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.