Coming Home.

During our stay in the PICU...we realized soon that Adalyn wasn't going to get better. I still wasn't ready to accept that though. Countless times I prayed....Telling God exactly what I wanted. Exactly what we need. Begging....bargaining.... and pleading for things to be different. For results to come back better...

Yet over and over....David and I got the same answer.  It was time for us to let our brave, perfect little girl go home. 

Making the decision to remove Adalyn's breathing tube was the absolute hardest of my life. To know that we would only have a short time left would instantly throw me into a panic. Even today, I struggle to think of that.

After removing the tube, Adalyn never again had a seizure. It was our miracle. Her entire countenance radiated wisdom...comfort...and peace. She was tired, yet her eyes were so calm. She even "talked" in those days after removing her tube.

First time holding her after the tube was removed...best feeling! 

We had a big meeting, with absolutely everyone involved in her care. Best case scenario, with each treatment option we could try....it would maybe buy us another month. As much as we wanted to keep her with us, we couldn't put her through what we knew was only a chance at more time.

Some of the physical angels we were surrounded by helped arrange for us to be flown home.

November 10th, we finally came back home. 

There are no words to describe how I felt leaving some of our family...both mine and David's sister...knowing that would be the last time they got to shower her in kisses.

Her life-flight nurses dressed her perfectly. She looked so cozy and beautiful. My eyes could hardly leave her perfect face the entire flight home. Almost as if my heart was trying to etch each and every detail of her into my memory. 

As soon as we were settled in that night... it was clear how much Adalyn had wanted to be home too.

That night was the last perfectly calm night we would have. I won't go into detail, because it's too close to my heart.... But that night was one of the most sacred of my life. The capacity of love that filled that room was beyond anything I had ever felt. I know angels were present....and the prayers from so many were comforting us...

The days that followed...we spent every single second next to our sweet girl.

As I have reflected on that day... so many thoughts have come to mind. I wanted to hope that this November would, in some ways this year, be much more calm...and give my heart a chance to find the pieces of itself again.

Oh how I miss this..

Yet, this past weekend has once more set David and I into a tailspin. 

On Saturday, David's defibrillator (much like a pacemaker) started beeping every few hours. Most people might not know the feeling of their body randomly making beeping noises...or sounding like an English ambulance...but David sure does. We wanted to hope it was just his device malfunctioning and sending off a false alarm.

As it would turn out...one of the leads going from the device into his heart has shattered. Meaning, David needs immediate surgery to replace it. 

When we heard the news....I wanted to say, "You're kidding me, right?" How is it possible to so frequently have such horrible timing... When we found out we were pregnant earlier this year...one of my fears was something going wrong with David around the same time we were having a baby again. I told myself I was being irrational....and shell shocked from the past year. Yet here we are.

The complicated part is that David already has too many excess wires in his heart from old leads. They generally don't remove old leads because of the risk it poses. However....they can't fit a new lead in...unless they remove an old lead.

The risk with removing a lead is that it can puncture a hole in the heart wall. Having a hole in your heart is not a good thing... 

The lead they need to replace is one David rarely needs....but essentially...it is his life saving lead. If anything goes wrong, like heart going way too fast, it's the lead that delivers a shock to his heart to get him back into a normal rhythm. Imagine the paddles you see in medical shows....that's what his device does.

In the mean time...David gets to wear this fashionable "Life Vest" It monitors his heart....and can deliver a shock if needed. 

You can tell he really loves it. 

So, this week, on the 17th...David goes in for surgery.. Not because his heart itself is having problems..His heart is doing great. It is just the device/leads inside. His doctor set us up with one of the best lead extraction surgeons in the nation. If all goes well, the surgery will be several hours...and we'll get to come home after a couple days. Worst case scenario... if a hole is punctured, they do emergency open heart to fix the hole.

And....our little boy is set to arrive on the 27th. 

Needless to say....there have been many tears shed in the Brown house these past few days. It's hard to not understand. Hard to feel like the rain clouds are so constant.

I have no doubt Adalyn gets so much of her amazing courage and strength from her brave Daddy. They are the two most incredible souls I have ever known.  I feel beyond lucky I get to call them mine....but feeling so helpless to fixing things is debilitating at times.

I wish I could say I have some sort of insight... All I know for sure....is that some days are hard. Really hard. 

Some months are hard. Really hard. 

So....this week...I find myself begging, bargaining... and pleading once more. Mostly just trying to remind myself to trust in Someone greater. We are praying that all goes so smoothly with David's surgery. Praying that we feel Adalyn so very close. And praying that our growing little boy stays inside for as long as possible.

Coming Home.

Well.....it's official my friends.

We have left the hospital! This post comes to you right from the living room of home. 

This week has felt so surreal. There were so many moments where I felt like the hospital really going to be our "home." To be able to buckle Adalyn in our car and drive away was the absolute best feeling. For over a month I would see new little families take their babies home...and felt so jealous and happy that they were able to take their baby home. This week was our turn.

The morning we took her home, I thought over and over about our time in the NICU. It was hard. Physically, emotionally, and spiritually. However.....I will be forever grateful for the absolutely amazing people we met there.

For example....Meet Elisa, our nurse practitioner. She was with us from Day 1.....right after Adalyn was born. She impacted our lives in so many ways....and we are better off because of knowing her....and for all of the things she has done for our little girl.

Some of our nurses and Occupational Therapists....which I kick myself for not getting pictures of...also impacted our lives so greatly because of their big hearts. For being there for me on the days that I was a mess of tears.

The past few days of being home have been beautiful. Yet so many parts of me still feel so afraid. 

It is so hard for us to watch Adalyn continue to have seizures. To wonder if any medicine will be able to work. To sit back and feel so helpless.....and pray and pray that she comes back out of it.

I am afraid at times....of thinking of the future. Wondering if we will ever find that sense of "normal" again. Wondering if I will always be paranoid to even walk out of the room....without a fear of what will happen if I'm not there. Or waking up in the middle of the night hearing her oxygen monitor beeping and my heart sinking...wondering if it is yet another seizure....or is she just kicking her feet around?

This picture melts my heart!

I find myself still mourning the life that Adalyn won't be living......mourning for the questions that remain unanswered. Will she be able to run through the sprinklers? Blow bubbles and eat otter pops during the summer? Build snowmen? Dance around in the rain? Walk? Run? Ride a bike?

I know those are silly thoughts.....but they are at times the type of thoughts that haunt me in the middle of the night. Or cause me to sit in the closet and cry....until my amazing husband comes to find me...and cries with me. 

Recently, I was reminded of something David said to me on the day we got married. We were sitting next to each other....right before the ceremony and David took my left hand....twirling my ring around. He asked if I knew why he picked my ring. I think I expected some witty reply....I shrugged my shoulders and laughed..

He looked at me and said....."We are like the pieces on the outside.....and God is the center. As long as we keep putting Him first....we will have forever. We can get through anything."

I have thought of that each time I have looked at my hand this week.

Trails test you to your absolute limits. I have prayed with angry hot tears streaming down my face. I have prayed with tears of gratitude. I have prayed questioning His plan for us. I have prayed truly wondering if we could get through this. I have prayed for each happy moment of pure peace we have had with her.

Having Adalyn in our lives has brought us to our knees more than I can count. Having her in our lives has made us seek daily to be better. To be better for her. To be the best parents we can be in facing this situation.

We are far from having this all figured out. Going to the store by myself to by a few groceries was such an odd feeling. We still haven't yet got all the way up to cooking our own dinners yet. That sense of normal hasn't kicked in. Hopefully by next week! For now...we are so thankful for his lovely sister Heather in feeding us amazing dinners.

Baby steps.

For now, we are trying to be grateful for the moment we are in. For the moments we can kiss her sweet cheeks and toes. For the moments I get to watch David tell her stories.....or work on "bicycle kicks" with her. For the moments that we get to sway her to sleep in our arms.

Those moments are too beautiful to capture in words. 

It is in those moments I know that somehow, this will be okay. As David reminds me, God's plans are eternal. Often we are only seeing one piece in the pattern. Someday, we will get to see the whole masterpiece.

Just because it is complex, doesn't mean it has to be awful.

Her first time outside...and she snoozed through it!

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Best afternoon!

This is what it's all about folks

I know I have posted this before...but this song is sums up so much of my thoughts. It is beautiful! And helps get me through tough moments!

Thank you all again for so many countless prayers on our behalf.  They truly have carried us through and strengthened us.  We have seen so many tender mercies as a result.