A glimmer!

Well, Joshua after days and weeks of being at a standstill you have blown us all away by your progress the past few days!  I am so thankful for your progress.  When I was feeling weary and worn the Lord strengthened you and blessed you with great progress and I am so grateful.  It was only a little over a week ago that they extubated you and changed you onto Si-pap.  Slowly but surely you've made your way to C-pap on Wednesday and NOW they are talking about high flow cannula tomorrow!  Dare I say, the light is starting to glimmer at the end of the tunnel again?!  On top of that you are doing AWESOME with your feeds!  Daddy and Mommy have been asking about my breast milk vs. hypoallergenic formula for you and they finally decided to give it a try.  What do you know, it worked!  It always seems like the doctors search and search for something complex and medically wrong.  They put you through all kinds of uncomfortable tests, x-rays, and ultrasounds.  They take painful biopsies and (Praise the Lord) right now your belly issues have been solved by simply changing out the breast milk to formula.  Why don't they try the easy things first?!  That has happened several times now and it is frustrating to Mommy and Daddy especially when we suggest the simple fixes as the most logical fix.  So today the doctor said the progression will be high-flow cannula, work up to full feeds (by mid-week), then start non-nutritive breastfeeding possibly next week, then swap out one feed of formula for milk!  Oh I sure hope that all goes smoothly, but we have an eye exam in there and Daddy and I are concerned about the changes they saw last week and are worried they may say surgery this week.  We are hoping and praying that is not the case.  And I am praying that all the hours of pumping I've put in, the pain and the 10,000+mLs in the freezer are not a waste.  I'm still pumping and still hoping they can figure things out.  We are praying for you bump on your thigh that it would not get any bigger and that you would not get anymore bumps.  They think it may be a lipoma - a fatty tumor.  For now I will try to remain hopeful on all accounts.

Now you have a mobile to look at!

Your face mask-free for a moment!

Time with my oldest and youngest!

Happy Thanksgiving!  My heart is having a hard time being thankful for life right now.  But I am so thankful that Abby asked to come in with me this morning to visit you!  I planned to come in before we headed to Lima in the afternoon for Thanksgiving dinner with the Rumschlags.

So Abby and I went in and we had a very kind nurse.  After your care time she asked me (privately) if Abby would like to hold you!  I thought for a split second...because it had taken me off guard!  YES!  What a wonderful present for your sister on Thanksgiving!  We had never asked if anyone else could hold you, we've only let one other person outside our family touch you!  (Pastor Eric)

Abby sure loved her time with you.  You were so quiet and alert and looking up at your sister with big eyes.  It was like you knew who she was and how much she loves you.

In the lobby at NCH - unfortunately I didn't know
there were fingerprints on the lens

She was absolutely so excited which was why
she was making her hands into fists!
She could hardly contain her excitement for holding you!

You were so wide awake and looking up at Abby!

Sitting so still.  Holding you for 20 min!

My oldest and youngest!

Abby got to help hold the
blow-by during care time

Happy Turkey Day!

All snuggled back up!  I'll miss you the rest of the day Joshua!

A chocolate milk for the ride home.

One last visit

Today we headed to COSI for a special outing to celebrate David's birthday.  Afterwards we stopped over at Children's since we were in the neighborhood.  There are only a few more days left that the kids are able to visit before they restrict visitors for flu season, so I wanted to bring them over to see Joshua.  Hopefully this will not be the last time they see him before he comes home. 

They loved looking at Joshua as always.  Abby wanted to sing Happy Birthday to him since he is 3 months old today!  But as always there was some arguing to ruin the sweet moment.  They all enjoyed their time with their brother (or brud - as Abby calls him.  It is a combo of brother and buddy)  They all took turns throwing their brother a kiss...it is better than blowing a kiss because there is less germage.

Abby was so excited when you started
making noises!

Look - He's this big now mom!!!

Watching and singing
Jake and the Neverland Pirates on Netflix

Such a loving big sister!

Happy 3 months!

My littlest buddy

Mommy and Joshua just hanging out
 and spending time together

Kissing all today's pains away from your ROP test
and your poor bottom that needs to heal from the biopsy.

Big Sibs - Abby

I'm taking a break from my usual posts to talk about all that is happening with each Big Sib.

Abby has been craving some girl time lately.  She misses Joe and I and gets very emotional when we are away visiting Joshua.  She gets tired of going to friends' houses even though she always has a great time while she is there.  She absolutely loves spending time with her mom and so I've tried to carve out some girls days.  Even if it is just a trip to Target I call it a girls day out and we go together and try to make a little fun out of it and get a treat together.  One of our girls day out was to the American Girl store - which she loved!  A doll is at the top of her Christmas list and she told me, "Mommy I'm so glad there is a Santa.  Then he can get me an American Girl doll and you don't have to spend money on it."  Hmmm... someday Abby you will know. 

Abby is a little jack-o-lantern again.  She lost two teeth on consecutive days again.  The first time she pulled out her own tooth she got a whole dollar.  Last time she lost teeth on consecutive days she got extra money too.  So she remembered both of these instances and wiggled and wiggled her own tooth out.  The first tooth got her $.80 and the second tooth she got $1.85.  Joe grew up receiving random amounts of money from the tooth fairy.  We've kept that tradition - plus it helps her money counting skills :)

Abby loves her littlest brother so much.  She always asks about his progress each time we come home from the hospital.  Every time she asks, "How is Joshua today?"  She also used to ask, "Is he off the ventilator yet?" and then cheered when he was.  She gets excited when he doesn't have to take medicine anymore for an infection.  She gets sad when we tell her he cried because he was hurting.  She asks about him drinking Mommy's milk.  She is very inquisitive and loving and has picked up a lot on the (limited) lingo that Joe and I have explained to the children.  She loves Joshua and is constantly making artwork for his room.  Originally she would say that she was excited that Joshua came early because we could see him and hold him sooner.  But now she is realizing the gravity of it all.  She knows that this has been too long, that Joshua is not healthy and now she realizes it is better for him to still be in my belly.  This is not the way things are supposed to be.

Weariness and Random thoughts

I walked in the lobby of NCH this morning and saw all of the Christmas decorations going up and then it really hit me.  We will be spending Christmas here and I'm definitely more emotional about it than I've allowed myself to be.  I knew Christmas was coming and I knew we weren't going home any time soon, but somehow seeing the decorations makes it so real and so discouraging.  We have been here almost 3 months, but I'm living in a world where it is still early fall. Time does not pass the same way when you are living day to day going back and forth to the hospital.  Everything in the outside world is all a blur just trying to get through each day.  Usually I'm well on my way to being done with Christmas shopping by this time, but this year I just went to Target yesterday to buy a present for David's birthday on Friday.  Everything is an afterthought this year.  Hopefully Santa will remember to bring the gifts!
 
This week is the week of Thanksgiving and I'm finding it very hard to be thankful.  I was really good on posting on my "Thankful" post until last week.  I've hit a wall, it is so hard to find hope when there is no light at the end of the tunnel.  These past couple weeks have been discouraging.  We aren't making progress on feeds.  Last week they fed Joshua 6mLs of milk then he gave them back 8.  They refed 8mLs and he gave them back 15.  It was very discouraging.  Since then it has been half to all of the feed back as residual.  He has to be able to eat, or at least digest, to come home - and he has to breathe.  Breathing is making very S.L.O.W. progress, but at least we are on Si-pap again.  It would pretty much take a miracle to be home one month from now at Christmas or even by New Years.  So now we are hoping to be home by Valentine's Day, but Abby has come up with several other dates that we can adjust our goal to if need be...Daddy's b-day (March 7), Abby's b-day, Jeremiah's b-day... 

I've been feeling sad thinking about the preparations & nesting I'd be doing and big belly I should have these last two and a half weeks of my pregnancy.  And depending on the day, seeing people who are due around mid-December is very difficult.  We drove past Riverside the other day and it made me cry just thinking about what I should be planning for in a healthy pregnancy or even what could have been if I didn't get that infection and was on bed rest just a little longer.

So, I was hoping today's tests (abdominal ultrasound, renal ultrasound, UGI) would give us some answers, but it looks like all the tests so far came back normal - or at least nothing that they didn't already know.  Which should have me rejoicing, but I am not.  I want an answer.  I want to know why we are at a standstill.  We have been waiting and growing and growing and waiting for coming up on 3 months and I'm weary.  The growing part is good, but Joshua's organs are not maturing proportionately with the growth.  We are at the same place with feeds that we were 2 months ago...we are at the same place respiratory wise that we were one month ago. 

Meanwhile our bodies are getting very weary and worn.  We've got three people in the house (including me) on antibiotics and my body also aches because it is so tired.  So so tired.  But you know what...Joshua has not given up yet...he is not fighting in such a way to amaze the doctors with progress, but fighting just enough to get to another day, so that is what I will try to do with the Lord's strength.  One day at a time.  To get to the day when I can hopefully breastfeed my son - to make this pain, the hours, and all the ounces worth it.  To get to the day when I can pick up my son whenever I feel like it; whenever he is uncomfortable, or in pain, or tired and just wants a cuddle.  To get to the day when he is home and our family is all together.  Someday...Some.day....

He gives strength to the weary
    and increases the power of the weak.
Even youths grow tired and weary,
    and young men stumble and fall;
but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.
Isaiah 40:29-31

Field Trip

Your trip to Fluoroscopy in the new hospital

Today you had a field trip to get your upper GI done.  Mommy was able to stand at the head of your bed with a lead drape over me and stay with you the whole time.  I held your paci in and held your hands.  You did a great job!  Thankfully they did not see any strictures, adhesions, or twisting in your bowels.  So why can't you tolerate my milk?!

Hold on tight!

Holding on tight!!!  So precious!

Helping Mommy keep the paci in your mouth

Yay - you are back in a crib!

I love these big, big feet! 
They are about twice the size as when you were born!

We love you Chris!

Just hanging out with one of our primary nurses

Now that you are bigger,
Chris loves to get you out and hold you!

I've outgrown my first preemie outfit!!!
I can't stretch these legs out!

Baptism day

Joshua - We had you baptized today.  We asked Mommy's Uncle John as well as Pastor Eric to be there.  Uncle John married Mommy and Daddy and also baptized Abby when we lived up in Akron.  Uncle John has also been praying for you since you were born and helped guide Mommy and Daddy's decision to baptize you here in the NICU.  It was a special day.  We had a little service and the baptism and then Pastor Eric prayed for you.  You are loved.  You are covered in prayers.  You are a child of God.  Always remember that. 

 

Mommy's Aunt Pat and Uncle John

 

Thank you Pastor Eric

 

All wrapped in a blanket knitted especially for you by
Great Grandma Pud.  Every stitch stitched with love and prayers.