Oxygen

Sometimes, I start to feel like the mom of a typical newborn.  But then, I feel the stares at the pediatrician's office as we wheel an oxygen tank behind Joshua, and I remember that we haven't hit normal yet.  Here's what having an oxygen tank and a monitor are like.

Advantages

• Joshua can breath.
• We always have an idea of how Joshua is doing.  The monitor tells us his heart rate and oxygen level.  
• When we call the pediatrician's office and say words like "NICU," "Oxygen Tank," and "Breathing Problem," they get us in that morning and give you extra time with the doctor.  We're hoping to utilize this method through the teen years.
• When you go into the doctor's office, there is no wait time.  

Disadvantages

• Joshua wiggles his feet a lot which wears out the sensor fast.  Then the monitor beeps a lot.  When the sensor is working properly, beeps are few and far between.
• The monitor is loud.  It's like fireworks-during-a-thunderstorm-during-a-rock-concert loud.  
• I can't prove it, but it's louder at night.
• Because Joshua is attached to cords, he is rather immobile.  It would be nice to be able to carry him into the kitchen for example.

Not Bad Just Weird

• We've taken Joshua out twice.  Both times to the pediatrician.  One of us leads with Joshua; the other trails behind with the oxygen and monitor.  It's cumbersome to say the least. 
• I have to cut holes in the feet of his zippy pajamas so that the monitor attached to his foot will read.  I'm probably the only mom alive who prefers snaps.  
• Onesies are slid on over his feet because of his oxygen tube.
• Joshua finds comfort in holding his oxygen tubes.  It's not so comfortable when he pulls them so hard the stickers peel off.
• No one has fallen over a cord yet, and for that I am grateful.

I don't want to be one of those people that always says "Life will be easier when ..." or "I'll be happy when ...," but I am really looking forward to Joshua being ready to breath on his own.  I know that the day will come with a bit of anxiety, but it's a milestone that I am prepared for.

Literary Tourism - Delaware

Delaware is probably the most forgettable state to me.  Sorry Delawareans, but it's true.  It's only claim to fame for me is that it was the first state to enter the union.  Anyway, I had to hurry up and read a book set there before I forgot it even existed.

There were not a ton of options for Delaware, but I used this handy list of YA books by state to help me out.  I'm not 100% using this list because it doesn't always fit my criteria, but it helps a lot.

The Unbearable Book Club for Unsinkable Girls by Julie Schumacher

Page 9 of this book pretty much summed Delaware up for me.  "We lived in a flat oversized suburb ... a dot on the map in a state people drove through to get somewhere else."  I laughed when I read this because driving through is the only time I have ever experienced Delaware.  Highways and rest stops are all I know.  I got the impression that it is quite typical just ot pop over to Maryland or Philadelphia for a bit because they are that close. 

Did I like the book?  When I first started it, I thought it was exactly what I was looking for, but it devolved quickly.  I sometimes think YA authors write about what they think teens want to read about and not really what teens want to read about.

For instance, the narrator Adrienne is suddenly on a quest to find herself.  The quest is completely manipulated by CeeCee the obnoxious one who has a million issues that the book doesn't even address.  Does a teen really want to see a protagonist with zero backbone?  I hope not.  The characters just didn't work for me.  The book had it's fun parts, but I think I need to read a classic to get my IQ back up. 

Literary Tourism - Utah

I have a little more time on my hands these days, so I've decided to return to my literary journey through the states.  I decided that the easiest way to find a book on Utah is to read one while I'm living here.

Because Utah is stereotypically Mormon, I actually refined my criteria for this project a little bit more.  I wanted a book that was nationally published.  (There are a lot of small publishers in Utah.)  I also didn't want a book about crossing the plains (strictly speaking not Utah) or polygamy (not an accurate representation of typical Utah life.)  It took some searching but I found one.

Missing in Action by Dean Hughes

During World War II, Jay's dad goes missing in the Pacific and his mom decides to move him from Salt Lake City to her hometown of Delta, Utah.  Delta is a small desert town - very typical of small Utah towns.  The community is mostly LDS, but Jay doesn't quite fit in.  His mom is not practicing and Jay is part Navajo.  A short distance away is a Japanese Interment Camp, and Jay gets to know Ken one of the prisoners who works for his grandfather.

Here we learn that Utah housed a lot of Japanese during the war -  a little known and rather embarrassing fact.  It also depicted the barren landscape and respectfully touched upon Mormon culture from the perspective of one who was not fully immersed in the religion.  So, the book did well for my purposes.

Missing in Action was missing action.  Honestly, I didn't finish the story.  Jay played baseball and talked to people and that's about it.      

Life According to Joshua

Dear World,

I being super-baby have hacked Daddy's computer to tell you to truth about my life right now.  

Mommy and Daddy like to keep me swaddled.  I'm almost positive it's because they think I look, "snug as a bug in a rug."  They claim, however, that it is important for my development and use words like "flexion" and "muscle growth" to legitimize the constraint.   

But I wiggle and aquirm and make my opinion known.  A little man's arms deserve to be free!  

I would also like to note that I like to sleep on the right.  When my parents place my head on the left, I wait for them to walk away and maneuver my way around.  Daddy does stretches and massages, but he just thinks they work.  There's nothing anyone can do.  I'm persistent like that. 

I have two favorite times of the day - playtime and food time.  During playtime, mommy and daddy argue over the correct words to stories.  Mommy's always right on that account though.  They show me lots and lots and lots of sea animals.  I've learned about turtles and octopuses and crabs, but mostly whales.  So many whales.  Mommy is a little obsessed.  

They're cool toys, but my favorite plaything is this cannula you see on my face.  It's there whenever I want it.  I pull and pull until I scream with delight, or maybe because it hurts a little.  

The nurses at the NICU taught me that the best time to play is at 2 AM.  My parents disagree.  They don't understand why I'm always excited to be awake around then.  

Last but certainly the best is food time.  My eating/digestion habits have earned me some names.  I thought my name was Joshua, but apparently I'm "Food Monster" or "Hungry Hungry Hippo."  My formula is sometimes hard to digest and grunting helps me express myself.  Mommy and Daddy call me "Sir Grunts-a-lot: and "Grunther."  Oh the indignity!

When Grandma feeds me, it's awesome because I have her undivided attention.  But when Mommy feeds me, I know that sometimes she tries to sneak a peek at her Nook.  Mommy, I know when you aren't admiring my eyes or counting my chins.  Have you noticed that's when I start grunting the most?

Well, that's it for now.  If my parents don't catch me perhaps, I will hack the computer another time.

Sincerely,
Joshua

A NICU Baby at Home

We have successfully completed one week of all being at home together.  Like most typical families it has been filled with cuddles and feedings and sleepless nights.

Going from the NICU to being home is an interesting experience.  They don't call it instensive care for nothing.  Now, we're home fending for ourselves.  WE don't have a 24/7 care and advice line.  WE're still adjusting and having a hard time letting go.  In the hospital, they charted everything - diaper weight, feeding quantity, temperature etc.  We may or may not be keeping a similar chart.

Lest you think we've been completely cut off, we're not.  We had an adventurous trip to the pediatricians office.  Everything is a little more difficult with an oxygen tank.  There is also a program that sends a nurse to your house to check in and make sure that Joshua is developing properly.  I am so grateful.

Because Joshua's immune is fragile, we've mostly been hunkering down.  WE are having a lot of fun with our little man.

Coming Home

Yesterday, Joshua came home.  Jerry led the way in the door with the oxygen tank.  I slowly followed
with Joshua.  I knelt down, pulled Joshua out of his car seat, moved him to his bassinet and I cried.  I'm not saying that I got a little misty eyed.  I cried big fat tears.  From then on I cried all day.  I fed Joshua, and I cried.  I bathed him, and I cried.  I ate chocolate-covered acai berries, and I cried.  I scrolled down Facebook, and I cried.  There were a lot of tears.  There still are actually.

I felt the tears coming on all morning.  Because Joshua came home with an oxygen tank we spent Friday night at the hospital and spent the morning milling around waiting to be discharged.  Tears came and went a little, but I was easily distracted by the nurse, nurse practitioner, and dietician who were all trying to make sure we had everything we needed.

   
And after what felt like an eternity, but was really 10 1/2 weeks, we put our little boy in the car and drove him home.

Why did I cry?  I felt elated, and terrified, and happy, and tired, and nervous, and excited, and hopeful all at the same time.  How could my heart contain itself?

The Michelle that was wheeled into the operating room on February 26 is a different Michelle than the one that carried her son out of the NICU on May 10.  I don't feel superior to anything or anyone from before; I feel so changed.

I'm a mom now - a full-fledged, full-time, not just-during-feedings-at-the-hospital  kind of mom now.  My life-long dream has come true, and I'm sitting here just sobbing from joy.    

Almost There

We're getting close to having Joshua come home.  I don't want to say how close because nothing is 100 percent until they are loaded into the car, but we're almost to the end of the marathon.  We've come a long way.

Then

• In the past ten and a half weeks, Joshua has more than tripled his birth weight.
• When they started feeding him, Joshua ate one milliliter every eight hours through a tube.  Now he treats every meal like an all-you-can-eat buffet.
• He lived in a heated, humidified incubator.  Now his fat and some thick blankets keep him warm.
• Up until a week ago, he needed an enema a day.  He's figured out how to keep things moving on his own these days.
• Machines pumped multiple liters of oxygen into him every minute and sometimes took breaths for him.  Now he only needs .01 liters of oxygen a minute. 

He's a whole new little man.

Now

I've spent the last week or so in crazy nesting mode trying to make room for him in our little apartment.  I'm fairly pleased with how his room looks even though we haven't gone decorating crazy.

Gratitude Part II - Family

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

Dieter F. Uchtdorf

As promised, I am continuing my gratitude post.  Jerry and I live a fair ways away from most of our family, but both sides have been very involved with this whole thing.  In order to protect people's privacy, I'm not going to name names, so hopefully this won't get too confusing.

I know that those who are long distance have wished they were with us we brought Joshua into the world, but they have helped in many ways.  My sister's lengthy phone conversations with me really helped me while I was in the hospital.  Both of my sisters-in-law had great advice and support as well.  My in-laws have called, shown their concern and sent Joshua some adorable clothes.  Outfits with whales really make me happy.

Last weekend, I had a baby shower and my extended family brought me wonderful gifts.  WE know feel completely ready for this little guy to come home.  

One of my aunts who lives close by offered to drive me to my appointments.  I don't think she knew what she was in for.  When my health started to decline, she waited through lengtly ultrasounds and tests.  She brought me lunch and support.  On the day I was admitted to the hospital, she stayed with me and waited in the hospital while Joshua was delivered.  I'm so exceedingly grateful for all the time she spent with me.  It was exactly what I needed.

I have one sister that lives close by.  She tag teamed with my aunt to make sure I was taken care of in the hospital.  She has helped to feed Joshua when I wasn't there.  The night Joshua was born, she burst into my hospital room with her bubbly personality and gifts for Joshua.  I was mostly feeling sick at the time, but it was the best reminder that I also needed to celebrate.  This is perhaps the most importatnt thing she did for me.

 My mom flew to Utah the day after Joshua was born.  I could write pages and pages about her.  Suffice it to say she did a lot for all of us.  She stuffed me full of liver-friendly foods, got me to the NICU as much as I wanted, cleaned my house and even visted at 5 AM to make sure AI was pumping.  My dad was willing to be alone for about a month while mom took care of all of us. 

My grandparents made it their personal mission to get me to the NICU between my mom leaving and Jerry finishing school.  I will treasure the time we spent together going to and from the hospital.  They have been such good sports especially because they haven't been able to go inside to see the baby.

Lastly, there is of course Jerry.  I'm not really one to gush about my husband online.  The list of things he has done throughout this journey would be excessive.  He manages to get me laughing every night when he gives me a shot.  He relishes his time with Joshua.  He gave up his cot one night in the hospital because I couldn't stand my hospital bed any longer.  When it hurt too much for me to climb in bed, he built a little staircase.  He's protective and kind and fun and I'm so glad I have him through all of this.

Vocabulary

Research has shown that the more words a child knows when entering kindergarten the more easily he or she will pick up reading.  Vocabulary is an important early literacy skill.  Of course, children learn vocabulary by being in language rich environments.  Joshua has spent his days being enriched by more medical vocabulary than a two month old should hear.  The words include but are not limited to:

Hematacrit - blood test to measure red blood cell count
Reflux - Jerry scientifically refers to this as up-chuck
Esophagus - because we can't just say throat
Motility - in reference to the large intestine
Apnea - luckily Joshua hasn't heard this term much lately
Caffeine - as in lots and lots and I"m not referring to myself
Bilirubin - we may or may not have thought it was called Billy Reuben and referred to an individual who disvocered the treatment.
Edema - or we could just say puffy.
Hernia - otherwise known as an outie. 

I also found a helpful website that defines terms.  I wish I had found this 10 weeks ago.

It seems our little man is destined to be a good reader and quite possibly a doctor.