Just typing the title of this post made me sad. I wish I could tell you that Rylee's first Christmas was full of laughter and joy. That we spent the whole day watching Rylee master the art of crawling and that we ended the night cuddling and enjoying our first Christmas as a new family. Sadly that's not the case.
When Rylee was in my tummy I would pray for her every night. I prayed for happiness but most of all health. So when I delivered my 5 lb 14 oz baby girl and the doctor said "She's a beautiful and healthy baby girl" my heart rejoiced! That's all that I wanted.
I watched her grow every single day, it really does happen that quickly lol. She was in my arms when she said her first "gooo" and she was on my chest the first time that she picked her head up all by herself. She's my world. My day began and ended with this tiny bundle of joy. My sweet healthy baby girl.
At her 3 month check-up all was still well. She was growing and gaining weight and meeting all of her baby milestones. The doctor said he could hear a tiny murmur in her heart that he hadn't noticed before. Oh. I looked down at my daughter who was smiling back up at me and covered in slimy baby drool, and I started to cry. "No no, it doesn't sound severe and lots of babies have murmurs around this age, it should disappear soon. If it doesn't, then we should be concerned." That eased my nerves a little. A little. I googled till my fingers were sore. The majority of babies with heart issues are on the slim side, Rylee was a chunky monkey. Fatigue was a big sign of a heart disease, Rylee had more energy than the Energizer Bunny. Maybe I have nothing to worry about. If it were serious, we would be referred to a specialist immediately.
Her 5 month checkup rolled around the following week (it seemed). She had grown even more, and was trying to crawl. My little go getter! This time when the doctor listened to her heart, he wasn't so passive. His brow was creased as he listened, and listened.. and listened. I held my breath. "There's something not right about her heart beat. It's time to refer you to a specialist." Don't panic, Misty. Everything will be fine. It has to be.
The next month was something that I never could have prepared myself for.
December 6, 2011 Rylee's first appointment with a cardiologist.
She smiled and turned the doctor into putty in her hands. She has that affect on people! He did his physical examination of Rylee and told us the same thing that we had seen ourselves.
She is too 'full' to have heart issues
She is too energetic to have heart issues
But after her ultrasound, his attitude changed. "It's bad". That's what he said. And my heart stopped. What? What does that mean? How bad? You just said she's perfect!
We were told by the first cardiologist that Rylee would need surgery within a year. No. She's just a baby. How can this be? He suggested getting a second opinion since it was so severe. So we did just that.
We called Cole's pediatric cardiologist. Rylee's daddy had some heart issues as well. We thought about it possibly being passed on to our daughter but were reassured by her doctors that this wasn't the case.
For the 7 days between appointments, I cried myself to sleep. Is this my fault? Did I not take care of myself good enough while I was pregnant? Maybe I should have exercised more. Would that even matter? Maybe I needed more Omega 3. Too many questions. My only job in life was to protect my daughter, keep her safe and healthy, and I failed.
December 13,2011 Rylee's second appointment with a cardiologist. Our second opinion.
We met with the cardiologist. "Your daughter has Supra Valvar Aortic and Pulmonic Stenosis." I didn't even know what that meant, but I knew it wasn't good. Basically, it's a narrowing of the large blood vessel that carries blood from the heart to the rest of the body, and also narrowing and obstruction of blood through the heart's pulmonary valve, which connects the pulmonary artery to the right ventricle (one of the heart's four chambers). All the narrowing was causing a thickening of her chamber walls, so every time her heart beat, the walls were closing in on each other.
"She is going to need surgery within the month."
This can't be happening. I prayed every day. I take good care of my baby.
December 15, 2011 Meeting with the Surgeon
We did a quick catch up of Rylee's condition and made sure we understood what we were dealing with. Rylee laughed and gooo'd and blew a couple of spit bubbles. My sweet girl. For 1 year now, one sentence has replayed in my mind, and it's what the surgeon told me that day. "If your daughter doesn't have surgery within the next couple of days, she will not make it to Christmas."
My whole body went numb. I'm crushed, I'm devastated, I'm hurt, I'm sad, I'm scared.. I'm numb.
The next 4 days were spent in and out of the hospital doing blood and pre-op work. We took a hospital tour and everybody was very nice. We spoke with a counselor who offered some helpful words. We were ready. Right?
I squeezed my baby girl and gave her more kisses than she liked. I held her and couldn't bare the thought of never doing this again. I wanted to scream. I wanted to cry. I wanted to hit the walls and throw something and make it break, the way I was broken. I wanted to close my eyes and not open them. But I didn't. I couldn't. My baby girl needed me to be her rock. She needed me to make her smile and laugh, and most of all make her feel safe.
From friends, family, nurses or doctors that we just met, I received the same question. "Why are you so calm?" "This doesn't scare you?" "Are you ok with all of this?" "Why aren't you crying?" I had so many emotions in my heart that anger didn't fit, so I just shrugged, or ignored them, or said "you wouldn't understand." I have my answers now..
Why am I so calm? Because I need to be. If I'm a total wreck then how will Rylee feel safe?
This doesn't scare me? I've never been more terrified in my life. The thought of losing my daughter turns my world upside down. But again, I need to keep my composure for her.
Am I ok with all of this? No. I'm not. But if it's the only way to keep my daughter alive then I need to be ok.
Why am I not crying? I am. Constantly on the inside. But nobody can see that. Especially my sweet baby girl.
December 19,2011 Rylee's Surgery
We arrived at the hospital at 5 am. Rylee slept in my arms. I thought about the first day I saw her, how she was the teeny tiniest person I'd ever seen. I thought about how many nights I stayed up rocking and singing her to sleep. I thought about the first time she smiled, the first time she laughed. The way her head fit perfectly under my chin. Most of all, I thought about being able to do that again soon. My sweet baby girl is the strongest person I know. She can get through this. We can all get through this. God is on our side and he will keep her safe.
The next few hours seemed like days. We got updates via telephone about the progress of the procedure. That made me feel better. She was in God's hands.
When we finally got the call that Rylee was out of surgery and ready to be moved to ICU, we were so relieved. We hugged each other and cried. Thank you, Lord! We waited down stairs for them to wheel her by. I knew she wouldn't be awake, I knew she would look a little strange with all sorts of wires and gadgets attached but I KNEW that my baby was fine and alive.
I remember how tiny she looked in that big bed when we got to see her. She took up less space than the pillow. I kissed her forehead and said "I'm so happy to see you, I love you baby."
Recovery was rough. She spent a week in ICU and days in and out of consciousness. She was hurting, she was hungry, she was sad. I wanted to pick her up and hold her next to my heart. I wanted to nurse her and kiss her sweet tiny hands. I couldn't. She couldn't be moved for a week. She didn't like that too much either. She slept most of the time and didn't know I was there but I never left her side.
December 25, 2011 Rylee's First Christmas
We were still in the hospital, we had been moved to our own room. Santa came and brought Rylee a baby doll and a puzzle. Dora was on TV so nothing else mattered lol. That morning she smiled for the first time in a week. Daddy jumped around and Mommy made funny noises and she smiled. The sweetest smile I have ever seen. We also discovered she had a tooth! BIG GIRL!
It's been almost 1 year and my daughter is a pistol! She's running, talking, dancing, climbing, and exploring! It was hard to see this far a year ago. We are here now, we are so blessed. Every night I kiss her hands and face (before she says "NOOOO" and squirms away lol) and I thank God for our miracle. We were given an obstacle and we overcame and conquered. I'm so lucky I was chosen to be Rylee's momma!
Rylee and I just before her surgery
After her surgery
1 year later....