Monday, April 22, 2013

Wonder Boy

He's baaaack!!!

Well folks he's done it again! How could I have doubted him?! I never could have believed he'd be back to his old self in just two weeks!! I was expecting fits for at least another month. And now there is no trace of them. He sleeps great again, eats fantastic, and is happy all day long! He's a fighter! It's as if surgery never happened. I didn't think he would take to foods again so fast. I should have known... that little piggy. He never did take his bottle again. Which is one way to get rid of them... not recommended though. I'm glad to be done with bottles! He's been great with his sippy now too! Drinks lots of water and loves pediasure. It's amazing. Nothing phases this kid. He's rockin' his new palate!

It's such a relief to have that behind us! I'm so proud of him! He's even been more cuddly since surgery too. He always leans in to give me loves and open's him mouth to give me kisses. I can't get over how awesome he is! We are so lucky to have him in our lives. I love him so much! I wouldn't change a thing!

Tuesday morning we will be heading back to Cardon's so Hudson can get tubes in his ears. I wish it could have been done with palate surgery but it was too short of a notice for the ENT. It will be a breeze compared to his last surgery for sure! I'm just afraid he's going to remember everything a freak out. I'm not too worried though. He'll be great, as always. Bring it on!

Sunday, April 14, 2013

A palate is born

If your looking for my usual positive posts you may not find it here. It's been a real rough week as I've tried my best to take care of a healing little boy. My patience has been tried and tested yet again. I've had a few not so proud moments that have made me question myself. Was I really doing my best for Hudson? I've had to sit back and watch my baby cry. Cry from pain, cry from confusion, cry because he wants something but just doesn't know what. Cry as I've held his arms tight and his head down to forced medicine down his throat while he kicked and screamed. Cry because he just wanted to sleep in someone's arms. Its torn me apart to watch him cry so much when sometimes there was nothing I could do for him but hold him down and rock him until he stopped.

There have been some smiles and giggles amongst the tears. They don't last long but are surely enjoyed. They remind me of the once happy, goofy boy I had before surgery. They also remind me that I'll have him back someday soon, because this is our lot in life and I know Heavenly Father doesn't give us more than we can handle. Even though I may have forgotten that little blessing a few times this week as I've wanted to just give up.

We've made it to 9 days post op. Everyday I see a little more improvement in Hudson. And every little bit counts! I look forward to the day when this is past us and I can watch my food loving boy eat all his favorite foods again with ease. One day...


Friday the 5th of April started smooth for us. I slept well, with a few odd dreams of hospitals. We packed up what was left on our list and left the house right on time with a happy Hudson in the back seat.

The night before we had dinner with Curtis's parents where I held a wiggly boy as his dad and grandpa gave him a blessing. I feel so blessed to have the priesthood in my life and in my home for moments such as these. I felt a little more prepared for what Friday had in store for us and Hudson.

We arrived at Cardon Children's Hospital a little early. We waited in the front room for them to be ready for us. Hudson enjoyed the wait.

We got called into an office room not long after where we signed papers and got wrist bands. We made our way to the second floor and into another waiting room where we didn't wait long. Once behind the doors the nurse measured and weighed Hudson and asked us questions. She showed us into a little room where we would wait until surgery time at 10AM. She gave us a mini gown and little pants for Hudson to wear. Another nurse came in who asked us more questions and gave us more information and measured and weighed Hudson again to double check it was right the first time. She found out that it was and that he's just a little guy on the charts. That's all. 

Hudson had not eaten since the night before so he wasn't in the best of moods by 8:30 but we kept him busy with toys, cartoons, and a little car he enjoyed ridding around in. Did I mention the little gown and pants he got? I do love those! My mom showed up around 9 to give him loves too before it was time to say good bye. Hudson loves him Grammy! Curtis and I move down a notch when she is around. But that's OK because she was able to help keep him happy while we waited.

Grammy arrives

Hudson's surgeon Dr. Beals came in to talk to us around 9:30. He explained the procedure once again and reassured us that he will be in good hands. Next came the anesthesiologist who explained what he will do. And finally the nurse, the one to take Hudson away. She talked with us a bit and tried to make friends with Hudson. We all three said our "I love you's" and goodbyes. I handed him over to the nurse and he went with out a fight. We stood there and watched her walk through the double doors with our brave little man. We all didn't want to miss one second of him.

We packed our things up from the little room and made our way to the waiting room. It was only 9:45 by then. It was just as hard to walk in the other direction as it was the first time. I fought back tears for a while before I could fully distract myself. The three of us just sat quietly and played on our phones for a while. I got a call about 20 minutes after 10 from the nurse who took Hudson. She said they had started right on time and everything is going well. That was a little more comforting.

Missy came to wait with us and brought a huge bouncy ball for Hudson and some treats for us. We started to talk and joke around some more and watched a comedian on my mom's iPad who was hilarious! John Pinette, look him up. It helped ease my tension and made time pass more quickly.

I was shocked when Dr. Beals came up to us at only 11:20 to tell us he was finished and everything went great with minimal blood loss. He told us what would happen from here and answered a few questions. What happened to the 2 hours he said it would take?! Heck I'll take an hour and twenty minutes! He's awesome and I was impressed! We continued to watch John Pinette on the iPad for another 20 minutes until the nurse at the front desk called for the parents of Hudson. That's me! I could pack up our stuff fast enough! Curtis and I followed her through the doors leaving behind my mom and sister. I was so nervous to have him back with us. As we followed her down the hall and through more double doors I heard a cry coming from a room. A cry that could only exist in my nightmares. We walked closer and closer to this cry and I became scared. I realized seconds before we reached the cry that it was Hudson.

It was a terrified cry, a raspy cry and panicked cry. It was a different cry but it was still my Hudson. He was fighting the nurse who was holding him. Kicking and trying to wiggle free. I couldn't get to the chair fast enough. I sat down and she placed the kicking and screaming boy in my arms. Not even the sound of my voice calmed him down and it broke my heart. He cried and cried as I tried to hold him tight with one arm and softly rub the tag of his blankie across his cheek. I felt helpless. We worried that he might be in pain but the nurse reassured us that he was not and that it was just the effects of waking up from anesthesia. He would go from cry to sleeping for a while longer. Nothing we tried helped him calm down. He was angry. He kept trying to get the arm restraints off. Which he managed a couple times only to have them back on again. The right one came off yet again and fell between me and the pillow. So I left it. I showed him his blankie and put it in his right hand where he held it tight. He held onto it and at his calm moments would play with it with his fingers and fall back asleep. But the crying fits continued and there was nothing we could do to help him. Finally the nurse came in and gave him something through his IV which helped calm him down and put him back to sleep. I'm not sure how long we were in the little post op room but it felt like ages. Another nurse came in with a wheel chair which I sat in with Hudson and she wheeled us all the way up the top floor and into our own recovery room. The ride reminded me of almost 15 months ago when me and Hudson took a ride together into a another hospital room.

Curtis took this picture while he was crying. We figure we might as well take advantage of it! It looked better than I thought it would right after surgery.

Once in the room the crying started up again. The nurse hooked him back up to the IV and I told her to leave the other arm restraint off. I wasn't worried about fingers going into his mouth. I just wanted him to have some relief. But the IV made him just as mad. My mom and Missy showed up into our room after we got settled. Nothing still seemed to help him. Not even Grammy. He would fall asleep for about 10 minutes at a time only to wake up crying again. Only now he started to throw up blood. I had to remind myself that it was totally normal. They swallow lots of blood during surgery and it will upset their stomach. It wasn't pretty and went on for a couple of hours until he got it all out. During that time my dad showed up and we all tried to offer him his bottle and sippy cup but he wouldn't have it! We finally tired apple sauce with a spoon and that was the only thing he would take.

The crying didn't stop there though. He was passed around from one person to the next. He would reach out for someone new as if hoping they would take him away from this awful place. That evening was a little better for him. He was able to eat 2 things of apple sauce without any trouble and would stay calm for longer periods of time. The TV, iPad, and a few toys kept him distracted. I was even able to get a little laugh from him. He was still not fond of the IV and kept wanting us to take it off. Curtis's mom and dad also came to visit for a while and another cleft mommy who I've made friends with.

Huddy and Pappy

Watching cartoons

After our guests left around 8 or 9 maybe I realized how lonely it was. Curtis and I got comfy and pulled out our bed which was equivalent to sleeping on a booth at a restaurant. The recliner wasn't much better either. It only reclined about 5 inches and the foot rest only came up about 8 inches and was left at a slant. If you didn't have your knees up you felt like you were going to slide of the thing! But that's where I sat with Hudson most of the night. His longest stretch of sleep was maybe 3 hours and he woke up right as I was falling asleep. It didn't help that the nurse would come in every 4 hours to check his vitals. He cried and slept and slept and cried all night long. And I don't think I got an ounce of sleep. It was one of the longest nights of my life. Baby sister was not happy with the sleeping arrangements at all either or the fact that brother squished on top of her most of the night.

I was glad when morning finally rolled around. We were exhausted and frustrated with poor Hudson crying so much. It put me to tears. Suddenly having a cleft palate didn't seem like such a big deal after all and I had wish it was back. This surgery proved to be much tougher on us all than his first. I was almost disappointed. Everything had been so smooth for us on this cleft journey of ours. How could this have happened? The crying was tearing us apart. Nothing could consolidate him. But this was the healing process.

The second day was definitely better than the first. He still had crying fits and didn't sleep much at all. But he ate more apple sauce and played more with his toys and Grammy's iPad she had left. We had trouble getting him to drink though. He still wouldn't take more than a half an ounce from his bottle and not much from his sippy either. Fluids did not interest him. But little did he know that that was our ticket out of this place. We were hoping to be out before lunch time but they wouldn't let him leave until he was drinking more. The nurse unhooked his IV to see if that would make him more thirsty. It was also a relief not to have that dang thing attached to him.

At least someone got sleep...

Hudson's cleft buddies

Coco and Garrett came to visit that morning. Hudson was playing around and being goofy and we all had a few good laughs from him. And my mom came back to help around lunch time and give us a break. He went for lots of walks around the halls, watched lots of cartoons, and ate a lot of apple sauce. He would be happy and play longer but he still wouldn't drink and didn't sleep much either. It was a long day. With no improvements on his part about drinking on his own. So we prepared ourselves for another night. My mom stayed with us the rest of the day. And we all tried to keep him busy and happy. I just wanted to go home. I knew he would be so much better at home. He was dying to get out of his room. Finally around 7:30 that night the nurse came in who spoke with the pediatrician and gave us the option of staying with more IV fluids or going home and trying our luck there. She was happy he was eating lots of apple sauce and we did get a couple ounce of fluids in him, but not with out a fight. Of course I told her we want to go home! Relief! We didn't end up leaving until about 9 though. But we didn't want to stay another second longer!

Already looking awesome!

My mom helped us out and we loaded up our car and said our goodbyes and thank you's. Hudson was asleep after 5 minutes and slept all the way home.

Let's go!

See ya later Cardon's!

After crying for a half hour once we were home he finally fell asleep and only woke up once in the night where I gave him medicine and rocked him back to sleep. I knew he would be better at home! But the days to follow still weren't easy. Some nights have been better than others. He would wake up screaming and crying and not knowing what he wanted so I would have to hold him tight and just rock him until he fell back asleep. It was like this during the day too. He was definitely better being home though. He plays more but has been very clingy... and bossy. He's been eating great with a spoon and just baby food but we still have a hard time getting him to drink. He still will not drink more than an ounce of his bottle and then just throws it to the side like he doesn't care for it anymore. That's been one big surprise for us. He loved his bottles before surgery and now he could care less about them. I offer him one every day still in hopes he will drink from it but with little luck and no improvements. I'm just happy he is eating though!

I've seen much improvement though as the days go on. The nights are still long and he still has his crying fits but they don't last as long. It's hard to get him to sleep and we are counting down the minutes until he can have his paci back and we cross our fingers that he likes it just as much! So much for getting rid of it... but we are desperate to give him more comfort.

It was a long week. And every minute to myself I slept or tried to keep the house in order. The worst is behind us and we know he is only going to get better from here on out! He's a tough little guy! I can't believe all he has been through in such a short amount of time. He reminds me to keep pushing through the hard parts and smile and have fun when you can. That's what he does at least. Still smiling and always amazing me! Despite the hard times we know we have been and are still so blessed! Thank you thank you for all the love, support, and meals we have received!

You can tell it was a different day by the shirt. It looked better and better every day! He wasn't so happy when I took some pictures...

The last two are from today. He got to eat scrambled eggs and strawberries today! Slowly but surely he'll make it back to crackers and rocks... but for now we celebrate every little accomplishment!

He's a rock star!!

Wednesday, April 3, 2013

Humpty Dumpty: Hudson's version

A post by popular demand!

With Hudson's palate repair scheduled for this Friday I've had many, many, people ask me how it will be repaired. Not just recently but over the past year as well. My answer to them: Do I look like a surgeon to you? Just kidding... But really. I don't blame you all. How does a doctor make something from nothing? Right? Well it's all quite interesting. I've have the procedure explained to me a few times as well as doing my own research. But it's one thing to hear it and another thing to have to explain it to people! I've done my best though... I think.

I feel pretty darn educated on the matter of clefts. I've tried my best to relay that information to others through my blog. It's something near and dear to me and I want you all to know just that much more about the world of clefts. This is a post I've been thinking about doing for a while (regardless of the nagging...)  and with Hudson's palate repair just 2 days away I finally decided to hack away at it.

So here it goes...

Try and keep up as I explain the repair procedure to you. Thanks to my mad artist skills I've even provided you with pictures! I've found some pretty good pictures online but Hudson's is so unique to all of those I wanted to draw it out myself for you. My photos of his palate are always just bits and pieces. He's a wiggly little boy OK? His palate is so fascinating to me so I hope the picture I drew really helps you see what it looks like as a whole!

Hudson cleft palate
After repair.
Hudson's palate would be classified as an incomplete bilateral cleft palate. There are incomplete and complete, and bilateral and unilateral. His is incomplete because the cleft stops at his alveolar ridge. Remember his NAM? Nasoalveolar Molding. If his cleft were complete there would be a separation of the alveolar ridge too and when surgeons use the NAM it helps bring the gap closer together. Hudson's NAM was mainly to open his flat nostril which he had. He does have an upside down "V" looking notch in his alveolar ridge. Almost like an indent. He'll most likely need bone grafting a few years down the road in that spot so his teeth will have bone to grow in. If he has any teeth in that spot...

His cleft is a bilateral cleft because the gap takes up both sides of his hard and soft palate. Left and right. This is most likely why he has 2 uvulas! Split right down the middle! I love those uvulas...

OK, are you caught up on the background info? Good.

His surgery should take about 2 hours, so I've been told. But you never know... I'll try not to be too worried when the second hand passes his two hour mark and I've still not heard anything about my baby. I hate picturing him on the OR table, knocked out, and being worked on... MOVING ON!

OK so the procedure...

With his cleft/gap down the middle of his palate he does still have the sides of his palate intact. Dr. Beals (his wonderful surgeon) will take tissue and muscle from the sides of his intact palate and bring them over to the middle to cover his cleft and rebuild his palate. Dr. Beals will sew it all together closing the cleft and bringing his 2 uvulas into one. Hudson will be left with raw tissue exposed from the sides of his palate to heal up on their own. No, he will never have bone where his hard palate is and where bone should be. The new muscle and tissue will be enough for him to speak, make new silly noises, and suck through a straw.

And that's a palate repair in a nutshell. Give or take. That's from my own understanding and some online reading. Not too complicated, right?

Hudson will have a 10 day recovery period where he's only allowed his bottle and liquids. He'll also have his lovely arm restraints again. And to top it all off, no paci... Boo. His palate will be ever so delicate the first couple of weeks and we don't want to go poking holes through it now do we? Sometimes the holes do happen and that would be called a fistula. But that's for another day. And we do NOT want a fistula. It could lead to another surgery. Poor buddy. I have really high hopes for him though. For a smooth recovery. I just hope my hopes aren't too high... I expect it to be a little more rough than his lip repair. We are staying a night in the hospital after all.


He's one amazing kiddo! I've never even had surgery before! Or stitches! He's got that on me! And he's not even 18 months old. That's a lot for one little boy to handle. But he's not just any little boy...

Wish us luck!

"Out of suffering have emerge the strongest souls; the most massive characters are seared with scars."
-Khalil Gibran