Tuesday, August 25, 2015

Our One Song Is Grace

*Words in light gray are links to videos you can watch of the actual situation. Some videos contain graphic images. Watch with discretion. *Please do not use my pictures and videos for your own personal use. 

This time last year I was prepping my 9 month old for surgery. Wiping her down, trying to make a polka dotted oversized hospital gown fit tighter. Exactly 1 year later, I sit with her in the hall and dress her for the day and have to squeeze her, into her clothes. She looks up at me, all smiles and laughs, even a few small words. This is a great start to a morning 1 year ago that wasn't so great. Though, grateful she's Craniosynostosis free, I am beyond, over the moon, ridiculously, and wholeheartedly, thankful we get to start our morning out like this, this time. Praising Jesus for even the small blessings.

A lot has changed for our family over this past year. All hard things. All good things. So many changes. Exactly this time last year...

I sat down in a hospital waiting room chair. Body shaking, heart racing, palms sweating, fingers twiddling, hair twirling. My anxiety was at it's peak when I got the call that they were upstairs with her, prepped her and heard their nervous voice say, "She is sleeping good. We are about to make our first cut now."

I slipped down into the worn out hospital chair with my head in my hands. I remember taking one big breath in and let it out slowly thinking to myself, "this is the last breath of relief I will be taking for a long while." I got all these images in my head of what they were doing to my little baby. I was trying my best not to dwell on it but didn't have any choice. A part of me was up there getting cut into.

Though I was separated from her for 7 hours. We were united in some ways. When the surgeons made their first cut, I felt it too. Right. Down. The. Middle. Of. My. Heart.

At that point I had to really let go. My head fell on my husband's shoulder. He sat next to me blanked faced and white as a sheet. Our faces, dripping with our tears onto each other. We had the support of friends and family around us but in that moment, only he and I and our baby existed. We became numb as we continued to get calls each hour as the surgery became more and more invasive.

About 5 hours into it, I turned my weary head towards my husband's and said, "There's no turning back now." It was just the idea of knowing that the daughter we placed into the hands of those Drs. was not going to be the same baby we would be handed back.

I'll fast forward through all of that and take us to the moment they made there last call the 7th hour telling us with relief in their voice, "We're all done. We closed her up, and she is doing great now. All of her vitals look wonderful. She is a little sleepy still coming out of the anesthesia and it took her a while but Abigail's doing good. In one more hour the surgeon will be down to see you. Oh, and when you see her, don't be alarmed. She will have some black and blue bruising and swelling around her nose and eyes. I'm not trying to scare you, I just want to warn you so that you know what to expect."

We thanked them for their last call. Hung up the phone of that little private room and fell into each other's arms. Gasping with relief. We could finally catch our breath. Our daughter is alive. And whole. Finally, she is Craniosynostosis free. We were so glad. Though, we knew this wasn't the end of our heart ache as we anticipated hearing from the surgeon and ultimately, seeing her.

That last hour was the longest one of my entire life. I heard the back door of the waiting room open up. One surgeon after another were coming in to let the family know of their daughter/son's condition. I thought to myself, "we're next!"

An eternity passed. I heard the back door to the waiting room fly open quickly. I looked up and it was him! Our surgeon. I excitedly said, "DR. Goldstien!!!" He burst into a smile from ear to ear. (The first time I had seen it.) I was slightly embarrassed by the fact that I couldn't hold back my excitement to see him and to know that he was done and the surgery was all over. I ran over to him and he, my husband, and myself all went into the private call room. He shut the door smiling, sat down, took off his scrub cap threw it in the trash beside us. Still wearing blue and bright eyed said to us, "Abigail looks great. The surgery was a huge success. She is recovering well, no problems. You will see her very soon. Congratulations Mom and Dad." At that moment, we showed him our thanks and shook his hand in tears, (I so wanted to hug that man! He just saved my daughter I mean c'mon!) But, I refrained, and he opened the door for us to go back out in the waiting room to update our family and friends.

On the edge of their seats, every eye was on us. You could see their ears itching to hear the news. In tears, we burst out the good news and in return got a burst of excitement, praises, and relief back. It was the most relieving, frightening, wonderful, moment of my entire life. So many crazy emotions. At times, I wasn't sure to pick which one to feel. I just knew that I was thankful she was done after all of that agonizing waiting.

Thirty minutes or so passed and my husband and I made our way up to see her. They were wheeling her out of the post-op recovery room about to transfer her to the ICU. And this was our first glimpse just moments after surgery...

Just a few hours later... then...THIS

Restless with pain. She begins to wake up from the anesthesia completely. 

It was just her and I and a dark hospital room miles and miles away from everything we've ever known. New life, new city, new baby. This was my introduction to KC. 

I woke up from a nightmare. To a nightmare. Where I was met with blank stares. 

Long nights, bloody uncomfortable nursing sessions, bandage changes, blood bag empties, scar swabbing.

The day in the hospital where it seemed to get the worst was the moment we finally began to see light again. It was 4 days post-op. Her eyes were swollen shut since surgery, they opened that 4th day, she too saw the light for the first time in days of complete darkness.

4 days post-op. The day her eyes opened.
I cannot describe to you the feeling of joy that overtook me when I saw one of her eyes open ever so slightly. It was open enough for her to see me again. The moment she did her mouth cracked the widest smile she ever gave us. She squealed and screeched with joy and excitement at even the slightest sight of light coming through the hospital window. THIS  day was such a HUGE relief for all of us.

Since that day...

Dr. Goldstein, myself, and Abigail at her very first appointment after surgery.

Abigail has been taking off! It's been a slow journey but a journey worth it.

Before surgery


So worth it. And worth watching every milestone like... her first solids post-op...

Her first time acting like her happy self... 

Her first time playing together with her big sister... 

Who said girls can't be superheros? She is our superhero. Because of a Super God.

Our one song is grace. God's grace.

Abigail Grace, 22 months, August 2015.

"No more Cranio. .no way." 

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