My Happy Place

I'm sprawled out on the couch in Max's nursery, thinking. 

One week ago tonight I was thinking about this nursery I'd cleaned and prepared the day before, which I then knew I'd never bring Max home to. 

One week ago tonight we were saying our goodbyes to our son. 

Last Monday, Tyler and I had spent the morning at home putting Max's nursery together, in hopes that we would bring him home in a week or two. The plan was to attempt extubation the next day. Max had been consistently breathing over the ventilator for days, and we hoped he could continue to do so without his breathing tube. We were nervous, but hopeful. So, in trying to remain positive, we'd let my parents stay with Max that morning while we set up his furniture and put all the clothes away in the dresser. Then we rushed down to Primary's to see our boy.

We got to the hospital, and my dad came out of the NICU looking worried. He told us that Max had been having trouble breathing and they had sent for an Xray. When we got back to Max's bedside, the nurse looked relieved to finally see us and said that the Nurse Practioner really needed to speak with us. My stomach felt like someone filled it with lead. I knew this wasn't good. Max had slept all day Sunday, and today he looked gray and even more lethargic. I knew that look... infection. Before she could even speak, the tears in the Nurse Practitioner's eyes confirmed all my fears. It was all about to end.

Max would never see the nursery we spent all morning preparing for him.

Many times over between Monday afternoon and Wednesday morning, I thought to myself what a waste that morning had been. I was angry with myself for spending my time away from Max, and for something that was now pointless. I wished so much I'd left it alone and just gone straight to the hospital that morning. 

Wednesday morning came, and we left the hospital for the last time. We drove home brokenhearted, on no sleep, in a blizzard. Before I could get downstairs, Tyler hurried and shut the door to the nursery. We thought it would be a painful reminder that Max was gone. 

When we woke up a few hours later, we made our way down the hall and slowly opened the door. We stood there in the doorway for a minute, taking a deep breath before we could step in. At last, we walked hand-in-hand into the room and sat down on the couch. We were quiet for a long time, tears streaming down our cheeks. I kept waiting for the inevitable ache, the pain that would surely take hold of my heart within this room. But it didn't come. Instead, peace washed over me. I looked over into Tyler's eyes and he smiled. We were not alone. 

Suddenly, I felt so grateful we'd stayed home to prepare this space for ourselves, and for Max. We may not have brought him home in a baby carrier or laid him to sleep in this crib, but he was here in this room with us. This beautiful, peaceful place was a room for his spirit to reside in our home. He was here. He was with us. And he's been here every day since.

So, here I sit, like I do at some point each day. I sit on the couch and I hum him a song, read him a story and tell him how much I miss him. I sit and I think about him, talk to him and feel the peace of his presence. All throughout my days I miss him and long for him, but here in this room I know he's here. Here, in this room, is my happy place.

Until We Meet Again

Our sweet baby boy returned to his heavenly home on Wednesday, December 23, 2015.
When I started writing his eulogy, I kept experiencing writer's block. I couldn't seem to find the words to say, or how to put down the thoughts I wanted. It occurred to me that I was having a hard time figuring out how to tell everyone else about Max's life and his passing. I just really only wanted to talk to Max. So, I wrote him this letter and this became his eulogy. Reading it at his funeral is one of the hardest things I have ever done. 

I held his fox in my hand, a tissue in the other and I said goodbye to my perfect son.

My sweet boy, Max 

Your story begins long before your birth, long before we even knew you existed. Your story began 4 years ago when we decided we were ready for someone like you. Mommy and Daddy wanted so much to start a family, but Heavenly Father knew we needed a long time to get ready for you. So, he prepared us.

After the first year we started seeing a doctor and found out that certain things weren’t working for Mommy to be able to have a baby. After shots and medications, we were thrilled to find out we were pregnant with Boston. But he couldn’t stay very long and we lost him when I was only a few months along. When we finally felt emotionally prepared to start trying again, nothing worked. Month after month, the medicines that worked before didn’t work again. When the doctors told us we needed to discuss new, more extensive treatments we weren’t ready. Mommy and Daddy just needed more time.

By spring of this year, my heart felt so heavy I could hardly hold it in my chest anymore. I needed help. So, I made a covenant with Heavenly Father. I promised to go to the temple every day for a week, and in return I asked that He would give me the peace I needed to keep moving forward and to know what to do next. I kept my promise, and the Lord did even better on his end. That week, much to our surprise, we found out that we were going to have a baby- we found out about you.

It was impossible. It didn’t make sense medically or physiologically. But after 3 pregnancy tests and an ultrasound we knew it was true. You were a miracle, and you were coming at Christmas. What could be a better gift?!

At 16 weeks, we waited impatiently as the doctor searched and then announced, “It’s a boy!” You should’ve seen the relief on your Daddy’s face, buddy!

At 20 weeks, we sat in shock as the doctor slowly and carefully explained to us that you had a lot of developmental problems. And he confirmed our greatest fears when he expressed that he didn’t know if you could survive even to delivery, or if you’d live long after birth. Our hearts shattered on the exam room floor. All we wanted was to see you, hold you, love you and watch you grow. Max, we prayed and pleaded with Heavenly Father to protect you. Suddenly, despite all the fear and heartache we had in the office, by the time we got home we had the most incredible peace. We knew you were so special and we knew that no matter what happened everything would be okay. It was then that we knew and understood the purpose behind all those years of infertility and losing Boston. Our faith was strong enough now. We were strong enough for you now. Heavenly Father needed us to be the best we could be for you.

We had lots of tests, doctor’s appointments, hospital visits, talks and prayers over the next 14 weeks. Daddy loved to lay his head on my belly to feel you kick, and I loved watching you wiggle and squirm.

By 33 weeks it became clear that the most worrisome of your conditions, the hydrocephalus, was rapidly increasing. The fluid continued to fill your enlarging ventricles, and on ultrasounds you started to show signs of distress. So, at 34 weeks and 2 days, on November 17, 2015 we brought you, Max Carter King into our world.

I laid on the OR table and watched Daddy’s face as he saw you for the first time. His eyes filled with tears, and with a voice so reverent he told me you were finally here and you were beautiful. You couldn’t breathe and they rushed you away for help. Hours later, on their way the Primary’s NICU, they brought you to my bedside and we met for the very first time. Daddy was right. Oh Max, you were SO perfect. I reached out to you and your tiny fingers wrapped around my finger and you opened your eye. Here we were, together at last. Your beautiful big head, meningocele on the back of your neck, your darling tiny blind eye, cleft lip and palette, your clubbed foot, and your tilted heart; despite it all, despite the odds stacked against you – You were here. My heart was bursting and I knew right then that every minute spent with you would be better than being in heaven.

You were the bravest boy and endured 2 very big, very difficult surgeries. You had many angels who helped you and loved you, especially Teresa, Sara and Kim.

When you were 4 weeks old you got an infection, but we got you on antibiotics and it really helped. Soon enough you looked better and more like yourself again. We began to hope that you might be able to prove you could breathe on your own and come home soon. You were so strong and you fought so hard! It seemed like we were going to get our wish when you started breathing over the ventilator and the doctor started making plans to take out your breathing tube. But the next day, everything changed.

When we came in on Monday, we found out your infection had returned and could not be stopped. Your incision sites from the shunt were infected and getting worse. You couldn’t breathe much on your own anymore and you were very sick. They gave us some options, but there really wasn’t much choice. After 5 perfect, wonderful weeks we were going to lose you. We didn’t have much more time.

Heavenly Father blessed us with the most tender mercies to give us the perfect last 2 days with you. Grandma and Papa Garrett had come from Arizona just days before, an angel at Delta airlines had changed Uncle Jason and Aunt Alex’s flights from January for free, and Uncle Jarid had taken the week of Christmas off from work. Teresa, your miracle working nurse, got us a private family room to move into. So, by Tuesday, all the people who loved you most were there.

We knew it was getting harder for you to hold on, but we begged you to fight to stay a little longer. And you did, sweet boy. You held on with all your might to give everyone time to see you, meet you and love you a little more.

At last, in the early morning hours on Wednesday, we couldn’t make you fight anymore. We knew in our hearts we had to let you go. You’d fought for so long to stay with us. We promised you it wouldn’t be much longer before your most special angels, Great Grandpa King and Great Grandpa Garrett would come to take you home to heaven.  You looked so tired there in my arms. It was time. So, Grandma and Grandpa King, Uncle Jarid and Aunt Kylee, Grandma and Papa Garrett, and Uncle Jason and Aunt Alex gathered around us while we held you close. Reverently, each one of them came and knelt before you to say how much they loved you, how you changed their lives, and to say goodbye. Then the doctor and Teresa came, and at long last, took out that stinking breathing tube. They peeled back the tape that had held it in place and we finally got to see your beautiful cleft lip. They slid out that tube you hated so much and you took a deep breath on your own as you smiled. You beat all the odds and breathed for us while we held you close. After 5 long weeks there were no more tubes, no more chords, nothing to keep us from pulling you in close, snuggling you, kissing your face, and holding you just like we’ve always wanted. Your breaths became labored and we told you it was okay. You had fought a good fight and you didn’t need to anymore. Daddy told you we’d be okay, that you could go and we would be fine. But your eye searched ours, as if to be sure. We promised you.

As I held you in my arms and Daddy held us both in his, you smiled at us one last time and took your last great breath, and then you were gone.

Max, you are the greatest miracle of our lives. You are our perfect angel son. We can’t believe you and God thought we were worthy enough for you. We are honored to be your Mommy and Daddy. In just 5 short weeks you fulfilled a great mission on this earth. Without meeting many people, you changed the lives of many. Your loving, incredible, giant spirit reached out through the walls of the hospital, through your pictures, and through us. You made the world a better place. You made people believe in miracles. You rekindled faith and strengthened testimonies. You brought us all closer to Christ. You made us all want to be better.

We wish so much you could have stayed here with us on earth, but we will settle for a guardian angel. How blessed we are to know that families are forever. How grateful we are that you went straight from our arms and into the arms of our Savior.

We love you forever, Mighty Max. You are the King of our Hearts.

Until we meet again, sweet boy.

Mighty Max, fight on!

Its been a hard task trying to keep everyone up-to-date on Max. We've had a select few that we've tried to offer daily/weekly updates, but everything changes so quickly! One day they are telling us one thing and the next day, another. For example, they've told us that they were going to extubate Max on 3 different days. Of course, this never actually happened. So, I've been very careful about my blog and Facebook updates. I want to limit the number of times I have to correct myself.

Here's what has been going on since Max was born...

Max Carter King was born on November 17th at 3:09 PM. Directly from birth he was passed through a window in the OR to the NICU to be intubated. Max was not breathing. His APGAR score was a 2. For those unfamiliar with an APGAR score, it is a test performed on newborns minutes after birth to determine their physical adjustment outside the womb. It is based on a scale of 0-10. A baby scoring between 0-3 is considered critical, and requiring life saving measures. Once intubated, Max was able to begin breathing with the support of the machine.

Checklist of Max's problems/birth defects:

Hydrocephallus - enlarged ventricles, increasing in fluid volume. His head had so increased in size over a few weeks that they decided he needed to be delivered at 34 weeks.

Meningocele/Encephalocele - These terms for the sac on the back of his neck are interchangeable based on the location.

Clubbed right foot - Not near as clubbed as they had thought based on the ultrasounds.

Cleft lip and palate - Cleft lip on both the right and left, with the right side extending into his nose and sinuses. Cleft palate in the back left of his mouth. 

Tiny displastic left eye - At first thought to be fused shut, but has since opened a couple of times. It is so tiny, glassy, lazy and adorable!

Heart slightly turned and small hole - Surprisingly, no worries or problems from either issue.

Amniotic Bands - One of the amniotic bands from my uterus had actually grafted into Max's right cheek, like a little whisker. (It has since dried, shriveled and fell off, but left a scar that extends from the corner of his mouth to his nose.)  We wonder if, maybe, this was the reason Max never changed positions. It is possible that he was teathered in place by the band.

For those first few days, Max was fairly non-responsive and the small movements he did make were quite slow. Like, if you tickled his foot it would move about 15 seconds later. He had grip with just one hand and never moved his head. At the time, his head didn't seem all that big to us. But it was quite big and continuing to fill with fluid. His first MRI revealed more detail than what we'd had done while I was still pregnant, but was not surprising to us. Because of his enlarged ventricles, and the obvious disruption of his central nervous system development, there was hardly a way or place for brain matter to form. What remains is very minimal. Max even lacks many of the basic and vital parts of his brain stem. The neurologist explained to us that with those facts, it is unlikely that Max could ever develop beyond a newborn. It is even unlikely that he could ever perform basic human functions like, breathing, sucking and swallowing.

The fluid in his ventricles had greatly increased and, if we did nothing, would continue to accumulate until it killed him. The meningocele/encephalocele on the back of his neck was not only filled with spinal fluid, but also contained a herniated piece of his spinal cord. Again, if we didn't operate to remove it the sac would become a target for infection that would kill him. If we chose to operate, he may die in surgery. Even if the operation was successful, he may not survive long afterward. As new parents to a baby only a few days old, under normal circumstances, these are realities you never imagine having to face. But Tyler and I had known the frailty of Max's condition for 14 weeks. However, knowing that already, didn't make all of this information less painful to hear. 

We decided to go forward with the first surgery; Max was just 5 days old. Neurosurgery would place a temporary external drain (EVD) to start relieving the excess fluid, remove the meningocele and attempt to carefully push the herniated spinal cord back into place. The surgeon explained to us that the procedure could either improve Max's reflex and mobility, or moving the spinal cord could leave him paralyzed. There was no way to know for sure, but it was a risk we had to take. 

The surgery went great. Max recovered quickly and immediately started showing signs of improvement in his movements and reflexes. The amount of fluid he drained from his head over the next two weeks was astounding to us! When he was about 8 days old, I got to hold Max for the first time. Because the EVD could only be clamped for a maximum of 30 minutes a day, that was the amount of time we could hold him. It wasn't long, it had to be done with much care and caution, but it was heavenly! 

After a little over 2 weeks, they removed the EVD. They monitored his head size to see if it would fill back up with fluid, or if somehow his body could process and drain the fluid on it own. It immediately began to fill up again. All of Max's doctors sat down with us for a care conference to discuss our options from that point. The fact of the matter is, that they cannot anticipate that Max can live very long with his great lack of brain matter. But they, and we, would like him to be able to live as long as he can comfortably. So, in an effort to prolong his life and comfort level we chose to have them put in a permanent drain option, which for Max was a VP Shunt. So, Max had another surgery. This one was a little more scary post-op. He struggled to breathe, even with the support of the ventilator for hours following his return from surgery. Also, He looked surprisingly terrifying. His head lost all its volume in the top center, like a deep cave. They explained to us that the fluid had pushed the plates of his skull apart, and as fluid drained during the surgery the lack of brain matter left nothing to hold up his scalp. Thankfully the fluid had dispersed by the next day and his head looked more normal again.

Meanwhile, Max developed an infection from his shunt in the site on his abdomen. He got really sick for a couple days, but has since improved. As we went in and out of surgeries and recovery, they attempted to bring down the rate and settings on the ventilator. They hoped to be able to extubate him many times, but something always seemed to fail. They performed tests with the ventilator turned off to see how he breathed without the support. Most of the time he was able yo breathe fairly well, but he wouldn't vent off enough CO2 on his own or required too much oxygen, etc. Something always maybe extubating not safe choice.

So, that is where we are now. Our only hope to get him home is if he can breathe on his own. In our care conference today, we discussed how we would get Max home if we can, and what we might expect after we get him there. The neurologist, being honest with us, explained that she didn't believe Max would ever make it home. She doesn't know how he could breathe long enough on his own for us to get him there. If we did actually make it home, her guess would be that he could maybe survive hours or days if we are lucky. He would most likely develop another infection from his shunt or would ultimately stop breathing and pass away.

I have to admit, this was heartbreaking for me. Even with knowing the seriousness of Max's condition, I did not anticipate being told days or hours. In my head, I'd thought months. I understood he wouldn't live long and that he wouldn't develop normally, but I still thought we'd have more time. And as positive as I want to be and as faithful as I am, it still breaks my heart because I love him so much.

While he's in the hospital and while he's intubated I know he'll be fine. But extubating him and taking him home is more scary than exciting. Going home means hospice care. Going home means less time. Going home means taking him home to die. And my new momma heart can't bear to think about losing him just yet. 

Are there still more miracles ahead? I'm positive there are! Do I know what those miracles will be? No, I don't. We may never take Max home from this hospital. We may only have hours or days if we do. He may shock everyone and live longer than they expect. I just don't know. All I know is that I count each day he survives as a blessing. 

We don't know the Lord's exact plans for Max. All we know is that Max was sent here with a special purpose. He has met so few people, but inspired so many. His spirit, his soul are greater than any I've ever known. He is more than I ever could have dreamed or wished for. And despite the heartbreak we will have when we lose him someday, we would never wish for it to have been different. I wouldn't wish for a healthy baby. I wouldn't wish to be home having a normal newborn experience. I wouldn't ever wish to change this, because then he wouldn't be Max. We wouldn't learn what we have. We wouldn't be a stronger, more faithful family. We wouldn't have been blessed to have the sacred, spiritual experiences that have been ours through this process. We wouldn't have Max. 

So, no I would never wish this away. I cherish this trial. I cherish the love of my Lord and Savior who guide me and strengthen me. And I cherish my sweet Max.

Xo.

What Christmas?

Tyler and I have been struggling with getting into the holiday spirit. Not, like, feeling grinchy, but literally not feeling like it is Christmas at all. We aren't setting up a tree, decorating our house, going to Christmas events, shopping or wrapping presents. We just haven't even been feeling like its Christmastime. Its just a very different December for us. Its just hard to be involved in the holiday season when you are in the NICU 8-10 hours a day. 

Christmas? What Christmas?

So, having been feeling this way all week, we went to church on Sunday. It was testimony meeting and, trust me, if you want to feel the spirit go to testimony meeting at Primary Children's Hospital. We were so uplifted by the faith of some incredible parents who shared their stories with the congregation. One couple's story especially struck our hearts. After years of infertility they had finally gotten pregnant, but their son was born with a terminal syndrome. Despite all the efforts they made, the doctors had assured them he would die. Tyler and I stole tearful glances at each other while we listened to both the wife and husband share their testimonies. We could certainly understand the hearts of this sweet couple. 

When the husband bore his testimony he completely changed how I'd been feeling about Christmas. He talked about their son, about all of our children, about how "not ideal" our situations are. He said he'd been thinking about how we really romanticize the birth of the Savior. At first, I was confused by what he meant, then he explained, "Artists paint beautiful nativity scenes and we talk about it like it was so perfect and quaint. But, honestly, how difficult it must have been for Mary and Joseph to bring Jesus into the world under such not ideal circumstances. Mary gave birth in a stable where cattle or sheep slept and ate. She laid Christ in a manger, which comes from the french word mangerai that means "to eat." She swaddled her son, the Savior of the world, and laid him in a trough. How many times a day, an hour do we sanitize and wash our hands in the NICU?? And Mary and Joseph were trying to care for their new infant son in a stable, surrounded by filthy animals. If anyone can understand having a child born in the most not ideal circumstance, it is Mary, Joseph and Heavenly Father." I had never thought of the birth of the Savior that way before. I had never thought how hard that must have been for Mary, knowing how special her son was, and not even being able to have a clean place to lay him to sleep.  Now I understood what he had meant, and what it meant to all of us. The Lord understands our hearts. He understands that this is not the ideal way parents imagine bring their children into the world. He understands because His son was not born under perfect or ideal circumstances, either. 

Since listening to this man's testimony, I suddenly feel more connected with Christmas than before. As the meeting closed and we sang Away in a Manger, I imagined the nativity scene as it really was. I pictured the humble stable, the animals, Mary, Joseph and their baby. I thought about our humble hospital room, the nurses, Tyler, Max and me.
I thought about how greatness can be born from the most not ideal of circumstances.

xo.

Be not afraid. Only Believe.

At just 17 days old Max has had his second major neurosurgery.

The temporary drain they originally placed had to be removed and, just as expected, the fluid in Max's head began to fill up again. So today, the surgeons placed a permanent VP Shunt. The surgery went fine with no problems, but recovery was rough on Max. I guess through the course of surgery and with the shunt, he drained a lot of fluid. It seemed to shock his system quite a bit. The nurses and respiratory therapists had a difficult time getting him balance on the ventilator again. Its a lot of technical stuff that I don't completely understand, but when it comes down to it he was really struggling to breathe.

Tyler and I sat back as they all scurried about Max's bed, trying to "adjust this" and "change that" in hopes to bring down "this pressure" or "that level." (Sorry, I'm not a medical professional, so I can't really be super specific and try to explain it.) I kept asking Ty if he was worried, and he would shake his head calmly. I tried to not panic. I knew we had fervently prayed and felt peaceful about this surgery and Max's recovery. But in that moment, the stress and my fears began to make my mind question what my heart knew. I began to feel afraid.

I had been putting off going to pump, because I didn't want to leave during Max's struggle, but eventually engorgement won and I had to leave. As I walked out and headed for the pump room I felt the tears start to well up in my eyes and the dreaded lump form in my throat. I was desperately trying not to cry. I sank down into my chair, pulled out my phone and opened my Gospel Library app, which holds my scriptures and church articles and talks. A talk by Dieter F. Uchtdorf was already open, "Be not afraid. Only believe."

I read through the talk and at the very end was a passage that spoke just the words I needed during this moment when my faith had become overpowered by my fears. It read:

"...even in the toughest of times, the Savior will say to you as He said to an anxious father on a crowded street in Galilee, “Be not afraid, only believe."

We can choose to believe.

For in belief, we discover the dawn of light.

We will discover truth.

We will find peace.

...Have courage to believe.

Be not afraid, only believe."

When planted directly in the most harsh of circumstances, sometimes, we can feel our belief slipping out as fear creeps over us. In those moments we must find the courage to rise above our fears and have the faith to believe and trust in our Eternal and loving Father in Heaven. Fear is the absence of faith. Fear is the dark and faith is the light.

Despite Max's prognosis we remain hopeful and have faith in the Lord. We know and understand that we may not have our son for very long. We understand his condition looks bleak to the doctors. We trust their professional and medical opinions and understand the reality of what is. Max has very little chance of a quality or long life. What little brain matter there is, is not enough. Even his brain stem is missing the most vital and important parts. That's all true. But we still choose to believe in miracles. We choose to have faith, no matter what those miracles are and no matter when we will lose our son from this earthly existence. Why? Because we believe. We believe and we trust that Max is a special spirit, sent to us to teach us and strengthen our testimonies. How could we not remain faithful to a Lord that has so abundantly blessed us? How could we fear when we have seen so much light? We can't when there is so much still to believe in.

Xo.

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.

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.