had another couple of desats and he also sneezed his nasal stent out on one side. So Dr Ross decided to remove the nasal stent completely as he thought they may be causing some breathing difficulty. He will be monitored overnight tonight and if no more desats, he will come home tomorrow.
Other than the desats, Noah is doing very well. He is learning to sleep without his soother, and with arm restraints. Today we got our first small tight smiles. He looks beautiful and we are in love with his "new" face!
The day has finally arrived and Noah will be going in tomorrow morning for lip and nose repair, ear tubes to drain the fluid in his ears, and Mic-Key g-tube button. They will not be doing any work on his palate at this time. Surgery is scheduled for 10:45am and will take about 2 hours. He will need to go to PICU after the surgery, so it will only happen if there is a bed available in the morning. Since he will have 3 different surgeons it will be difficult to reschedule surgery anytime soon if this happens. Noah will also have to give up his soother, which he has become very attached to. This will make for some very difficult nights ahead. We are nervous and anxious to have this behind us. Please keep us in your thoughts and prayers tomorrow!
We reached a huge milestone today. Noah is 6lbs!! We are finally moving in the right direction! Yes, it is slow going, but at least he is gaining! The fundoplication has made a HUGE difference. He is back on the breastmilk with Neocate added to boost up the calories. His latest bloodwork looks good so no more weekly lab visits. His liver and kidney have recovered from the TPN. We also had his thyroid level tested to see if perhaps it was contributing to his very slow weight gain and high metabolism. However, it came back normal. Noah had his 4 month immunizations today as well as his pre-op checkup and it looks like surgery on March 13th is a go, barring no new viruses in the next 10 days. I am already starting to have nervous butterflies in the pit of my stomach once again. It just doesn't get easier to hand him over to the OR nurse and watch those doors close between us. But we know that Noah is in God's hands and He will carry us through yet another hurdle.
So more hurdles for Noah to overcome in the next few months. 
far as the leaky button goes, it sounds like it's the valve that is faulty. Apparently alot of people often have trouble with the valve, especially when the button is hooked up alot for continuous feedings. So we are just going to live with it for now until it gets really bad and then we'll have to get a new one. Noah is still on continuous pump feeds for 15 hrs/day. He has 2hr feeds 3 times/day and a 9hr feed overnight. 
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