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

Threads.

I wasn't planning on posting an update this week. I figured that as soon as I would sit down to type.....my frustration over the past week would overflow....

Here is an example of how our nights have been:

10:30 pm-Feed Adalyn  and put her to bed...sleeping soundly

1:00 am-She gets woken up by a seizure. One of us soothes her back to sleep.

2:00 am-She wakes up....seizure....getting a little irritable,,,falls back to sleep.

3:00 am-Time to feed her

4:00-8:00 am-Still awake. Each time she tries to fall asleep....it only lasts a few minutes before she is woken up by a seizure/spasms. We alternate sitting with her.

9:00 am-Exhaustion hits for her. Crying/screaming ensues.

2:00-3:00pm-After 4-5 hours of straight crying.....she finally falls asleep.

Being on the steroids has been rough. Ever since day one of starting them....she has had a 4-5 hour stretch each day of crying. Saying irritability is a side effect is an understatement.

Ironically....instead of controlling her seizures/spasms.....it made them skyrocket (We have been told this is likely an atypical response or simply because her seizures are progressing). She has been having seizures too numerous to count. If she is awake....she is typically seizing at least once every 10 minutes. She hasn't been able to sleep for more than 2 hours straight before she wakes up from seizing.

Which in turn...adds to the rough nights. David and I were typically running on fumes each day...often getting 3-4 hours of sleep. Thankfully....my in-laws are heaven sent....and have took time watching Adalyn so we could sneak in naps. Showering was a luxury...not a necessity.

I also choose this past week to stop pumping. Cold turkey. All I have to say about that is....ouch....ouch....and ouch.

I felt so frustrated. It was the stinky pits. I felt so defeated....especially because things got so much worse. I felt my prayers were unanswered....and I couldn't see why.....There were multiple nights of tears.

Yet last night....as I sat up with her....I started thinking about this past week. The past two nights have been better. She has been calm during the night, even though she is awake most of it. And her crying has been during the day (much better than the first week when it was during the night). Last night, she was so calm...she would fall asleep for a little while...then even when she seized she would just squeeze my finger and look at me until she fell back asleep. It was so peaceful.

I never cease to be amazed at the person she is. Aside from this steroid course.....she isn't typically a crier. If I were her...with all that she has going on....I would cry all the time. Even with the steroids, once her 4-5 hour stretch is over, she doesn't cry much.

Our stock supply of Adalyn's daily medicines

She has so much love....and has touched so many lives. I look around at all of the things we have for her and have realized that the majority of all the things we have are from other people. Since we didn't know what was going to happen when she was born, we only bought a carseat, a diaper bag and a few clothes.

What we have now...the clothes, toys, blankets, books....pictures...so many beautiful things have come from people that have selflessly given different items to us. As I look around the room last night, I again cried (seriously, it's a talent at this point) with gratitude. All of this things have been given to us because Adalyn has touched them in some way. She is strong. She is full of love. She is a miracle. And I am so humbled to be her mom. Even more...I am humbled to know that other people have been inspired by her little journey. For that I am so thankful.

I love this....look closely...not only has she popped out her cannula, but she is drooling. 

The past week, I felt like I was hanging by a thread. A thread that was fraying.....and lacking in strength.

In holding her little hand last night, I finally began to see other threads.

My husband....who has the patience of an elephant (I don't really know if elephants are patient...but for this...pretend they are). He is the most sacrificing and selfless person I know. When the wee hours of the morning strike...and I am tired...and have my sassy pants on...he doesn't even bat an eye. He is SO good with Adalyn. Even when she has been crying for hours. We have finally figured out the best way to get through the nights. It includes diffusing lavender, a colorful nightlight, and relaxing music.

Our family...They are incredible. Seriously. We get so much comfort from them...emotionally and physically! I'm pretty sure my sister had to give me a pep talk frequently. All of my in-laws are so giving. My mother-in-law took me for my first ever pedicure this week. Talk about a tender mercy! I didn't stress or look at the clock the entire time. I think I am half tempted to live permanently in a pedicure chair. They have also given us time to go on a date. Even if it was just to get snow cones last week....and even though we simply talked about Adalyn the entire time...it was much needed.

Our friends. We can't even begin to thank them enough. For believing in us. For believing in Adalyn.....for sending us messages, oils, cards, and things for our sweet girl...Even when we were too caught up in other things to adequately thank them.

Our faith. Though the hard moments sometimes seem like too much to bear....the peaceful moments never fail to touch my heart. To remind me there is a purpose. Adalyn's life...the people she touches...the hope she brings....there is a reason for all of this.

Each of those things add another thread to my own weak thread.

And for another week.....those threads help me to hang on and keep moving forward.

We will likely be ending the steroids a littler earlier than planned. Because of her response to them....we will likely start weaning her off of them this week and move on to the next medicine.

When a Heart Aches..

The day after I had the ultrasound where we began finding out the mountains Adalyn would face, I had an appointment with my OB/GYN. David had to work....and wasn't able to come. I was okay with going alone....I knew she wouldn't have any new information. She would just have the report from the ultrasound doctor.

She came in the door, sat down, and started apologizing.

Then she started telling me how she truly thought it would be best if I just chose to terminate our pregnancy.

WHAT?!

I felt like that was an unexpected cold slap in the face. Regardless of what we had found out, there was no way that ending our pregnancy had even crossed our minds. We had already seen her sweet face and heard her little heartbeat.

I said exactly that to my doctor. She stared at me like I was absurd. Her response was letting me know that she was certain that the genetic tests would show a terminal chromosome error anyway (which it didn't). And that even if it didn't, she was certain she would have to deliver a stillborn baby in a matter of weeks. She didn't see too much of a point in continuing our pregnancy.

I was crushed. I was angry. I was hurt. My heart ached so deeply. 

I walked out of her office and never went back.

That moment already seems like a lifetime ago. We were only beginning to realize how much our hearts would ache. 

Adalyn has changed our lives completely. Yes, it has been hard...

It is hard not knowing the amount of time we will have with her. It is hard watching seizures and spasms rack her innocent little body. It is hard to have to plow her full of medicines each day. It is hard having to choose between undesirable medicine side effects.....or watching her seizures. It is hard watching her lose some of the abilities she has gained.

It is hard seeing other babies her age....Not because I am not so happy for those sweet babies...but because my heart aches at what her life won't be.

However....some moments I feel such peace..and I am so grateful for this path. There is absolutely no way...especially now in seeing how special she is....that we could have ended her little life. I am reminded the things we face that are the hardest, are often the most worthwhile. 

I cannot say this enough...Adalyn has changed me for the better. There are moments after she has a bad spasm....or in the wee hours of the morning...when she looks right into my eyes with eyes so full of understanding. So full of love and life. Almost as if to say....."I'm here....and it's going to be okay."

It was an elephant kind of day. 

This past week, I was angry. I know...you may be thinking...."Angry again? I thought you worked through this already!" Well unfortunately, I have to learn things several times.

Adalyn's seizures and spasms have been awful. It has make my stomach churn to watch and my heart heavy. The steroids have made her rather irritable, especially at night. She cries for hours at a time. Just as she finally falls asleep, she is jerked awake by a spasm or seizure...making it take even longer to get her back to sleep.

I felt angry at watching this perfect....innocent girl go through so much. I just wanted the clouds to break for her. I prayed so hard to find understanding. Letting God know the anger that was filling my heart. In my mind, I kept wondering....."How much can one heart continue to ache?"

In sacrament meeting today, I finally found my comfort.

The lyrics for this song came into my mind:

When through fiery trials thy pathway shall lie,

My grace, all sufficient, shall be thy supply.

The flame shall not hurt thee; I only design

Thy dross to consume, thy dross to consume,

Thy dross to consume and thy gold to refine.

(How Firm a Foundation)

In case you, like me, don't know what dross is....I looked it up. It means something worthless.

I was reminded that our struggles are not hopeless or given for no reason. God is with us the entire time. He uses them to refine us. To shape us into something even more beautiful. To help remove our rough edges...to help us....if we let Him....let our light shine.

I have felt that this past year. It has drawn me closer to my faith. It has drawn me closer to my Savior. It has drawn me closer to my husband.

I also read a talk by President Monson. Read the full thing here.

"When the pathway of life takes a cruel turn, there is the temptation to ask the question “Why me?” At times there appears to be no light at the end of the tunnel, no sunrise to end the night’s darkness. We feel encompassed by the disappointment of shattered dreams and the despair of vanished hopes. We join in uttering the biblical plea, “Is there no balm in Gilead?”¹We feel abandoned, heartbroken, alone. We are inclined to view our own personal misfortunes through the distorted prism of pessimism.... 

From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise: Joshua 1:5 “I will not fail thee, nor forsake thee.”⁷Such comfort is priceless."

Each of us will face those times when our hearts ache. Some days.....I feel that ache is permanent. I am realizing the reason our hearts ache....is because of our ability to love. If we didn't love....if we didn't care....the trials we face likely wouldn't be as painful.

But then what would life be? Love is worth it. It is powerful. So powerful. It brings light...and life...and so much good. The aching pains we may feel....in turn help show us a greater depth of love. It may not feel okay in the moment. You may find yourself punching pillows in anger at 3 am...

Makes my heart melt. Every time. 

Just keep holding on. He will not forsake us. Any of us. There will come a day when all of our struggles...all of our heart breaking moments will be make right...and beautiful. 

I believe that with all of my heart.

So...I will soak in the peaceful moments of Adalyn sleeping snuggled through my arms. And hold on tight to that in the moments that seem too much to bear. I will hold to love. I will try to hold to the comfort of the prayers offered on our behalf. I know we will still face countless moments that threaten to break us...but together...we will find a way to hold on.

24 more days left of these steroids.

I took this video a couple weeks ago....oh how we love this girl! 

Choices.

The year 2015 was going to be our year.

David was graduating. We would be moving to a new, permanent place. We would have a new baby. David would start a new job. Everything we had been aiming for was finally going to be happening! We had a plan. Things would all happen in steps. It was all going to be incredibly exciting. It was going to be easy!

Now as I sit here and reflect..... Nothing seemed to go according to plan. David did graduate. We did move. We did have a beautiful new baby. But none of it happened as I had imagined. It has been hard. It has been the most soul-stretching few months on my life.

The first few weeks we were home from the hospital were the hardest for me. I felt like I was trying to run a marathon with my shoes glued to the ground. I was grieving. I was afraid. I felt so unprepared for our future. Some days it seemed that my eyes had sprung a permanent leak. I wanted.....I ached to find peace.

In the past two weeks I have realized, in part, why everything was feeling overwhelmingly hard for me.

My mind was in this negative cycle. I was so hard on myself. I kept questioning everything. I saw so frequently the hard aspects of our life.

I was choosing to feel that way.

So. I have been trying with all my heart to change. We have a choice when we face trials. We can choose to find gratitude. We can choose to face our seemingly insurmountable giants saying...."Today I can try."

We can choose joy. 

This girl loves her daddy so much! Finally able to catch a smile!

In the hard moments......I repeat that in my head a hundred times. Choose joy. Choose joy. Choose joy. 

And you know what? It has helped me so much. I feel my Savior holding me up. I feel that I can bear my burdens. I feel more patience. I feel hope. I feel that I can continue working to be the best mom for our sweet girl.

Bath time!

As I stare at her....I am in such awe of her. She is officially 3 months old today! How did that happen?? This perfect little soul has taught me so much. I am so blessed to get to be her mom. Not many people can say they get to hold a little angel each day. To hold a little girl who will remain perfect and sinless her entire life.

Last week was a big week for her. She had 6 appointments at Primary Children's. Audiology. Ear Nose and Throat. A swallow study. Neurology. Surgery follow up. And the comprehensive care clinic. David and I had been so nervous on the drive up there. Especially for the swallow study and the ENT doctor.

We had been told that Adalyn is at risk for loosing her ability to swallow around 4 months. If she was starting to loose that ability, we would see it during the swallow study.... she would be aspirating everything. We had decided that if her swallowing was worsening, we wouldn't proceed with the plans of fixing her lip and palate.

As the swallow study came, we received relatively positive results! Adalyn's swallowing is slightly stronger than it was during her first study. Meaning that her slight aspirating is likely because of her palate and not neurological.

We were so happy! Also....we found the humor in Adalyn falling asleep right in the middle of the study in the X-ray chair. Our sweet girl was so exhausted. She hit her wall....and there was no arousing her.

We were also pretty nervous for the ENT visit, (ear, nose and throat). Here....they were going to scope her respiratory tract and check to see if proceeding with the surgeries would make it harder for her to breathe.....and to check her muscle tone. The doctor, who we loved, told us he feels it would benefit her more to proceed with fixing it.

Celebrating on the 24th! I don't think anyone ever wore a bonnet better. 

Another wave of relief! Yet...I've also found myself feeling nervous. In my mind.....I had ruled out these surgeries. Already, imagining her having to go through surgery again makes my heart ache. But I know these surgeries will help her so much. Especially the palate. It is hard to watch her struggle with so much mucus on some days. And to swallow without a palate? Seriously. Hard. Try swallowing....and then be grateful for your palate!

The rest of her visits flew by. So much information.

We visited with her neurologist....who we also love. She reminded us how unique Adalyn is. There is no other baby with her set of neurological anomalies. We made a plan for trying to get her seizures and spasms under control. We will be starting a round of steroids next week.

Every part of me had originally wanted to avoid the steroids. We didn't want to put her through it. However.....because of the past week...I am so eager and prayerful for this round of steroids.

Adalyn's seizures and spasms have increased significantly. Likely because she has a cold again. She has been having over 30 a day.... It makes us feel so helpless to be holding her...and watch her little body go limp. And just wait for her to start breathing again. Or to watch her go into spasms over and over and the pained expression on her face.

Because she has been having so many.....she has again become very sleepy. Our beautiful awake moments with our sweet girl being alert and happy are less frequent. Her squeals and smiles have also lessened.

So....we are praying so much for this steroid course! She will be on the steroids for three weeks. The steroids will suppress her immune system....so that means we will be even more hermit-like for the next couple months! To get even a cold while her immune system is suppressed would be very hard for her. In preparing us for the winter months....we were reminded how important it is for us to keep her out of crowded places.....to avoid being around lots of other even slightly sick kids....and stay up with all of her vaccines and our own. No pressure, right? It makes me feel like carrying a lysol bottle around with microscope goggles and attacking every germ I see. Too bad those don't exist!

Phew. Hopefully you made it this far in reading.

Overall.....we are continually carried. There is no way David and I could do this without the support and prayers of so many. Thank you again for your prayers, messages, comments, texts and phone calls. We truly are SO blessed each day with so much good.

The past week, we met with an amazing couple we had met in the NICU. They have recently lost their beautiful daughter. She said somethifng that has stuck with me.

We won't just survive through hard trials. We will thrive again. 

And so that is what I am ending with.

We will thrive. We will keep choosing joy. We will seek for it.....even during the days when the clouds seem dark.

Happy 3 months Addie Grace.

Thank you for choosing us to be your parents. To let me be your mom.

Thank you for bringing more love into my heart than I ever thought possible.

Thank you for being our strength.

Thank you for still loving me....even though I can never seem to get the lyrics right for the songs I sing you. Good thing you have Dad!

We love you more than words could ever convey!

Oh how I adore this hairy little back!