Still Standing..

**Disclaimer...the first part of this post isn't written with the intent to make any feel sad....or feel sad for us! We truly are blessed. Writing tends to be the best way I process. With that...I include the good...the bad...and the in-between.**

The hardest question to answer as of late is "How are you guys and Adalyn doing?"

As soon as someone asks us that.....my mind goes over a hundred different thoughts.

Do we tell them how awful her spasms are now? How they make our stomach churn and our hearts hurt to see her little body contorted....face pained....and breaths coming out in gasps? Do we tell them that she seizes so frequently....that at times she has a seizure and a spasm at the same time and is jerked from one to another for several minutes?  Do we tell them how if we get 4 hours of sleep at night....the night was good? Do we tell them how she can't really sleep for more than an hour without having a seizure or spasm? Do I tell them how when it is my turn during the night....I literally rest with one eye open...staring at the monitor.. watching her heart rate...ears peeled listening for any stop in her breathing? Do we tell them how scary it is to face each week....wondering if things will continue to get worse for her? Do we tell them how frustrating it is to make decisions of medicines to put her on....knowing the harsh side effects? Do we tell them how hard it is...knowing that if we can't get these seizures and spasms under control....they will continue and progress and worsen until her little body physically can't take it anymore? Do we tell them that as much as we try to push these thoughts away.....we wonder if she will truly make it to her first birthday? Do we tell them how we can go from feeling pure joy and happiness.....to complete defeat in the same day? Do we tell them how hard it is watching her loose the abilities she has gained?

Like I said.....a hundred different thoughts.

So tired!

Instead of letting that dam of emotions spill out....I tell another truth....

She is growing. She is so adorable. She is incredibly strong....and faces all that she has on her plate with more grace than I could ever fathom to have. Even with having such frequent seizures and spasms.....she doesn't cry. Her eyes well up with tears at times....but she endures it.  She has enough love in her little fingers alone to lighten up a whole room of darkness and touch the hardest heart. She keeps us strong each day. She makes us laugh when we feel like crying. She gives more to us than we could possibly ever give back.

At times, being up with her in the middle of the night....have been some of the most spiritual moments of my life. 

Lately....I have been feeling a little bit like Peter in the New Testament. He and the other apostles were in a boat in the middle of a fierce storm. Stresses were high. They weren't certain if they would make it....when suddenly they looked out...and saw Christ standing on the water. Peter was immediately comforted. He knew everything was going to be okay. In his excitement....he left the boat to walk to his Savior. However....after a few steps... the howling wind and the waves around him filled his heart again with fear. He began to sink....crying out once more to Christ. Without missing a beat...Christ was there....to again pull him to safety. 

So many days I can see the hand of Christ in our lives. I am comforted. Yet...there are so many moments where I see the storm around us.,...I think of all that we face....all that Adalyn faces...and I feel myself beginning to drown. I loose sight. It takes daily effort to seek His hand. To find the comfort that we so need.

There is so much I don't understand.....sometimes I let my mind run wild with all the moments we might not have with her....will we ever hear her giggle? Hear her say mom and dad? Teach her all about princesses and superheros?

I have come to realize that those thoughts are a vicious cycle. It is pointless...and takes away from the here and now. We have both felt the importance of enjoying each moment...even the hard ones. 

I soak up each moment of holding our sweet girl. My heart feels with more love than I can ever describe when she lets out a long sigh while she sleeps. I can't help but smile like a kid on Christmas after giving Adalyn a massage and she is so relaxed and drooling as I rub her hairy little back. I laugh as she lets out the stinkiest toots you have ever smelt from a baby. It makes my day to hear her occasional little squeals....like she is trying to have a real conversation.

Seriously....so relaxed. How can you resist that hairy back! 

I realize more and more each day that this life is but a moment. A long, beautiful and hard moment. The moments in this life are fragile. They easily come and go. The amazing thing is that this life is only the beginning. The hard moments will not last forever. The good moments will become greater. All that is unfair about the here and now will one day be fair.

So until then....soak up each moment. Enjoy every smile. Don't be afraid of letting your tears out. The hard things you face will teach you greater levels of compassion then you can imagine. 

Tender moments! We are so grateful for their help....and being babysitters as we nap.

In taking care of Adalyn...I have truly felt that very thing. I have learned greater depths of love and compassion. Sometimes....I think I am giving every ounce of strength I have in making sure we are doing all we can.....I fail to see that I am getting so much more back. I now read stories or hear about others facing hard trials and my heart stretches for them in ways that it never did before. I find myself loving strangers so completely...and rooting for them in their own hard trenches. I find that my heart overflows with love for my husband and my family

So we keep going. We keep holding on. We keep believing. We keep loving. 

Adalyn has officially been off of steroids for a few days. We will wait another week before starting another. This new medicine that we may try has some pretty harsh side effects...one of them being vision loss. We continue to pray that she won't suffer the side effects of the medicines that she is on! Several different people have sent us links about Cannabis oil....we thank you for thinking about us! We want to try it.....however...it isn't FDA approved. Before we can try it....we have to try all of the medicines and treatments that are FDA approved before we can qualify for it.

Adalyn's activity gym that her vision therapist made for her

We can never thank you all enough for your continued prayers on our behalf!


We have an amazingly sweet friend that sent us a children's book....the following is taken from it. I have teared up so much in reading it... .To our sweet girl....you will be 4 whole months this week! This is exactly how we feel about you! Never in a million years would we trade away one second with you.

"Never before in story or rhyme (not even once upon a time) has the world ever known you, my friend, and it never will, not ever again..... Heaven blew every trumpet and played every horn.....on the wonderful, marvelous night you were born."
-One the Night You Were Born, Nancy Tillman

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. 

Finding Strength.

I sit here staring at the calendar in anxious disbelief (if that combination of feelings even makes sense). Some days tick by slowly....and it still feels  unreal that within a month, we will have our little girl. Other days...I realize how much we have going on this month in addition to our little girl arriving, all of the decisions that lie ahead....and I feel like time is moving on turbo speed.

I am 37 weeks along....which technically means...I'm considered full term. I think of that with amazement.

There were times during these past nine months where I was certain time was reversing itself. Times when the months of April and May seemed eons away.  We had all the time in the world to prepare.

Or so I thought.

Now it's the second week in April....and part of me feels a slight panic. Am I ready for all that lies ahead?? Are we  ready for all that lies ahead?? I think of those questions almost every night.  I stare at the things we have packed and ready for our little girl. I replay a zillion different scenarios over in my mind of possible outcomes.

I feel like I still cycle through so many emotions. There are moments when I am on a high of hope....and certain that all will work out....that we will have our little girl. Sometimes....I even forget that she has so many anomalies.. Then there are days like yesterday...

Our doctor told us she would be presenting our baby's case in front of a team of doctors. Any doctor that may even remotely be involved with her care will be in this meeting. They have to prepare for worst case scenarios.  After that...they will want us to meet with the neonatologist.....to discuss with us those possible worst case scenarios. They will need to know what David and I want to do....should things go wrong...How much intervention do we want? Endless other questions that I (we) don't even want to think about. It brought all of my emotions and fears rushing to the surface.

Leaving our appointment yesterday, I felt like the thin thread that was holding my emotions together was threatening to break.  

Once again...as we got into the car, I sobbed. I felt my frustrated, hot tears continuously roll down my face. How come we have to face this...I kept asking David....How come our little girl has to face this....Why does absolutely everything surrounding her birth and life have to be so unknown...Why does it have to be so hard.....How can Heavenly Father think we are strong enough for this?? Feeling helpless and defeated.....I squeaked out...I just want to be a mom. I want to see you be a dad.

David....as always my anchor....held my hand, comforted me and let me cry it out. We have both gone through these same emotions numerous times.

A few hours later....I read a talk about fear. About turning our fears to Christ. It hit me like a train...and brought me to my knees. There is One who knows the unknown that we are facing (something that I have to remind myself of often). Christ has promised to walk with us through our darkest unknowns. He never fails to send us His comfort. Even during my moments of frustration. Even when I feel myself wavering. Even when I am afraid.

He brings peace. He brings hope. He can hush our fears when nothing else in the world can. I know I am not strong enough to face what lies ahead for us. But I know that Christ is. In His strength, we are capable of facing any trial and overcoming any doubt or fear. I know that God has a plan for us....and a plan for our baby....because we are His children.

And He loves us with a greater love then we can comprehend. 

Our little girl has brought us so much happiness already. She has taught us so much about pressing forward with faith, even when the path is hard and our steps are unsteady. She is continually growing and developing. Every other part of her is doing great. The main worry is her brain.

When she is born....the biggest concern is if she will be born breathing.

Her brainstem isn't affected....so there is a high chance that she will be able to breathe on her own. However....because of the other areas of her brain that are affected...they have no way to be certain. With any one of the areas affected, she could be born with normal neurological functioning....they are just uncertain with her specific combination of anomalies.

So....we pray. And ask for your prayers as well. We pray that she will be born with the ability to breathe on her own. That she will have the neurological functioning she needs to survive and defy the odds that are placed upon her. We pray that she will have sight and mobility. And that when the time comes....they will be able to fix her palate to enable her to eat.

Most importantly.....we pray for His will to be done. Whatever that may be.

We believe in miracles.

We believe in our beautiful little girl. 

I know I frequently sound like a broken record...but we are continually thankful for so many prayers. I have never had my testimony in something so certain. Prayer is powerful.

It has helped me hold to hope. It has helped me continue to believe in our little girl....to believe in her own fighting spirit. To believe that she can overcome the trials she will face. It has gotten me through a number of sleepless nights. It has helped me face the normal pregnancy joys of heartburn, back pain, and nausea. It has give both David and I the courage to face the unknown.

Together, with the strength of the Lord, we can face all that lies ahead. He takes each of us....imperfect as we may be.....and shapes us into something even greater. He sees all that we cannot. No matter the outcome...Our little girl, David and I....we are a family.

That type of love is eternal.