Feeding issues

I wanted to take some time to explain some of the issues that children with clefts have with feeding.

Here is a picture of Ethan with a soft palate cleft.

Judah has a cleft in his hard and soft palate, but it is possible to have either or, and variations of both. Both parts are very important for feeding and speech. The hard palate is in the front of the roof of your mouth and forms a partition between the nasal passages and the mouth. About midway back there are mucous membranes called 'rugae' that help facilitate the movement of food backwards. The rugae continues back into the soft palate which is composed of muscles.The muscles and soft tissue help you swallow and also regulate air during speech. In Judah's case, he is missing a portion of all of these. He also does not have a uvula (the dangly thing in the very back of your mouth). 

The first stage is bottle feeding. Children with cleft palate cannot generate suction. There are a few different types of bottles, but Judah used the Haberman. With the Haberman bottles, you keep pressure on the reservoir nipple so the baby's chomping and tongue movement helps the milk come out. There is no handing off the bottle to Judah to let him fend for himself, I have to manually feed him every bottle and that takes at least 20 minutes every time. Some babies cannot master this early on and require a feeding tube.

Can you imagine swallowing with your mouth open all the time? That is the only way Judah knows how, and that is also why palate repair is extra hard. He will have to relearn to eat since his current method will not work anymore. 

Weight gain is also a very important issue. Most babies with clefts do very well, all things considered, but when compared with other babies the same age, they are usually underweight. If a baby also has cleft lip, they have to achieve a certain weight and be steadily gaining to even be considered to have their lip repair. 

The second stage is purees or 'solid foods', which you generally begin feeding babies around 6 months of age. The absence of portions of the hard and soft palate make this very difficult. The first problem is that much of the food gets pushed up into the nasal passages and that can be very irritating. There is no partition to protect the sensitive parts of the inside of their noses. Imagine when something goes down the wrong way and it hurts so much! This leads to what is called 'nasal regurgitation'. Much of the food Judah eats comes right out of his nose, sometimes on its own, sometimes when Judah sneezes to clear it out. Again, the absence of soft palate makes it very difficult to swallow what food he does manage to get back far enough. Judah has had such problems with this that he is not able to eat pureed food on a daily basis and so he is still only eating bottles with cereal in them. Cleft moms spend a great deal of time trying to figure out what consistency allows their child to eat best.

Most babies have their palate repair around 10-12 months. Babies without clefts can usually start more easy to manage solids like dissolving puffs and other easy to manage foods around this time. These pose a choking hazard to cleft affected babies. I have tried these with Judah thinking they would just melt away and, even when I broke off tiny pieces, he chokes and gags and usually throws up because he can't manage to get it down.

Judah hates when I try to take pictures of the inside of his mouth, but sometimes I inadvertently catch one!

After palate repair babies must relearn to eat. They became accustomed to the ways they managed to eat before repair, so (beyond just the physical pain of being post-repair) these 'new' parts of their mouths are foreign and they must learn to adapt. However, the palate repair does not solve all problems. Once the palate is repaired, muscles that never existed before are now in the right place, but are not strong enough and it takes time to strengthen and develop them. It also takes a great deal of time for the palate to completely heal, so we must be careful of 'sharp' foods (like chips and crackers) that can harm the freshly repaired palate. Sometimes, the palate does not completely heal and leaves behind holes called 'fistulas' that end up causing the same problems as before repair, and also require additional surgeries to correct. Also, our children have many texture and taste aversions that last long into childhood.

Happy 4 months

Judah is four months old today and we are three days shy of 'officially' being one month post-op. Judah's appointment yesterday went fine, Dr. Grant said everything looks great.

He said it will take about 3 months before it is completely healed...we should be able to tell when all of his lip feels the same, right now it feels kind stiff where it was sewn together. We got the go ahead to start massaging his scar to try and help it relax a little more, but it could take up to year and a half before it completely lays down where it should (You can see in the picture above how the scar tissue has started to pull his lip up). Right now the scar tissue feels very tough and hard... hopefully massage will help break some of that up.
Overall, I feel like the recovery from his lip surgery went much better than I expected. Even though we had some difficulties in the beginning, it has not been bad at all. I figured Judah would be screaming non-stop or just miserable...he really surprised me by continuing to be good natured, as always, and it is just amazing how quickly he healed. Micah and I spent so much time worrying before the surgery about what Judah would look like after, and I can say now that it has turned out much better than I ever imagined.
We also set the date for his palate surgery yesterday...We go for his pre-op appointment on August 23rd and his surgery will be the next day on the 24th. He will stay a minimum of two nights, he will go home once he is able to eat enough to satisfy the doctors. Dr. Grant said the recovery from palate surgery is a little more prickly than the lip, and understandably so.
Dr. Grant has a book that he showed us when we saw him for the first time of before and after photos of surgeries he has done. I printed out pictures of Judah for him to put in the book and gave them to Dr. Grant at our appointment. He was so tickled and said they were 'delightful'. I am so impressed by the job he did and I thought he should be able to show that to parents of children about to go through surgery...hopefully it will comfort them knowing how capable a surgeon he is!
I am excited that we don't have to deal with much 'extra' stuff for the next six months and just get to go back to normal for a while. We are celebrating Judah's birthday by getting his 4 month shots today...what a birthday! ;]

A sorta fairytale

We arrived in Birmingham Thursday night. I had been dreading the night before surgery because I figured we would get no sleep; a hungry Judah is not a happy Judah. He normally eats about 4 ounces at a time and when we were preparing to feed him for the last time at 11:30 PM I told Micah to go ahead and give him 5 just so Judah could try to get as much as he could. He drank every last drop and slept until we woke him to leave for the hospital at 4AM. He must have known how important it was for him to eat and rest. He hardly cried until we went back into the waiting area where we spoke to the doctors, nurses and anesthesiologists. Once they started poking him he was not happy so I spent most of that time rocking and cuddling him.

Micah and I both held it together pretty well until it came time to walk him to the OR. We had to stop on some red tiles marking the point we could not pass and hand him to the nurse. Micah and I both kissed Judah and once I gave him to the nurse he looked at Micah and gave him the biggest pout I have ever seen and it just broke my heart. I will never forget that look. Micah and I started walking back to the waiting room but I just started crying and we stood there and hugged each other for a long time. It struck me that that was the last time I would ever see him like that. It was so heartbreaking.
When we got back to the room they gave us a pager and we went out to the waiting area. They told us it would be a while before we heard anything and when we got a page after 20 minutes it scared me. It was just the ENT doctor saying everything was going fine and they had put the tubes in his ears. He said there was a lot of fluid in them and the audiologist would perform a hearing test while Judah was asleep, and he passed for the first time EVER!
The next time we heard anything was maybe two hours later and Dr. Grant came out to let us know that Judah was in recovery and they had taken his breathing tube out and he was breathing on his own but was still asleep. I swore I remembered the doctor telling us that we would be able to go see him in recovery once he was awake, but when I asked him if we could go see him he said no, that we would see him when it was time to go to his hospital room. That bothered me a little but I didn't think a lot of it at the time. The doctor said he 'looked cute' and 'everything came together nicely' and 'it's a new face'...I didn't particularly like that last comment, and I was especially uneasy that we had been denied seeing him.
It was two more hours from the time we spoke to Dr. Grant that we finally were told we were going to our room. Micah and I went back to go meet Judah and saw his bed at the very end of a long hallway. My heart was beating so hard and it didn't help that Micah started humming something akin to the Jaws theme. I can't really explain what I felt when I saw him for the first time. He looked so small in the giant hospital bed they had him in. He was moaning in pain and looked so swollen. I can't even say that I instantly 'liked' the way he looked because it was so jarring seeing him like that, and it was just SO different from the Judah I handed over to the nurse just hours before.

When we got to our room I sat down and held him for an hour or so. He was so out of it and I spent a lot of time staring at him and trying to figure out how it would all look once his swelling went down. He would be fine one minute and then moaning and crying in pain the next. I had to go to the bathroom and when I got out everything was going to hell. He was having a very hard time breathing, was obviously in a lot of pain, and kept getting a panicked look in his eyes because he couldn't get a breath. The nurses started coming in and trying to get him oxygen, they called one of the surgeons who came in and tried different positions to see if that would help him breath easier. They concluded that maybe he would be happier if I held him, so I held him upright while the doctor crouched down and held an oxygen tube up to his mouth and nose to help him get air. We sat like that for at least 45 minutes while we waited on a 'nasal trumpet'(a long tube that is inserted into a nostril to open up the airway) and to see if he would stabilize. He was hooked up to a monitor that kept indicating his blood oxygen level was repeatedly dropping. While they were fetching the trumpet, the doctor calmly told me that he would not be able to stay on a regular floor with the trumpet as it was considered an 'unstable airway'. I thought I was done having to hand my baby over to the nursery but I took it ok at the time and resigned to the fact that it was the best thing to do.
Once the trumpet was inserted he did ok for a little while and then started crying in pain and started gasping for air again. The nurses were coming in to prepare to move him to the NICU and they informed me that we would not be able to stay at the hospital with him. I lost it then and had to give him to the doctor because it pained me so much to see him like that, and when I cried it seemed like Judah cried more. When they put him in the bed he started destabilizing again and his alarm kept beeping. Everyone seemed to be in a panic and it eventually got to me so bad that I had to leave the room. I went for a walk and cried and cried and cried.
When I went back up everyone was gone and my dad was waiting for me. I sat down next to him and he hugged me and I cried for a long time. He ended up taking me back to the hotel we had stayed at the night before to see about getting us a room and to give me some space from everything. I hated to leave Judah but hated seeing him like that more.
All of that took about an hour and a half and when I returned to the hospital I went in the nursery to see him.

He looked awful and kept waking from sleep with a start and crying because he was hurting so bad. They gave him a dose of steroids to see if that would decrease the swelling and help him breathe easier. I didn't stay long because it was too hard... I wish I could explain this to make it easier to understand, but he looked different, acted different and didn't 'recognize' us at all. I know he was very out of it but I couldn't stand it. I wanted my old baby back.
In a way it was a blessing that he stayed in the NICU because it allowed Micah and I to get a really good night's rest. We were so exhausted, mentally and physically, from the day's events.

When we returned to the hospital the next morning Judah was sleeping in his bed and they had removed the trumpet. Micah and I called his name and when he awoke we instantly saw the look of recognition in his eyes. It felt so good when he tried to smile at me and you could just tell he was happy to see us. We felt a lot better too because his swelling had gone down a lot and he looked much more like himself. The doctor came by and spoke with me and said he had done very well during the night and would be moved to a regular room as soon as one opened up. He took a bottle then and continually ate well after that.
To put all of this in perspective, a girl I have been talking to had her son's repair Monday morning at the same place, by the same doctor. They were able to see him in recovery (which lets me know that we weren't able to see Judah because of the state he was in) and was eating from his bottle 15 minutes after they got into their hospital room. She said he was only 'out of it' for about two hours after that. They are already on their way home and it is only 1 PM on Tuesday. The doctor said what happened with Judah may be as high as a 1 in 300 complication.
I am so happy with the way his repair turned out. I am so glad we didn't go with the Latham because I can't imagine it looking better than it does and we would have gone through all of that for nothing. I am getting used to the 'new' Judah and I fall in love with his little face more every time that I look at it. He looks so perfect and I really couldn't ask for more.
Judah has gotten better and better with every passing day. He is getting back to his 'normal' self and is still pretty mellow but in good spirits.

I'm sitting here looking at Judah now and it still feels so surreal that a change of this magnitude is even possible. I feel like this whole story has so many elements of a fairytale; love, struggle, danger, resilience, a touch of the unbelievable, and ultimately, a happy ending. Even though this is but one chapter in our journey, I am happy that we are on the road to recovery and to be writing this as history.

No time wasted

Much to my surprise, we have a date...even more surprising, it is SOON. Judah will have his lip repair on January 27th. I am as excited as I can be considering the circumstances, but a little freaked out because this got real, really quickly.
Our day at Birmingham went really well. I was very impressed by everything about the hospital and the cleft team. We saw audiology first, and I gave them Judah's history. They will put in tubes during his lip repair and he will have another hearing test after his surgery. We saw the feeding specialist next and let her know he is doing fine.
Then Dr. Grant, who will be performing the surgery, came in and I LOVED him. If you remember, the surgeon in Atlanta came in for less than 3 minutes and explained nothing. Dr. Grant spent a long time explaining everything about the lip repair and all the other procedures we can expect in the future. We have to be at the hospital at 5:45 AM for his surgery and he will be the first one of the day. The surgery should take 2 1/2 to 3 hours. They will take him back to the OR awake and give him gas to put him to sleep before they administer the anesthetic, that way Judah will never know where it came from. A nurse will call us about halfway through and let us know how he is doing. After the surgery they will remove the breathing tube and Dr. Grant will stay with him until he is stable. Then he will come and get Micah and I so we can see him. We will stay overnight and then go home the next day.
We talked about the Latham and he said that he was totally against it and thinks it does more harm than good, beyond the fact that if he was going to get it he should have already. He said the Latham restricts the upper jaw from growing properly and the lower jaw would continue at a normal rate, giving you a 'bulldog' appearance, which he said is 'good for dogs, but not so good when you're a kid'. Again, I told him I am SO OK with not doing that. I was dreading it and am so thankful we do not have to put Judah through that!
His palate will be repaired at 10 months. Once his lip repair is done, it will begin to shift his gumline and will continue to do so until he is 8 years old, when he will have a bone graft to fuse the two parts together. He may have revisions of his lip and nose, based on need. Once his baby teeth start falling out we will see an orthodontist team who will determine whether he has substantial bone for adult teeth to attach to. If he doesn't he will have other bone grafts, and they will form a plan to get his teeth where they need to be.
We also saw another genetics team. They really scared me because after physically checking him out they said they will do a blood test to scan for a variety of genetic disorders. I asked if he saw something that was a 'red flag' because Atlanta didn't ever mention further genetic testing. He said he didn't, and that if he had he would tell me. He said it is just a precautionary measure to cover our bases and make absolutely sure that the cleft is isolated. It will take about 2-3 months for the results to come back, and I am trying not to worry about it. He said that Judah looked perfect and he was almost positive the test would come back negative, and that if I spend time worrying I'd be doing it for nothing.
We got all of his pre-op stuff done today, met with anesthesia to fill out that paperwork, and the ENT will see him the day of surgery for the tubes...so no running back and forth like we would have in Atlanta. I am so impressed because after 2 months of messing around with Atlanta we had no definitive answers and no timeline for surgery. Within two DAYS with Birmingham we have everything in order and are ready to go! I am so thankful that we are going to have his surgery there and that everything fell into place when it did. They normally do the lip repair at 3 months, and he will be 3 months and 3 days when he has his surgery...So even though it seems we spent a lot of time with Atlanta, we actually didn't lose anything at all, and gained a lot more.
So, in just 15 days my sweet boy will have his first surgery. I plan on spending those days living in a bubble because if he gets sick then we would have to cancel his surgery and wait 4-6 weeks before we could schedule another one. I am also going to be taking sooooo many videos and pictures so I can always remember his precious wide smile. Most people only get one first smile, and we are lucky enough to have two to fall in love with.