Feeding: Solid Foods

We waited to introduce solid foods until Wyatt was past his 2nd surgery at 6 months. We could have started before surgery but I didn't want to deal with starting for a couple of weeks and then have the interruption of surgery. We cheated a little by putting cereal in his bottles starting at 4 months. This was at the recommendation of his pediatrician. We thought it might help with his reflux and weight. Well, he still spit up a ton but I am still glad we tried it. It filled him up more and helped keep his weight up for surgery. 

Now that we are past surgery it was time to give it a go with solids (pureed foods). Wyatt really wasn't sure what to think! He was really confused and unsure about it all. We started with rice cereal and peas. He wasn't sure what to do with the spoon and sometimes lets the food pile up in his mouth without swallowing. It has been about a week and we are still practicing. He is getting better and better. So far he has had peas, bananas and apples.

For the most part feeding is the same for a baby with a cleft as without but there are some differences. The biggest thing is he will have some come through his nose or get stuck. Because of this, Anna (previously introduced as the coordinator for out team and Speech and Language Pathologist) told us it may be helpful to start experimenting with the food being a little thinner and then try getting thicker as we go. Some prefer thinner and others prefer thicker. She said to start out with small bites and then work on bigger bites as he gets better. Just like babies without clefts we try one food for a few days and then add another. Another thing I tried after seeing it posted on a cleft board was feeding him with the spoon upside down so he could use his tongue to lick it off. So far this doesn't seem to be his favorite. ;) 

Here is a picture of Wyatt during our first attempt at solids.

Do not be alarmed by nasal regurgitation! Most babies with a cleft have some come out their nose at first but it gets better and better even without the palate fixed by using their tongue. Here is Wyatt and his river of peas. 

These pictures are from our second try. He is a little more frustrated with the whole process.

Getting messy and having fun with it! He is learning. 

Our next big step with feeding will be introducing a cup but there isn't a rush for this. Some doctors want them to be using a cup before palate surgery but Wyatt's doctor said he can still use a bottle. We could try a cup closer to 8 months but I think we will hold off. He has enough to deal with! When we are ready we will try different cups to see what works best. We won't use anything with a valve as he still can't suck.

Post Lip Repair Update

Wyatt had a post-op appointment with Dr. Lacey at Cleft Clinic at the U of M on Wednesday. It was a quick meeting. The doctor looked at how Wyatt's lip and nose were healing and shared more information with us on next steps. Wyatt will have his palate repaired in 4 to 6 months. He will meet with Dr. Lacey again before then and also the ENT in case any adjustments are needed with his ears.

Here are some pictures of Wyatt one week post-op:

Today is a big day. It has been 10 days since Wyatt's lip and nose repair and his glob (glue, scabs, boogers) finally fell off! Waiting for this has been like waiting for Christmas morning.

As you can see he is doing great! He has a little dimple on the top of his nose from where the doctor put a stitch to try to center the nose. Dr. Lacey said that should soften over time. Also, the scar between his lip and nose will change over time. It will tighten and pull up and then eventually relax again.

As I write this Wyatt is no no free and bouncing around in his activity saucer squealing and laughing.

:)

Wyatt's Lip & Nose Repair (and tubes too!)

Wyatt's second surgery went great. He had a lip adhesion in February to prepare for his lip and nose repair and the actual lip and nose repair was yesterday. From what we can tell Dr. Lacey did a fantastic job. Here is the story of Wyatt's second surgery:

Wyatt's surgery was scheduled for noon and we were told to arrive at the hospital at 10 a.m. We pulled up to valet parking at the door with the giraffe just like last time. I really appreciate how easy they make everything and how kid friendly they are at the University of Minnesota Amplatz Children's Hospital. I know it's a children's hospital but the experience is still new to me and I think it is very cool. (I had a near miss with a tot on a trike in the hall on my late night run to the vending machine.)

Once inside we visited registration, security and then headed up to Children's Surgery and pre op. We got Wyatt all ready for surgery and then had to wait until it was time to bring him to the operating room. Waiting in pre op was probably the worst part of the day. Wyatt did great but Mommy and Daddy were anxious about surgery and trying to keep him distracted and entertained (he couldn't eat anything after 8 a.m.). We waited almost 2 and a half hours. I had lots of time to take pictures.  

 

 

While we waited the doctors and nurses stopped in to introduce themselves. Dr. Lacey autographed Wyatt's cheek again.

He was awake most of the time but fell asleep just before they were ready to take him to the operating room.

Soon it was time to go. We walked with him as far as we could go and then said our goodbyes.

 

 

We were told it would take approximately 2 hours and 40 minutes for the lip repair and tubes. It was 12:21 when he went in so we decided to grab lunch in the cafeteria and walk around the hospital a bit. When we got back to the children's surgery waiting area at 1:20 I was getting ready to pump in one of the consultation rooms when the assistant found me and said I had a call from the operating room. Mike wasn't with me and a million thoughts were running through my head. Luckily, all was well they were just calling to let us know they were just getting started because it took a while to get everything set up and Wyatt to sleep.

Then we started another period of waiting.

We anxiously watched the monitors that updated us on any changes in Wyatt's status. We weren't expecting to hear from anyone for at least a couple of hours but after only one hour (at 2:20) Dr. Lacey came out and said he was done and everything went well. He went over a few basics and made a comment about Wyatt's nose looking "totally different." My focus had been on getting Wyatt through surgery and I forgot about the impact this surgery would have on his appearance. Dr. Lacey's comment reminded me of this. We were anxious to see him but they were prepping for Dr. Meyer to do her part next, put tubes in Wyatt's ears.

At 3:17 Wyatt was moved to recovery. Hooray! We couldn't wait to see him.

I mentioned this in my post from Wyatt's last surgery but seeing my baby in recovery is incredibly difficult. Wyatt was sleeping when we first saw him. They had just given him some morphine because he was having a pretty hard time. He didn't sleep for very long and woke up confused and in pain. It was hard not being able to comfort him.

We weren't even able to hold him because they were going to be moving us soon and didn't want us to get too comfortable. :( It was horrible. They ended up giving him another dose of morphine and some Tylenol while we were there. He did take a little Pedialyte. After about and hour and a half in recovery we headed to his room. The nurses were great in getting us settled in. They ordered some toys and a swing to help make Wyatt comfortable. He fussed and cried quite a bit. They gave him some more pain medication and Tylenol. We did see a few moments of our happy, smiley Wyatt. His face was swollen and his lip and nose are bruised.

The swelling has gone down in his face and eyes but his lip and nose look worse today. I will spare you some of the more gory pictures.

He is having a hard day today. You can tell he is in pain and he isn't eating much. We have to keep a close eye on him so he doesn't do anything to accidentally hurt himself. He has his no no's again but is having a harder time being restrained this time around. I think this is because he is older, more active, and has new skills he wants to practice. He is frustrated he can't put his fingers in his mouth, play with his toys or roll over.

His lip and nose look great and we are anxious to see what he will look like as the swelling goes down and he begins to heal. Mike and I talked about the ever changing face of Wyatt. It is like we get to meet our baby for the first time over an over again. I feel like he looks so different this time. Even Brenda (Great Grandma) made a comment about it. We both think he looks older.

When I reflect on how things have gone these past two days I think some things were easier this time and some things more difficult. We were more familiar with the hospital and the process and that helped a ton. The difficult part is this surgery has been harder on Wyatt. Right now we are focused on doing the best we can to keep him comfortable. We are holding him quite a bit and trying to distract him with toys. He slept good last night and has taken a few short naps today.

We will have a post op appointment with Dr. Lacey next week and Dr. Meyer in 6-8 weeks. His next surgery will be his palate repair. We will be able to get the date on the books soon. It will be sometime between 10 and 12 month old.

Getting ready for surgery #2

Wyatt is scheduled for his lip and nose repair on Wednesday, May 8th at noon. This is the real deal as far as his appearance goes. A lot of people have asked me if it will be easier this time around since we have been through it before and the answer is no.

It will not be easier. For me it will be harder. I didn't know what to expect last time so I went through the motions of the day and dealt with each emotional challenge as it came; the anxiety of prepping and leaving for the hospital, saying goodbye to Wyatt's wide smile, distracting him when he couldn't eat before surgery, watching the operating team carry my baby away, waiting anxiously during surgery, and seeing him confused and in pain in recovery. Now I know how hard it is going to be.

But we will once again be brave. We will all be brave for our sweet Wyatt. Please keep us in your thoughts and prayers this week.

 

Packing for the hospital

I have found that we don't really need to bring the whole house and prefer to minimize what we haul around the hospital. We have only had to plan for one night stays. Here is what we pack for surgery day:

Wyatt

pj's (preferably button up to leave space for the iv)

onsies

socks

bibs/burp cloths

blanky

favorite toy and/or new toys (these are especially helpful in distracting him while in pre op, toys that make sounds, music and light up have been great)

wipes

diapers

Mom & Dad

tissues are a must

basic toiletries like tooth brush & tooth paste

feeding supplies (bottles, dish soap, bottle brush, etc.)

pump & pumping supplies (cleaning stuff, cooler for storage)

ziplock bags or extra plastic bags (you never know when you will need a bag and these have come in handy for snacks, dirty laundry, pumping and feeding supplies and carrying extra stuff to bring home)

pillow & blanket

comfy clothes (preferably dark and a change of clothes - it is easy to get some blood on you when you snuggle your baby just out of surgery)

shoes that can slip on and off easy

camera

phones & phone charger

snacks & drinks

cash for food, snacks, drinks