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.

Getting Through...

Last week I felt that so many aspects of my little world were simply dangling by a thread. I felt like I couldn't think more than a few hours ahead at a time. For all of you who have shared our story.....who have prayed for us.....visited....called...sent messages...we are so incredibly grateful. Words cannot even describe how much it has meant.

Today we got the most humbling visit from David's classmate Trevor and his lovely wife Kiera. Thinking of their visit we still get emotional. They brought a gift from all of his classmates...I don't know if I can ever truly express how much their act of kindness has impacted our lives. He met some of the most amazing people through the physical therapy program! We are so lucky to have them in our lives.

We don't even know where to begin to say thank you. You all may never realize how much you have helped us...and carried us through your words and actions. We never expected to be on the receiving end of such enormous amounts of love, support and prayers. To be in the situation where we have truly needed it.

After David was admitted to the hospital last week....he lost about 15 pounds of fluid in two days. With all of the fluid off of him...he started feeling so much better! Loosing so much weight that fast though drained him of his energy.. However.....if you ask David...he will always tell you he is feeling good. He is never one to admit when he isn't feeling well.

Since they knew we had a baby in the NICU....and that we would still be around....they discharged him on Sunday and set up surgery for Wednesday.

Adalyn had her surgery to get her G-tube placed on Tuesday of this week. Nothing could have prepared us for how hard that was going to be. How hard it would be to watch her be hungry for the hours before. How hard it would be to watch them wheel her back.......knowing that a little baby wouldn't understand the pain she would later experience.How hard it would be to know they were about to pierce her perfect little stomach. Or how hard it would be to see her recover.

She was intubated for surgery....and they wanted to leave the vent on for 6 hours following surgery to allow her time to wake up from anesthesia and breathe on her own again. It was the most heart wrenching and longest 6 hours. Adalyn began to wake up....and scream. However....because she was intubated......there was no sound. David and I had to hold her little arms down for close to two hours....and watch her silently scream...trying to give her comfort. That image will forever haunt my dreams. We felt so helpless.

The first few hours following surgery.

We questioned everything that night. Was surgery the right thing?? Did we just bring her into this world to suffer? After they pulled the tube.....her throat was so sore.... Her cry wasn't much louder than a scratchy whimper. Our hearts felt again like they were breaking.  Knowing she was in pain. Knowing she still couldn't eat for 12 more hours. Knowing we had to leave her again for the night without our comfort.

It was awful. I would never wish that upon anyone.

The very next day....David went in for surgery. I was a million times more nervous then I would let myself admit. They were planning on exploring around in his heart...and replacing one of the valves. Then for good measure....taking a liver biopsy....since his liver had some damage from the week before. However...once they got inside his heart....they were taken by surprise. (Which shouldn't have been a shocker...David always seems to have that effect of doctors). They saw some other areas that are leaking. So....as a result....they didn't want to fix his valve and in turn cause problems elsewhere. This week they will have a meeting to decide what will be the next best step to take and address what should be fixed. For now though....David is discharged...recovering... and doing so much better then last week. The hope is that we can keep him this way as long as possible and prolong another procedure!

When David was discharged that evening.. I brought the car around to pick him up. As he stood up....I noticed his neck bandage was filled with blood.One of the veins they had gone in had sprung a leak. Of course. Why would leaving the hospital ever be easy?!

Aimee, his lovely sister, was there to wheel him back up quickly while I parked the car again. Luckily....it was a quick fix. He was given a shot to help the blood clot and stop bleeding. Even with that..I was feeling so hopeful. Adalyn was recovering well....David had made it through...and we had a discharge date for Saturday!

Lately....I at times feel just when I get my hopes set on something....things take another turn for the worse.

Adalyn's G-tube site got infected. 

For yet another time.....I had to hold her sweet little arms down as they poked and poked in search of a good vein to start an IV. I never would have imagined that my soul could feel so stretched so often. I wanted to sob with her. Coming back to tell David was another hit. Our hopes of taking her home sailed out the window...for up to another week. It wasn't supposed to be like this. A new baby is supposed to worry only about eating....sleeping....pooping....and getting all the snuggles in the world.

Yet Adalyn's first month has been filled with painstaking test after test. Poke after poke. Beeping monitors. IV's. Assessments. Tears. Surgery. On and on it seems.

Evenings are the hardest. When our thoughts catch up to us.....and the autopilot mode slightly switches off. Seeking understanding is hard. The past month has felt like a continuous battle that we are trying to wage.....A battle that is uphill. In a blizzard. With no shoes on. It has felt like each piece of good news we receive is followed with the bad.

I have worried until I was certain my hair would be white. I have cried until I was certain I could fill a pool. I have felt afraid. And scared. And frustrated. I have wanted to run and hide......certain I was not strong enough. 

Strength. What it all comes back to. What is it? I have asked myself that very question so many times in these past few months. I thought I knew. People have told us lately that we are strong. Honestly.....we don't feel that way. I think if most people saw us all the time...,they would see what a mess we are most of the time.

Most days we just get through. And I have decided that's okay. I don't know if there is any sort of manual about how to be amazingly great or a rockstar at getting through trials. (If there was I would have bought a dozen copies by now).

My sister shared this scripture with me the night we found that Adalyn had an infection:

Isaiah 40:29
He giveth power to the faint; and to them that have no might he increaseth strength.

I have thought of that so frequently. Most days I feel exactly that way.....that I have no might. No strength. I have come to realize that even on the days we are simply getting through....we are only able to do so because of Christ's strength. He is the one that gets us through the tough days....and through the days that we wonder if there really are happier days ahead.

I don't know if understand the reasons why....I don't know that we ever will. I do know however...that because of the past month.....because of Adalyn,....because of all the incredible people in our lives.....we always we have felt more love than we ever knew was possible.  I felt somehow even more love for my husband and the person he is.

Even though it doesn't always feel like it....we know that our hospital days will come to an end. That somehow....there are happier days ahead. Beautiful days. Amazing days that we will get to spend together with our sweet little girl.

For that.....we can't wait. 

Stepping Forward.

No matter the trial you are facing, the hardships that are placed in your path.....or the courage you feel you lack..... Hope can always be found. 

Life is so beautiful, my friends. Sure it can be hard.....sure there are moments that seem impossible to overcome.....

But you are not in this alone. 

I realize this more and more each day. Love is powerful. Prayer is real.

I think the secret is to keep moving forward...no matter what you are facing. Not every step is easy....I have definitely made my fair share of awkward....clumsy steps...but each step brings something greater...

Like strength. 

Laughter. 

Light. 

Peace. 

 "Believe in God; believe that he is, and that he created all things, both in heaven and in earth; believe that he has all wisdom, and all power, both in heaven and in earth; believe that man doth not comprehend all the things which the Lord can comprehend."

                           Mosiah 4:9