Things we know and more we don't know...

Racked with anxiety about getting an amniocentesis, I made a quick last minute decision to just get it done before our appointment at with the neurosurgeon at Primary Children's Hospital. I really just wanted to get it over with. Despite years of monthly blood draws and all kinds of shots for infertility, I'm still not that keen on needles. Plus, the idea of one long enough to reach my uterus made my head spin. So, two Thursdays ago, Tyler and I went back to see Dr. Andres and get the amnio over with. I am SO glad Tyler was there. It was the longest 50 seconds of my life that that needle was in my belly. At first you think, Oh this needle is so skinny it really isn't so bad, but once it enters the uterus and the contractions start and then they wiggle the needle around and fish into place to find the perfect pocket of fluid... So, yeah it was nothing like "getting blood drawn," like they compared it... Anyway, the needle is so skinny that the fluid comes out suuuuuuper slow. I kept my eyes closed the whole time and just tried to breathe through the contractions. Tyler watched it all on the ultrasound screen. He said Max kept reaching out with his good foot to kick at the needle like, Hey get out of here! That silly boy. Now we just had to wait 10-14 days for the results.

A few days later, Monday the 21st had FINALLY come! At last we were going to go meet with the neurosurgeon at Primary's and get a detailed review of our MRI, and find out what options might be available for Max.

Sunday night, before bed, I was just excited to go and get some answers.

But then, the lights were out and Tyler was snoring, and I was left alone with my thoughts. That is the absolute worst thing for me! Because I am a worrier, I spent the whole night tossing and turning, then I spent the morning having a panic attack. I couldn't stop thinking about all the ways this appointment could go wrong...

We could be late. SO late that they make us reschedule.
He could be called off to surgery and they could make us reschedule.
I could forget all my questions and come away with no answers.
He could tell us he's never seen or operated on a case like this before.
He could say there's nothing they can do to help Max.

Well, we weren't late. My fear of being late put us there 45 minutes early, and then he ran 30 minutes late. I'll tell you right now that the waiting room in neurosurgery at Primary Children's is a pretty depressing place. Disheveled parents and family members sprawled out on waiting room chairs look like they haven't slept in days. Some watch movies on their phones or hurriedly type on laptops. Some have whispered phone conversations. Some just sit, looking exhausted and glazed. Occasionally, a surgeon in scrubs comes out and takes them somewhere private to talk. So, since we were early, we sat and took all this scenery in for about 30 minutes. Finally, the nurse came to get us and said it would still be awhile, but we could wait in an exam room if we wanted. We jumped at the chance, in desperation to get out of that waiting room.

So, we waited in the exam room for awhile. Then they moved us to conference room with a big screen where Dr. Bollo could show us my MRI images. The longer we waited the more I started to panic. Tyler made every joke and face he could think of to try to make me laugh and calm down. Have I told you all lately how much I love that guy? Well, I really love him.

At last, Dr. Bollo came in to talk to us. It was a lot of information at once and I did my best to keep up, trying to jot notes as quick as I could. First, he discussed the ventriculomegaly (the enlarged ventricles of fluid on Max's brain). The biggest concern, of course, is the development of hydrocephalus after birth. He explained to us what that would mean and what could be done if that were the case.

Second, we discussed the meningocele (the opening and sac off the back of his neck). So, because it is off the very top of his spine it is technically under the broad, encompassing Spina Bifida category. However, it does not share the normal symptoms of Spina Bifida when it occurs in the lower spine. So, yes and no to that. Dr. Bollo was optimistic though about operating within the first 6 weeks of life to remove the meningocele and close that gap. He explained that it is likely Max may never walk or talk, and his motor skills may be limited. Since the ventricles are blocking view of brain development, it's hard to know what Max will be like. He said that, though it is rare for a meningocele to be that high, he has operated on these before. He sees maybe 1-3 cases like it a year. However, Max is a much different case with his many birth defects.

He showed us the images of my MRI, and pointed out where my bladder was squished off to the side. No wonder I pee all the time! We asked about Max's little eye. Dr. Bollo isn't sure, but he thinks there is an eye there and its just very small and underdeveloped. Tyler says if Max is blind in that eye we'll get him a sweet eye patch to wear. We are just gonna LOVE this little boy SO much!!

Next, our specialist office will help us find a pediatric cardiologist to talk to about the position of Max's heart and how that might affect its functionality.

Finally, the time had passed and my genetic counselor called with the results of the amniocentesis. Of course, as is typical with Max, they didn't really get much from the initial tests. They found that a piece of Max's #5 chromosome and a piece of #18 have switched places. Right now we don't know what that means, how that will affect his viability, or why this occurred. So, they are sending it off for a more detailed, closer look. Yes, something that can look at DNA closer than a microscope! It is called a Microarray test. So, in another week, we will get the results of that and know more about Max's genetic makeup. Sheesh! Right? This kid just likes to be complicated. Always! But we love him so much its hard to really get too upset about it.

Once we get those final results, hopefully, we can make a decision about where and when I'll deliver. If they feel the chromosome swap won't affect his ability to live, then we will deliver at the University of Utah so they can send Max right over to Primary's to start taking proper care of him. If not, then we will just deliver at McKay and love that boy for all the time the Lord blesses us to have him.

So, that's where we are right now. Thanks for being patient. Sometimes I have time to update and keep up with this blog. Other times, all of the doctor appointments, work and duties keep me so busy I cannot even think about getting a blog done.

Love to you all! Thank you for your continued prayers.

I Am Grateful.

I am grateful.

I can sincerely say those are the three hardest words we can use to describe our most difficult trials. Being thankful while we endure some of life's most difficult challenges can seem impossible, but I actually am. I am grateful.

I am grateful for the years we struggled to conceive. I am grateful for my first, albeit short, pregnancy with Boston. I am grateful for this pregnancy and so grateful for Max.

I'm not going to lie to you and say this is all easy and I love it, cause that just isn't true. It, obviously, hasn't been an easy journey and, of course, I haven't always loved it. Infertility was hard on my self worth, on our marriage, and on our souls. Experiencing miscarriage was physically and emotionally more painful than I could have ever imagined. Even now, I can tell you I don't even always love being pregnant- I mean would you love puking for 3 months, peeing your pants when you sneeze, having burning acid reflux 24/7, and steadily packing on the pounds at an alarming rate? Yeah, it's not always the best. And on top of it all, my sweet baby boy is up against some scary odds. Sure, there is plenty to complain about. Some may even think that's all you can do. Everything just sucks and that's it. 

But I just can't feel that way. Despite all the hard things. I can't help but feel so grateful for all of it. Sure, life might be so much easier if we would've just easily had a healthy baby years ago. But that isn't our story. And in the time since we started this journey I have learned so much more about myself, about Tyler, about love, about God, about my testimony, and about how blessings come in all ways, shapes and sizes. How could I say I wish it had all never happened? How could I wish away my faith, my blessings, my strengthened marriage, my knowledge and my testimony just because things were hard? How could I wish away my babies? How could I not be grateful for all of it?

It's a lot like pregnancy. Pregnancy is the most amazing, awful, beautiful, disgusting, magical and weird experience. My body is doing incredible and strange things to grow this small, miraculous human. I am in awe and totally freaked out. I'll take the lack of sleep, the struggle to find clothes that fit, the puking, the growth pains and the charlie horses! I WOULDN'T WANT IT ANY OTHER WAY! It is all worth it to just get him here. To just see him. Even when he's kicking me in the bladder or grinding his little head into my cervix, I'm amazed that he's in there, growing inside me. And I wouldn't trade this experience for anything.

I am grateful. 

Even though Max has presented us with a new challenge, I cannot suddenly say he isn't a blessing. Just because this will be tough, doesn't mean he is suddenly not a miracle. He is a blessing and miracle even more to me now! He is everything! Tyler and I are so in love with him and so grateful. His conditions cannot change that. We know this is not a curse. Heavenly Father isn't punishing us or punishing Max. This is a blessing! Max is a blessing and his life is a blessing. Max is even MORE special to me know. He has the most gigantic spirit that is so filled with love. Carrying him is an honor. Getting to be his mother is an honor. No trial can change that.

As someone once said, trials are just difficult blessings. This will be a hard, but incredibly blessed, journey for our family.

And I am grateful.

XO, Brit

Gratitude

Thomas S. Monson has said, "A grateful heart comes through expressing gratitude to our Heavenly Father for His blessings and to those around us for all that they bring into our lives."

My heart is filled to bursting with gratitude today, and I must share it with all of you. I cannot sit back, as I am abundantly blessed and not thank God and all the angels he has put in place in our lives. 

Our dear friend Megan informed us the other night that she wanted to start a GoFundMe account for us and baby Max. She knows that we have a long road ahead of us with Max, and while we do not yet know everything we will have to face, we do know that there will be many expenses. We were so touched by her amazing gesture, but it made Tyler and I uncomfortable and embarrassed. I could think of SO many other people who could use that kind of help so much more than us. I just didn't know how to feel about this. She assured us it was how she wanted to help, and so it was posted. The words she wrote about us were beyond the sweetest and kindest that anyone could ever say. Those words, and the act alone of her creating and sharing the account was enough to make us feel so loved, but then...

Friends, family, and others started sharing it as well. More beautiful and kind words about Tyler, Max, and I were expressed. We were so moved. We were more than overwhelmed by the love that we felt pouring over us. I could not believe the generosity. I could not believe how people spoke of us and donated to us. 

Our cup, seriously, runner over.  I have never felt so humbled. I have never felt so surrounded by the arms of God through my relationships with others. 

Through all that we have endured you all have loved us, supported us, shared our story, hugged us, prayed for us, fasted for us, given us gifts, given Max gifts, and now even this. It is all just so incredible. It is all so amazing. Each of you make us want to be better people, better family. better friends. We hope to find some way to thank you all individually for all you have done. 

But please know that we are so SO grateful to each of you. We love you so much. Max is so blessed to have so many people praying for him and rooting for him. And we are so blessed to know you all. We thank our Lord for giving us family and friends who are ever-present angels in our lives. We pray that he blesses each of you for all you do for us. 

xo

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

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