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.

For After Much Tribulation Come the Blessings.

For verily I say unto you, blessed is he that keepeth my commandments, whether in life or in death; and he that is faithful in tribulation, the reward of the same is greater in the kingdom of heaven.

Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation.

For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand.

Remember this, which I tell you before, that you may lay it to heart, and receive that which is to follow.

Behold, verily I say unto you, for this cause I have sent you—that you might be obedient, and that your hearts might be prepared to bear testimony of the things which are to come.

Doctrine & Covenants 58:2-6

I love this scripture from the Doctrine and Covenants. It has always been such a comfort to me during times of great trial. It reminds me what is important. It reminds me of what I believe.


I believe in a plan. I believe in a grand, divine plan. I believe we were divinely created by a loving God who blessed us with the opportunity to come to have an earthly life. I believe that we knew to some extent that this existence would not be any easy one, but we were happy to take it on. I even believe that maybe we had some involvement in our plan- that maybe we even chose some or all of our trials. 

I believe we came to this life to be tested, to grow stronger, to live faithfully, to become better; and I believe that God has amazing blessings in store that await us in the life to follow in Heaven.

Here in this life, it can be so hard for us to see beyond our trials. When we are wrapped in the most difficult times we can feel so trapped, like we'll never get out. Infertility seemed like the longest years of my life while we endured it. Now, as I look back, I cannot believe how fast time passed. And now, as I am past that trial for a time, I can see the blessings that it offered us. Our lives are like that, too. And someday as our earthly lives are ending, we will look back and think how those trials were but small moments in the grand scheme of of our life and eternity. 

If we stay close to the Lord through our trials, if we keep His commandments and endure faithfully, then we can come out stronger and better. If we let them ruin us, then we will be ruined. We won't be better, we'll just be bitter. Bitterness never was happiness, people. I promise you that! Life is not meant to be perfect. Nowhere in the scriptures has the Lord ever said he promised us a perfect life here. And really, how would we ever learn anything if we had a perfect or easy life? I'll take who I am today over who I was 5, 10, 15 years ago. I am a stronger, smarter, better person because of the challenges that I have fought through my life. I have been refined by the fires of tribulation and I am grateful.

Then there's Max; our sweet Mighty Max. I don't think his conditions are a curse. I don't think his struggles are to be viewed with sorrow. I told you I believe in a divine plan. Well, I believe his divine plan is a special one. I don't think his plan is necessarily to come and be tested the same as the rest of us. I believe his plan is to bless the lives of others with his spirit. I believe his plan is to come and give us and others the opportunity to give service. How special he must be that he doesn't need all the trials and tribulations that all of us do. He's just that good. I feel it every day as I carry him. His spirit is such a special one. I mean, how amazing his spirit really must be that he gets to come to this earth and just be a blessing to others. 

You may think I'm full of crap. You may think my beliefs are wrong. But these beliefs are what get me through these hard things. And I'm not going to let the trials of this life destroy my happiness. I'm not going to give up when times are tough. And I'm not going to sit back and act like I don't believe it.

"For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand... for this cause I have sent you—that you might be obedient, and that your hearts might be prepared to bear testimony of the things which are to come."

What could be more comforting than that? Why wouldn't I want to believe in that?
XO

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.