Our son needed to be 3 mos. of age, minimum 10 lbs. and have no sign of a cold or infection in order to continue with the scheduled cleft lip repair surgery.  These first three months were exhausting, as they are with any new parent but especially so with an infant that has special needs.

We kept our little one healthy and with doctors visits weekly to both his pediatrician and Cleft Care Team it was definitely hard to keep up. We got better at the taping and placing the nasal stents without crying so there were some milestones as parents that we actually met.

Then came the DAY.  Neither my husband or I slept at all.  We packed our son’s bag and repacked it.  We kept busy cleaning the house, doing laundry, grocery shopping, etc. all with the idea that everything would be done and after surgery when we got home we wouldn’t need to worry about anything…right…

It was a rough night leading up to the surgery.  So many thoughts running around and a lot of silent praying.

Around 4 a.m. my parents arrived to stay with our daughter who was still sleeping and needed to get to school that day.  It was a  Thursday.  I remember that so well.  The things that stand out, right?  We packed up our tiny new infant who had already endured so much these past 3 months of life and headed out to the hospital.  There was traffic on the 405 but not nearly as much as there would be in a few hours.  We made good time, which was not really a welcome relief.

As we headed into the hospital I could feel us both getting more anxious and little was being said between us.  We checked in and went through the motions of going to our waiting room to get him into his hospital gown.  My husband and I took turns holding him, hugging him, rocking him and whispering a lot of I love you’s.  He slept through it all and had no idea what was to come for him in a few short hours.  I felt awful about this. There was no way for me to convey to him what he was about to go through and really I had no idea what we were about to go through either so I’m not sure that I could have really given him the scope of what was coming for all of us.  My husband and I kept telling our little one how sorry we were and even though we knew he needed to have this surgery and that it is what needed to happen for him we both felt incredibly awful at having to make him go through it.  He was just so tiny and both of us feared he might not wake up after anesthesia or that something terrible would go wrong during surgery.

As parents we felt helpless and guilty.  I felt really awful and cried while holding my 3 month old baby.  He was just a baby!  He was looking to us to keep him warm, rock him while he slept and to feed him when he cried.  He was going to cry and I was not going to be able to tell him it would be okay because I didn’t know if that were going to be true.  I prayed to God asking him to watch over our little one that we had prayed for to begin with and to bring him forth to us after surgery with little pain and discomfort.

I did something I am not all that proud of and that I have never really talked about.  As I cried holding my son just before surgery I told my husband that he was going to have to be the one to hand over our son to the nurses when the time came to do so.  I could not bear having to hand over my child willingly to a stranger and beg them to please take care of our son.  I felt so bad putting this on my husband but I knew that if a nurse tried to take him from me I was not going to hand him over and I was afraid I just might bolt right out of the hospital with him.  Nothing can prepare you for the moment when you have to physically hand over your baby to someone else to care for.  Yes, his surgeon was there and his nurse so there were familiar faces but that didn’t matter because the only face I saw was my son’s.

My husband is gentle and kind.  He knew my request was not to be taken lightly and he simply nodded his head yes.  When the nurse came I kissed my son’s forehead one last time before surgery and told him that mommy loves him.  I handed him to my husband who held him for a bit and nuzzled him as well.  The nurse urged us to give him to her.  I stood behind my husband because I really did want to leap forward and shove her into a wall.  She smiled and told us it would be okay and that she would take good care of him. All I could think was “sure, you tell all of us helpless parents that.”  Reluctantly, my husband handed our baby to her and she hurriedly whisked him away as if she knew we might change our minds and scramble to get him back.

That awful moment is forever etched into my memory.  I remember what we were wearing, the awful fluorescent lights buzzing above us, the long empty white hallways on either side of us and the dreaded double doors that the nurse just went through with our son.  We stood there frozen for some time.  We held hands and silently cried unable to leave the last spot we had just held our son in.  Doctors and nurses moved around us and past us not saying anything.  I’m sure we were not a scene that was new to them but it was new to us. New, raw, and very very real.  Dreamlike real, but real nonetheless.

Our son was in there and there was nothing we could do about it now.  I blame my husband. He is after all the one that handed him over, not me.  Sorry – lame attempt at humor but alas, it is how I deflect.

It seemed an eternity and yet it didn’t.  We finally forced ourselves to begin to walk out to the waiting room where my parents had arrived, my in-laws and brother-in-law that flew in from AZ.  We had family and that was a comfort.  Not much of one because it wasn’t their faces I wanted to see or kiss but they were there to offer what comfort they could.  We informed the nurse at the desk of our presence and she walked us through the smart board they had that updated the progress of our son’s surgery in real time.  That was pretty amazing but also a bit dreadful because we were virtually glued to the board anxiously awaiting a blip that showed some sort of change.  It showed us when his ear tubes were in and the ENT was complete with his portion of the surgical process.  It showed when they began the lip repair and it stayed on that progress report for awhile.  The surgery lasted about 2.5 hours.

I tried to pass the time by excusing myself into a small room they had where I could pump and that only wasted about 20 mins so not as effective as one would like but it was 20 mins nonetheless.  I made small talk with some of the other families in the waiting room but I don’t remember what was said or who I was even chatting with.  The time simply ticked by ever so slowly and I continued to silently pray all would be well.

Finally, we reached the point where he was in recovery and they fetched us from the waiting room.  My stomach was in knots and I felt sick but I just wanted to get back there to see him and hold him and to let him know I was there and that mommy was going to take care of him.  We walked through some maze before reaching him and there he was. He was in this plastic looking crib thing with his name and information at the end of it with a nurse looking over him.   I nearly rammed her out of the way and hastily asked if I could hold him as I was already reaching for him.  He was waking up and appeared groggy and out of sorts. His lip was stitched up and he had the plastic nasal stents in with some sort of clear coating over his stitches to protect them.  His surgeon arrived and told us that it would protect his stitches and stay on until she removed it.  She gave us all the post-operative instructions and asked us what we thought of our son’s new little face?  I didn’t really respond and neither did my husband.

We stared at him for a long while and I’ll admit it was hard.  He didn’t look the same to us. I mean sure he had his beautiful eyes and was looking at us in this really drunken stare but we had fallen in love with his face, cleft and all, so this new face looking back at us was odd.  I do not know of any other way to describe it.  I mean this was our son, our baby, but we needed a minute to really soak in the change that took place and realistically all I could see were the stitches and clear glue stuff so I was not really sure what I thought of this new face looking back at us.  Don’t get me wrong.  We wanted him to have this surgery and to repair his lip it’s just that we weren’t really prepared for the change in his face.  It was simply going to have to take some time.  Our daughter arrived at the hospital later that day after school when my parents brought her and she cried when she saw her brother. She told us that he just looked so different and that she was going to miss his “wide smile” that we had all gotten to love.  It was exactly how we felt.

The surgery was over and done with and we felt like we had all survived a great deal at this point.  We also knew it was not over and that more surgeries were in our future with the ear tubes and his palate surgery, but we had some time.  We had some time to take our little one home after a few days in the hospital and we had a few months to just be parents and hold him as much as possible and not put him down or hand him off to anyone.  Yes, we spoiled him with lots of holding and kisses but we’re all okay for it.  We made it through this first big hurdle.

Unfortunately, we were going to see those dreaded double doors again.  But for now, it was just all hugs and kisses and thank you’s to the man upstairs.

tdowell22

I live in SoCal with my husband and two kids. Love reading, writing, being a foodie and coffee aficionado. I support other moms of cleft affected children. Our family is continuing along on this journey and we seek to help other families navigate terrain we've already covered. All Smiles is what we want for all cleft kiddos!