I knew this was going to be a big post, so I saved it for a time when I had some time to spend on it.
Our Sweet Cashie boy had a severe cleft palate. The whole roof of his mouth was open to the top of his nostril on the left side of his face. He adjusted so well from the time he was born, and through his lip surgery when he was only a couple months old. His surgery was on January 19, 2015. That made our baby just 13 months old. Before they could do surgery, Cash had to be weaned from a bottle. That was it's own battle for us. After surgery, he would only be allowed to have liquids for 2 weeks, and he couldn't have anything, ANYTHING in his mouth (not even a sippy cup spout). We tried SO many different cups and methods, but our 13 month old wanted his bottle, and we had a hard time getting him to take anything else. By the time surgery came, he would drink out of a cup, but it was a slow, grueling process that resulted in spending many hours of frustration. I just knew that without eating food, feeding Cash his liquid diet that way was going to take over my life (which I was prepared for).
This was a pretty nerve-wracking experience for his Mom and Dad. It's something scary to send your sweet toddling baby, whom you love and have come to adore so much, through those doors with people you've only met a few times before.
Since Cash had surgery so early (we had to be at the hospital at 5:00 am for surgery at 7) we drove to Boise the night before and stayed in the Ronald McDonald house. Cash wasn't allowed to eat after midnight. We went down for dinner, made him eat some of the pasta they cooked, then let the boy eat whatever his little heart desired.
His first choice was Bananas (Oh how that boy loved bananas)
And fruit snacks. He thought he was in heaven!
We had planned on turning in early since we had to be up so early, but Cash had other plans! We tried to tuck him into his pack and play for bed, but he just cried and cried. So we let him out and let him just run around our room. He thought it was so funny to go behind the nightstand, or to crawl into the open bottom of the nightstand. What a cute boy!
We finally did get him to sleep (all I remember is that it was super late), but he didn't sleep well. Around two in the morning he woke up screaming! Nothing made him content. I tried holding him and rocking, walking, bouncing, singing, laying with him.... He wanted NOTHING! (I think he just wanted to be in his own bed). So after trying everything, Stewart decided to take him for a drive. Stewart said it was a super foggy night, and he even got lost in Boise at one point, but it seemed to do the trick. Cash came back and slept good till he had to be woken up to go to the hospital.
For both of Cash's surgeries, we walked over to the hospital from the Ronald McDonald house (about 2 blocks). There was just something so special about carrying your baby all wrapped up in a blanket through the cold dark morning. I remember all my nerves were calmed as we walked in the cold air and I held my baby tight to me.
Even though there was no food for him as soon as he woke up (which is how this boy preferred to roll) he was still a happy soul. He loved looking at the fish in the waiting room, and playing with the toys they had there. We didn't wait for very long before they called us back to Pre-Op.
This boy was always smiling!
Cash got a new little outfit (aren't those infant hospital gowns the cutest thing you've ever seen?!) and some ankle wear (although he didn't much care for his ID band).
There were tons of cool things to look at as we waited. There were fish on the ceiling that really intrigued him.
We waited in Pre-op for what seemed like forever! Doctors, nurses, and ENT and an anesthesiologist came in and all gave Cash the once over, talked to us, and buzzed about preparing for surgery. Cash got a little fidgety so we locked him in the crib to crawl around. He didn't mind, but it sure wasn't his favorite.
Bye Mom and Dad! See ya later!
Cash's surgery was scheduled to take 3 hours. Since his tubes were so infected they had to be replaced (no biggie). It was a quick and simple start to his procedure. Stewart and I were better prepared for the wait than last time, and brought a puzzle (with all the pieces this time) to work on. (We didn't finish it, and left it on the table for someone else to tackle). After 3 hours had passed, a nurse came in and told us things were taking a little longer than expected, because it was a more complicated cleft than was anticipated. We waited there for another 20 minutes or so, then were taken to ANOTHER waiting room, to wait for and talk to the doctor.
The doctor (Dr. Russell Griffiths) told us that Cash's cleft was significantly wider than he thought. It took him longer, and was much harder for him to bring the skin together on the top of his mouth. He said that Cash still had a hole in the top of his mouth where he couldn't get the skin to come together, and that it would go away on it's own. He told us that Cash would have to be on a liquid diet for 3 weeks (instead of 2), and during the 4th week he could only eat soft things (babyfood consistency).
We went to see Cash as soon as he woke up from his anesthesia. He was a little confused, and mostly was just uncomfortable. He tried to cry, and it came out more like a soft, pathetic little moan. It broke my heart. We had to keep this humidifier right on him (I think it was to help him come out of the anesthesia better). He didn't much like that.
He really wanted to have his Daddy stand up and hold him :)
Poor Baby was just exhausted.
After awhile they moved us to his own room. Cash wasn't very content. He wanted to be put down, and roam to his own heart's desire. That wasn't possible since he was hooked up to a few different cords.
Doesn't he just look so miserable here? He was the happiest baby through all of this. I couldn't have asked him to be any better!
The nurses noticed Cash's boredom and brought him this awesome bubble machine. It made the bubble noise, and changed colors. The little cords that were connected also changed colors, and Cash could hold them in his hands and look at them. This little machine saved ALL of our sanity while in the hospital!
Cash would sit on my lap and watch the machine. He wouldn't sleep in his crib (which was more like a little baby prison) so we had to take turns holding him through the day and also through the night.
There was times that Cash would get pretty unhappy. He just wanted to wander around and be normal! He also wasn't happy about the no food situation. We fed him pedialyte, but since his mouth was so sensitive, using a cup was pretty tough. The nurses helped us try a ton of different things. We used little cups, small lids, and finally they brought a syringe. I just kind of poured milk into his mouth a little at a time. That seemed to be our best fit, and turns out that's how we fed him from then on out. (When we got home the small syringe proved to be too slow, so Stewart went on the hunt. He finally found some calf syringes at the Valley Country Store, and we ended up using those!)
When Cash wanted down, we just locked him in his crib. He crawled around in his arm splints and tried to get his bearings with them.
He didn't do too bad!
Look at this beautiful little boy! What a good boy to smile through such misery and frustration!
At one point, Cash found the lid to a water bottle, and a lid from one his tubes of formula. He was able to grab both of them, and played with them like they were toys!
That made him so happy! He played with these new "toys" the rest of his stay.
Since Cash was still fairly new to walking, these arm splints made everything a little tougher. He had to really practice pulling himself up on things, and walking around in his crib.
This is where Stewart and I traded off to throughout the night. It wasn't terribly comfy, but so much better than during the last recovery!
The next day Cash was able to be unhooked from all his wires and cords. He wanted to GO! (unfortunately we still had to wait for the doctor to come check us out, so we were there till late afternoon). Cash didn't mind, as long as we were cruising the halls in one of these babies! He was so cute with his little arms straight out holding onto the steering wheel!
We were even lucky enough to have some special visitors come see Cash at the hospital! Grandma Jensen, Grandpa Funk, Addison, and Brogan all came up to Boise to see Cashie. He was excited to see them! We decided to spend one night in Boise at the Ronald McDonald house (just to be close). My kids loved playing at the RMD House. They have a super fun play room in the basement. It was just what Cash needed!
(There was a nice recliner there for Grandpa to nap in too) ;)
Burning off some steam!
Addison loves her little brother SO MUCH!
Cash loves his Grandma Jensen!
Since the kids were there, we decided to take them to the discovery center. There was lots of neat things to do there!
Cash like the black light! Especially since his monkey jammies glowed so well :)
Throughout the year our family (along with extended family) collected pop can tabs. It's one thing the RMD House does to raise money. Addison was so proud to dump our collection of tabs in the box.
It was fun to have everyone come and see us in Boise. When they all left, Dad had to check on his clan (he's an avid clash of clan player). I caught this adorable little sequence in pictures.
dad: Awwe Man!!! These guys destroyed my village
Cash looked straight at him and giggled.
Dad: Oh so you think that's funny eh?!
Dad put Cash to sleep and he sleep pretty good the night after. I think he only woke up once wanting to be fed. Formula and pediasure isn't very satisfying when you just want some REAL FOOD!
The next morning we packed our bags, cleaned our room, took a quick little nap, and we were headed home! I've never seen Cash look more happy in his carseat! He knew exactly where we were going!
After we left, I stopped at Chic Fil A and got a salad. It was like Cash could smell it! I didn't dare eat anything while he was awake, so I had to wait for him to fall asleep.
Here he's on the verge of sleep, but he just can't do it! (I think it's because he knows I have food) ;)
As soon as we got home, Cash seemed to be his silly little self again. He started doing his baby yoga immediately. Must've felt good to stretch :)
It was a tough thing to only feed this boy liquids. We went back to the doctor after 3 weeks expecting a green light for food, only to be told that the hole in the top of his palate had not yet closed, so another week on liquids only. We were heartbroken for our boy. We did another week of liquid, and went to Boise again. Again we were told another week on liquids. We did this for another two weeks before the Doctor decided that we could just start sending him a picture of the top of Cash's mouth. Cash was in his arm splints and on a liquid diet for a total of 9 weeks. The hole was ever so tiny when he finally decided Cash could start eating food. He told us to only give him soft things for another week, then return to normal. That was 9 of the longest, yet sweetest weeks of my life. Every time Cash was hungry, I would have to mix a concoction of whole milk and strawberry pediasure together, heat it up, and syringe feed it to him ever so slowly. It was a full-attention span job too. Even though I had to drop whatever I was doing, wherever we were, I so appreciate the time I got to have feeding my sweet boy. To be needed by him so much was such a special privilege that many parents don't get to experience.
I love you Cashie. I loved doing all of this for you, and I was prepared to do it again and again- as many times as you would need me to.
