July 14th 2012

Today is July the 14th. It's the last day I saw my the deep blue eyes of my Avery boy.

Today was the day where they were finally going to figure out why things weren't getting from point A to B. We had been in the NICU since April, and with only a replogal line and a PCCC line even the treatment team was getting tired of us living as a family in the NCCC at UNC.

Avery was around 13 pounds of serenity. He was "the best baby in the NICU." Never needed much, just push the TPN line when it beeped, and his mobile when he was up and he would just entertain himself. I remember walking in one day with his head caught between railings and he was just staring at his buddies going around and around gurgling like "Well...if I cry about my tummy no one can do much for that so what's the use bothering with my head?" He didn't "cry" he would putter...he would turn up his little lip and just "ehhh....ehh...." and if nothing changed...he'd go to sleep. I have one horrible memory of them putting him on the board with his arms strapped over his head while they did the barium XRays. He was screaming...and I couldn't do anything. The nurse came and stood by me while the doctor was rotating him and moving the tube up and down his throat to get more barium here and there..."It doesn't hurt him Ms. Hall." I turned to her and said "Let's strap you to a board with your arms over your head and a tube down your throat and then you can tell me it doesn't hurt." Her eyes welled up too.

We would hold him and he would spend his moments staring above our heads and all around. We would make all these faces infront of him...and he would calmly look at us like "really mom? You were reading the Odyssey to me when I was in your tummy....I get out and you want to talk about poop and make baby voices? Ok...whatever makes you happy." We would just laugh and say "O Avery, are you looking at the angels...." I didn't know....I had no idea.

You often wonder why in the moment, why things are particularly so strange in the moment..."Why is he not bothered and why am I sobbing?" Avery was that kid....I watched them place a central line after one fell out (yet again) and he was just watching around him like it was an everyday thing. They would draw labs from his toes and heels....and nothing. Not a peep...he wouldn't even draw back his foot. Just chomp down on a paci and stare up at his mobile. And I would just...pause...."you're so much stronger than your mommy, Avery boy." Angels had him then....they had him always.

He never belonged to me. He came for but a while to shake my whole world and change it. I don't look for reasons any more....I hope they're bigger than anything I could understand here. I've always said God has a lot of explaining to do...and He does and He will. There were early signs that he was on "loan" and had to go home....nothing in his health....but in who he was.

July 14th we got to the hospital early early. They had said they wanted to take him back right away....it would be an exploratory GI surgery, and Dr. Helmrath was hesitant to do it because that type of surgery is dangerous....but they had to figure out what was going on. He was delighted to see his parents so early, babbling and bubbling at us, grinning and kicking. We held him until they loaded up his "big boy" bed to take to the OR. We held him in the OR waiting room too until the green-clothed Anastisologist team and Ped Surgeons came back to say "hi" to him and wheeled him away. We watched him go until we couldn't any more and went upstairs to wait. About 4 hours later we got word he was coming up and Dr. Helmrath met us before Avery did. He was beside himself...it had gone so well! They had found the dead spot making the tummy difficulty, cut it out and given him an ostomy, placed a central line for home TPN and a GTube. Around a week before he saw our boy going home....3 days recovery in the NICU, transfer up to the 7th floor to meet the GI doctors then home for home care. It had gone really well. While he was talking they wheeled him into his spot in Pod C in an incubated open bed...following with is crib. As he wheeled by me I could see him struggling against the anastetic, he was sheet white and his ostomy site was bleeding...a lot. Something wasn't right. Dr. Helmrath saw my face "Meghan, he's OK, that ostomy site will bleed for a bit because of how vascular it is." "Hmm....something doesn't feel right..." "Well his stats are low, he just came through an intensive surgery, give him some time." Didn't quell my heart. I looked at Jared and he was thinking the same thing.

We had plans to go to the movies that night with Jared's sister....to get out of the NICU and refocus. But I looked at Jared and said as we scanned the screens and watched Avery struggle to keep his blood pressure up and his stats level and normal "I don't think so." I turned to his primary nurse and said "can you up his pain meds? He isn't comfortable." She looked at me like I had said I was going to birth a cow and a duck, because after his initial surgery and how addicted to the pain meds he got and what a horrible first 4 days he had coming off of them I had asked them to keep him comfortable from then on but not out of his mind and I was very much on top of his pain med regiment following. So me asking to up them was surprising to them. I just didn't want to see those eyes flickering open like that...I could see the hurt. Something wasn't right.

And it wasn't. Those flickers of blue were the last time I saw him open his eyes. That night things went from bad to worse, and for the next 9 days we didn't leave the floor. They set us up in one of the sleep rooms and we went back and forth, brush teeth, check Avery, eat, check Avery, sleep for an hour, check Avery. He had 3 emergency bedside surgeries, coded twice and we spent the days watching limited cable, going to his bedside, I would clean his dressings, we would rub the lubricant into his eyes, and I would read him stories and tell him all about what we would do when he got home. He had 2 nurses round the clock for about 5 days, and a resident dedicated to only him. His crib stayed outside the pod just waiting for him with a handmade sign that said "Baby Avery" on it. But they couldn't move him out of the open incubated bed, even though he was almost too big for it. Finally he started to level out. Stats were being maintained at reasonable levels, they took the oscillator away (a big vent that would blow a constant stream of are into his lungs to keep them open and full so his swollen belly wouldn't push his lungs up into his shoulders, then shoot the oxygen down into his lungs.) And I went back to work very little for about 3 days. They were going to start weening him off the comatose agent and bringing him back around. I was so excited to see those blue eyes again.

But something wasn't right. Sophia, one of his doctors called me at work and said "Meghan, he's off the meds and not responding...we're going to take him down for a CAT and EEG." Jared called me and said "Don't worry mama, I'm with him, he's fine...this is just routine." But my heart said it wasn't.

They wouldn't tell us results right away so Jared came home and we made plans to go back that night. It was July 27th. We walked in that evening and the resident was on. She looked at us like she was being asked to shoot her puppy. I knew it wasn't good. She said...."Well, the results show no brain activity." I crumpled to the floor. Jared was in disbelief.

July 14th was the last day I saw my little boy's eyes flicker open on their own. Those moments before he went into the OR, and the moments he came up. The last time I saw his blue eyes.

Avery, I don't know when this month will get any easier, when I won't watch dates pass and remember what I was doing, what was happening....I just don't know.

I do know that I look around at the world you left me and while I ache desperately for you....I can see why you wanted to come and fought to stay for just a little bit. I grant all my courage, my fortitude and my hope in you and what God did through you.

Today is a sunny July 14th. Your baby brother is still in my belly and I'm exhausted. Your sister is sleeping in the bed with her Daddy....just came from a dear friend's own baby boy's baptism. And while I ache and hurt more for you than any deep physical discomfort from being 9 months pregnant...I can look around and see your hand prints on everything in our world. I wonder what you would be doing if you were here....I know you're happier than any of us where you are. Someday I will know that too....and while it's sometimes difficult to not feel robbed of time with you....I know we will have an eternity to hold onto.

My blue-eyed angel boy. Bend close to me and just hold my heart and hands. I love you more than my feeble command of the English language allows me to say. Look over us all. And thank you for all that you've given us through God's plan in you.

-Mommy