Be Still & Know

"God is our refuge & strength, a very present help in struggle.

Therefore will not we fear.

God is in the midst of her; she shall not be moved: God shall help her.

Be still, & know that I am God.

The Lord of hosts is with us."

{Psalms 46}

I came across Psalms 46 in my scripture study the other morning. I cannot tell you enough how much I love this passage. It is one of those I've come across, and feel like the Lord inspired it just for me. Here I sit thousands of years after it was written, crying on my couch, thankful that the Lord loves me this much. 

God is our refuge & strength

In a world of trial and tumult, I choose to seek refuge in my faith. My faith is in the gospel of Jesus Christ. My faith is in my loving Heavenly Father. Others may have faith in other sources, but this is mine. I believe having faith in something, in some higher power is so vital to the human existence. Without faith, life lacks meaning. Life would seem hopeless and pointless without seeking a higher purpose. Where could I find refuge in my most difficult hardships without my faith? I couldn't. I would drown in the darkness of anger and misery. 

In my most difficult times, I have felt the presence of choice. Choice between faith and misery. Because really, that is it; that is the choice. When life throws you headfirst into trials, you have that choice to make: be miserable and angry, or be faithful and strong. I'm not saying it is an easy choice, but it is the choice. We have so much more power than we often give ourselves credit. Tyler and I do not have to be miserable and hopeless forever because it took so long to get pregnant or because we lost Boston just short of 12 weeks pregnant. We do not have to be angry with God now that we know the struggle ahead with our sweet Miracle Max. We CHOOSE to stay faithful, to feel hope, to feel love, to be made strong through the Lord. And by choosing faith, we know we'll find happiness - no matter the outcome. 

The day I found out I was pregnant, I went to the temple. I sat alone, in awe of the miracle He'd offered me. I knelt and prayed. I told Heavenly Father how grateful I was that He had given me this blessing, and I promised Him that no matter the outcome of this pregnancy I would NEVER deny Him. I was terrified to lose this one, like Boston, but I swore to Him that I would show my gratitude by never giving up my faith. Months later, as I sat in shock as Dr. Andres explained all of Max's serious conditions, I felt myself begin to become overwhelmed with fear. I felt myself start to question, "Why would you do this, God?" I was reminded of the promise I had made Him. I was reminded of the miracle He performed in creating Max. I was reminded that my reaction to this trial was my choice. I took a deep breath, and I chose to be faithful and let the Lord give me the strength I needed to get through this.

Therefore will not we fear

Even in our darkest times, we can rely on the light of Christ to give us peace.

One of my favorite hymns:

The Lord is my light; then why should I fear?

By day and by night his presence is near.

He is my salvation from sorrow and sin;

This blessed assurance the Spirit doth bring.

The Lord is my light; tho clouds may arise,

Faith, stronger than sight, looks up thru the skies

Where Jesus forever in glory doth reign.

Then how can I ever in darkness remain?

The Lord is my light; the Lord is my strength.

I know in his might I'll conquer at length.

My weakness in mercy he covers with pow'r,

And, walking by faith, I am blest ev'ry hour.

The Lord is my light, my all and in all.

There is in his sight no darkness at all.

He is my Redeemer, my Savior, and King.

With Saints and with angels his praises I'll sing.

Be still, & know

I'm not saying that trials are a cake walk. Infertility and miscarriage are two of the worst pains I have ever experienced. Pain so deep I thought I was being ripped apart. I can only imagine how that could be magnified if we lose Max after birth. But I also know the comfort of peace. I know the joy of faith in Christ and trusting God's plan. I know what it is like to feel like you cannot go on any farther, and to be lifted and carried in the arms of our Saviour. I have been still, and waited for the counsel of my God. I have heard his voice in my heart. I have heard the whisper of his sweet comfort. And I know. I know that He is God.

I know that by Him and through Him I can be made strong. 

Dear Max,

While I sit here, trying to decide if I really need to pee or if you are just kicking my bladder again, I thought I'd just write you a little love note. Get used to it, cause I'm your mom and I plan to write you an infinite number of sappy love notes throughout your life. Deal with it, kid.

Sweet Max, this last week has felt like an eternity. I cannot believe it has only been a week since we were told all those things that have had us so worried about you. But you have been such a good boy. I'm so sorry that we've had to shake up your house and poke and prod you so much. I know that must have been the worst. Trust me, it wasn't super fun for mom, either. Just know that we love you so much, and we're just doing this all for you, buddy. I wish I could tell you we won't bug you in there anymore, but that isn't true. You and I have a lot of that ahead of us. Just keep being brave and stubborn. We need you to be strong. And if you would just cooperate a liiiiittle better, those ultrasounds might not have to be so bad. (Just a thought- stop mooning us, and show us the important things. We know you are a boy and we know you have a bum. You're hilarious. We get it!) We just really need the doctors to get a good look at things, so they can help you as much as they can.

We just want you to be okay. You're all we think about and pray about.

Max, how can I even begin to explain to you how loved you are? More than this world is wide. More than the oceans are deep. More than your dad loves Pepsi and pizza. More than your mom loves cinnamon rolls... remember when I ate 3 for lunch the other day? Well, you are loved more than I was sick after that, which is a lot! You are loved by grandparents, aunts, uncles and cousins and friends. Just wait til you get here, and you get to meet all the people who adore you. They are almost as anxious to see you as we are. If you'll just stay, you'll be the most loved baby boy in the world!

We have faith in you little one. I know your soul and your sweet spirit. I know you can do this. I know you can fight and be strong and get here, into our arms. I just want to hold you and snuggle you, even if it can't be for very long. So, keep kicking and fighting and being so stubborn. We'll do all we can out here. We'll pray and go to doctors and do everything we can for you. Most importantly, we'll just keep loving you with all we have. We can do this! Daddy, Mommy and Max. We three kings. We'll make it through this together, baby.

You were made from great love, and you will be healed by greater love. 

 Love, Mommy
XO

Plans

Romans contains my favorite scriptures of all time. 

Romans chapter 8 is just full of good stuff. But the last verses of the chapter have brought me comfort during the hardest times in my life.

Romans 8:35-39

Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution or peril, or sword? Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

I may be a pretty disorganized person at times, but I do like having a plan. And what's hardest for me about all of this right now is not even having part of one, not even a little plan. Tyler, however, never needs a plan. He can switch gears, change directions at any moment and it hardly even slows him down. I lay awake at night going over and over all the possible scenarios for the next few months trying to decipher a variety of plans based on what they could, and hopefully will, tell us from the MRI we have scheduled. I look up each of the possible diagnoses and I research the possible treatments and I see how each of them begins with, and I hear how our doctor always prepares us, "if the infant survives." And it's all too much for a mother to fall asleep at night. I just can't. I can't plan this, because we just don't know enough, yet. And despite all my research and effort, I truly cannot make a plan for Max right now.

Tyler just has one plan: Get Max Here. By whatever means, to be determined, Get Max Here. And, really, that's it. That's the only plan. So, for now I need to learn to take this one step at a time and take that plan as it changes. Plan to fall asleep, plan to go to AZ next weekend, plan to have the MRI, plan to get the results, plan to make a plan based on those results. Plan to pray, plan to read my scriptures, plan to go to the temple, plan to hear the counsel of the doctors and the counsel of the Lord.
Whatever steps need to be taken, the only plan is just to get Max here and in our arms for however long the Lord has planned.
That is the plan.

...And whatever the plan, we will be more than conquerors through Him that loved us.

Mighty Max & a New Adventure

I bubbled with excitement ALL day Friday. We would see our sweet Baby Miracle- for, like, a whole 30 minutes! It was our 20 week target ultrasound! I'd seen many of these before. They go over everything for you, like count his toes, look at his heart, check all his organs, etc. All the while you get to stare at your baby and "Oooh" and "Awww" as much as you want. More than anything, we just so badly wanted to see his face! That stinker had yet to give us a good look at his cute mug, and we wanted to see it.

So, of course, he doesn't show us his face. 

That wiggly boy has himself lodged so low, with his face tucked away so good that we never see it. But we have fun anyway watching him move his arms and legs around faster than we can keep up- he is just as wiggly as his Dad, and I am so smitten with both of them. So the radiology tech shows us, he is measuring exactly the right size, his kidneys are filtering blood, his stomach is digesting amniotic fluid, and his bladder is full- ALL good signs! She can't get a good look at his hands, and she can never be sure if she just sees one arm or leg moving back and forth or if she's actually getting a good look at right and left. I mean, this kid, he MOVES! She mentions she'd really like to see his face, and apologizes as she grinds the wand into my low abdomen, trying to get him to turn and get a look. I feel bruised, and still No Luck. She tries for a long time to get a good look at his chest, but he won't hold still enough, and she mentions something about not being able to get a good view to count all the chambers of his heart. 

Eventually, she removes the wand and the screen goes blank, and I just long to see him again... But she doesn't wipe off the ultrasound gel. She leans forward, and her face becomes serious, "The doctor will be in soon and will probably want to continue this ultrasound so I won't wipe off your belly, yet." And the room begins to spin and my vision gets fuzzy as she says the words no parent ever, ever, ever wants or imagines to hear, "I don't want you to be blindsided when he comes in, so I want to warn you, I see a lot of concerns."

I think I've blacked out for a moment. I try to come to, and I blink back at her in the dull light of the darkened room. I feel Tyler squeeze my hand tighter, but I cannot look at him. She repeats herself so she can be sure I understand, squeezes my arm and reassures me that she will be back with the doctor soon and they will explain everything. I just nod, because my throat is closing up and I cannot speak a word. I feel like every inch of me is filling with panic and I might explode. But I don't explode, I just start to cry.

Concerns? What concerns? We just couldn't see his face, right? She couldn't see his heart well enough to count all the chambers, but that doesn't mean they aren't there, right? WHAT CONCERNS?! Is my sweet boy going to be okay?

I, finally, turn to Tyler and his eyes reflect how I feel, but he remains calm and tries to calm me. "Its gonna be fine. Everything is going to be fine." It sounds more like he is talking to himself, but I know he is trying to hold it together for me. We try to talk about other things, try to keep our minds off it. It doesn't work. We are both terrified.

We wait for what feels like an eternity for her to return with the doctor.

Dr. Andres comes in the room, and he is cheerful to meet us but very serious all at the same time. There is a lot to talk about. All those "concerns." 

Folks, are you sitting? This is a long, overwhelming list. 

First and foremost, the fluid on his brain. It is called Ventriculomegaly. Ventriculomegaly is when the lateral ventricles in the brain are too large, meaning they have too much fluid. Baby boy's are about 3 times too large. This is, obviously, not ideal for brain development, and from the looks of it his brain has not developed much because of it.

Image from University of California, San Francisco

Next, they show us his right foot, they are sure, is clubbed. Because of how he moves they can't be sure about the left. It looks like it might be, but they also may just be seeing the right foot again.

Then there is a cyst/fluid-filled sac off the back of his head. They look and look and move around it, but cannot see exactly where it is attached. This can be caused by a neural tube defect, but Dr. Andres cannot be sure which since they can't get views of other things that might give them a better indication. It is either a very rare and serious form of Spina Bifida (spinal cord fails to develop properly) or Encephalocele (an opening in the skull). 

Whichever of the neural tube defects it is may have been caused by what they are fairly certain is an amniotic band they see floating near the baby. An amniotic band is caused by strands of the amniotic sac separating and entangling parts of the fetus (like plastic bags entangling fish in the ocean). They can only be fairly certain it is an amniotic band, since both the doctor and the radiology tech have never seen one on an ultrasound before- they have only ever read about them. It is extremely rare.

Image from University of California, San Francisco

Dr. Andres takes all the time we need to discuss and talk about all these huge medical terms we cannot begin to pronounce, let alone understand. We are, at this point, totally overwhelmed and in shock. This poor, helpless, little boy has so many challenges ahead of him. How do can we help him? What can we do for him? How do we even know where to begin?

They schedule us to return Monday. Dr. Andres wants to disperse our ultrasound and notes to colleagues at the University of Utah Hospital and Primary Children's for 2nd, 3rd, and 100th opinions. He also tells us to get baby to move into a better position by Monday, so we can ultrasound again and look for more signs and issues that they could not see today. We are asked to think about having an Amniocentesis for more help in determining more information. The doctor and radiologist leave us in the room. The door shuts, and almost as if it flipped a switch, the tears burst from our eyes immediately. 

The next 2 days are spent on phone and text trying to update family and friends as best we can. There is so much unknown and we are so overwhelmed, we can only handle going through the raw details with a handful of people, and just asking others for their prayers. We are terrified, stressed, anxious and, yet, we feel calm. We think of this boy, and we just know he is so very special.

By Saturday morning we decide that, under the circumstances, we need him to have a name now. This wild, mighty and miracle boy will be named Max. And we adore him. Despite the fear of the unknown, and our great concern for him, we feel so blessed that he is ours. 

Today (Monday), we returned to the doctor to see if this cute little bugger had turned around. Max had changed positions, somewhat, but still didn't want to cooperate too much. He is stubborn, which we think is good under the circumstances. They did get a good enough peek at his face to see he has a cleft on both sides of his lip. And they were able to see 4 chambers of his heart, although they are concerned about its position. They still could not see exactly where the cyst was connected, but they were able to see that there is NO brain matter in it! However, His lower spine looks great, which means if it is Spins Bifida , it is the worst most uncommon kind.

They recommended holding off on the Amnio, which was a relief since we still aren't sure about it. No matter what they tell us from it, we cannot and will not end this pregnancy. We will cherish him for all the time we are given. Instead we are being scheduled for an MRI at The University of Utah hospital. Hopefully this will tell us which of the neural tube defects Max has.

Amidst all the struggle, He is a funny boy. He doesn't like to show the things they need to see, but he is sure happy to show us his penis and his butt. Hello! He IS Tyler's son ;) We love this kid so much already!
Suddenly, I know why it took almost four years to get here. Suddenly, I understand. Four years ago, I could not have been prepared for this. Four years ago, my faith would not have been this strong. Four years ago, this may have just destroyed us. But after the last 4 years of learning to rely on the Lord and his timing, being led by faith, dealing with the loss of Baby Boston, and aching for a child so much I feel like Tyler and I can take on any challenge together now. I know we can do this.

The Lord has been preparing us for Max.