**2014 Letter from Joshua

I had high hopes of writing a letter early this year.  I had goals of getting it written by Thanksgiving and ready to mail out the first week in Dec.  Did that happen??? NO!!!  The reason?  I am a procrastinator...always have been and probably always will be.  But I don't believe that is the only excuse for it being late this year.  (I finally sent them out on Dec 22)

The real reason was...I was scared!  Relatives, doctors, and friends would mention about how exciting Christmas will be this year having everyone home and I would politely nod my head and smile...perhaps mutter a "yeah."  The anticipation was supposed to be exciting, but deep down I had fear.  Fear that Joshua would get sick and we would have to spend his 2nd Christmas in the hospital.  He has yet to get a respiratory virus and I was certain it was going to ruin our plans for a nice Christmas.  I have learned from the last year that many of our wonderful earthly plans have gotten torn to shreds and God steps in saying NOPE, nuh-uh...you think you had those lovely plans, but I've got something else in mind.  So you see, I couldn't write and mail out those letters until the last minute when I could finally put those fears to rest!
Thank you Jesus!  It was a wonderful Christmas at HOME!!!


Here is Joshua's letter!

Merry Christmas!

Hi, I’m Joshua.  Some of you have met me and many of you have prayed for me, even before I was born.  Mom has a long list to do before Christmas so I thought I would help her and write you a Rumschlag family update.

As most of you know, 2014 started out with a great celebration!  After spending the first 149 days of my life in the hospital, on January 22 I got to come home!  Mom and Dad had to adjust to having a baby on oxygen and other medical equipment.  I was tethered to my tubing, but after helping the nurses in the hospital each day, Mom and Dad weren’t too intimidated by the extra machines and tanks.  At the end of May, my lungs were healthy enough that I could stay off of the oxygen.  As I grow, my lungs get bigger and stronger, but the doctors are still watching me carefully.

Now, I am almost 16 months old and weigh 17lbs 10 oz. I’m not on the growth charts yet, but I keep getting bigger and stronger, so the doctors say that is okay.  Mom tells me that I’m about the size that each of my siblings were when they were 9 months old.  But I’ve come a long way from the 1lb 11oz I was when I was born!

 I just had my “due date birthday” on December 12.  The doctors and therapists look to see how I’m developing based on how old I would be if I was born on my due date.  They will keep looking at that corrected age for another year.  They hope by the time I’m 2 years old that I will catch up developmentally to kids my real age.  

Mommy calls me her little explorer!  I love to crawl under and over things and squeeze through tight spaces.  I can stand while holding on to the couch or wall and I love to cruise around the room babbling and exploring.  I “talk” a lot, but no one can understand me.  I like to say “uh-oh” when something drops.  That is my first and only word that all the big people understand.

Mommy gets worried about me hitting milestones because of the bleeding I had in my brain, but so far I’ve hit those milestones - just in my own time.  I try to tell mom there is nothing to worry about; I’ve been through a lot and I’m tough, but I guess that’s what parents do because they love me so much.

In October, Mommy and the doctors figured out that I had a hard time seeing and needed glasses.  I love my glasses and leave them on because they help me see so much better and keep my eyes from getting too tired.  A few weeks ago Mom and Dad started patching my right eye for several hours each day.  They say it is to strengthen my left eye to keep it from turning in, but I do not like it – not one bit!

Mommy and Daddy have been pretty protective of me especially since it is winter and flu season again.  I liked summertime when I would go outside and go for walks or to the park for playdates.  Now that it is winter again, I stay home most of the time except for church or doctor’s appointments.  Mom and Dad try their best to protect me from germs because they are afraid if my lungs get sick I may have to go back to the hospital.  Thankfully, I’ve only had a few minor illnesses. 

My sister Abby (7.5 yrs old) likes to play with me and help mom out.  Mommy appreciates this because in a house full of boys things can get pretty crazy!  Abby also enjoys taking ballet lessons, doing crafts, and playing piano.  I like to crawl up to the piano when she is playing and press the keys I can reach.  I know she likes playing duets with me.  Abby also loves learning about science and history.  She is always taking books out of the library to read; she especially loves books about space or rocks/minerals.  She is in 2^nd grade this year and Mommy is her homeschool teacher.

My brother David was excited to start his kindergarten curriculum when he turned 5 this year.  He and Abby are a part of a homeschool science co-op with several other homeschooling families.  All three of my older siblings go to AWANA each week at church where they memorize Bible verses, learn lessons, and play games.  

A house full of boys is lots of fun for me!  There are always cars and balls around to play with.  I love it when Daddy gets down on the floor to wrestle with David and Jeremiah (3.5).  I like to crawl to them and join in the fun too.  David and Jeremiah are best buds.  I can’t wait till I am bigger and can play with them too!  They love to play Legos, drive cars and fly planes around the room, build forts, and play sports with each other.  Jeremiah sometimes crawls around with me and makes me laugh!  This year we’ve had some fun boys-only times.  Mommy and Abby flew to Disney World with friends in September and left the boys here for 5 days.  Daddy did a great job of taking care of everything so Mommy and Abby could have a nice vacation!

Daddy still likes his job at ARCADIS (an environmental consulting company).  This year he has had the opportunity to transition to a new focus.  These new projects deal with his Master’s thesis study on rivers, so he is excited to be in his area of expertise.  He also enjoyed the summer church softball league and started volunteering to be a handbook shepherd at AWANA.

Mommy is busy with homeschooling and housework.  I take up a lot of her time because if I’m not exploring, I’m a pretty needy baby – definitely a Momma’s boy.  Playing the piano is one of her stress-relievers these days.  Daddy often says that he will clean up from dinner if she plays the piano for him.  Obviously, she agrees! 

She also made some extra time to run in the Nationwide Children’s half marathon this year.  She broke two toes only one month before the race.  This stopped her training short, but she was able to complete the race – it meant a lot to her and to me.  Nationwide Children’s Hospital will always have a special place in our family’s heart.

Life has settled down so much from where our family was this time last year!  Last year I celebrated my first Christmas in the hospital which was hard on our family.  I am really looking forward to celebrating my first Christmas at home!

In front of our tree, my siblings set up a Little People nativity.  Mommy and Daddy tell me that that little baby, Jesus, in the manger was born at Christmas.  He came into the world to save us all from the bad things we do, called sins.  I know that Jesus was the one who took care of me during those tough days in the NICU.  He is called Emmanuel: God with us.  He held me when my Mommy couldn’t visit me and He gave me strength and courage to fight to breathe when my lungs wouldn’t work.  He is called the Great Physician; He helped sustain my life and gave the doctors and nurses wisdom on how to treat me.  He is called the Prince of Peace; He gave my Mom and Dad peace when things looked grim.  And He is the baby in the manger this Christmas.  I’m looking forward to celebrating His birth! 

In this season of thankfulness, we see the blessings the Lord showered on our family.  It didn’t come without hurt and heartache; battle-wounds and scars…but we are blessed.

May the Lord bless your family this Christmas and throughout 2015.

Love,                                             

Joshua

(and the rest of my family: Joe, Sarah, Abby, David, and Jeremiah) 

Squeezing Sophie

Getting you to stay quiet in church is quite a feat these days.  Now that you are more mobile you want to squirm out of our arms and crawl around.  We don't want to put you in the nursery and expose you to all the germs so I try my best to occupy you or we take you out.  Last Sunday was hard because we couldn't even "plug" you with a bottle.  You were still in the transition from breast milk to formula and didn't like the taste of the formula.  During the other times I had to quiet you with toys or Cheerios.  One of the toys I took out was Sophie the giraffe.  Immediately you squeezed her and she let out a big SQUEAK!  I quickly put her away, but smiled!  A milestone!

On Thursday at BPD when the OT and PT were "testing" you they were asking each other, "Did he squeeze that toy?  I think so"...they concluded.  Squeaking a toy, a milestone?!  That is one that I'd never heard of with my termies!  Who would ever videotape a baby's first squeeze?  But with you...every.little.thing is HUGE!  It shows your brain is rerouting itself around all of your damaged brain tissue.  Every little milestone is a huge praise!  Thank you Lord!

BPD 12 mo assessment

UGH!  What a long appointment!  Two and a half hours!  That is the longest one yet!  But at least we got good news!  The OT and PT are pleased with how well you are doing...and I definitely had to get a photo with you and your wonderful PT when she played with you.

Lung wise you have some congestion, but no need for any medications.  We are just going to keep an eye on it.

The dietitian said you are growing well and making your own curve below the charts.  You were 17lbs 13.7 oz and 27.75 inches long.  She gave us some tips to help you chew better.  We are going to try them out so you can eat more table food.

Zoo Lights!

A last minute decision to go see the zoo lights - turned out to be a fun night!   You were super bundled and cozy warm in your big red snowsuit!  You loved looking at all the lights!  You just had a mesmerized smile on your face most of the night!  It was so nice to spend some family time doing "normal" Christmas traditions!  Such a change from last year at this time!  And the older kids loved seeing all of the animals (especially the tigers) that were very active for being cold and nighttime.

A goal achieved! We did it!

What a day to celebrate!  You're one year corrected now!  And I did it!!!  My milk lasted until today!!!  When you were discharged last year we had two deep freezers full of milk!  Pumping while you were in the NICU was hard.  Waking up in the middle of the night to pump for a baby who was laying sickly on the other side of town was a burden.  Milk doesn't flow out of a tired and stressed momma very easily or when your baby is behind a plastic.  I put up walls around my heart and those walls made it hard to provide milk for you.  And for me it was harder than most.  Lactation consultants couldn't believe how long it would take me to pump.  15 minutes they said...HA  that's BS!  I would pump 30 minutes before my milk would start to flow...and then another 30 minutes until enough came out...then add on the time that it took to wash all the parts and bottle the milk.   And if I fell asleep during that time, my body shut down...nothing would come out.  I cried...many days and nights I cried over pumping.  Stupid pumping.  Why did I put myself through this?  It hurt, I wanted to quit...SO BADLY I wanted to quit!   Pretty much every day pumping in the NICU I wanted to quit.  I would dread the hour when my watch would beep and it would be time to hook up.  I'd tell myself..."One more day...I can make it till tomorrow.  I can quit tomorrow, but I'm going to pump today.  I just can't quit today."  Day after day after day I had these thoughts.  Day after day...I made it one more day.  I was pretty stubborn...and with Joe's encouragement I kept going.

I wanted to give you the best...and breast milk IS the best even if your belly couldn't handle the milk I pumped for you many of the days and you were fed via TPN IVs.  By the time you were discharged my love for you, persistence, and stubbornness had stored up enough milk to fill two large deep freezers full of milk!  I had high hopes of my "breast-feeding rockstar" from the NICU doing awesome breastfeeding at home too!  But when you were discharged nursing became difficult.  Sometimes you had trouble breathing and so you had a hard time eating.  Other times you just liked the bottle that you had grown so accustomed to in the NICU better than snuggling and suckling at my breast.  But my original goal was to give you breast milk until your adjusted birthday (Dec 12)...and at a minimum until your regular birthday.  But you made it SO difficult!  There were many days I doubted that we would achieve either goal.  You liked your bottle, you liked to be active, you were distracted by all the sounds your siblings made, you liked biting me, you were my first baby to give me painful mastitis (several times).  So you got more and more bottles and less and less of me because you needed to grow and so I had to give in to the bottle.  There were days I actually liked it when you woke up at night to nurse because you were calm and snuggly and fed really well like a nursing baby should!

I prayed that somehow my milk supply (freezer and me) would last till your birthday in August...then I prayed that somehow I could keep nursing you after my Disney World trip (because I continued to pump on that trip)...then I prayed that somehow I could make it to that original goal of Dec 12.  And the Lord heard my prayers and answered them!

Thank you Lord!  I definitely couldn't have done this on my own!

I knew that my milk was best for your immune system and I was stubborn.  I had set a goal in the NICU and we were going to achieve it!  I had breastfed Abby and Jeremiah until their birthdays and I wanted to give that to you as well.  And the Lord certainly helped make that happen!  Today you had your last bottle from the freezer and even though you are still nursing 1-2 times a day, I foresee you weaning very quickly when we switch you over to formula bottles.

But today we celebrated more than with cupcakes and Chick-fil-A.  We celebrated with a bottle of breastmilk!  Cheers Joshua!  Well done!

The last frozen bag!

The last bottle

Happy Due Date!

Loving that cupcake!!!

First I had to post these bath pics from the morning!

So different without your glasses!

Now its time to celebrate with your brothers!
Happy ONE YEAR CORRECTED!

David and Jeremiah sang really loud and wanted to be so
close to you!  They were so excited to celebrate with you!
And they were excited for you to eat a cupcake
so that they could get theirs!

Look at this HUGE bite!  Once your took your first bite
there was no going back!  You shoveled it in!
None of your brothers or sister ever polished off their cupcake
the way you did!  Such a change from August when you
cried and didn't even want to taste the icing.

Silly brother!

You kept going and going, eating every last bite!

You are pretty proud of yourself!  That was delicious!
Happy Birthday Joshua!

Trimming the tree

Today we promised the kids that we would decorate our tree.  It has been up for a week, but today we finally took the time to trim it with lights and ornaments.  Abby reminded me that last year I was at the hospital when Daddy and the kids decorated the tree.  I had totally forgotten that I missed it.  I guess I just blocked out that memory along with other things about last year's Christmas season that were disappointing and disheartening.

This year as I trimmed the tree with you pulling up at my legs or with you on my hip, a lump swelled in my throat.  Remembering the difficulty of the season last year with our family apart.  You wanted a part in the decorating this year.  You wanted to be held.  You wanted me to remember that you are here and that you are healthy.  

The brokenness of last Christmas definitely effected me more than I realized.  I told a homeschool mom recently that we were already on Christmas break.  She was surprised, and as I explained to her the reason, I could barely finish my sentence.  I just briefly told her that this year I want to enjoy this Christmas season with my kids, to enjoy doing normal holiday things with them like baking cookies and listening to Christmas music - things we didn't get to do last year together.  She understood and as I tried to regain composure I realized that the ways we just had to survive and get through the season with you in the hospital left another hole in my heart.  Last year was hard.  Last Christmas was really hard.  I'm thankful we can all be together this year!!!

So far you don't care too much about the tree and the sparkling lights or decorations.  I hope it isn't an issue this year...but you are one curious explorer!!!

Never woulda....

I never would have let your older siblings do this...but I see it as a developmental game for you.  Cause and effect...fine motor skills... you had a lot of fun and I even folded them all so you could do it again!

And this is just you being you...being determined to get a toy
even when it means nose-diving into the basket
to reach it and then getting stuck!

Silly boy!

Uh-oh!!!!

You did it!  You said your first word today!  "Uh-Oh" and I cried tears of joy!

It was lunchtime and you had a pouch of pureed food that you were eating/playing with while I was getting other food ready for you.  Then you dropped the pouch on the floor and said it!  You said, "Uh-oh"  Your first word!

You can say sounds like ma-ma, da-da, but they never seem to correlate to anything.  You will repeat sounds back and forth in a "conversation" but never, before today, have you said a sound to connect it to something or someone!  Often, I even wonder if you recognize your own name when I call you. (which is a 7 month milestone)  Which causes me to feel concern.

Earlier today we were at David's five year well check-up and his pediatrician asked how you were doing.  When she asked if you were saying any words I said, "No, he is really lacking in that area.  He doesn't even say uh-oh when he drops something."  HA!  Another time you prove me wrong.  Apparently you were listening in on the appointment from the parking lot.  (Daddy met us at David's appointment and waited out in the van with you, Abby and Jeremiah so I didn't have to bring you into the germy office.)

What a big day for you!  I've said it before and I often wonder when we will see the results of your grade III bilateral hemorrhage in your brain,or the hemorrhage in your cerebellum.  But you just do things in your own time.  I need to learn to be more patient because every time I express my concern  you rise to the challenge and show me there is nothing to worry about!  Thank you Lord!  Thank you that Joshua's brain can connect and communicate with words.  Thank you for those joyful tears!