Liam’s Palate Repair Surgery Part 1

January 26th.

Well somehow here we are again, on our way back to Charleston for yet another surgery. It’s still hard to believe this is our life. All the same emotions we feel. Scared, anxious, nervous, sad and so many more. It’s hard to think positive about sending your baby into surgery. After the awful recovery he had the first time around. We knew how important this surgery was for him and that’s what kept us going. We were so ready for our baby boy to have a palate; to be able to eat, breath, swallow, etc. like a “normal child”.

It was hard to keep my composure together. This time around Liam was old enough to see that I was upset and crying. Last time he was only 3 months old so he didn’t know. I tried my best to keep it together in the car with him. We finally arrived at our hotel in Charleston. We got a suite so Liam could have room to crawl around and play. We wanted to keep everything as normal as possible for him.

The night before surgery is always very difficult. You are getting tons of messages, phone calls, facetimes, etc. from people asking questions and wanting to see Liam. We did our rounds of facetimes and then kept our phones on silent to spend as much time as possible with Liam. We watched the sunset from our balcony and had our favorite deli for dinner.

January 27th.

The day was finally here. Surgery day. Liam’s surgery was scheduled to be at noon which meant we needed to be there at 10AM. Liam couldn’t have milk after 6AM so we woke him up at 5:45AM to drink his last bottle. Emotions were high. It was extremely quiet in the hotel room that morning. I didn’t really say much. It’s such an unexplainable feeling. We went downstairs for breakfast and ate separately so one of us could be with Liam; he couldn’t eat so we didn’t want to eat in front of him. This time around he wasn’t the first surgery of the day. We really wanted to make sure Liam napped because surgery always gets pushed back and we didn’t want him to be really fussy during preop. We finally got him down for a nap around 8:15AM.

During my shower I lost it, completely lost it. I just was in disbelief about what he was about to go through. Our surgeon warned us that this surgery and recovery would be worse than lip repair. I was terrified beyond words.

My husband and I both wore our Liam shirts. After my shower, I sat on the bed and checked social media for the first time. All the posts wishing Liam good luck. Here come the water works. I had to literally put my phone in the other room to stay off of it. Some many people were texting, calling, messaging us. It was so overwhelming at the moment. As much as we appreciated it, it was just too much for me.

9:30AM.

We had to be at the hospital in 30 minutes so it was time to wake Liam up. We got him dressed in his onesie that says “Out of my way, I get my complete palate today”. It was so surreal. We took a few pictures and then headed to the car. The sweet receptionist wished us good luck on the way out.

10:00AM.

We are here, back at MUSC for another surgery. We checked in and walked up to the 4th floor. Checked in there and waited for the nurse to call us back. Liam was crawling around the floor smiling and waving to everyone he saw. He had no idea what he was about to go through. Do you know how heartbreaking that is?

“This must be Liam!” the nurse says as he walks into the pediatric waiting room. He escorts us back to preop. We weigh Liam, go over the usual questions and change him into his hospital gown. At the point, he is hungry. The nurse gives him some toys to play with. He wasn’t having it so my husband and I took turns walking up and down this tiny hallway.

11:00AM

The residents start making their rounds in to talk to us. We go over the surgery, go over the what if’s and sign the consent forms. It starts to get real. Whenever the residents start coming in you know it’s almost time.

The anesthesiologist is in now. They go over what will happen. They ask if there have been any complications in the past. We told them that he did have a difficult time coming out of anesthesia his first surgery. They then said that they will give him a medicine that will make him have a “drunk” feeling just before going back into the operating room. This is so that he doesn’t really know what’s going on when they take him back. This was not what I expected. Last time I went back with him into the operating room and was back there the entire time until he fell asleep. This time they didn’t want anyone to go back with him. My heart broke. I always said to my husband that I never wanted him to feel abandoned. My husband and I both agreed that I would go back with him. We assumed that it was aloud because it was the first time.

It was our surgeon’s turn to come by. She asked how we were doing. She went over the surgery and what would happen. She told us surgery would be around 4-5 hours long. She then said her famous words, “I don’t watch the clock. If it’s past the 4 hour mark don’t panic. I don’t watch the clock, I work until I am done.” In such a weird way, those are the most comforting words.

12:00PM.

It’s supposed to be surgery time but the OR is behind schedule. We are still trying to just keep him occupied with Baby Shark, bubbles, toys, wipes, you name it we tried. It’s so difficult keeping him occupied when he’s tired, hungry, fussy and bored. He’s at that age that he knows something is going on. He remembers the hospital, believe it or not.

12:15pm.

The preop phone rang from the OR. It’s time to give him the medicine which means 30 minutes until surgery. Of course, I get emotional; I’m not ready to hand him over to them. The nurses kept telling us that the flavor of the medicine was awful and that all kids hate it but Liam took it like a champ. We were all so surprised.

After about 15 minutes you could tell it was starting to hit him. He started getting really silly and giggly. He started to cuddle with me and gives me hugs like crazy. It melted my heart. His head started to get really heavy you could tell because he kept trying to pick his head up quickly.

12:46PM.

It was time. They came to our bed and asked if Liam was ready. Instantly I lost it. I am not ready. I will never be ready. I am so upset and angry that he has to go through this, again. My heart was racing, my body went numb. My husband was just looking at me waiting for me to pass Liam to him so he could give him a kiss. I literally just held him so tight, crying. Everyone is standing there, at least 10 people waiting for me to pass him over.

It’s so awkward because they don’t know what to say so instead they just stare.

I give him to my husband. He gives him a kiss and says “I’ll see you soon buddy, I love you.” I grab him back; give him a million kisses, soaking his face with my tears. “I love you baby. You will do great, we will see you soon. Stay strong, you are so brave baby.” I hand him off to the nurse and just lost it.

Liam was so out of it from the medicine that he just thought the nurse’s face mask was cool. They walked through the double doors as Liam is giggling with the nurse. I just fell into my husband’s arms sobbing. My heart was broken for so many reasons. I couldn’t go back with him. He was with complete strangers. He was going into surgery. What if something goes wrong? So many things run through my mind. The nurse gives us time to get our composure before taking us to the waiting room.

12:51PM.

The nurse escorts us into the waiting room. Here I am, swollen red eyes with tears still strolling down my face walking through the hospital halls. We get to the pediatric waiting room area and I’m trying so hard to get myself together. It just doesn’t get easier. Sending your baby into the OR is a heartbreak I wish on no one. It’s devastating. My husband is trying so hard to be supportive and reassure me that everything will be okay. Nothing at that moment could make me feel better though. I instantly had the worse headache so we went downstairs and bought some Tylenol.

My husband bought lunch and made me eat at least a chicken nugget or two. While in the cafeteria the OR called to let me know that Liam was doing well and was wrapped up in a blanket on the table. She told me that he went under anesthesia well and his vitals were stable. She said that they were replacing his ear tubes and then starting on his palate. What a huge relief to know that he is okay.

My husband finished eating; I got a Mountain Dew because I knew we were in for a long day and we headed back up to the waiting room.

Every hour the nurse from the OR called to update us on Liam’s vitals and how everything was going. They also would tell us that everything is on schedule so we always thought “okay, maybe this will actually be 4 hours long!”

A few hours pass.

My husband is trying to nap on the rock hard bench they had in the waiting room. I am of course pacing back and forth waiting for another call from the OR. Chugging water, trying to get rid of my headache.

Waiting helplessly while your child is in surgery for hours is the absolute hardest thing ever. I mean what do you do? You can’t focus on anything. You can’t hold a conversation without tearing up. All I did those hours were look at pictures of Liam, walk the halls for hours, wait by the phone and constantly ask for more tissues.

5:00PM.

It’s now the 4 hour mark. We are thinking that he is towards the end of surgery. My phone rings and the nurse says that surgery is taking longer than expected. My heart dropped we instantly thought something was wrong. She assured me that Liam was doing great but that they would just need more time.

My husband and I both sat there for a few minutes, trying to think of why it’s taking so long. But then he said to me “She always says I don’t watch the clock. She’s just taking her time.” This was so true. She says this to us every single time we see her.

5:30PM.

We are again the only family left in the waiting room. It’s quiet; everyone had left to be with their loved one who just had surgery. At this point we have already gotten our bags from the car because we thought Liam was almost done in surgery. The receptionist came over and told us that the waiting room was closing for the evening and that she needed to take us to another room.

6:00PM.

The OR calls and tells us that they are halfway done with surgery. They said he is doing great, he is stable and that his vitals are good. We are shocked because we thought that he was at least halfway done with surgery. We try not to worry too much but easier said than done. We decided to go down to the cafeteria and grab some dinner to bring back up. We knew that this would be the last time we got a chance to eat. I maybe ate a few fries and 3 chicken nuggets. I was just so sick to my stomach worried.

I paced the halls, back and forth. Watching the janitors go in and clean the waiting rooms and hallways.

7:00PM.

It’s the hour mark to hear from the nurse but they haven’t called. I start to get worried. My husband tells me that they are probably finishing up surgery and that’s why they haven’t called yet. I started walking the halls praying to see our surgeon.

A few minutes later there she was, as I’m walking back into the room, I hear “He’s okay.”

HE IS OKAY!

I took a deep breath and called my husband out into the hallway so we could talk to her. She told us that everything went well and that nothing unexpected happened. She said that she had to do a lot more work than she expected because of how wide his cleft was. That his cleft was one of the widest clefts she has ever worked on. She warned us that he will be in a lot more pain that expected. She assured us that they would keep him in the hospital as long as he needs to control the pain.

7:43PM.

The nurse took us back to Liam’s recovery room. He was still trying to wake up from anesthesia. He attempted to cry but his face was so swollen. I picked him up and sat with him to try to comfort him. He started to really cry so we tried to give him a bottle. He drank about an ounce or two but started to really get upset so they gave us Tylenol in a syringe but he couldn’t take it. We requested IV Tylenol. At this point, he was so out of it and started to dose in and out of sleep.

We were transported upstairs to our room.

This first night was awful. He cried in pain for hours. He even cried in his sleep. It was the heartbreaking moan. We took turns holding him and trying to calm him down. They gave him Morphine to try to help with his pain. We tried to feed him throughout the night but he wanted nothing to do with it.

It was a sleepless night for all of us. It was so much harder than we expected. I cannot tell you how many times I cried that night. You could tell the nurses just felt so helpless. There was nothing they could do to help us other than make sure we were mentally okay.

January 28th.

Liam has literally been screaming 24/7 since surgery, even in his sleep he would cry. It was awful. We were the very last room down the hall and the nurses could literally hear him at their station. We thought maybe if we took Liam to the Atrium and give him a new environment it would help keep his mind off the pain a bit. He couldn’t really play because of his no-no’s and IV. But we just walked around with him for a little bit. Let him look outside.

He still refused to eat anything. He was on IV Tylenol because he couldn’t take it from a syringe. They still wanted to give him Morphine but my husband and I did not want him on Morphine around the clock for a couple of reasons. One, it only lasts about 30 minutes and then he’s back in intense pain. Two, Morphine is just such a strong medication for a baby and it just doesn’t seem right to have a baby on it around the clock for that long. We knew from his first surgery that Oxycodone works well for him and his pain. I requested that the doctors ordered that instead. Of course they came back and told us that they wanted to keep him on Morphine.

It’s difficult because the hospital is a training hospital. We have to go through residents instead of strictly through our surgeon. This is one of the most frustrating things because they don’t know Liam like we do or even like our surgeon does. While I understand they are still doctors, it’s difficult working with them. Especially when you don’t see the same ones each time. When your baby is in this much pain you’ll do anything. We requested that they call our surgeon and ask her about the Oxy. We went through this the first surgery too so I knew that was what it was going to take for his medication to be switched.

January 30th.

Finally Liam’s medication was switched to Oxy along with Tylenol and Ibuprofen around the clock. This made a world of a difference. Within the first couple of doses of it Liam was attempting to take his bottle. This was a huge step and the first time he even gave it a chance since surgery.

Unfortunately Liam still didn’t eat much at all. We tried all different types of feedings techniques and foods. We tried every cleft bottle there was, Jell-O, pudding, water, Pedialyte, a syringe, a cup, his sippy cup, etc. He refused. I mean straight up screaming and crying.

One thing we learned from his first surgery is that forcing him to eat just makes it worse. So we offered it constantly but didn’t want to make him feel forced because then he would grow a food aversion.

At this point Liam was very dehydrated. Even on IV fluids he was only having 2 wet diapers in a 36 hour period. His body was holding in all the fluids. Luckily, his pain was being controlled much better with the Oxy. He even peeped a little smile!

January 31st.

It’s been rough. No sleep, at all. Liam still was not eating or wetting diapers. They had taken him off IV fluids around 3AM to try to get him to get the hunger sensation. No one knew what else to do. We were all puzzled. The speech therapists came by to make sure he wasn’t aspirating while trying to drink from his bottle. They assured us he wasn’t and that he wasn’t eating because of the pain.

His surgeon came by and told us she wanted to do a leap of faith and discharge him. She felt that there wasn’t anything more they could do at that moment. That he would do better at home and hopefully eat in his own environment. She said that she couldn’t promise us that we wouldn’t be back but that the hospital environment was starting to play a factor. She was right about that part. Liam wasn’t getting sleep but when he was actually sleeping he would get woken up by nurses and doctors. She told us that if he did not have 4 wet diapers within 24 hours that we needed to take him to the ER for fluids.

She could see all over my face that I was not okay with this decision. I voiced that to her and my husband. He wasn’t wetting diapers, he was dehydrated, he wasn’t eating, he was still in enough pain to the point that he was still refusing to eat… I could go on and on. But the point is that I was not comfortable with the decisions even one bit. This was the first time I ever questioned his surgeon’s decision and I hated it. I instantly started crying. This is what happened his first surgery and we ended back up in the hospital. I didn’t want him to have to go through that again.

My husband agreed with our surgeon though. After discussing it with him we decided to give it a try. I was not even one bit comfortable with it. I was going against mama instinct but I know his surgeon knows what she is doing. This is her job. She has his best interest at heart.

I trust her with my son’s life so I for the first time went against my gut feeling.

I did request that they give him another bag of fluids to hydrate him before we left. After going back and forth with the residents about why we wanted it they finally agreed. It just didn’t make sense to us for them to send him home dehydrated – that’s like setting him up for failure.

8:45PM.

We were discharged. I was terrified and knew in the back of my head that we would be back. To this day I wish I would have stuck with my gut and refused to let them discharge him. But it’s hard when you and your spouse feel differently about it. We have to make decisions together.

The drive is 2 hours long. Liam thankfully slept for about 45 minutes of it and the rest of the time I just sat back there trying to keep him content.

We got home and tried to feed him peas (his favorite at the time) in his high chair. We wanted it to feel normal to him but instead he screamed. We took him up and gave him a bath and put him in his pajamas. We tried to put him down but that wasn’t happening. He would not stop crying. We had no idea what else to do. We didn’t know how to help him other than give him his scheduled pain meds and offer a bottle/food to him.

I think this was the first time my husband questioned leaving the hospital.

We finally got him asleep around midnight but we ended up waking up every 30 minutes that night. Every 30 minutes, screaming in pain. We felt horrible. There was absolutely nothing we could do to calm him down other than just walk and sing.

February 1st.

The one thing I feared leaving the hospital happened. We had to rush Liam to our local ER.

Liam spiked a fever of 103 even with being on Tylenol around the clock. Liam also only had 1 wet diaper and 4 ounces to drink since leaving the hospital the night before. He had a cough since surgery but we just were under the impression that it was from the breathing tube being in his throat for so long during surgery. They noticed inflammation in his throat and decided to do a chest x-ray to make sure he didn’t get pneumonia or fluid in the lungs which can happen from being in surgery for so long. Luckily, Liam didn’t have pneumonia but did have a virus of some sort. They couldn’t tell us what virus but just that he had one.

They called our surgeon’s hospital, MUSC and spoke to the doctor on call about his dehydration. They advised them to give him IV fluids because of how dehydrated he was.

This was one of the hardest few hours of our entire lives.

THE MOST HEARTBREAKING HOURS OF OUR LIVES.

They attempted to give him an IV five different times. They failed every single time due to his veins being so collapsed from dehydration. I’ve never in my life seen our son like that. I’ve never seen him nearly passing out from being in so much pain and stress while trying to get an IV.

My heart breaks just thinking about it again.

It was the worst thing I’ve ever seen. My husband and I were just lying there with him trying to talk him through it while they attempted each time. We knew how important it was for him to get fluids so maybe just maybe we could avoid getting admitted back into the hospital.

After the 5th time we told them that it was enough. We couldn’t watch him go through that anymore. There was just no way. I honestly don’t think he would have been able to handle it. His eyes were rolling into the back of his head.

They discharged us and told us if he did not start eating within 24 hours that we needed to take him back up to MUSC.

This had been the absolute hardest week of our lives and it just wouldn’t end. It kept getting worse.

February 2nd.

Liam still wasn’t eating. He still had a fever. He was still on pain meds including Oxy around the clock. We were trying everything possible to get him to eat. He was still in a lot of pain but he would play with his toys every once in a while for a little bit. He still wasn’t sleeping, like at all. My husband had to literally lie in his crib with him just to get him to take a 15 minute nap.

My husband and I decided to give him a full 24 hours of being at home before taking him back to the hospital. We wanted to give him a chance to decide to eat/drink on his own. We were hoping that maybe he would realize that he was hungry and wanted to eat.

We were hoping that our surgeon was right and that being at home would help him.

February 3rd.

Liam was admitted back into the hospital to Charleston. This is exactly what I was trying to prevent by not going home in the first place.

When our surgeon called us that morning and advised us to go back up to MUSC she told us that we just needed to go into the ER and get fluids. We were under the impression that we were coming home that day.

Man were we wrong.

We arrived at the ER. He still had not had more than 7oz. that day. He still had a fever of 103 so they did another chest x-ray along with a test for the Flu, RSV and all other common viruses. The x-ray showed a virus but the test came back negative for everything.

This was so weird to us that he had such a high fever with no other symptoms and all the tests came back negative. What could it be? I kept asking the doctors and my husband this. They just kept telling us it was some sort of virus.

The main concern to them was his dehydration and the fact that he had such a high fever for over 72 hours now that wouldn’t break.

The nurse came in and mentioned an “order for a bed”, we had no idea we were being admitted. No one told us that it was even a thought, let alone an order that was already put in. We asked if we were being admitted and she said “no one told you yet?”

We were shocked.

We knew it was the right thing to do but just didn’t expect it because we were told we were just going in for fluids. Our surgeon is the one that made the call. She wanted to observe him for what we were told would be one night. She wanted to give him fluids overnight in hopes it would “reset him”.

We didn’t bring anything. No clothes, no extra formula, no toothbrushes, nothing. I ran to the hospital gift shop and grabbed toothbrushes for us and a few other things. I called my sweet friend that had been staying at my house with our dogs after his surgery and asked if she could stay at my house with the dogs again for the night.

We got to our hospital room which was on the Infant Care Unit. The same unit we were in for his first surgery. It was so hectic because we got up there right during shift change.

They finally got a chance to come in. They checked his vitals and gave him more Tylenol to try to get control of his fever.

Later that night his fever finally came down to 102. It wasn’t much but it was a good sign that maybe his fever was finally starting to break.

February 4th.

Liam still wasn’t eating. He still had a fever. They still had him on IV fluids. The doctors never came by to talk to us that morning. No one said anything about being discharged.

We quickly realized that we were not getting discharged that day.

We were still in the same clothes from the day before so my husband went down to the gift shop to buy us both a pair of pajamas so I could at least use the hospital washer and dryer to clean the clothes we were wearing.

$65 we had to spend just to get pajamas from the hospital gift shop. It was so ridiculously expensive but we had no choice – we had to wash our clothes.

Around 7:00PM one of the residents finally came by to check on Liam and to see how his day went. He explained to us that they were not comfortable sending him home. We completely agreed with them – he wasn’t eating or even attempting to eat and still had this unexplained fever. We were just very shocked because we didn’t expect to be admitted let alone there for days.

Well what we thought would be days…….slowly turned into weeks.

*part 2 of my blog will go into Liam’s recovery, what went wrong and why we were in the hospital for so long.