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