Monday, March 4, 2013


Home. Isn't that a comforting word? We've all been hoping for the day that I could go home with my parents and meet all my friends. Home and Love. In my world those two words are inseparably connected! Hopefully it's the same for you. I made it home. Just not the one we were originally hoping for. This Home is even better! There is no pain, no sorrow and I am looking forward to my parents, family and friends joining me here soon.

Well, last I wrote, we were all celebrating that I had peed and my settings were going down! It was exciting. I was trying so hard to get better, I guess I just wore myself out. When mom and dad came back after the nurses shift change, I was struggling more and more to breathe. They kept changing my settings and giving me medicine, and my skin kept feeling tighter and tighter. But I kept peeing, because that had made everyone so happy before. I guess, this time they were too worried about everything else to notice as much. The doc had to come back in around 11 to get me back into a good breathing range. He said he wanted to talk to my parents about "options". Then he told them about different medicines or things that they could do to help me. They decided to paralyze a lot of my muscles and give me some Fentanyl for the time being. After my oxygen came back up, the doc left to get some rest. Around 3 I was still doing good, although it was a little scary not being able to move, I could still look around at my sweet parents' faces and that gave me comfort. Soon I heard the nurses saying they had found a place for my parents to get a little rest.

About an hour later, everything went fuzzy . . . things started beeping, nurses surrounded me, giving me what they called "an epi" over and over, pushing on my chest and saying things like, "come on buddy, you can do it!" I was trying so hard! I heard them talking to my parents and all the sudden, a couple nurses left my bedside quickly and I heard my mother saying, "I'm sorry, I'm sorry, just take care of Marshall." I heard them telling her to sit down, she must have been struggling. We all were! Soon, instead of feeling the pain and pushing, I was looking around at a bunch of stressed people, and a tiny little baby in a bed. They couldn't hear a heart beat. They tried with a stethoscope and couldn't hear a thing, then they tried with a doppler (how'd I know that word? Somehow I knew all the words they were using!), they thought they heard something, and kept pushing on the tiny little baby's chest. Things became a little strange, but comforting. One second I was looking around at everyone, the next looking up at them. Soon, the doctor came. They tried more medicine and more pushing, xrays, and lots of prayers. The weird thing is that I could hear a lot of the prayers. I could hear some of their worried thoughts! The face on the little body grimaced a couple times.  I was looking around at everyone again. As I turned and noticed my parents staring intently at the bed, I realized that the little guy was me, my body at least. I heard the doc telling my parents that we had an asystolic baby. They were keeping the tiny baby, me, oxygenated but my heartbeat wasn't functioning. He suggested having my mother hold me.  I heard her frantic thought, "no, not yet. What if he can still make it?!", and I felt a tremendous amount of love.

I felt the burning of hope surrounding my parents. Hope can be a hard thing to understand. As I sat watching them, I thought back to the day they found out the news that I was going to come early. They had hope that I would live, but it was guarded. I did live, and as I continued to grow stronger and stronger, so did their hope. They began to hope that I would be able to come home and be with them, and that I would have no negative effects from all this trauma. It grew and grew. Other people were also praying and fasting for me and hoping that I would live. As I sat watching my parents and thinking of all the family and friends hoping for this same thing, I realized what the hard part of hope is. Hope, TRUE hope can't simply be the hope for good things to come - that type of hope is too easily crushed when the good things we want don't happen, like what my parents are going through now. True hope is always hoping FOR the best, while hoping THROUGH the worst. For example, my parents were still hoping that I would live (what they saw as the best thing), but I also know that they have hope that no matter what happens we'll be together forever. Their ultimate hope is a knowledge and belief that because of Christ's Atonement, all will be well in the end. If we can just rise every time we fall, and trust every time we despair, and love every time we are able during our short journey on earth, having our lives filled with the light of Christ - the Atonement makes it possible to live together forever with our loved ones when there is no end to time. And all our hurts will be made right, all our scars will be mended and we will be WHOLE.

They unhooked me from the machine, and placed my fragile body in my mother's arms. My parents looked stricken. My nurses and my doctor looked stricken. I did my best to comfort them. I hope they felt me there!  I heard my sweet mother's thoughts and prayers. . . "Please no. Please bring him back. He's shown us miracles, please can't we see one more! Did I feel him move? Wasn't I good enough to keep him? I can't do this!" My father sat holding my mother close, pleading and begging Heavenly Father. I heard words like spare, deliver, protect, preserve, and sustain, repeated a lot. "You promised..., you promised...", he demanded inwardly, unable to finish the sentence. I heard a reply to him and understood: "When you placed Marshall in My hands on the day he was born, My promise was peace for your soul."

They moved my heart-struck parents, my Grandpa and Grandma Thornton, and my middle name namesake - uncle Jonathan - to another room. My Grandma and Grandpa Stout arrived. They each took turns holding my frail body. My aunt Bekah and my uncle Nathanael came. Other family members and friends were able to make it. Eventually they brought in pictures of me, and things from my bedside to give to my parents. My pal Woody, and the leads to my monitors. . . and still my sweet mother prayed for a miracle. My heart ached for her!

Some of my dear nurses came in to see my body and my parents. One of my nurses mentioned that I just completed my mission on earth faster than the rest of us. And my other nurse said, "overachiever!" It made my mom smile. I was thankful. I want to be near my parents often during this hard time! All the nurses were crying and consoling my parents, wishing they could have done more. Expressing the desire to turn back time. They said sometimes they think they can decide what's going to happen. That they can save everyone, but then God reminds them Who is in control. One nurse talked about how excited she had left the previous night. Going home to tell all her family how the little baby had peed (still embarrassing). She said, "That's so Marshall - wanting us to go home with lifted hearts by showing us that he could still pee." I sure tried to lift the hearts of all those around me! I just feel this gigantic amount of love for everyone, and I hate seeing them sad. So, even if I was struggling, I sure tried to lift their spirits! I think I learned that from my parents. They sure love everyone a lot, and try not to let it show when they are struggling. Please friends, help me watch over them! I know they are strong, but they sure took a blow today!

Time is a strange thing. Earth-life is but the blink of an eye. Trust me, I know. But when you're there . . . when things seem their bleakest time seems to slow down, but the good times just fly by and sometimes you sure wish you could change the speed, and all your loved ones could be back together again. Please believe me when I say, it will happen. You can be together forever. And when time is trudging on at the pace of a crippled snail, remember I believe in you. I love you. More importantly, Christ loves you. You can do hard things! I will sure miss you all! I'll be watching over you, but I'll be pretty busy too! Please treasure each other and the time you have together. I know I sure treasured mine! Although it was hard, it was definitely worth it!


Sunday, March 3, 2013

Code Yellow

Sometimes adults are hard to figure out!  It takes me a while to figure out why they get so excited about some things.  For example, this evening before my parents were leaving, and the nurse was changing my diaper, they all started cheering.  Everyone came to my bedside and they were all talking about how excited and happy they were.  They kept telling me good job and how proud they were of me.  I was trying so hard to figure out what new thing I must have done, then come to find out they were all cheering because I had peed!  Really?  I thought I had shown them that skill before.  In fact, I'm pretty sure that I have demonstrated it during a diaper change, or right after they changed me so I could get more attention.  And earlier today, my doctor did a dance because of my oxygen levels!  He's never done that before.

I think I'm starting to figure it out a little bit.  I think the more you know the more thankful you can be for your blessings.  See, what I didn't know at first because I wasn't feeling well and hadn't been listening as much as usual, was that because I was SO sick the past few days, my blood vessels had started leaking fluid into my body, which explains why I look like a marshmallow!  You would think that because of the swelling and leaking, that they would stop giving me so many fluids, but I guess the leaking made it so they had to give me more fluids, so that enough fluid could make it to where it's supposed to go.  And did you know the kidneys are responsible for processing the extra fluid and waste and getting rid of it from your body . . . through your pee.  See, I didn't know any of this!  The nurses also said that I hadn't peed for over 30 hours, and they were very worried that my kidneys weren't working.  They explained to my parents that there's not a lot you can do fix the kidneys, so they were just hoping that they would come around.  I guess the swelling and things they feel like they can deal with and will eventually go away, but only if my kidneys started working again.  So the fact that I peed showed them that my kidneys were functioning again.  And the doctor dance - that's because they've been able to lower my ventilator settings, another good sign that I'm recovering a bit.   So, you see, once I knew all that, I realized how thankful I should be because I had peed and how excited it should make me!  Sometimes those blessings are easier to see in others, and we miss the small and large blessings in our own lives because we just don't know enough or don't pay enough attention.

I'm glad that everyone celebrated with me.  I still really feel yucky and hope that my body can overcome this infection, but my parents and I are learning together to celebrate our little blessings, as well as the big things, like my kidneys.  I heard that a lot of people were praying for me and my parents again and I know it helped!  I wouldn't have known to be thankful for that if my parents hadn't told me!  I sure feel a whole lot of love for so many people that I haven't met yet.  You all have been so great to my family, and I can't wait to meet you.  I'm working hard on getting better, please keep praying for me! 

Love you all!

Code Blue

I've never seen so many people around me before! So many new faces and very concerned voices. I had been pretty tired since yesterday, and only managed to open one eye to look around every once in awhile. My dad kept calling me pirate-eye, but I don't know what that means. I slept through the night and most of this morning, too tired to move much. I was also feeling pretty hot - which was nice at first because my feet and hands have been so cold - and soon became uncomfortable. That's when I noticed all the people around me.

It all went by in a flash, and I only caught glimpses of everything that was happening. My incubator was open. A green bag was blowing big breaths into my lungs. There was more beeping. Someone was pushing on my chest really hard. One nurse said something about Epinephrine. I heard my old friend the Oscillator turn on. I started shaking. I stopped shaking and the green bag was back. Then I started shaking again. And then my mommy and daddy were there.

They told me later that I was just leveling out when they arrived. The shaking got more and more intense from the oscillator as the doctor adjusted the settings to stabilize me. Finally, after there was enough oxygen in my blood and not too much carbon dioxide, the amplitude on the vent came to rest at 44 and the mean pressure at 28. Those numbers are a whole lot bigger than ever before. If you don't believe how high they are, just watch my whole body quake.

When things started to calm down, my parents held my hands and feet, and my mom sang for me. With doctors and nurses and technicians all around us, she sang to me songs of peace (my favorites are Abide with Me, 'Tis Eventide; Be Still my Soul; and Edelweiss). I opened my eyes now and then to look up. My dad was worried and kept mentioning that I was just staring off into space. I wish he could've seen what I saw. It would help him worry a lot less if he could see who else has been with the three of us, resting strong hands on our shoulders. I did start looking at my parents too, and they seemed to like that.

I'm getting sleepy again. But before I go, I should probably mention the cause of all of this. The doctors say they think it is an infection: most likely a bacterial infection in my blood from my picc line. It gave me a fever, made me lethargic, and caused my lungs to fill with fluid. So now I have an IV in my foot, another on my head, and the picc line in my arm for now. Each line is connected to a machine that is giving me antibiotics, bicarbonate, fluids, and the sedative that is making me slowly fall asleep. With all these fluids going in, I'm starting to live up to one of my nicknames by looking white and puffy like a "marshmallow."

The next two days could be pretty rough, but it'll all work out. My mom and dad are by my side, and Heavenly Father is on my side. I also have the greatest nurses, respiratory therapists, and two doctors instead of one: the one on-call, and the one who has a few days off but came in anyway when he heard I was struggling. They are my heroes.

Tuesday, February 26, 2013

"This [incubator] ain't big enough for the two of us!"

Just wanted to hurry and say hello to everyone and let y'all know what's going on!  Last Thursday my buddy Woody came to visit again.  (He taught me the word y'all!)  I didn't have much energy so he just lay down beside me, but it sure was comforting.  Isn't it amazing what simple things friends can do to lift your spirits?!  My family and I have been blessed by friends and family that way a lot lately.  So, thanks everyone!

The next day was pretty rough.  I kept thinking about my good friends and family to make it through.  I had a spinal tap and blood draws to make sure that everything is okay.  The spinal tap was supposed to check for something called meningitis, and the blood draws were to check my oxygen, platelets, red blood cells and infections.  I also got another blood transfusion.  All the reports came back with good news.  No sign of meningitis, and no infections or signs of bacteria growing in my blood.  The doctors are still treating the serratia (that was found growing in my tracheal tube), and they think I could have a yeast infection, so they are treating that too.  The next day, I got a new picc line in my arm, so they could give me the medicines without having to worry about finding a good vein all the time.  I've been pretty wiped out and irritated.  My parents bring me a lot of comfort, and the nurses give me Ativan to calm me down.  I'm working hard on growing, and my parents told me they're proud of my progress.  As of today, I weigh 2 lbs 13 oz, and I've grown to 14 inches tall!  They're adding 26 calories to my milk now,  instead of the 24 they normally give preemies and they've been adding MCT oil to help me grow too!  I'm even starting to get a double chin!  

I had another eye exam, and my eyes are good but still pretty immature.  I'm really hoping that my lungs can get strong!  We want to make sure that I'm over my infections and then they're going to start me up on steroids to get me off the ventilator.  That sure would be nice!  It's pretty hard to remember what it felt like not to have tubes hanging out of my mouth all the time.  And while I try to make the best of the situation by sucking on my tubes, I'm sure looking forward to getting a binky instead!


Tuesday, February 19, 2013

Life Through The Eyes of a Child

Most of the posts by Marshall are written by my wonderful husband.  I have taken the opportunity to write a couple of them.  It has been a blessing to me to try to view our experiences through the eyes of a child, and put them into words.  Children trust.  Children believe what you tell them.  Children love you unconditionally.  Children forgive.  It is no wonder that Christ tells us to "become as little children".

My faith has been strengthened as I view life in a child-like manner.  As I have written the words for Marshall, they have resounded truth loudly in my heart.  I am loved.  Angels truly are watching over us.   God does care about the tiny things in our lives, but he cares even more about our well-being.  He wants us to come to Him.  Not hesitantly, as we do as adults, but with all the enthusiasm and energy that young children display when they are bounding back toward the ones they love!

I don't know how many of you know, I have struggled with severe depression since at least the age of 12.  I have always had a hard time believing people love me, believing that God loves me.  I often can't feel it, even when I pray.  Yet logically, I know He loves me, because I have always felt His love for others, and it doesn't make sense that it would apply to everyone else, and not me.  I have often blamed myself that I'm not good enough or strong enough to feel or hear the answer, while at the same time telling myself that you don't have to be "good enough" to receive an answer to prayer - you just have to be earnestly seeking.  And I was.  So what was/is my problem?  Part of it may be my intent or desire (I can always improve that), but I believe that a large part of it is my earthly challenge to test my faith and bring me ultimately closer to my Heavenly Father.  I don't often get to FEEL it and in the Church of Jesus Christ of Latter-Day Saints we talk a lot about feeling.  That is the way we often describe how you can know the Book of Mormon or the Gospel is true.  Through a feeling within yourself.  I have tested those things, and gotten that feeling.  Yet, I rarely get that feeling to reinforce my individual worth.  But I know it.  I am learning to trust the things that I know, and when I really need it, the Lord will give me the feeling of truth.  I am learning that sometimes the answers to my prayers don't always come in the feeling, or way that I desire.  God knows better than I what I need.

I really do believe that Marshall can see angels.  That they comfort and strengthen him.  I know that he views these experiences in the way we have described, with faith and hope but even more perfectly than we can imagine.  I know that when Marshall's sat's (oxygen levels) went up after I prayed that he could be comforted by angels when I couldn't touch him, it was an evidence for ME, not Marshall.  He's seen them all along.  And as I wrote about the experience from his child-like faith, I was blessed with one of the rare times when I did FEEL His love for ME.  Not only for my sweet baby Marshall, whom everyone loves, not only for my wonderful husband and family, not only for the strangers on the street that I can feel love for - I felt his love for ME.

While writing and sharing our experiences as if through Marshall's eyes, through faith-filled, hope-inspired, awe-struck, believing eyes, I have received confirmation again and again that faith in God works, that He will help us through any experience, that He knows better than I what is best for me and all those around me, and that He loves everyone, including me.

It's refreshing to trust so whole-heartedly.  I suggest you give it a try.  Think of what Marshall might say of your challenges now, or what your child might say, or a little one that you love!  As in life, I may have to learn this again (us adults can lose sight of truth awfully easily sometimes) but it sure feels good to know these things now.  I sure feel like I need it.  I'm thankful for my beautiful child that is teaching me so much without even opening his mouth.

Roller Coaster

The nurses keep telling mommy and daddy that the NICU is like a roller coaster. When I first heard that I wondered what that was and wasn't too sure that I would like roller coasters. Don't get me wrong. I'm so thankful for the NICU for helping me get well and I love my friends the nurses and doctors and isn't it amazing what modern medicine can do? (I've heard that a lot -so I'm thankful even though I don't quite know the difference - I'm just a kid!), but I've heard home is really nice without all the beeping and lights and best of all I get to be with mom and dad the WHOLE TIME! Which one would you choose? It sounds heavenly! Plus, I'd get to see my grandparents and aunts and uncles more often. (I haven't even met three of them! Two awesome uncles can't see me yet because they're too young to come into the NICU...and my aunt is on a mission!) Being sick isn't too fun either and I know it worries my parents -so I decided if the NICU is like a roller coaster then roller coasters must not be all that great.

Then mommy told me it's a ride that goes way up high then speeds down and up again, sometimes with spins and turns that you can't see around. She said they're pretty thrilling and fun but sometimes they give you motion sickness. I figured maybe they were saying that the NICU can make you feel sick. Well, so far that's pretty true.

Then daddy told me they were using something called a simile - saying that while I'm in the NICU our feelings will go up and down like a roller coaster goes up and down and sometimes you can't see what's waiting around the corner. Once he told me that it made a lot more sense.

This week was definitely like a roller coaster (look dad, I'm already doing a simile!) I was feeling great at first! Mom said she showed you a video of me looking all around. We were on a high, then Wham! we sped toward the ground and I wasn't feeling so hot, and mom and dad were worRIED! They put me on some medicine and I'm feeling better already, but mom still looks pretty worried. She tries not to let it show but I can tell. Today they said they found out I have serratia and I heard mom telling the nurses it was a bad idea to Google it (kind of scary), but the nurse said it's a treatable bacteria and they caught it early, which is good! I'm feeling much more awake today and I'm getting a transfusion now. (My red blood cells were low...I've gotten a lot of transfusions. I just can't seem to make enough red blood cells yet!) So I think we're maybe starting to go up the roller coaster but we're also at a corner that we can't see around yet.

Today while mommy was here she had to sit beside me to pump and felt bad she couldn't comfort me. She knows it's hard sometimes being here alone...the nurses are always near but don't always have time to comfort me like mommy does when she comes. My oxygen usually stays pretty good when she's touching me. She told me she said a prayer that I could feel the angels comforting me when she can't cause my oxygen started to drop. After she said the prayer my oxygen started coming back up and I reminded her that angels are always with me. I can see them better than she can and sometimes she forgets.

Mom and dad told me that life can be like a roller coaster too. So I suggested we pray for anyone else that might be on the down side of their roller coaster! So if that's YOU, I hope you know we're praying for you!  But some comfort for all of us is that God and His angels are watching over us and no matter what happens it will all be okay in the END! - remember right now for some reason I can see them better than you may be able to.

I might end up liking roller coasters after all.


Sunday, February 17, 2013

Wiped Out

I am tired.

Have you ever felt, while you were dreaming, that you couldn't open your eyes? And you know how when you did manage to open them, you could only do so part way, and only for a short time? That's how I feel all the time.

I felt great the last few days. I opened my eyes a lot, I got out of my incubator to be held by mommy and daddy, and everything seemed to be going great. But now I'm so tired. My doctor and the nurses are trying to figure it out right now. They swabbed my mouth and took more blood to start some cultures. Maybe it's an infection, maybe it's pneumonia, maybe it's a yeast problem. I don't know. I'm getting antibiotics just in case, so maybe that will help.

It was getting harder and harder to breathe this morning too. Eventually I was getting 100% oxygen and still struggling. It's much better this evening, but my blood gasses are off - lots of CO2 build-up and low pH - and I'm all congested as well. I get drool all over my face and bed, but I'm too tired to bother. The settings on the ventilator have gone up as well and the nurse says that if things don't get better, I might have to use the oscillator again.

I don't mean to worry you (I know my parents can't help it), but I could sure use your prayers. I don't want to go back on the oscillator if I don't have to. And I sure was enjoying all the interaction with my parents. In the long run, it'll all work out, I know. I just hope I don't have to take too many steps backwards before 'the long run' gets here.

I hope you don't feel too sad. I'll be alright, I promise. But I'll make you a deal. I'll post a happy video to cheer you up if you say a little prayer for me and my family.

Sometimes, when I'm lucky, my mommy gives me a taste of her milk on the end of a cotton swab. I like it (I like trying to look at it too)!


Thursday, February 14, 2013

Happy Valentine's Day

My mom made me a hat to celebrate Valentine's Day and National Heart Month.  I even added a smile for the picture!

Tuesday, February 12, 2013

Breathe, Grow, See

What a week it has been! Did you know that breathing is really hard for someone like me? All my friends that come visit sure make it look easy!

Wednesday was the big day. Actually, Friday was supposed to be the big day, but I just couldn't wait. I was feeling great on Monday and Tuesday and had the nurses turn down the settings on my ventilator again and again. So on that morning, even though there were a few hiccups in my blood saturation levels, I decided to give the nurses a break and take on some of their responsibilities. I started by doing lots of stretching to make sure I was warm and limber. And then I extubated myself. It was much easier than a big word like that may seem.

Okay, so maybe it wasn't the best idea. In hindsight, I guess it didn't really save the nurses any time or effort. But the deed was done. The nurses took my lead and got rid of the ventilator. In my excitement I might've also pulled my feeding tube a little too much. Even I knew that I wasn't ready to breathe AND swallow on my own - it's just that I don't quite have the precision with my hands that I'd like. I ended up aspirating on some milk, which was not a good start to my life without a ventilator. 

Now, this is the point where everything gets a little fuzzy. All I remember is lots of beeping, at least six hands all around me, and my mom watching from across the room. Later my mom said that she had to leave the room when I started turning blue. The first thing I remember upon waking up was being lifted out of my bed and being laid down on something soft and warm. That's when I heard a very familiar sound. It was my mommy's heartbeat. She was holding me, and although I was struggling to breathe through the little oxygen tube in my nose, I felt safe.

Just a little while later I was hooked up to a different machine. Rather than forcing a constant, high-flow stream of oxygen (nasal cannula), this new device puffed air into my nose (CPAP). I wasn't sure what to think of the contraption. On one hand, it sure was nice to have the tubes out of my mouth and the loud oscillator shut off; but on the other, I had two long nozzles sticking in my nose, stretching my nostrils like an inner-tube in a bike tire. The other problem became evident when they turned my oxygen way up without making much of a difference. All the air going in my nose went right out of my open mouth. Why did I have my mouth open, you may be wondering? Because I don't know what it's like to have a closed mouth - I've never experienced that! My mom was kind enough to help me try to learn. She gently pushed my chin up and my head down to close my mouth. As soon as it was closed, I started feeling much better.

All day she held my mouth closed so that I could breathe. I'm only one and a half months old, and I already know I have the best mommy.

As soon as my mom and dad had to leave for the nurse's shift change, there was no one to hold my mouth closed. I had to breathe harder and harder to feel like I had enough oxygen. The respiratory therapist told my parents later that my skin was stretched so tight across my ribs that I looked like a skin-colored skeleton when I inhaled. All I know is that I was ready to be back on a ventilator.

Everyone agreed with me, and within the hour I was back. It wasn't the oscillating ventilator like before, it was a fancy new machine that simulates natural breathing. It encourages me to breathe on my own by assisting my inspirations (that means to inhale). They also say it's easier to ween me from this one than the other one. But that night I didn't do any of the breathing at all. I was so tired from being off the vent for over seven hours, that by the time I was back on, I went to sleep and let the machine do all the work for me.

The next day I was feeling well enough to leave my bed for awhile so that dad could hold me. I think he really liked it, and I liked it when he kissed my forehead.

Just a few other things before I say goodnight. My grandpa Stout was doing some math the other day and determined that if I continue at my current rate of growth, by the time I am six feet tall I will weigh twelve pounds. I sure hope something changes before then!

There is also another miracle to add to the ever-growing list. I had my first eye exam on Saturday. When the eye doctor came in and saw all one pound thirteen ounces of me, still connected to a ventilator after a month and a half, he did not hesitate to voice his doubt. He even said, "this doesn't look good." But as hard as he tried to find something wrong with my eyes, he just couldn't! The blood vessels are just starting to grow and expand, so there is still the possibility I might develop eye problems. But the fact that my eyes are healthy after all the oxygen I've had sure is a miracle!

Lately I've just been trying to grow and save up energy for the next time I try to get off the ventilator (and so that I weigh a bit more by the time I'm six feet tall). The other good thing about this new ventilator is that my parents can hold me once a day, if I'm feeling up to it. And nothing beats that!


Sunday, February 3, 2013

Small but Mighty

Many have repeated the sentiment that the birth of a baby is a miracle. For the first time I echo this with real understanding. Marshall, by that definition alone, is a miracle. And yet there is so much more to the miracle that is our Marshall.

As Davis hospital's smallest living baby, Marshall was born weighing just two ounces short of one pound. A greater cause for worry however, was his 23-week immature body (though we know he was 27 weeks old, he was developmentally only 23 weeks). With eyes fused shut, lungs just barely starting to form, paper-thin skin, and fragile little head, Marshall's chances of survival were optimistically 50/50, according to the doctor. 

Not only was he at risk for countless illnesses, disorders, and disabilities, the very tools and methods to treat his afflictions were not meant for one so small. It's adorable that he wore his micro-preemie diaper like a sleeping bag, but it was jaw-clenching scary that a hair-thin tube was larger than his little veins and arteries. And speaking of scary, Intraventricular Hemorrhage - which is the bleeding into the ventricles of the brain - is the rule for premature babies. Grade three and grade four bleeds can cause permanent brain damage, whereas grades one and two are temporary setbacks. For one as small as Marshall, IVH is almost guaranteed.

Right behind these major potential problems is a medical textbook full of other risks. Many small preemies can't handle being fed, and must return to IV nutrients over and over again; this to the detriment of the liver. Which brings up the all-too-common struggle with jaundice, often requiring the baby to remain under constant UV lights. The list goes on and on with blood-sugar imbalance, NEC (that's a scary one), running out of veins for IVs, skin sloughing from the body, etc...

But Marshall is mighty. And has been the recipient of miracle after miracle.

Not only has Marshall been free of grades 3 or 4 head bleeds, he hasn't experienced anybleeding in his head at all. The IVs and PICC lines used for transfusions and administering medicines have gone in flawlessly - and have stayed viable long after expected.

Marshall has tolerated his feedings from the very first one. Each week has brought an increase in amount or frequency of his feedings - each time without incident.

Jaundice has been nothing more than a nuisance, requiring a few days of UV lights after birth and occasional medicine for direct bilirubin. And Marshall's skin, although very brown in the first couple of weeks, looks as pink and as smooth as...well, as a baby.

The balancing act of Marshall's blood sugar was handled expertly by doctors and nurses and lasted only a week or two in total.

NEC would require many miracles to overcome, not to mention surgery to remove portions of rotting gut and other disturbing treatments. To have NEC would be devastating. To have it in the first month would've likely been fatal for Marshall. Although NEC's incidence is lower than head bleeds and other problems, it has been a constant fear for Mandy and me. The miracle here is that we're managing our worry enough to function.

Nearly a month and a half later, Marshall has more than doubled his birth weight. He is over a foot tall. His eyes open and search his surroundings whenever he awakes. He is, with the exception of his little lungs (and considering he is a very young preemie), a miraculously healthy baby. And although his lungs struggle to exchange gasses and maintain pH levels on their own, it is a miracle that they function at all. The last six weeks of our lives have felt like a year. Our thoughts remain on our little boy constantly, and we yearn for the day we can bring him home. While Marshall's stay in the NICU is long from over, and there are yet many challenges to overcome, it has been good for us to take a step back, remind ourselves of the miracles we've experienced, and remember just how blessed our little family is.

I don't know why Marshall lives and thrives when other babies don't. Hundreds of our family members, friends, and strangers have prayed for Marshall, yes; but the same is true for others whose lives are very short on this earth. It breaks my heart. But when I think back to the day after Marshall was born, when I sat in a quiet hospital room next to my sleeping wife - my body shaking and my mind crippled with worry and fear - I knew I had only two choices. I could continue as I was until the worry consumed me to the point of breaking, or I could place my fragile little boy in God's hands, to do with him as He willed.

The reason for Marshall's exciting and dramatic entrance into this life will surely remain unknown to me for a long time, yet I know in whom I have trusted - and He is mighty.


Friday, February 1, 2013

My Daddy is my Favorite Pal

I woke up the other day, all excited for the energy that I felt!  I opened my eyes wide and saw lots of smiling faces looking down at me.  I looked around a couple times, hoping to see my parents, and I have to admit, I was a bit sad when their faces didn’t appear.  I didn’t want the nurses to feel bad, though, so I continued looking around and interacting with them – I love them too you know.
I found out later the reasons my parents weren’t there.  They were at home with my grandparents and some of my aunts and uncles having a “1 foot” party.  You see, I grew to be 12 inches that day.  I’m probably even taller now.  Here are some pictures they showed me of the party.  (It was too bad Grandpa Paul was out of town, since the party was his idea!)

Also, I guess I didn’t wake up at the right time.  It’s so hard to keep track of time in my little room.  I just leave that to the nurses.  They usually wake me up every three hours to move me, change me, and feed me – 9, 12, 3 and 6 around the clock.  I guess that I wasn’t breathing like they liked me to be, though, so they decided to turn me and take care of all that early, and when my parents came a little before 9 to see me I was fast asleep.  I found out that they were just as bummed as I was, so the next night I made sure that I was wide awake for when they came!  Boy were they excited to see me!  They took tons of pictures!  I was so excited to see them, and trying so hard to let them feel my love as I focused and looked at them, that sometimes I went cross-eyed.  Embarrassing, right?  My eyes are still working on this automatic focus thing.  I bet you just thought it always came automatically.  Reminds ya to not take anything for granted!


This time it was Dad's turn for a treat!  I worked extra hard to breathe well, so that I would get more time interacting with my parents.  I did so well, that dad got his first turn to give me a kiss!  I tell you what, I have the best daddy in the whole wide world!  I like to dream about all the adventures we're gonna go on when I get strong enough.                         

My parents have been a bit worried about my breathing lately.  They keep turning up the settings on my ventilator.  I had the doc remind them that they aren’t as high as before I went on the steroids so they won’t worry as much.  I’m working extra hard on growing so when they give me a chance again in the next week or so I can get off that ventilator.  I’ve doubled my birthweight, and toned my muscles to reach a hefty 1 lb and 14 oz.  Okay, so I did lose a little yesterday, which puts me at 1 pound 13 today technically, but I’ll put that back on in no time! 

Love, Marshall

Tuesday, January 29, 2013

A Love/Hate Relationship

The nurses gave us this picture today.  Isn't he beautiful!  They said during his "cluster care" - when they change his diaper, move him around for a new position and start his feeding - that he was just looking around and very active.  They had raised the top part of his incubator to move him, and when they put it down he started crying.  So they raised it up again and interacted with him.  I absolutely love the nurses that care for our little boy!

At the same time, I hate the fact that they are there to see these moments and that I miss them because I can't be there all the time.  Yet, I could be there all the time.  Visiting hours are anytime during the day and night, except for 6:30 to 8 am and 6:30 to 8 pm.  "Why don't I spend all my day there?", I often ask myself, then feel the guilt wash over me.  Don't get me wrong . . . I spend a lot of time at the hospital each day.  I want to be there all the time, but hate that I have to be there at all.  In order to take care of my health (mental health specifically) I have had to learn to accept a balance.

You see I love going to the hospital and I hate going to the hospital.  I LOVE seeing my beautiful baby.  That  is obviously a given.  But I hate seeing him cry when I can't hold him, and sometimes even touch him to give him comfort.  I hate that some nurses will allow me to lay my hands on him for comfort, while sometimes they appear to think I'm upsetting him more.  I hate that I  have to wonder if touching him is upsetting or comforting.  I obviously want to do what is best for him - both Tyler and I have stayed at home, because we were ill, to keep him from exposure to possible infections, and we are constantly watching his vital signs for distress.  I love that I am his mother, and hate that I have to get permission to touch him.  I love that the nurses are so helpful.  I hate that there is so little time I have been able to spend with my little guy, unmonitored.  I love being informed of his progress, yet hate feeling so stupid as numbers and terms come at me daily and I have to have them repeated over and over.

Sometimes I feel so many different emotions within such a short period of time, it becomes quite overwhelming!  Hate is such a strong word, and while I do hate many of the circumstances and conflicting emotions that I feel lately, the feeling that encompasses them all is an overwhelming sense of GRATITUDE!   Thanks to the nurses and doctors who care for Marshall.  Thanks to ALL who have offered support and love and encouragement.  Thanks to our amazing family!  Thanks for my most amazing husband who has to deal with all these stresses, and me the emotional roller-coaster, and work at the same time!  He is so wonderful!  And most of all thanks for my Marshall! A gift from God.  And for his journey, which has helped me draw closer to my Savior and learn a great deal of compassion and empathy for others, all the while feeling enfolded in the arms of His love!

Monday, January 28, 2013

Two-Hour Adventure

I did it! On Tuesday I got off the ventilator and I breathed on my own! Well, it was mostly on my own - I had oxygen running up into my nose. It made me sneeze a lot. That's why I pulled it out. Once it was out I could finally relax, free from all tubes and hoses. But it didn't last long. Soon the machine on the wall was beeping like crazy and my mom noticed that I had taken the liberty of making myself comfortable by removing the tube. So it was back to the plastic up my nose for me.

Are any of you wondering why I wrote "breathed" instead of "breathe," and "it was" rather than "it is?" That's because I'm back on the ventilator. In fact, I was only off it for two hours before my little lungs just couldn't keep up. If you had looked at me, though, you would never have guessed that I was struggling. I was taking deep breaths in and out, and the monitor on the wall showed I had enough oxygen in my blood. But there's no fooling those clever nurses. They kept pricking my heels and drawing blood to find out just how well (or not well) a job my lungs were doing. It turns out that lungs do a lot more than just oxygenate the blood! They've got to exchange oxygen and the carbon dioxide. They also help regulate my pH balance. So although it seemed my body was working hard to inhale and exhale, the blood from my heels revealed a build-up of CO2 and a pH imbalance.

Even though I had to go back on the ventilator only two short hours after being free, I made sure to take advantage of the opportunity. First I posed for some pictures without a big white mask over my mouth. Then I sucked on a little pacifier (it was supposed to be the smallest one they had, but it was still bigger than my head!) Finally, I held my mommy really close. She said it felt like she was only holding a little blanket because I weighed so little. But to me it reminded me of heaven. Maybe you've forgotten, but I still remember the warmth and the peace and the joy. And that's just how I felt when my mommy held me close in her secure arms and gentle hands. The only difference between the two experiences is that in heave , I didn't have a feeding tube right in the middle of my mouth! My dad said it's probably a bit like when you swallow a spaghetti noodle that gets stuck halfway down, but I told my dad it would be inappropriate to go into details about that.

So now I'm back on the ventilator. I'm focusing on growing bigger and preparing my lungs for next time. The doctor said it wasn't a problem that it didn't work - my lungs just weren't quite ready. He wants to wait a week or two and try again. Even though it did hurt a bit to be re-intubated, it was absolutely worth it. It gave me a chance to show everyone what my mouth looks like (though the mask that is glued to my face makes my skin red and wrinkly), but best of all, it let me be closer to my mommy than ever before. I think it also gave extra hope to some people that just won't stop worrying...*cough* dad *cough*.

My mom and dad also wanted me to help them express how loved we all feel by your kind words of support, your comforting expressions of love, and the miracles powered by your prayers. I also hope you'll pray for my Grammy Stout, who I haven't seen since my first week in the hospital. She's always wearing herself out taking care of other people and praying for me, and has been sick for quite sometime. Have I mentioned that I have the four best grandparents ever?


Monday, January 21, 2013

"This is good!"

I couldn't wait to write to you today, just like I couldn't wait for my parents to come visit this morning. All of us in the NICU had a wonderful surprise for them when they got here. As soon as they walked in my doctor pointed at me and said, "This is good" so loud that even I jumped. It took mommy and daddy a second to realize what he was saying, and by that time the doctor had already finished explaining. I bet you're curious, aren't you?

Well, let me back up just a bit. For the last five or six days I've been getting a dose of steroids every twelve hours. I already told you how strange it makes me feel, but everyone said it would be worth it. I figured I would just have to trust them. Some of those days were pretty hard and I cried a lot, but my parents seemed optimistic (especially when the doctor didn't write any orders at all on Saturday). The nurses were turning down the settings on the ventilator a bit at a time, but over the weekend they just seemed to level off.

By the time Sunday rolled around, the ventilator hadn't been turned down much lately, and I was getting 70% oxygen. I didn't like how I was feeling either. I just couldn't lie still or stop crying. And then my parents came to visit. Boy was I glad to see them. Especially my mom. She came right over to me and put her hands around me and sang to me. I felt warm and secure in her hands, and couldn't help but feel completely at peace when she sang beautiful songs to me. At one point she stopped singing until I opened my eyes and looked up at her. She got the message and kept singing. Within the couple of hours that they were there, I was able to lie still, suck on my tubes (because they won't give me a pacifier), and fall asleep. And it turns out that the nurses turned down the oxygen all the way to 40% by the time my parents left.

I don't remember them leaving, but I had a great night and an even better morning. When my parents finally got there and heard the exclamation from the doctor, they saw what we were all so excited about. The settings on the ventilator had been turned down lower than ever before. If you're curious, the mean pressure setting started at around 16 or 17 last month, it's now half of that. The amplitude setting (which has to do with the frequency of my breaths) is also much lower than it has ever been. The doctor told us that he hopes to extubate me (that means get me off the ventilator) this week, and maybe even as soon as tomorrow!

My dad told me he can't wait to see me without a big mask on my face, but I told him I might still wear it to keep the feeding tube in place. Though I'm not sure how much it helps since I can't help but pull out my tubes when I'm on steroids!

This is all really exciting, but I'm a bit nervous. If things don't work out, I'll just have to go back on the ventilator until my lungs are strong enough. It's just scary when one second you can breathe fine and the next you're turning blue. That's why the nurses suggested that my parents come visit me only after the job is done. Please pray that I'll be ready when the time comes and that I can have lots of help to breathe on my own. Isn't that a funny thought? Having help to do something on your own? But were not my little lungs created by Someone just like the ventilator was? And don't I rely on the one to help just as I rely on the other? Anyway, I know that with your prayers and the expertise of the doctors and nurses, things will work out just fine.


Thursday, January 17, 2013

Steroids and Chocolate

Four weeks ago I was born weighing fourteen ounces. That's less than a large grapefruit! Well, in only four weeks I made it to one pound eight ounces. My dad had his phone calculator out the other day when he came to visit. He told me if he gained the same percentage of weight, he'd weigh 325 pounds by May. I told him he shouldn't try to compete with me, and I think mommy agrees.

Everyone tells me they're proud of me that I've gained so much, but that doesn't make sense. I can't add to my stature just by thinking. But I am blessed and very thankful for all the help I've had. My doctors and nurses are so nice to me (except when they poke my little heels to test my blood), my family sure loves me (in fact, I've gotten lots of wonderful letters including one from my older cousin Lev and my other cousin Nora, who is only one day older than I am), and the hands of all the angels are so very comforting.

And I sure could use the comfort these days. In an effort to start breathing on my own and leave the ventilator behind, I've been getting steroid shots. It's supposed to help my lungs, but it makes me feel all funny inside. I don't really understand the feeling, I just know I'm restless. A friend said it's a strange feeling deep down between the bones and the muscles. So although I can't help but flail around and cry a lot, the settings on the ventilator are starting to go down a little bit and I do better at keeping my oxygen levels up.

By the way, my parents told me about something called a blog and said that people from all over the world are seeing the pictures of my family and reading my emails. I never knew I had friends from so many places! I do know about my good friend in Switzerland though. She wrote me a letter and asked if I wanted Swiss chocolate. My mom and dad told me to say yes and that I'll thank them later. I suspect some ulterior motives!

I love you all and I hope to meet you soon. If you come visit me, then I'll be able to put a face with your name.

Sunday, January 13, 2013

I can see!

My dad was right – mommy is just as beautiful as he said. Now I get to see her kind and loving face when she sings to me with her angel voice.

At first only my right eye opened, then my left eye opened half-way. But now I’m wide-eyed and ready to explore. But exploring will have to wait just a while longer. I’m working on proving to the doctors that I’m steady and stable so that they can focus on my breathing.

I've got my blood sugar under control for now, and I’m really enjoying this eating business. I hear that most of you only get to eat three meals a day, but I get to eat eight! Of course, each meal is only twelve cc’s of milk (that’s about half an ounce, by the way). And I’m not just doing well taking it in; I do a good job getting rid of it too.

It may seem like a normal thing for you, but it’s a big deal for me. I wasn't always so good at it though. I had to learn the hard way. The nurses had to help me the first few times. I didn't like it and the next time the nurse was changing me, she threatened that if I didn't poop, she’d give me a suppository. I didn't know what that word meant, but I knew what was coming. Before the nurse could spell NICU, I was making it happen. The nurse sure got a kick out of that, but it’s no laughing matter to me!

By the way, my picc line is gone. That’s a special tube that went into the vein in my arm all the way to my heart. It was important to have that line before I was getting fed through a tube in my mouth (that goes straight to my stomach), so that I could get all my nutrients and medication. But if I got an infection through it, it would hurt my heart. So it’s blessing that I don’t need it anymore, even though it was a miracle that I had it. Because my veins are so small, it was going to take a lot of work and a miracle to get it in me, but the nurse said it was the easiest picc line she’d ever put in!

The best part of this last week was when mommy picked me up for the first time and held me. I don’t know if you can remember how your mom used to hold you, but let me remind you how special it is. When she lifted me up, it was the closest I’ve been to her since I was still inside. I felt the warmth of her hands and the softness of her skin, and I thought at that moment that nothing could be better. That’s when she kissed me. After living in an incubator my whole life, having my mommy hold me and kiss me was just the best. It’s a special connection. I am so blessed that she loves me this much!

Thank you for your love and prayers for me and my little family. Daddy has been sick and I haven’t seen him for a while, but he’s getting better with your help! I love you all!