First field trip

We took your first "field trip" to the new part of the hospital today to get a VCUG...you do NOT have urinary reflux!  Thankfully many of our favorite people were here to help with the transport.  Cari our nurse, Jess the RT, Autumn the NNP, Dr. Isbel, and I all took the trip with you.  They let me be in with you during the procedure where they injected dye into your bladder to check for reflux.  I held your hands and kept you paci in your mouth.  Good news that you don't have reflux, but now we need you to stop getting UTI's!!!

Yesterday you endured a 2.5 hour PICC line placement failure - thankfully they got the PICC placed successfully today after only the 2nd try.  It is in your skull though  :(  They had to shave part of your head so you had to have your first haircut already at 35weeks old.  During the PICC line x-ray they discovered you have a broken arm.  The break is just above your elbow on your left arm.  My heart is so sad for all you have had to endure in your short little life.  Plus yesterday after your eye exam they told us you have ROP Level 2 stage 2.  Right now that does not require treatment, but they will continue monitoring.  When will it end?  

Your new PICC line.  I hope you can get back on
milk feeds soon and kick all these IV's again!
You have 2 peripheral IVs too

I hope to do a lot of kangarooing before your surgery tomorrow.  I need some cuddles and snuggles before they take you in.  Praying this won't take you back too many steps respiratory wise since you'll have to be back on the vent for surgery. 

Such cute shirt made by my friend Jen

Looking so adorable in his giraffe shirt
sleeping in his giraffe bed



You were so upset today - squirmy and crying -
probably from all the poking and prodding
or maybe your arm was bothering you. 
I wanted to pick you up and comfort you so badly,
but I can't do that with all of the things attached to you. 
Finally with the nurse's help I got you out to
 kangaroo and you quickly snuggled in and were so content. 
It felt SO good to be able to comfort you.

Helping at caretime - just photos

Mmmmmm....I like this biotene

Diaper time!

Nightly weigh in!

Double check!

Gassy Belly @ 3am - lots of medical jargon

We are riding the roller coaster again Joshua and I don't like it.  Despite your UTI you had been doing really well.  You just can't kick the e-coli causing the infection so they had to extend the antibiotics. 
- bilirubin level was slightly decreased (down 9 from 10)
- IVH - slightly decreased size of ventricles on your last brain ultrasound!!!!
- lowered rate on the Sipap machine to 10bpm. 
-  O2 is the same - 34% even with the lowered rate!
You are doing such a good job and working so hard to keep breathing.  They had talked about moving you down to C-pap, but after last night that won't happen for a little while longer. 

Mommy and Daddy got a call in the middle of the night from the NNP.  She said your belly girth grew 2cm from your last care.  After an x-ray they are really concerned about the air in your belly.  They stopped your feeds, changed out your feeding tube to a larger OG tube so they can try to suck out the air.  They are culturing your blood to see if the E-coli or something else got into your blood.  They said you were really lethargic and weren't even disturbed when they pricked your heal to get the blood. 

You took so many steps backward during the day today...
-radiant warmer, no more crib
-naked again, no clothes
-TPN and lipids, no breast milk
-IV's and tomorrow a PICC line :(
- another blood transfusion
-ultrasound on your scrotum (hernia)
- urine and blood cultures
- Up on your oxygen
- Up on your rate back to 30 from 10
Your big belly is reducing your lung capacity and effecting your breathing significantly.

If there is no infection then they will take you downstairs for a VCUG (urinary reflux test), a barium enima? and an upper GI?(to check how things move through your bowels)  They think something there is a stricture (scar tissue restricting your bowels) from your original perforation which could require surgery to fix. 

All of these tests require a great deal of patience because it could be days before we know what is wrong with your belly and why all of a sudden you started doing badly.  I'm at the end of my patience.  I just hope we don't get anymore middle of the night calls!  At least by the end of the evening you were moving around and acting more like your normal self.  That seemed to please the nurses and NNP and Mommy too!

Your new bed

Thankful...

A friend on FB posted a planks and thanks, so I will try again to cultivate a thankful heart.  And the planks certainly help me remember because I have no abs post pregnancy and the soreness from daily planks helps me think about thankfulness...starting on Day 2

Nov. 2 - I'm thankful for the firey reds and oranges of the fall trees.  They shine brightly against the dreary, grey days we've been having.  And remind me of the beauty in God's creation even when my heart is sad.

Nov. 3 - Thankful for friends and family who have encouraged me after sharing this blog.  I still intend to make this blog a documentation of Joshua's medical journey and our emotional journey as our family walks through this together (however you'll only get 75% of my emotions - my wrestlings, deepest struggles and pains are written in my prayer journal)...To me doesn't seem too exciting for the outsider to read but I am definitely appreciative of your kind words since I shared the link.

Nov. 4 - #1 Thankful for a loving friend who gave me a shoulder to cry on and a newborn to hold; helping me hope that one day I'll get to hold Joshua like that.  AND #2...thankful for insurance in light of a huge stack of EOB's that we received in the mail that so far have totaled 100's of thousands of dollars.  I am thankful for Joe's job that allows us to buy this insurance so that, although we will bleed, we will not be financially devastated by this journey.  Thankful that there is no lifetime max for Joshua either!

Nov. 5 - Thankful for friends and family who have lifted prayers for me and our family for the past 12 weeks since my water broke.  And for Joshua for the 10 weeks of his life.  Thankful for the encouraging words, verses, and prayers written and spoken to me via e-mail, cards, over the phone, and in person.  Those words have been such a blessing especially on the days when I need to be pointed back to the Truth.

Nov. 6 - Thankful for all of the people who have offered to watch our older 3 children so we can spend time with Joshua.  Thankful my children are flexible and can spend time with loving families they may not know too well.  Thankful for grandmas who come and adjust their schedules to help us out.  Especially when it means a very last minute change in plans like this week with Joshua's upcoming surgery!

Nov. 7 - Thankful for the 4 children the Lord has blessed us with to get to know here on earth.  Thankful for Abby's motherly love for her brothers, her love for Jesus, her amazing memory, her good night notes she leaves when we are at the hospital, her hugs, her caring heart, and understanding that things are hard right now.  Thankful for David's imagination, his blossoming faith, that goofy and mischievous look in his squinty eyes, his desire to always pray and be prayed for, his love of music and singing, and his love for his siblings.  Thankful for Jeremiah's cute little voice, his dimple, his determination/stubbornness, his love for his brother and sister shown by the way he loves to imitate them, his love for excavators, trucks, trains, footballs, and all things boy, the way he loves to tackle, and for his soft side full of cuddles and kisses.  Thankful for all of the little faint sounds that Joshua makes, thankful for kangaroo time, for kisses, for his perfect little hands and feet, for the work God is doing in his body to heal him and help him grow, and for the 10 weeks we’ve had to know this little fighter. 

Nov. 8 - Thankful Joshua made it through his 3rd surgery.

Nov. 9 - Thankful I made it through another day in NICU world.  Thankful for the Truth and I'm trying to meditate on it...

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ----2 Cor.12:9

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

 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” ----Matthew 11:28-30

Nov. 10 - Thankful for prayer.  That no matter how awkward my prayers feel or how much work it seems I am trusting the Lord hears each prayer lifted.  Even when they don't seem to be answered and even when I sound like a broken record to Him, He knows my heart.

Nov. 11 - Thankful for friends and women at church who have reminded me that Joshua is NEVER alone.  Even when I feel guilty for skipping a day, not visiting my son...even on days when I wish I could be at the hospital more hours than I already am...or even on days when I'm at the hospital, but not able to hold Joshua - Joshua is NOT abandoned.  Even when his nurse is brand new and we are frustrated that there is no familiar face in the room.  Jesus is in the room, shining His light on Joshua.  God is making His presence known to Joshua, holding my little boy in His all-powerful, yet gentle and loving arms.  I will rest in this.

Here's a cute note from a Daddy's friend's mom - written from you:
Dear Mom and Dad, I know you love me lots. I can tell by the way you talk to me and the way you pray for me. When I get really sick, my Heavenly Father puts his arms around me and tells me, "Josh, I am here, and it's going to be OK."     

Nov. 12 - Thankful for the piano, for the 9 years of lessons that I took from 3-12th grade, thankful we have a piano in our house now.  I'm thankful Joe said he would clean everything up from dinner if I would just sit and play...deal!  Thankful for hymns, praise music, Mozart, Chopin, and Rachmaninoff that help me pound out my feelings on the black and white keys.  I'm thankful that Abby is showing interest and starting to learn some songs too.

Nov. 13 - Thankful that the call we received at 1:30 am was not a rush-to-the-hospital kind of call.

Nov. 14 - Thankful for meals provided to us these past few months.  For gift cards, gas cards, people who have cleaned our house, folded laundry, or mowed our lawn so we can spend more time together as a family without worrying about these things.

Nov. 15 - Well no more planks for a while, but I am thankful to have my hernia surgery over with.  Even though I'd never had general anesthesia before and was a little nervous about that, I thankful I have such a brave son.  If he can do it, I surely could do it!

Nov. 16 - Thankful for my husband - for how me cares for me and loves me and walks with me through the good times and bad.  Thankful for date nights when kids are at Grandma and Grandpa's house too!

Nov. 17 - Thankful for poop!  Thankful when body parts and systems are working as they were created to.  Our Creator knit us together amazingly complex!  If one system is not functioning properly others suffer.  I've learned more about anatomy and physiology than I care to know, but in it all I see a creative, powerful and loving God who has given humans the capacity to figure out how these systems work and how to help a baby as sick as Joshua have a chance at life.

Nov. 18 -

Shhhhh....don't tell...

Joshua - I'm tired of being a bystander mom.  I'm tired of not being able to pick you up when I want to, tired of the nurses being your caretaker.  I'm tired of nurses being in the room so when I hold you it isn't even a private time together.  I'm tired of not being able to pick you up and comfort you if you are crying.  Tired of the looming fear of a brady or desat if I disturb you.  Tired of not being able to adjust your mask if you look uncomfortable.  Tired of wishing I could be with you more.  Tired of feeling torn between home and the hospital.  Tired of nurses taking my job to dress you, wrap you, feed you, clean you, suction you.  Tired of feeling helpless.  Sooooo today, I did something about it but SHHHHHH....don't tell....

I was holding you swaddled, not kangarooing.  Our nurse had finally left the room and I was just struggling with all of the emotions being a bystander mom, plus some other things.  I was very stressed and needed a break from the room to clear my head.  But I didn't want to ask for help, I didn't want to talk to the nurses or chit-chat about your conditions, or watch them do things I am perfectly capable of doing - I just wanted to feel like a normal mom to you.  So I stood up all by myself and put you back in the crib all by myself!  All your wires and tubes were a tangled mess, but I DID IT!  I've been watching all this long enough to know what to do and felt pretty confident.  Plus it is a lot easier on Si-Pap than the ventilator with no tube down your throat.  The only thing I was a little leery about was unhooking and rethreading your SiPap tubes through the crib slats, but I did that too with no desats!  Then I took a few photos and rewrapped you and untangled and positioned everything just perfectly.  The nurse came in when I was all done.  I thought she was going to yell at me, but she didn't say anything.  I think she assumed another nurse helped me.  I'm just thankful I wasn't caught in the act!!!

Holding you - with the help of the nurse :(



I'm loving holding you,
but I'm really struggling inside and
feel the need to put you back.

Our Halloween photo shoot - a couple days late
Wires are still tangled behind you.

You are a little yellow today like the duck

Tucked in all cozy and everything is untangled!

Nighty, night!

Without the mask for a little bit - Just photos

Waiting for my sponge bath

mmmmm....this O2 is great stuff!

How do I look? 
This mask totally distorts my face and eyes.

I've had enough lets get this care time started!

Weighing over 2 kilos!  Officially still 1.9kg

Mommy's little peanut

Getting a picture with Ducky was a little hard

My arm had to be out because of the IV for the antibiotics

The weatherman was wrong

We had predicted that the end of last week was the calm before the storm.  Well, we were waiting for a really bad storm this week and it seems we just got a heavy rain shower.  You are still doing well on the Si-pap and in fact your rate has dropped from 30 to 20 bpm and they are talking about taking it down to 10 bpm possibly tomorrow.  Your O2 was 45% at the beginning of the week and now it is down to 34%!  That is HUGE! 

The bad thing is they found a UTI...your 3rd.  You are on antibiotics for it.  At the beginning of the week you had to have two more blood transfusions...transfusions #18 and 19.  But thankfully you never seemed too sick from the UTI.  They will get another urine sample tomorrow to check if the antibiotics are working.  Next week they will check your bilirubin levels to see if treating the infection brought those levels down.  You are still looking yellow though - not good.  Next week they are talking about bringing you downstairs to get tested for urinary reflux.  This will be a HUGE deal because you have never left your room.  Not even for your penrose drain procedures or your PDA ligation..  This will be a big journey for you and Mommy will be very nervous, but they must think you are strong enough to make the trip.  Also, your nose keeps getting sores from the Si-pap; you only get good breathing from the mask and not the prongs and they usually rotate between the two to prevent skin breakdown.  They had to call in the wound team to check out your sores, but now they seem to be getting better.  Overall most of the "storm" seemed to blow over which is good because I wasn't able to go in as much as I wanted to to see you.  Your brothers weren't feeling too well at home.

Another exciting thing...I saw you "root" today!  It was time for your tube feeding and you had the paci in your mouth but it popped out and tumbled down your cheek.  As soon as you had lost the paci your little mouth rooted to the side for it!  Maybe you were just wanting the paci back in your mouth, but your belly was hungry so Mommy likes to think you were rooting for milk.  It brought Mommy a lot of joy to see you do that very basic reflex for most newborns, but it is something that we cannot take for granted with a little one like you.  It gave me hope for your future too.  And now I hope you can get off this Si-pap soon so we can try some non-nutritive breast-feeding.  (As long as I can keep this milk supply up...this pumping thing is really wearing on me and my volumes are going down)

We haven't seen you this awake with your mask on!

Loving your new bigger paci -
especially when it has drops of milk on it!

Gotta keep this thing in my mouth!  I like it!