Pictures of Cleft

Because I know it helps me a lot to see pictures...

First, this is one of my favorite pictures of Wyatt. :)

 

Here he is showing his muscles and also his unilateral cleft lip.

 

 It isn't as easy as one might think to take a picture of the inside of an infant's mouth. You can kinda see the complete unilateral cleft palate here. What you can't see in this picture is his uvula (hangy ball in the back of your throat) which is split right down the middle.

Pumping & Other Feeding Tidbits

In my last post about feeding I feel like I left out some of the most interesting tidbits and most helpful information for others going through the same thing. Stop here if reading anything about pumping or breast milk makes you uncomfortable!

Because Wyatt can't nurse I am pumping so he can still have the benefits of breast milk. I had a lot of concerns about how it would work to exclusively pump. The first concern was if my body would cooperate. Pumping is not the same thing as nursing and I just wasn't sure if my body would produce enough milk. I have been extremely lucky on this front as the freezer in our basement will show. I have strongly considered posting a picture of this but will refrain. I will however take a picture of it for myself to remember the time and effort it took and the pride I have in being able to do this for Wyatt. Not only does he have enough on a daily basis but I am pretty sure by the time I go back to work there will be at least 3 months worth of milk stored for him. I am able to pump anywhere from 2 to 3 times the amount of milk he needs. I will continue to try to pump when I go back to work but it is a comfort to know we have enough to last a while.

The second concern was with regard to the time commitment. IT IS NOT EASY! I won't be one of those to gloss over this fact. Yes, it is the best for him yada yada yada... we all know this but it is hard work. It takes so much time and effort and that combined with everything else we were dealing with with a newborn and the cleft... I was stressed and tired all the time. I often had to evaluate the benefits for Wyatt against my own and the rest of our family's needs. As we have all adjusted to our new schedule it has gotten easier. It is now more of a part of our routine but it has taken a long time to get here and there are times I still fantasize about getting all that time and freedom back. Freedom! You also give up a lot of freedom when you are pumping. You can't go anywhere or do anything without planning around it.

In a typical day we spend 12 hours on feeding and pumping alone!

In the beginning I pumped for 20 minutes every 2 to 3 hours and now I pump every 3 to 4 hours. Sometimes I go a little longer at night or if we are out. The most I ever pumped in one session was 18 oz! In all, pumping takes about a half an hour every 2-3 hours if you include clean-up and storage. One thing that has helped with clean-up is I only wash my pumping supplies once a day. I put them in a bag in the fridge in between. We only had one bottle for the first month so we were washing it a lot. When we finally got a second bottle it helped so much. We are up to 4 bottles now and it is so nice to only have to wash bottles a couple times of day instead of after each feeding. 4 bottles has worked out well so we don't plan on buying any more right now.

It takes about a half hour to feed Wyatt. He also needs to be burped more often because he takes in more air with the cleft. We try to burp him every half oz or so. We then keep him upright for another 15 to 30 minutes to continue burping him and while he digests because he spits up a lot! This can be normal for any baby but the cleft can impact this too because he takes in more air. I also tried to adjust my diet to help with the spitting up by reducing dairy, pop, and chocolate at the suggestion of our pediatrician. I can't say I have been very good about this. I love milk and it has been so hard to give up. I wasn't drinking pop with caffeine anyway.... I am still not sure caffeine free pop impacts spitting up or not. Chocolate wasn't hard to give up. Anyway, so far it doesn't seem to have made a difference.

As you can imagine our 5 year old daughter has a lot of questions about feeding and pumping. I do pump in front of her because it would be just to hard not to. Shortly after Wyatt was born she brought home an anatomically correct picture of Mommy from school. I laughed and was a little embarrassed about what her teachers must have thought. She often comments on the fact that she was able to nurse but Wyatt can't because he has a hole in his lip. One time Mike told her, "Yep, you got your milk straight from the tap." Bella said excitedly, "Yeah, from the tap!"

I wouldn't have ever imagined I could write so much on this topic! There will definitely be more to come as we see what issues come up with how to feed Wyatt after surgery and --wait for it, feed him solid foods.

Feeding: How it all worked out

As I mentioned in a previous post one of our first hurdles with the cleft was going to be learning how to feed Wyatt. Because he has a cleft lip and palate he is unable to get suction. For Wyatt sucking is like drinking through a straw with a hole in it. Nursing or using a traditional bottle wasn't going to work for us. The Cleft Palate/Craniofacial Clinic Coordinator/Speech-Lang. Pathologist we were working with at the University of Minnesota assured us early on that she would be right by our side when he was born to help us get off to as normal a start as possible with feeding. This meant calling her when the baby was on his way so she could come to the hospital right after he was born to help us get started. So, the first person we called after Wyatt was born was Anna. She was our first visitor and volunteered her time to help us. Anna is amazing and I know part of the reason why is because she herself was born with a cleft. She is a strong advocate for Wyatt and other children born with this condition. She even changed Wyatt's first diaper in the chaos of those first hours!

Anna brought several bottles to try including the MeadJohnson and the Haberman. Wyatt rejected the Haberman and some of the others but seemed to take to the MeadJohnson. We used this bottle for the first couple of days in the hospital but Wyatt seemed to get tired from the effort it took to eat and we couldn't tell if he was getting enough. We didn't see Anna again during our stay in the hospital but there was a Speech-Lang. Pathologist at the hospital, Kellie, who also wanted to work with us. After observing a feeding she thought we should try another bottle. She had us try the pigeon bottle and it seemed to work better. Kellie was so helpful! She came back a couple of times to check on us and did a lot of running around/research to help us find bottles and pacifiers that might work for Wyatt. We had a lot of support from eveyone at the hospital. We also got a lot of extra help and advice regarding pumping so I could get off to the best possible start with all of that. The very first time I pumped I got a whole ounce and impressed all the nurses! Looking back this seemed to be a sign of future pumping success because that has gone very well.

We were still using the Pigeon bottle when we got home from the hospital. When Anna observed us feeding the day after we got home she tried a few different bottles again and some adaptations (combing the nipple from one with the bottle of another). We left that appointment using the Pigeon nipple with the MeadJohnson bottle. The doctors and cleft team monitored feeding and weight gain closely. At Wyatt's first weight check he wasn't gaining enough weight. I was so stressed out and sad my baby wasn't getting enough to eat. He cried all the time and looking back it was probably because he was hungry. Poor guy. I left that appointment a highly motivated Mommy. We were going to get food in this kid if it killed me! We decided to give the Haberman bottle another try because so many babies do well with it. We were also going to be more rigid with our feeding schedule. No more long naps for Wyatt. We woke him up to feed him every 2-3 hours. What do you know? It worked and within the first week Wyatt gained 11 oz! Three weeks after that he was still gaining weight like a champ.

We have been in a "normal" routine with feeding for a while now and are so proud of ourselves and Wyatt for tackling this first hurdle.

Wyatt's First Surgery is Scheduled

Wyatt's first surgery is scheduled for February 6th. At this surgery the doctor will suture his lip. This is basically just to attach it. They will touch it up and make it look better at his second surgery when he is six months old.

I don't think we have really thought about what it will be like or how we will feel when Wyatt has surgery. Right now we are just going through the motions and doing what we need to do for him. I know it will be hard on all of us. Maybe that is why I avoid thinking about it. I know it needs to be done but it is hard to think about what he will have to go through. It is also hard because we have gotten so used to the cleft. It is a part of him. It makes me a little sad to think of him changing and losing that wide smile.

 I know this is what is best for him and we will love his new smile just as much.

Update from the Orthodontist

After 4 weeks of using the NAM Wyatt's cleft in his dental ridge (gums) has closed 2.5 mm. This is really good. The orthodontist was hoping for 1 mm. The smaller the gap the better the repare.

Wyatt had more impressions taken and also has a new NAM.