Surgery Day

Once my baby was diagnosed with serve LM... surgery was the next thing in my mind. The ENT that diagnosed my baby said she did not need surgery and "I would have to learn how to deal with a baby with LM" another doctor told me, "This is your babys normal... it needs to be your normal." It never sat right with me. I would wake up in the middle of the night thinking... no this is not acceptable for my baby. She needs more. She deserves better. She deserves to breathe. I went back and forth with doctors, nurses and insurance companies...Trying to figure out the best thing to do for her.

One weekend my baby could barely breathe... she woke up gasping for air at night and could not feed (which is VERY unlike her... since the moment she was born-she has never missed a meal) I took her to the on-call ENT at the practice she was going too. I asked about... or maybe more like begged... for surgery. He said he would put in a feeding tube before he would do surgery and my baby was still in the "watch and wait" stage of LM. Well... I was done watching and I was done waiting.

I finally was referred to the head of pediatric ENT at a local children's hospital in New Jersey. I went to his office with my folder of medical papers, test results and my daily log I had kept since the day she was born. After he scoped my baby he looked at me and said, "your baby has serve Laryngomalacia and she needs surgery sooner than later" I froze. This is what I wanted to hear.. I knew deep down in my heart this was what was best for my baby but still those words were unbearable to swallow. My baby needs surgery. Major airway surgery. He explained to me what he would and then my baby would go right into PICU. He said every baby he did this surgery on did very well and improved within hours after surgery. I remember walking out of his office...Grateful and terrified all at once. I cried the whole way home that day. The thought of handing over my baby made me want to puke. But watching her not being able to breathe actually made me puke.

After we received clearance from all of her other doctors, my husband and I went back to the ENT for our baby's pre-op appointment. We sat down with the surgical coordinator to go over all the paperwork. I remember signing the papers and looking over at my four month old baby... sitting in her car seat... by this time she was on a monitor 24/7. She was smiling at me. I looked over at my husband and he looked white as a ghost. He said to the nurse, "What does this mean? She may die?" The nurse looked at him, " Yes... its major surgery and she's only 4 months there is a risk." At that moment it became real. To real.We signed the papers saying we understood the risks and understood there was a risk she would die. I looked over at my baby again... she was still smiling while my heart was breaking.

Surgery day came and I was numb. It was a horrible feeling to be driving in the car hearing my baby laugh and coo and know... what she was about to go through. I held her tight as we walked through the hospital. I did not want to let go. When the time came for my husband and I to take our baby into the per-op room ... the family had to say goodbye. The hardest part was telling my toddler to say goodbye to her sister. She gave her a kiss and waved. At that moment I thanked God I had my babies so close together in age. My toddler had no idea what was going on. We were simply taking "Bap" (as my toddler calls her) into another room.

After surgery, the surgeon came out and showed us pictures of what he done and he told me once she was stable he would come get me. A few minutes later he walked out of the OR and said, "She needs her mom." Honestly, those were the best words I have ever heard. He personally brought me to recovery where my baby was. And it's at this part where I still get emotional. I walked around the corner and saw a bunch of people around my baby... to the point where I could not see my baby. My heart sank. What was wrong? But everyone was smiling and laughing. The surgeon said, "she did great... look at her." I looked over and there was a OR nurse holding my baby like she was her own... all swaddled in big warm hospital blankets... rocking her in the hospital rocking chair. My biggest fear was my baby would be alone...but the same exact people I handed her to before surgery were the same people who were with her in recovery. Amazing. The nurse handed my baby over to me. It was like seeing her for the first time. Her face was swollen and red...but she was beautiful.

It came time to move her into PICU and the nurse told me to tell my family so they could meet us in the hallway to say hello. We all walked with my baby to PICU. The nurse stopped outside the PICU doors and let everyone have a look. I know how much better the whole family felt by just seeing her... seeing she was okay.
I never want to go back to the PICU. That is a place for sick children and babies. A place where time stands still and the only sound you hear is the sound of the monitors and their alarms. When a alarm goes off everyone runs. It's scary. They told me in our tour a week before the surgery there would be moments in the PICU where I would need to leave... I would need to leave to pull myself together. I remember thinking... noway am I leaving my baby! I am strong. But they were right.

We brought our baby home the following day... a little over 24 hours after surgery which was amazing. They told us in PICU some babies need to stay at least a week.

Since surgery she has had a few set backs but has greatly improved.

I know the angels watched over my baby on surgery day. I asked them to take care of her and they did. I thank them every day for it too <3