12.19.2011

Liam's Smile

Oh my, what a journey we experienced the past couple of months. With Liam's surgery seeming all too close yet very far away, we distracted ourselves as much as possible, remodeling the kitchen, installing a new bathroom vanity, and spending time with friends and family. Two weeks before Liam's scheduled surgery, we put our family on lock down. No one went anywhere unless absolutely necessary (i.e., going to work). We were trying to prevent any illness from sneaking its way into our home. We found lots of ways to stay busy and have fun indoors, like building tents.



We also had fun introducing lots of new foods to Liam's diet: butternut squash, sweet potatoes, acorn squash (a strange looking vegetable but very delicious!), pumpkin, green beans, pears, and applesauce. Liam had a really hard time pushing out his tongue the first couple of weeks he tried solids. Plus, because his lips couldn't close completely, food would slip out of his mouth. It was then that I knew we had to go through with this surgery.


Monday evening, two nights before surgery, Ryan and I were getting ready for bed when we heard this terrible barking cough. At first I couldn't believe it. I thought it was my ears playing tricks on me. We had isolated him for two weeks. How did he get the worst-sounding cough imaginable?! Ryan stood in the bathroom with a hot shower running so that Liam could breathe in the steam. Unfortunately, he only sounded worse, as the steam probably broke up some of the junk in his chest I just wanted to throw up my hands because we had done everything "right" to prevent that from happening. God had truly given me peace in my heart the week before that Liam was going to be fine and go through his surgery as scheduled. I couldn't make sense of the fact that he was sick. We prayed and prayed and prayed some more. Some of you reading this even prayed for him (THANK YOU!). The next morning, when I spoke to the nurse practitioner, Pat, she heard Liam coughing and became really concerned, too. She said unless he got worse to go ahead and bring him the next day as planned with the understanding that they could send us home. After all the preparations we had made and the strong desire to just put this whole thing behind us, we prayed and prayed some more that it would be safe for him to go through the procedure. We got the call that afternoon, telling us details about the latest Liam could have breast milk and pedialyte. After enjoying the day as a family, we fell asleep praying for all to go as scheduled the next day.


The next morning, Liam's feeding schedule went perfectly. He had never had pedialyte before and seemed to like it just fine! Ryan's parents came down to watch Noah and Kya (THANK YOU AGAIN!) and snapped a quick picture of our family before we left for Riley's Children's Hospital. When we first reached the Main Day Surgery area, we saw a pastor from our church waiting in the lobby. That was the first time I felt emotional that day because it hit me - we were in a situation where a pastor comes to the hospital to visit. We checked in at Main Day Surgery without any trouble and walked back to our little "cubicle," which was a small open room that could be made more private with a curtain. This waiting area was filled with small rooms just like it, lining up and down the hallways. Liam woke up right when we walked back there, so we weighed him, took his blood pressure, temperature, etc. and got him dressed in his hospital gown.

Seriously, how cute is this smile?
Liam was a little angel the whole time we waited. We spoke again to Pat, the nurse practitioner, met the anesthesiologist (Dr. Hamilton, who was absolutely wonderful to us!), Dr. Havlik, and other members of his team. After meeting with everyone, reality hit us. This surgery was going to happen. I felt such peace and happiness, so thankful for God's answer to our prayers. We took the next 30 minutes to just snuggle with Liam and enjoy his beautiful smile just a bit longer. For only 10 minutes of our entire wait did he get fussy, and we knew it was because he was hungry. Ryan wrapped an Operation Smile blanket around Liam and me, and I just sang "Somewhere Over the Rainbow" to him over and over again. He sucked his thumb while I just got a last few snuggles in. Then, two nurses came to take him to surgery. One, whose name was Angel (coincidence?), spoke to us and said that she had a little one at home Liam's age. That put my heart at ease. Another mom was going to take care of him and make sure he wasn't afraid. Ryan and I gave him a few more kisses and away he went. For the first time that day, I broke down. I knew everything was out of my control - that we had done everything we could to make sure he had the best care - and the rest was up to God's plan. Ryan and I held each other a bit behind that curtain, collected ourselves, and walked up to the waiting area where we spent the next 2 hours of the day.


We found my mom and my grandfather waiting for us. They were a good distraction for us, and we had a couple of sandwiches we had packed earlier that day. After the first hour of waiting, a nurse came by to give us the update that Liam was doing great in surgery. He didn't fuss once when they took him back before putting him under anesthesia. What a trooper! He was resting peacefully while Dr. Havlik was hard at work. After hearing the good news, it hit me even more that this was really happening, as strange as that may sound. Ryan and I took a walk around the hospital and visited the gift shop. We went back to the waiting area, and before we knew it, Dr. Tholpady (one of the doctors who works with Dr. Havlik) greeted us and told us that everything went great! Dr. Havlik had a meeting to attend right away but would visit us later in the evening. Again, I was elated! Liam had made it out of surgery, and everything had gone as well as they hoped.


We got the call about 15 minutes later that we could go visit Liam in recovery. This was a large open room with several children coming out of surgery and 1-2 family members around them. Ryan and I were led back to Liam's hospital bed, and we had completely different reactions upon seeing out little boy. I just stared at him in amazement, as he had SURVIVED (Yes, I know that is silly given the type of procedure he had, but that was my reaction).  I had these terrible thoughts plaguing me leading up to the surgery that he'd never wake up. He made it through the surgery! It wasn't until I saw Ryan's face and his reaction that I could see all of the wires, bruises, swelling, etc. all around him. Ryan was very overwhelmed with how beat up Liam looked. Then, I could finally see it, too. He did look like he had been in a car wreck or a really bad fist fight. They explained that they put a nerve block in each side of his face, which was causing the black eyes. Ryan excused himself so that my mom could come see Liam quickly before heading home. She noticed immediately how much more Liam looked like Noah, and she was right! Between the lip being closed and his swelling, he looked more like Noah than ever before. Mom said her goodbyes, and the recovery nurse ushered us to our final room where we would spend the next 16 hours.


This picture above was taken right after we got to our room after being in recovery. We LOVED our nurses during our stay. They were both so wonderful to us and were especially sweet with Liam. Ryan was very overwhelmed by the IV and other wires attached all over his body. Those were all quickly taken off once he was doing so well. Our nurse warned us that feeding would feel quite different to Liam and to expect him to be fussy when eating - that maybe he wouldn't want to eat at all. We gave him two ounces of pedialyte by bottle, and he sucked it right down. Hallelujah! Our nurse said to go ahead and try to breastfeed him, and to be honest, I was really scared. I didn't want anything to hurt him. I knew that babies didn't really use their upper lips to "suck"; rather, it was more or less a seal when nursing. Still, I just didn't want him to be in pain. Then, another prayer was answered when he latched on without any difficulty and starting eating. We estimated that within those first two hours that he took in 14 ounces of breast milk and pedialyte. Our little guy was hungry!


The next several hours went by so slowly. Liam slept, ate, cried, repeat for the next several hours. Neither Ryan nor I were prepared for the recovery part of this experience. We spent so much time preparing that we didn't give the recovery much thought. I ordered some chicken noodle soup and a grilled cheese for dinner, and Ryan grabbed some McDonalds. I spent the majority of my time holding Liam, as he seemed most comfortable being held. Plus, let's be honest, I couldn't put him down. Dr. Havlik and Dr. Tholpady came by to see us. We thanked them for helping our son and other than that, I have little memory of our conversation. Liam's behavior was so odd on the Vicodin. He just stared straight ahead, never smiled, and just seemed very much in another world. It's hard to see your baby like that when you are used to smiles all of the time. His throat was very scratchy from being intubated, too. He really sounded and looked so pitiful. I stayed awake holding Liam as still as possible until I exhaustion finally overcame me. I put him in his bed and got about an hour and a half of sleep. I fed him and held him for a couple more hours and then was able to get some more sleep.



The next morning at approximately 6:00 a.m., Dr. Havlik, Dr. Tholpady, and a med student greeted us. They said Liam did great overnight with eating and managing his pain, so we were free to go home whenever we liked. We couldn't believe the good news, and as much as we loved everyone we encountered during our time at Riley, we were very, very ready to go home!

The next four days are a blur. I didn't take any pictures. Honestly, we were really just surviving at home. Liam's pain was managed with Tylenol with Codeine, and he really needed that level of pain medication until Day 5. We tried to take him off it sooner, but he just wasn't a very happy guy. One of the most difficult parts of his early recovery was that we could not allow him to roll over in bed. It would be too risky for harming the intricate work Dr. Havlik had done to make his smile so beautiful. So, we slept with the monitor as loud as possible, and anytime he moved to turn over, Ryan was running into the nursery to turn him back on his back. That worked fairly well until we took him off the heavy pain medication. On just regular Tylenol, he was much more alert and did NOT want to sleep on his back anymore. One of us pretty much held him anytime he was awake, as he couldn't play with any of his toys and risk hurting his mouth. My mom and her husband kept Noah overnight the second night we were home, which was a huge help (Thanks again!!). However, after he came back home, Noah was the best big brother you can imagine. Every time Liam would cry when we cleaned his stitches or put bacitracin on the incision, Noah would sing to Liam, who would then immediately calm down. Love my Noah!


The Monday after Liam's surgery, we had to go back to Riley, back to Main Day Surgery, to get his finishing, outer stitches out. He was put back under anesthesia, though this time he was just "masked down" because the procedure was so quick. The night before, Liam truly did not sleep AT ALL. It was a combination of not being allowed to roll over on his tummy and being SO used to being held all of the time, I think. My mom stayed the night that night, and Ryan and I ended up leaving the house around 4:00 a.m. just so Liam would sleep in the car before the procedure. We drove around downtown Indy for literally 1 1/2 hours. It was awful! We were exhausted and so ready for all of this to be behind us. Thankfully, Liam slept the entire time in the car. Our friend Lisa who works at Riley met us in our "cubicle," and immediately our hearts were put at ease. It was almost worse the second time around being there even though this procedure was nothing compared to the one he had just had the week before. We again met the anaesthesiologist, Dr. Tholpady, Pat Terrell, and Dr. Flores the plastic surgeon doing the procedure since Dr. Havlik was taking time off for Thanksgiving. The stitches were removed quickly and after a longer wait than we would have liked, we got to see Liam in recovery. He again quickly took pedialyte without difficulty and nursed easily. They let us go home about an hour after he finished in recovery. Dr. Flores, Pat, and Dr. Tholpaddy all said he could roll over on his tummy again for sleeping but that he still had to wear the elbow restraints at all times. No pacifiers allowed still until 4 weeks post surgery. Here is a picture of Liam after the stitches were removed.


I regret, somewhat, not taking many pictures those first 5 days. His poor face was so swollen, making his nose look flat next to his cheeks. His upper lip stuck out like a duck bill. It was really heartbreaking to see him like that, though we knew it was temporary. Those days really were a blur! After the stitches were removed, he still had the nose stint in place in order to prevent his nostril from collapsing. Dr. Havlik didn't have to do any formal rhinoplasty, as his nose was quite symmetrical after moving the lip together. That was a huge blessing! We were scheduled to return to Riley December 12th to get the stint removed in the outpatient center. Funny, though, that two nights before our appointment Liam actually sneezed/coughed the stint right out of his nose while celebrating Christmas at my dad and Danette's house. It was awesome knowing it was in the right amount of time and that no one would have to hold Liam down while they snipped the stitch holding the stint in place. We still went to the appointment in order for Liam's progress to be seen.


We got to see Pat, who is an absolutely wonderful nurse! I believe she has worked with Dr. Havlik for 30 years or something like that. They make a great team!


Although this picture is not completely in focus, I adore it. Liam was just staring at Dr. Havlik while sitting so relaxed in his arms. It was a precious moment.


Here is a picture of Liam with the entire team (Dr. Tholpady in blue). We are so fortunate to have health insurance, a world renowned hospital so close by, and a very talented team of people to help Liam's smile be as beautiful as possible. However, if we are being 100% honest, I very much miss and sometimes even grieve the loss of his "old" smile. It really was beautiful. I have never been so thankful to have so many pictures of my kids to remember it. We thanked Dr. Havlik for all that he did for Liam and told him how pleased we were with the results. I remarked at what beautiful work he did. Dr. Havlik smiled and thanked us. He was so kind, and I can only imagine the pride he must feel about the work he does. He changes people's lives, and I am beyond grateful for what he's done for my son.



Thank you, God, for bringing this team of people into our lives. Thank you, God, for protecting our son. We pray for continued patience as he continues to heal even more. For those of you still reading this very lengthy post, will you please pray for a few things, as well?

1. God helps heal Liam's lip in a way that would not require any future procedures.
2. Liam experiences little pain once we can start massaging the scar tissue. 
3. Liam's smile be something he loves someday, something that he feels proud to have. 
4. Liam's teeth come in normally, as children with cleft lips can often have dental issues. 
5. His peers are kind to him as he grows older.
6. If they are unkind about this cosmetic issue, that Liam have the courage, strength, and wit to forgive them, love them, and feel good about the way he looks anyway.

And they all said, Amen!

5 comments:

Lauren said...

What a precious post, Amy :)

Anonymous said...

Amy, I had been checking back to see how things went. I am so happy for you and your family, and I am sure you are pleased to have this behind you. What an inspirting story for others! Enjoy your Christmas together!

Anonymous said...

Amy, I have been checking back to see how things went. I am so glad to see they went so well. It was very courageous of you to share this with others, and I am sure your story will touch many other lives! Enjoy Christmas with your family!

Molly said...

Thanks for this post, Amy. It was great to read all about the surgery as we anticipate bringing home a daughter with cleft lip and palate. I appreciated that you also shared your regrets about not taking more photos...I will be sure to take photos in the days after surgery now. It was good to see the photo with the surgical team, too...I might not have thought to do that but now I will! It was also great to see your smiling face...now I can picture you when I pray for you!

Angie said...

reading this while waiting to go into recovery to see jt. :) so glad to hear how your experience went! thanks for sharing, amy!!!

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