MRI results

MRI results, in the simplest form I can try to relay them:

1. Severe asymmetric ventriculomegaly (fluid on the brain, and significantly more than was there at 20 weeks)

2. Cervical meningocele (spina bifida) at the cranial vertebral junction.

3. Microphthalmia with tiny dysplastic left eye (extremely underdeveloped)

4. Cleft lip and palate.

At the ultrasound yesterday they were also able to see that his heart is slightly facing the wrong direction. And, of course, we know about his clubbed foot. 

The discovery of his tiny dysplastic eye brought greater concern about genetic abnormalities. One too many birth defects is cause for concern that the problem could lie in his chromosome makeup. With this knowledge and encouragement from the doctors, we are reconsidering having the amniocentesis done to determine what we are up against. 

We will be set up with neurologists at Primary Children's Hospital, and hopefully get an appointment in 2 weeks. We will discuss with them if there are any options for surgery or help they can offer Max's condition. Based on what we are able to find out there will help us decide the next step and creating a plan. If there are things we can do for him surgically, that offer him some form of quality life for some time then we would want to have an amniocentesis to determine if, genetically, he is compatible with life. If he is we can make plans to deliver at the University of Utah, where he can be taken to Primary's immediately for surgeries.

If he isn't compatible with life, or if the neurologists don't see a good outcome for his condition, we could opt to have me deliver at our local hospital and enjoy however much time the Lord gives us with Max.

So, for now, we wait for our appointment with Neurology. 

Let me be honest with you, people. I do not feel brave. I do not feel amazing.

I feel overwhelmed. And anxious. And SO tired.

I also feel completely in love with this wiggly baby boy growing inside of me. I am not anxious about being Max's mom. Getting the opportunity to be his mother will be the greatest honor of my life. And I'm certainly not worried about Tyler being Max's Dad. Hello, if you know Tyler at all you know he is the perfect Dad for the job.

What I'm worried about, what I am most scared of, is having so little time with Max. The conditions that he faces are so, extremely serious. Even with miracles I very well believe can happen, he is still going to have a lot of problems. And it is likely that his time with us could be very short. Now, I don't know what "short" means when it comes to a lifetime. Hours? Days? Months? Years? But when you are a parent, anything less than your own lifetime is just too short for your child.

I wasn't alive yet when my parents lost Shaun. Their firstborn son died, unexpectedly, at just a few months old. I spent many Sunday afternoons growing up looking through Shaun's photo album, staring at the pictures of that tiny casket and the sweet, sleep-like baby in the little sailor outfit that lay inside. No matter what sadness I had endured then I could not begin to imagine how that must have felt for my parents. What kind of indescribable pain bursts in your heart when you bury your baby? Now, my fear is that I may just have to find out what that pain feels like.

The Lord has made us strong, stronger that we could ever be on our own. I know He will continue to carry us and hold us up as we faithfully endure the trials that come. 

But, gosh, I just don't know. If I'm just totally honest. I just don't feel ready for that. I'm ready for any challenges of parenthood and raising a child with special needs. I'll take it. I'll do it! I can do it. I know I can do this if he survives. If he survives we will love him and help him and get him through whatever comes. But if he doesn't?? Oh, I just don't know.

So, what do I know? I know that the Lord love us. I know that whatever is meant for Max's life we will accept, despite the pain. I know that Tyler and I can do anything, get through anything together when we are teamed with our Lord and our Savior. I know that no matter how inadequate I feel for this challenge, somehow Heavenly Father will make me adequate. I know that families are forever, and even if we lose this sweet boy at some point, we will be together again in Heaven someday. 

I know that we are loved and prayed for by many, and we hope you all know how grateful we are for that. 

Just keep praying.

XO

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. 

What Boston Taught Me

To our sweet miracle baby, Boston:

I will forever be grateful for all that you taught me in the short time I had to carry you in my womb. Even though I will not get to hold you in my arms, I will always carry you in my heart. 

You taught me that the Lord hears and answers prayers:

For 2 years we hoped and prayed to start a family. In October, as the 2 year mark fast approached, I felt the weight of infertility crushing me and my grasp on hope was loosening. I prayed to Heavenly Father with all my heart to be pregnant. I felt like I would completely lose all hope if I had to go into 2014 still trying. I felt like I was teetering on the edge of my sanity, but I felt God promise me he wouldn't push me past my limits. The next month, we found out that we were, finally, pregnant with you! Now, we knew that we COULD get pregnant! We knew that Heavenly Father had heard our pleas, and he had blessed us.

You taught me about true love and how to feel pure joy:

When I married your Daddy I thought nothing in this life could feel happier than that, and that I could never be more in love than I was that day. Well, when those 2 blue lines told me you were part of our family, when we heard your heartbeat, when my bump started to show, I couldn't even begin to find words to describe the joy that filled my heart. And Daddy and Mommy fell more deeply in love with each other, because we fell hopelessly in love with you. Just 2 days before we found out we lost you, Daddy had swung me into his arms and swore he had never been so happy in his entire life, and that I had never been so beautiful. Thank you for that, baby.

You taught me to be brave:

For the first time in my entire life I wasn't afraid. For once I didn't let stresses or worries get in my way. I enjoyed every moment that I carried you! I fearlessly believed that I had nothing to worry about. I never once worried I would lose you.

At first, when we found out we lost you, I felt guilty. I felt like I should have known. I thought I was a terrible mother, How does a mom not even know her baby died? But I came to realize that had I known and spent what little time we had worrying, like I normally do, I would have never enjoyed my 12 weeks of pregnancy. Oh, I enjoyed it so much! It was beautiful and amazing. I can't believe I ever thought for a moment that I was showing too early. Now, I am so grateful for my little bump that meant I had you growing inside me at one time. 

You taught me to believe:

More than ever, without a doubt, I know that God exists. The ability to create life is a remarkable gift from God. How else could it be that you formed from this tiny part of Dad and this tiny part of Mom? It is absolutely by divine design. As my body started to change, I felt so much closer to the Lord and believed in Him so much more. 

You taught me about Miracles:

You are the greatest miracle of our lives! You came in to our family just when we needed you and, even though you couldn't stay, we will always be grateful you came. 

You taught me about my Savior:

Losing you was both the worst and most spiritual experience of my life. I felt my Savior by my side every second that my heart was breaking. He picked up the pieces of Mommy and Daddy's hearts and put us back together. His atonement lessened our suffering and freed us from the anguish of guilt and anger. His love helped us survive. 

Baby Boston, I carry you in my heart forever. I'm so grateful for the lessons I've learned from you. I know that is why you came. You came to teach me; to make me better. 

Love,

Mommy

Thank the Lord for Miracles and Baseball!

Well, as you and the rest of baseball fandom know, the Red Sox won the World Series. We met our buddies, the Brandleys, at McDonald's for celebratory ice cream and hoped that Boston's win would award us the Luck we needed to finally get pregnant. We had much to celebrate in the King house that night, so with Meg and Phil's blessing we returned home, and celebrate we did ;)

2 weeks passed. On Tuesday morning, Nov 19th, I awoke feeling... different. Something just felt new. I still hadn't started, but still had a couple of days before I was supposed to. I wanted to get thoughts of "maybe I am pregnant" out of my head and move on, so I grabbed my last pregnancy test. I waited the 3 minutes as nonchalantly as usual--after 30+ negative pregnancy tests you begin to expect nothing more... I picked up the test to throw it in the trash, as I always have. I prepared to grasp my chest together, as I always have, when my heart broke again over another failed test.

Before I dropped it into the trash 2 blue lines caught my eye.
There's never been 2 LINES before! I thought...
I pulled the box and test instructions out of the trash and frantically held the test beside the examples to double and triple check that I was sure of what I was seeing and began to laugh hysterically as I tried to find the words,
"Ppp... Prregg... Pregnant! I'M PREGNANT!"

As the realization of my dreams finally coming true rushed over me I fell on the bed and began to just bawl, and laugh, and pray. I poured out my thanks to God between bursts of laughter and overwhelming tears. I could not believe this was really and truly, finally happening! It couldn't be real! But I knew it was.
How was I going to tell Tyler?!

I picked up the phone and greeted him with sobs. Thinking I must have found out I wasn't pregnant Tyler asked if everything was okay, and I just blurted out
"I just took a test and I am pregnant!"
"WHAT?!" was all Tyler could blurt out back to me...
"Hold on Hold on... Okay I was about to walk in to a meeting. What did you just say to me???"
"Tyler, I'm pregnant!"
All I wanted to do was be right beside him and hug him so tight as we both cried tears of joy over the phone. It was the happiest moment of my life, getting to tell Tyler he was going to be a father. 

We both had long days at work but, I think, when we finally got to see each other that night, it was the longest hug in history! Nothing could possibly feel more happy than this...

Or so I thought, until we saw our tiny little bean, measuring 6 weeks, the following week. Everyone at Reproductive Care Center congratulated us and we showed pictures of what we thought was the most beautiful thing in the world, which looked like a tiny gray blob to everyone else. And again we thought that nothing could possibly make us happier...

Then, at 8 weeks, we heard the thud of Baby Boston's heartbeat. We melted. Our hearts were absolutely had by this little one now and forever.





And then, at almost 12 weeks, we were going to share the happiest news of our lives with all of you. Our hearts were so full we could burst! But, at todays's appointment, we discovered our worst nightmare. The doctor searched for the baby and could find no heartbeat. I think my memory will never lose the image of the look on her face when she looked me in the eye, grabbed my hand and explained to me what was happening. Tears filled her eyes as my world crashed around me and the sound of Tyler's quiet sobs traveled across the room.

The baby had stopped growing since the last appointment and there was no longer a heartbeat.

Our hearts shattered in to a million pieces as the doctor explained to us that we had experienced a "Missed Miscarriage," where there are no signs that the baby has been lost. We sat in shock while the tears flowed. All the words i could form were, "Please, God. No." This could not be happening. When would I finally wake up? It has to be a dream, right?

It's not a dream. It's so very real. Our tiny little hope of a baby is still inside me, but its heart isn't beating anymore. That beautiful sound we fell in love with a few weeks ago has vanished. And, now, I feel as if my own heart can't beat either.

I feel so incredibly blessed to have had the time I did to carry this sweet Baby Boston. It truly is the greatest blessing that God can give to women, even if I only had 12 weeks to enjoy it. We treasure the time we had, and we will treasure Baby Boston in our hearts forever. 

I am grateful for the last 2 years that have taught us to lean on the Savior, and that made me appreciate this opportunity so much these last few months. My heart will never be the same and forever ache for the baby I wished so much to hold.

Thank you all for your love, support, and prayers.

and Thank you, Lord, for Miracles and Baseball.

Much love.