Better, Stronger, Braver

The last few days have been difficult for Tyler and I. Being in the NICU can be exhausting and overwhelming as you sit there, hopelessly useless. And realizing Ty has to go back to work on Monday hasn't been easy on us.

The NICU can be a very special place with a very special spirit, but is also a very difficult place to spend the majority of your time. We've had some very tender and beautiful spiritual moments with Max that we will treasure in our hearts forever. But we've also had very scary experiences. Only a few days into our stay we were offered a very real awakening into what can happen here when, the night before Max's surgery, his roomate went Code Blue and we heard the cries of his parents across the curtain as they lost their first baby. As long as I live I'll never forget that sound, the sound a mother makes when her baby is dying.

In the NICU you are constantly stuck between wanting to be beside your baby all day, while also wanting to run screaming from the room. Max has anywhere between 2 to 5 roommates at a time. All of which usually aren't on a ventilator, so they can cry. And those poor babies really cry. Max cannot cry because of his ventilator, but his face cries when he's upset and it's heartbreaking to look at his soundless pleas for help. Yesterday there were just 2 nurses for 4 babies. All the babies were crying, alarms were going off for every baby, but the babies who cried got the first attention because those babies can be held and rocked for comfort. So I sat in this room, while every bell and buzzer sounded and babies screamed in pain and I watched Max's face twist and squint while his low oxygen monitor rang and no one came. I wanted to yell, "Why isn't anyone checking on my baby?!"  I wanted to run screaming from the room. But how could I leave my poor Max? I just wanted to hold him close and tell him it will be okay. But I can't do that. It takes 3 nurses to move him just for our daily 30 minute hold time. And now he's lying here so upset and all I can do is hold his hand, try to calm him with my shaking words and cry into my arm. Finally, someone comes to suction the junk out of his chest that occasionally builds up from the ventilator. Tyler comes back from the bathroom and I grab my pump bag and run for the mother's room.

I feel, at times, overcome with great inadequacy at being Max's mother. Especially when I abandon him because I selfishly cannot stand to be in his room anymore. I'm so in awe and in love with this perfect boy, but cannot believe God picked the most imperfect mother. I mean, Max is so special. He has this gigantic spirit. He is incredible. I wouldn't trade Max for anyone else and I don't want him to be anyone else. He is perfect to me, just as he is. But I am not perfect. I am so flawed. And I am unsure as to why the Lord thought I would be best for him. I'm so grateful! I'm so lucky! But I wish I was better, stronger and braver for for him.

I sometimes worry he doesn't know me or realize who I am and wonders where his mother is. He has had 10 different nurses, multiple doctors, a variety of respiratory therapists, and neuro specialists over the last near 2 weeks so, for all I know, he thinks I'm just another voice in the crowd. And despite being there all day, I'm constantly leaving him to go pump or eat, which gets frustrating because I just want to stay with him always. But I know I can't. So, yesterday afternoon while I pumped in the mother's room after running away I cried and prayed.

How can I be strong enough to do this?

Are you sure you I'm worthy to be the mother to this incredible boy?

Please, make me better. Please, make me stronger.

Please, help me be as good as Max.

That night I went home and listened to a talk from our church's General Conference, and these words suddenly seemed like they were written just for me.

"God will take you as you are at this very moment and begin to work with you. All you need is a willing heart, a desire to believe, and trust in the Lord.

Gideon saw himself as a poor farmer, the least of his father’s house. But God saw him as a mighty man of valor.

When Samuel chose Saul to be king, Saul tried to talk him out of it. Saul was from one of the smallest tribes of the house of Israel. How could he be king? But God saw him as 'a choice young man.'

Even the great prophet Moses felt so overwhelmed and discouraged at one point that he wanted to give up and die. But God did not give up on Moses."

- Dieter F. Uchtdorf, It Works Wonderfully

I have to accept that I will have my emotional days. After all, I am only like 2 weeks postpartum. And leaving your baby in the NICU doesn't help that emotional roller coaster. And while I may not feel like I am good enough, the Lord sees something in me that I cannot. He sees my greater potential. He sees who I can become. And where I lack, He will make up the difference. He will mold me into the kind of person that can mother one of His most special spirits. All I have to do is be willing, have faith, believe and trust in Him.

No matter what trials we endure, this applies. We are weak, but with the Lord we can be made strong. And we can all be better, stronger and braver.

Xo.

For the Love of Scars

Today we were able to attend the first of many, I'm sure, church services at Primary Children's Medical Center. What a humbling and perfect service. There is no worrying about what to wear or how your hair looks here. Disheveled, tired parents in pajamas or days old clothes and kids in wheelchairs and hospital gowns gather in a small auditorium to pray, sing hymns and renew their spirits. After the service they had donated fleece blankets for all the patients to take. Tyler picked out the perfect one for Max buddy.

The speaker at the meeting today chose to talk about scars, which seemed so fitting as Max and I both got big scars this week. He talked about how we get scars and how they leave their story and impact on us forever. He talked about the Savior's scars in his hands and feet and what his sacrifice and those scars mean to each of us.

This week I had my first major surgery. My c-section scar will make a beautiful and permanent reminder of carrying Max. Where once I wondered if life would ever grow, the Lord granted me a miracle. That scar will be a constant reminder that miracles happen when you have faith and endure to the end.

Max also had his first surgery this week that will leave two scars on him. One on top of his head, where they placed an external drain to begin relieving the fluid in his head. Another on the back of his neck where they removed the meningocele. These scars, we will teach Max, represent LIFE and how his life was saved. Both the meningocele and the hydrocephalus would have killed him, left untreated. Although, neurosurgery on a 4 day old newborn is also pretty life-threatening. So, yeah, those scars are pretty special to us.

Both Max's scars and mine represent miracles. Just a few of the many miracles our little family has seen this week. And I know they won't be the last.

Believe in Miracles.

Xo.

Dear Max, Happy Birth Day!

12:01 AM

It is officially November 17th. I am 34 weeks and two days, and today is your birth day, Max. I lay awake in bed, amazed that later this afternoon I will finally see you. At last, I'll hold you. After all this time and waiting, I'll get to see you snuggled in your daddy's arms.

This day is a welcome surprise! Yes, you are a little early to the party, but I can't say I'm that upset about it. I've been so anxious to meet you. I just want to see your face and hold you, so I'll know everything is alright.

1:28 AM

Yep, mommy is still awake. I just started getting my midnight munchies, but I'm not aloud to eat after midnight. I promise to let go of my hangry grumpiness once you arrive, but your poor daddy is going to have a hard time with me while I starve all morning. Anyway, I woke up to pee. Then I got side tracked taking my old chipped nail polish off. I really should try to sleep, but the anticipation is killing me, kid!

4:42 AM 

I wonder what its like on the other side, before you open your eyes here. Are you anxiously getting ready to come? Are you so excited to finally join us? Do you have lots of people to say goodbye to? Has your uncle Shaun been with you, watching out for you? There are so many things I wish you could tell me. I'll settle for a snuggle, though. I think I'll know everything I need to know when you wrap your little fingers around mine. The world will be still and everything will be right for a moment, then.

7:06 AM

Good morning, buddy! Only like 7 hours until we meet. We love you so much. Be so good! Stay strong. We'll be seeing you soon.

10:12 AM

We're heading to the hospital. Kid, this is for real! Our phones have been blowing up all morning. So many prayers are being said for you. There is so much love for you. I don't think you can even understand how many people love you and are praying for you. You are incredibly special, Max.

1:38 PM

Hey buddy, they're going to get you soon but, as you will learn, hospital time is always a little delayed. Some other baby had to come out much sooner, so we got bumped a little later. 

I'm so excited to meet you! If you hear Mom kind of freaking out (or having a total meltdown), just know its not about you. I feel so blessed and calm about you. However, going over to the OR and getting that spinal block is completely terrifying me. Mom is kind of a mess when it comes to that stuff. You are definitely strong and brave like your Daddy. I'm just more of a worrier, but not when it comes to you. Heavenly Father has made it clear to me that I shouldn't worry about you. You, my little one, are surrounded in the care of angels. This hospital staff and beings unseen to me are watching over you and are ready to help in whatever you need. How blessed are you? Lucky boy. 

Mom is just going to try to get ready to go. I'll see you soon. I love you SO!

5:31 PM

Max Carter King, at 3:09 today the world stopped. The nurse came around the curtain to where your Dad was cradling my head and helping me relax, "Okay Dad its getting close if you want to stand up and see." And then everything turned to magic, Max. All of my life, i have waited for this moment. The last 4 years, I've prayed to have this moment. The room got brighter and my heart started racing. Daddy said, "Okay Brit, he's almost here. He's almost here." And then it happened. I laid on the OR table and watched your Daddy's face, tears filling his eyes, as he watched you come into this world. "Brittany, oh he's here. He's here! Oh he's perfect, he's beautiful! He's here." In awe again, "He's here." I kept asking, "Is he okay?? Is he okay? He's not crying. Is he okay, Tyler?" Dr. Andres heard me and answered, "He's fine, Brittany. You won't hear him cry, but he is okay!" 

Our amazing nurse had offered to take Dad's phone for pictures, and I'm so glad. Just as quick as you came you were gone. Dad said they got you out, held you up for him to see and backed toward the window, trying to keep you in view for as long as they could, then passed you to the head NICU nurse. So, moments that seemed like eternity later, the nurse brought Dad his phone back and I was finally able to see you. Just like Daddy said, you are perfect. You are so much bigger than I pictured! Son, you are definitely not tiny or sickly-looking. You look strong! You are incredible. You are everything and I can't even begin to describe how I feel about you. I'll keep trying. I'm just so filled with love for you. And I'm just dying to finally meet you. They say they'll bring you by on their way to transport you to Primary's. So, I'll see you soon. Be good, buddy.

7:00 PM 

There is nothing I can compare it to. Your birth and the moment we finally met in person, are like nothing I've experienced. Moments in time that are so precious and sacred, I can only guess it must be comparable to heaven. 

The door opens to my postpartum room, and a team of the best flight medics roll in your incubator. I can't even breathe. I can see you. I am seeing you! I hurry, trying to sit up my bed and scoot close to the edge, my incision screaming at me. They raise my bed high so I can get closer. They plug you in, so they can stay for a little longer visit. You are hooked up to a million tubes and cords and the ventilator is breathing for you, but you are here. At last, Mommy is with you and staring at you. I am mesmerized. The let down the wall of the incubator, and they tell me I can gold your hand. Your perfect, tiny fingers wrap around my finger and you squeeze. 

And that's it. I'm your mother. My world has been completely changed and my heart will never be the same again. Max, you are a miracle we were never even sure would happen for us. But everything from your conception to arrival has been nothing but a miracle. After that 20 week appointment, we had wondered if you'd even survive. But you beat all the odds! And honey, here you are- 6lbs 7oz and 19 inches long. You are strong and beautiful and perfect. What more could I ever need? Daddy and I love you to infinity and beyond!

So Come What May.

This weekend has been an eye-opening one for me.
On Friday, Dr Major tentatively scheduled my c-section for 37 weeks. However, Max's head is the size of a full-term baby's right now. If the fluid continues to increase, as it has, and his head grows any more than a 1/2 inch in the next couple of weeks, we will have to deliver at 35 weeks for his and my safety. We really want him to stay in so the rest of him can keep growing for as long as possible, but if its best for him to come sooner then that's what we'll do.

We could really use all your prayers. It would be another miracle if we could get the fluid growth to subside these last few weeks. But if he has to come sooner, then we need prayers that his lungs and other organs can be developed enough to be born at 35 weeks.

Realizing that we only have 3-5 weeks before delivering sent me in to a straight panic attack as soon as we left the hospital Friday afternoon. (Hormones, anxiety and no meds makes for a great combination for your mental health.) I was suddenly too overwhelmed to think straight. Since our 20 week ultrasound revealed everything about Max, I've just been trying to focus on one doctor appointment at a time. I've been just thinking about what we had to do next, what we needed to find out next. Now, we know everything we need to/can know until he is born. Now, its just a countdown to delivery... he is going to come out!

Suddenly my world is changing drastically. In the last 2 weeks, huge decisions have been made that change everything. We are moving next week, I'm quitting my job to be home/in the hospital with Max, and we scheduled our date to have this baby boy.

For the last 3 years, we've rented my Grandma's basement apartment. It has been awesome. This home has been theirs since I was 2, and it has been my home away from home since I moved to Utah 9 years ago. My Grandma's house has been my safe place, my comfort zone. Leaving it is turning out to be so much harder, emotionally, than I ever thought. We are incredibly blessed to be able to move in with Tyler's parents, though. This will allow me to stay home and take care of Max, which is something I never imagined was possible for us. Plus, any of you who know the Kings know that I pretty much lucked out to have the best in-laws in the world. I love them like my own parents. And as happy as I am for the opportunity to stay home after Max is born, I'm also feeling very lost about it. Except for my first 2 semesters of college, I have worked full time since I was 18 years old. Who am I if I don't go to work every day? And I have been at this same job for 6 years. I know what I do, and I'm good at. I suddenly feel so under-qualified to be Max's mom, which I know is going to be an even bigger job than I could ever dream.

So, yeah, realizing all of this in a matter of 2 weeks sent me in to a panic attack. How can I do all of this? How can so much be changing all at once? Everything that keeps me feeling safe and comfortable is about to unravel very quickly.

After spending my weekend drenched in anxiety and trying to pack up our lives to move, I went to church on Sunday feeling exhausted. And just as He does, God let me know he loved me and knew me through a hymn. We sang "I Believe in Christ," and I was overcome with the feeling that the hymn was picked just to help me. I have always loved this beautiful declaration of belief in the Savior, but on Sunday the words took on new meaning to me.

I believe in Christ; he is my King!

With all my heart to him I'll sing;

I'll raise my voice in praise and joy,

In grand amens my tongue employ.

I believe in Christ; he is God's Son.

On earth to dwell his soul did come.

He healed the sick; the dead he raised.

Good works were his; his name be praised.

I believe in Christ; oh blessed name!

As Mary's Son he came to reign

'Mid mortal men, his earthly kin,

To save them from the woes of sin.

I believe in Christ, who marked the path,

Who did gain all his Father hath,

Who said to men: "Come, follow me,

That ye, my friends, with God may be."

I believe in Christ--my Lord, my God!

My feet he plants on gospel sod.

I'll worship him with all my might;

He is the source of truth and light.

I believe in Christ; he ransoms me.

From Satan's grasp he sets me free,

And I shall live with joy and love

In his eternal courts above.

I believe in Christ; he stands supreme!

From him I'll gain my fondest dream;

And while I strive through grief and pain,

His voice is heard: "Ye shall obtain."

I believe in Christ; so come what may,

With him I'll stand in that great day

When on this earth he comes again
To rule among the sons of men.

"I beleive in Christ; so come what may"

No words were more needed in my life at this moment. Whatever is scary, whatever worries we have, whatever is changing; it doesn't matter, because I beleive in Christ. Those words were so powerful to me. As stressed as I was about all that is coming, I suddenly knew I could do it.

I beleive in Christ, in the atonement that sanctifies me and in His great love that holds me up. So, come what may. With Christ beside us, sometimes carrying us, we can get through anything. 

XO.

Inside all of us is Hope.

We were in shock and amazement after the great miracle discovery that Max's DNA was "normal" and indicated that he would be compatible with life. Even our doctors were stunned by this news. With this information we were one step closer to being more sure of his viability. The last of the big concerns, was his heart. It's slight tilt raised a lot of red flags. So, we were sent down to Primary's for a Fetal Echocardiogram (an ultrasound targeted on the heart and its function). Our doctors had warned us that they had no idea what this misposition of his heart would mean. He might need heart surgery before any others after birth, or his heart may not even be able to survive. By the night before our Fetal Echo I was a disaster of emotions. I was sure we'd gotten too excited about the news of his DNA and we were just going to find out that his heart would be the end to it all and we would still lose him.

The tech came in, introduced herself and explained that as long as the baby cooperated the Fetal Echocardiogram should take about 30 minutes... Tyler and I exchanged a look, knowing how Max does NOT cooperate. Again, Max's position (head to cervix and facing my spine) made it extra difficult to get all the pictures and recordings they needed.  The ultrasound was almost an hour and a half long. Yeah, when you're pregnant, laying on your back for longer than 5 minutes feels like suffocating torture. So, that was great! Not. Anyway, the tech was nice, but very quiet. I'm sure she was just trying to focus and, since she is not the cardiologist, unable to really give us any information while she performed the test. But her silence gave me time to create a million ways this was all going to go badly. I would try to ask her questions, but her answers were always vague and short. I felt like I was drowning. 

When she finished and left us to go get the cardiologist, I lost it. I started unraveling, telling Tyler I knew something must be terribly wrong. He did his best to calm me, but I was a lost cause by this point. 

The cardiologist came in and started the ultrasound again, looking at a couple more things. Now I was sure we were doomed... But he smiled, turned the lights on and said, "So, after seeing your history here with this little guy, I'm happy to be one to give you good news. His heart structure looks fine and is functioning properly." My mouth dropped open. His heart is fine? The cardiologoist went on to explain that the wall of the left ventricle is thicker than normal, which could indicate a metabolic syndrome, but that they'll just have to look again after he is born. Overall, the doctor couldn't see any negative effects from the heart's tilt. 

Based on that, we can officially move forward with Hope that Max will be with us for much longer than we ever imagined! The two greatest concerns that should've dashed our dreams of ever bringing him home have been completely neutralized. MIRACLES HAPPEN!

We can now have more Hope than ever! Hope that we'll bring this sweet boy home with us some day. Hope that he will grow up and be with us for years to come.

Of course, there is still Fear. Fear of the unknown to come. We don't know how long he'll be in the NICU at Primary's. We've already been warned that he'll need  a minimum of at least 5 surgeries within his first year. The unknown is scary, and as humans, we are prone to Fear it.

But the unknown can also be an Adventure... Life with Max will be our greatest Adventure, yet. Just as it has so far, it will continue to have highs and lows, miracles and trials, achievement and defeat. But we would take this Adventure any day over never getting Max at all.

Inside all of us is HOPE.
Inside all of us is FEAR.
Inside all of us is ADVENTURE.

This quote doesn't come from Maurice Sendak, but it does come from the theatrical version of Where the Wild Things Are, and I love it. It speaks so much truth. We hope and we fear, and we head out into adventures that fill us with both! Remember, that it is okay to be afraid sometimes, as long as you don't let it cloud your Hope. Always hold on to HOPE.

XO.

All we need is a chance...

Anxiety. 

SO MUCH ANXIETY.

This last week we've waited for the results of the Microarray test. As I told you last week, the initial look showed a translocation of a piece of the #5 and a piece of the #18 chromosome. So, the sent my amniotic fluid to be viewed under Microarray for a closer look to make sure that the swap didn't result in any duplication or depletion. Either of those could mean that Max won't be compatible with life after birth.

So... yeah... Anxiety!

Each day I hoped I'd hear from our genetic counselor, Brent, and each day I didn't I worried more. Finally, on Thursday, I couldn't take it anymore! I had to call the office at Maternal Fetal Medicine anyway to let them know that I had recieved an appointment time for the Fetal Echocardiogram (Cardiologist), and I thought I might as well bother Brent. The receptionist was sorry to report that she did not know if my results were in, and Brent wasn't even in the office on Thurdsdays. She promised to take a message and have him get back to me Friday. Then, suddenly she asked if she could put me on hold. I waited through three loops of the most obnoxious "hold" music. When she returned her voice was excited, "Brittany I can't beleive it, but Brent just walked in and I told him you were on the phone. He checked his desk and your results are here. Let me transfer you."

Brent, "Hey Brittany, how are you?"

*heart pounding, hands shaking, tears threatening*

Me, "I'm so sorry to bug you, but I've just been so anxious to find out if the mircoarray results came in."

Brent, "Not a problem, they must have just come today... and I have good news for you..."

Me, "Seriously?!" *tears pouring, heart racing*

He went into great detail that I cannot even try to repeat. So, basically they did NOT see any duplications or deletions in Max's DNA from the translocation. 

This means that MAX IS COMPATIBLE WITH LIFE!!!!

Yes, Max is still fighting an incredible uphill battle. 

BUT HE CAN FIGHT!

WE CAN FIGHT!

HE HAS A CHANCE!

For now, this is all I needed. Now, we can pursue whatever surgical options they can offer us to help him survive. I just needed to know that he has a chance, and now I know he does.

Here's to not missing any chromosomes and having chances;

here's to Max King!

XO.