The day we’ve been dreading since we found out about Liam’s cleft was finally here. We were less than 24 hours away from his surgery and I still sat there wondering how the hell we were going to send our baby into an operating room. My anxiety was through the roof for weeks leading up to his surgery – so bad I was put on medicine to try to ease it. I felt every emotion you could ever think of. I remember staring at him and just crying. What will he look like? How will recovery be? Will he eat? What if something goes wrong? How is it already time for surgery? I kept asking my husband over and over again if we could reschedule the surgery. Selfishly wanting to take him and run far away. But I knew this was medically necessary to better his life – his breathing, his eating, his everyday living.
The day before surgery
Waking up that morning, our house was very quiet. It was so bittersweet. Emotions were high. We changed Liam’s NAM and tape for the very last time ever. Even though he had no idea what we were saying, we were sure to tell Liam that we would never have to put that horrible thing back in his mouth…ever. I got together last minute things to pack for the hospital and hotel. We packed plenty side snappy jammies, white noise machine, bibs, spit rags, his blanket, his bottles, and 2 outfits for us. We had no idea that we would need 4 extra days worth of clothes. We were under the impression that we would only be in the hospital one night. We loaded Liam into the car and drove 2 hours to our hotel in Charleston. I literally cried the entire drive. It just wasn’t fair. Why does our baby have to go through this? Why do we have to change his sweet smile that we have fallen completely in love with? I felt so angry and sad. Why Liam? Once we arrived to the hotel, we took Liam downstairs to the pool. We wanted to make sure to enjoy his last night together as a family before surgery. He loves swimming in pools so what better way to spend our evening!
Liam wasn’t aloud to have any breastmilk after 3am which is normally when he wakes up to eat so we tried to wear him out in hopes that he would sleep through his normal feeding time. It seemed like time was just flying by that night. Every time I looked at the clock I begged for time to slow down. Bedtime came quick – we put Liam to bed and I just sat there staring at him while he slept. My heart literally was breaking for him. He had no idea what he was about to go through. As excepted I couldn’t sleep, I sat there in the dark while Liam and my husband slept just dreading 5am. Conveniently Liam woke up right at 2:41am so he had exactly 19 minutes to drink his last bottle. We had no idea this was the last time he would eat for over 24 hours. Liam went back to sleep and I finally fell asleep around 3:30am and a hour later our alarm went off.
The morning of surgery
Going off one hour of sleep – I went down to the lobby to get coffees. It was so early that the hotel staff members were still preparing breakfast. We quietly got ready, trying not to wake Liam as we knew he would want to eat. Once he woke up we took his NAM out and tape off for the very last time – putting his “I get my forever smile today” onesie on. I bet you can guess what happened next huh? This mama started hysterically crying.
It was finally the day of surgery… HOW?! We loaded him into his car seat and drove 10 minutes up the road to the hospital. The hospital has this chalkboard wall when you walk in that everyone writes on when they visit. So we wrote “Liam gets his forever smile 6/28/19 <3″ and took our picture in front of it. It was so surreal.
Quietly walking to the “Surgery Check-in” desk… Liam still getting stares from strangers. Usually I get so bother when people stare at Liam but this time it didn’t bother me, I was so out of it. The nurse took us back into the pre-op room – surprisingly Liam was asleep despite not eating for hours.
Our surgeon and her nurse came in and went over the risks of surgery with us. We signed what felt like the 100th consent form for surgery. Putting his hospital gown on, my whole body went numb. I couldn’t believe he was about to have surgery. His whole face was going to change. I love his cleft smile so much. I was so sad knowing this would be the last time I would ever see his cute little cleft smile. That’s what made him Liam, I didn’t want it to change. I felt like I was going to meet my son all over again.
After about a half hour Liam woke up – crying and starving. The nurse brought toys over so we could try to entertain him. The anesthesiologist and other nurses came over to talk to us. I tried so badly to hold back my tears. Even though he had no idea what was going on, I didn’t want to cry in front of Liam. I asked if I could go back into the O.R. with him until he was asleep. There was no way I was letting him go back alone. Putting him down on that table, seeing the mask over his face – I will never forget that feeling, I can’t even explain it. I couldn’t stop crying – my tears were just falling on the operating table as I was talking him through all the cries until he fell asleep. That’s it, he was finally asleep. I gave him a kiss and walked out. I lost it. There was no going back. I just left my 3 month old baby in this huge, scary, cold operating room with a bunch of strangers. I just fell into the nurses arms. My heart broke all over again, I literally felt it break.
After getting myself together a little bit, we were taken to the waiting room. We were given Liam’s “patient number” where we could track his surgery progress on a TV. At the time we were the only ones in the waiting room. Hours and hours went by. Families came and left. The nurse called to let us know that everything was going well. We tried to keep ourselves busy, that seemed impossible. I couldn’t stop staring at the TV screen waiting for his number to say “in recovery”. Every time I went to pump I was terrified something would happen while I was gone and they wouldn’t be able to get in contact with me.
It’s now been 5 hours and I haven’t heard anything for awhile. Every single scheduled surgery that day was over – all the families left and we were alone again. I started pacing up and down the hallway. I heard our surgeon’s voice say “he’s okay”. I felt such relief. She sat down with us – told us he was still in surgery. That they were just finishing his stitches and getting ready to take the breathing tube out. She went over how to care for the ear tubes they put in, that he would have to come back in a week to get the stitches removed. Most importantly that everything went as planned.
As she was walking away – her pager went off and she started running back towards the O.R. As any parent would, we started to panic… our son was the only patient in the O.R. We knew this because all the surgeries for the day were in recovery according to the TV. So here I am trying to act like I am not about to have a panic attack, pacing the hallway again. Come to find out later on Liam experienced what is called Laryngospasm. This is when the vocal cords spasm and the airway starts to close during the removal of the breathing tube.
The recovery room
10 minutes later, they call from the PACU and say that only I can go back. This was concerning and upsetting to us because every other patient’s whole family went back. So why just me? I of course started to panic, my husband upset and asking why he is not aloud back. I told Mitchell “let me go back there and see what’s going on and then I will tell them to let you back.” I felt so bad, I couldn’t imagine sitting back in the waiting room while he went back. Immediately once we hit those PACU doors I saw the hospital crib and 7 different nurses around Liam. He was moaning in pain, he couldn’t cry. All I remember is running to him so quickly. They looked at me and said “we cannot get him to calm down”. I responded “give him to me”. I was upset – they were trying to feed him sugar water out of a normal bottle. Liam has to have a certain bottle because he doesn’t have suction. They should have known this. In my mind shoving a bottle in his mouth right after waking up for anesthesia with an new lip that is tight and swollen is not okay. He isn’t used to it, it’s heavy to him – it hurts. He has no idea where he is, where his mommy and daddy are or what’s going on. I was so concerned and upset I didn’t even get a chance to look at his new lip. All I could think about was “calm him down, comfort him, he needs you“. I tried rocking him, singing his favorite song, kissing him – nothing was calming him down. I started to cry, my poor baby. The rushed another dose of Morphine in his IV. I demanded that they let Mitchell come back. He was his father, he deserved to be back here with us. They said they didn’t want to upset Liam anymore by having another person in there. Eventually the Morphine hit, Liam finally calmed down and the allowed Mitchell back. After one hour of observation they put Liam and I in a hospital bed and wheeled us off to his room.
The first night after surgery
His room was painted dark purple, I will never forget how dark and depressing it was. It’s now been over 12 hours since Liam has had anything to eat. We tried to feed him in hopes he would eat while still on the pain medicine. Our surgeon ordered him to only be on oral Tylenol. In the back of my head I knew this wouldn’t be enough to control his pain, I told the nurse this. He would take Tylenol on his bad days with the NAM and it only helped so much. So here we are trying to shove a syringe in his mouth straight out of surgery because they wouldn’t give him any through his IV. He wouldn’t swallow, refused to open his mouth – he was screaming. As any mama would be – I was frustrated, upset, mad, felt helpless. I will never forget what our nurse did… she took his cheeks and squeezed them. She must have forgotten that he just had this huge surgery on his face… right? No, she kept doing it. I almost lost it. He was crying even harder and now spitting out all the Tylenol, not getting any of it.
Liam went over 24 hours without eating anything at all. Not only was he in so much pain from surgery but now he has this new lip that he has to learn how to use. He used his NAM as a palate when it came to eating and now he doesn’t have it. Our little guy had to completely relearn how to eat. We did not sleep more than 10 minutes that night. He screamed and screamed all night long. This was probably the hardest day/night of our entire lives. Looking at our baby who was all bloody, swollen, starving and in such a severe amount of pain… that was the most heartbreaking thing. We felt so helpless – there was absolutely nothing we could do except try to comfort him.
The days following surgery
We are now going on 49 hours of no sleep and Liam has been crying non-stop for hours and hours. They took him off the IV fluids so that way he would feel the hunger sensation and maybe decide to try to eat. That didn’t work. They gave him another dose of Morphine in hopes that he would eat and then sleep for a little bit. He did neither but at least was given a break from crying because it did help with his pain for about 45 minutes. Nothing changed for the next 2 days, Liam wouldn’t eat and was in an extreme amount of pain. We kept telling the doctors that we needed to try something different, that the Tylenol wasn’t working. They switched his Tylenol dosage from 6 hours to 4 hours. Unfortunately this didn’t help Liam either.
When I say he cried 24/7 – that is not an exaggeration. We had nothing but a hospital crib and a tiny couch so rocking him in a rocking chair was not an option. We literally had to stand and rock him the entire time. When he did finally fall asleep – the second we put him down in his crib he would wake up. The nurses were strict on not letting him sleep anywhere but his crib. It’s safety, we get it. So for Liam to sleep even just 20 minutes at a time, we stayed up all night so he could sleep on a pillow on the couch. He wouldn’t sleep without us holding him. Our backs were killing us from standing so much and from the sleep conditions. Mitchell was sleeping on the hard tile floor and I was on this tiny couch. I literally didn’t leave our hospital room for 3 days straight. I didn’t want to leave Liam with anyone, not even Mitchell. Not because he couldn’t handle it because he could, but because I just could not leave Liam like that. I wanted to be by his side the entire time.
The 4th night – we had issues with the nurses again and that was the last straw for me. I had a small anxiety attack, I just couldn’t take it anymore. Mitchell talked me into leaving the room and just going on a walk and finally showering for the first time in 3 days. Gross, I know but you completely forget about yourself when your child is suffering. There was a Ronald McDonald parent lounge room with coffee, snacks, a couch, recliners and a shower – it was made for parents to get away, take a break or get some rest. I went and took the quickest shower in there. The entire time I felt so guilty for leaving Liam. But I kept telling myself “Tayler you need to take care of yourself in order to take care of him, don’t lose yourself“. I felt myself going a little crazy – nothing was helping him, the nurses were rude, his pain was not being managed, we were stuck in this tiny room, eating the same hospital food every day. I am so glad Mitchell talked me into leaving the room, I needed that 15 minutes to myself. I got my head back on straight and calmed down.
After day 3 of no change I demanded something other than Tylenol. They kept offering Morphine but we didn’t want to continue to give it to him because it didn’t help him eat or sleep. So here I am – angry mama bear over here demanding to speak to the doctor that works with our surgeon. After literally three days of telling everyone over and over again that Tylenol wasn’t working, that he needed something other than that and Morphine – they finally realized I was right. I understood why they didn’t want to throw him on a narcotic at first and neither did we BUT there comes a point where you just have to. He was only eating 2-4 oz. a day. He was absolutely miserable from the pain. Day 4 they finally ordered Oxycodone for Liam and guess what? He ate 20 oz. that day! I wanted to scream in everyone’s face “I TOLD YOU SO!” I was so upset that it took them this long to relieve Liam’s pain. Liam continued on the Oxy every 8 hours and it seemed to be working well. He was eating, more content, pain was being controlled – everything seemed to be getting better. We went on walks up and down the hallway and even took him to the indoor play area that they had for the patients. We rocked him in the chair, read him books, let him look at himself in the mirror, looked outside from the window for the first time in days. He seemed to be doing so much better!
The morning of day 5 they came to our room around 6am and said we were ready to be discharged and that they would send us home with Oxy because he obviously needed it in order to eat. We were so relieved and excited to get out of that dark, depressing room and to finally get home to our fur pups.
After they gave us the go ahead to go home, that entire morning Liam wouldn’t eat at all. He went 9 hours without eating. I stressed to them I didn’t feel comfortable leaving because he was refusing to eat again. They assured me that once he was home and comfortable that he would start to eat. “Maybe they are right” I thought, “This is their job”. So I ignored my motherly instinct and we went home…
Skip ahead to the day after we got home from the hospital, Liam still wasn’t eat. He only had 4oz. in 24 hours again. I panicked, felt like a horrible mom for letting them talk us into leaving when I knew we should have stayed. Mitchell called and talked to the ENT doctor on call and explained the situation – they said that if the following day he still wasn’t eating to take him back in. We tried syringe feeding and bottle feeding. He wouldn’t take either. Finally about 48 hours after we got home, Liam finally started to eat a little more. Those days following were so rough. Everyone kept telling us he would turn the corner soon and get better… We kept waiting for that, it just wasn’t happening. It was sucking the life out of all of us.
6 days post op – 4th of July
Here we are, Liam’s first 4th of July spent driving 2 hours back to Charleston to stay in another hotel room. Anxiously dreading the morning as we had to send our 3 month old son back into the O.R. What a great way to spend your first 4th of July right? Cooped up in a hotel room, not eating well and not knowing why your face hurts so bad… luckily Liam will not remember any of this and that’s what we keep reminding ourselves. Liam wasn’t aloud to eat after midnight this time and we had to be at the hospital at 5:45am. Liam went to bed around 10pm and woke up around 1:30am screaming for hours. Like screaming and crying so much I thought someone was going to complain to the front desk about us. We couldn’t feed him, nothing was helping. We tried his favorite “baby shark” and white noise, he wasn’t having it. He cried until around 4:45am when he finally cried himself to sleep.
7 days post op – back to the O.R.
By the time he finally fell back to sleep it was time to get him ready and head to the hospital. Running on 2 and half hours of sleep, I quietly pumped in the dark and we got our things together trying not to wake him. We arrived to the hospital, sat in the pre-op room where he screamed and screamed… and screamed. He was so hungry. This time he was going into the O.R. to get his stitches out, make sure everything is healing well and to get his nose suctioned. Same routine as last, anesthesiologist came back, then the nurses, then our surgeon. Signed the consent forms, crying mama tears – all the same as 7 days ago. Except this time they wouldn’t let me go back with him. My heart broke again knowing some stranger was going to be taking him back, that their face was the last he was going to see before being put under. He had to be terrified. They took him back, I cried and cried and cried. I remember looking at my husband and saying “this is not fair, he doesn’t deserve this. No baby should have to be put under anesthesia this much, if at all.” I was angry all over again. What did we do to deserve this?
It was a pretty quick procedure, only took about 30 minutes. Longest 30 minutes of my life. Our surgeon came out – told us everything went well and looks good. She took us back to Liam. He was still asleep. He had this breathing tube in his mouth to help him breath and keep his airway open to prevent it from closing again. I didn’t expect to see him with that in his mouth, it was scary and sad. Seeing him asleep with a mask over his face and a tube in his mouth… he looked lifeless. It was heartbreaking. The nurses asked us not to touch him until he woke up because it could disturb the process. She said some children have to actually be put back under because of it, that they wake up forgetting who their parents are. It took him about 30-45 minutes to wake up. I was finally able to hold him – working my way through all the cords and IV. He was extremely upset but after a little bit he finally ate an entire 4oz! It was amazing! They monitored him for about an hour or so to make sure everything was okay.
We were finally going home – for good.
Life after lip repair surgery
We are now one month post op and Liam is just now starting to get back to his normal self. He is finally smiling more, laughing, giggling, playing and just enjoying his life. We are finally seeing our son genuinely happy. No more NAM, no more tape (other than his nose elevator). His palate is still continuing to move so he still feels discomfort in his mouth. His lip is still very tender so we have to watch him to make sure he doesn’t hit it playing. He is learning how to breath through his nose for the first time ever so that is a challenge. It is harder for him to breath now that his cleft is closed because of how small his nasal passages are. He is still learning how to eat, cry, talk, giggle with his new lip. But the most important thing is that he is eating again, he is not in pain anymore… he is finally happy.
He will have his palate surgery at the age of 10 months which unfortunately will be here before we know it. Our surgeon did let us know that the recovery for palate surgery is worse than the lip repair surgery. Liam still faces challenges and will for a very long time due to his cleft lip and palate. This is not an “easy, cosmetic fix” like many think. He will endure at least 2 but maybe 3-4 more surgeries. Please continue to pray for our little Liam…
He is one strong little boy.
I want to thank everyone that has reached out to us during this difficult time. We are so overwhelmed with the amount of love we have received and still continue to receive. I may not be able to respond to everyone but I see it. Those of you from literally around the world. From here in the United states to Holland, Germany, Canada, Australia, New Zealand, Greece, South Africa, Netherlands, United Kingdom, Philippines, Belgium, India, Norway to some many other places. Y’all have no idea how much it means to us, how much y’all helped us get through this.
Thank you for the sweet words, love, encouragement and prayers.