Sprinting a marathon is not advisable

As a runner you would NEVER sprint during a marathon unless the end is in sight, but that is how I feel.  From morning till evening life is a sprint right now.  Wake up, call the hospital and get an update, pump, try to get the older 3 ready, settle an argument, get myself ready,  pack (or eat) lunches, discourage the yelling, encourage the sharing, pump, take them to a friend's house, go to the hospital,  rush to make sure the nurse hasn't started care time without me, help with care time, talk with a doctor, nurse, NNP, RT and/or researcher and ask 100 questions to try to understand everything...then pump, kangaroo, help with the next care time, rush to pick up kids and I'm probably running late despite best efforts to be on time, take the kids home, pump, help kids finish the rest of the day, pump, oh wait it is 9pm have I haven't eaten dinner yet...wait - did I eat lunch?  I think I ate breakfast...well at least I know the kids ate 3 square meals...  Ugh is it time to pump again, really, again?!  I hate this pumping thing!  Then try to communicate how the day went with Joe, try to spend time together, and then check my e-mail and post a status update...now it is past midnight and I maybe have 5 or 6 hours of sleep before I get up and do it all again.  And this does not include days when I attempt to homeschool, attempt to do laundry or dishes or cleaning. 

The end is not in sight, not the end of our hospital stay and certainly not the end of our health journey with you, Joshua.  I am tired, weary, and yet those words don't even describe how I am really feeling.  NOW add a sick little croupy Jeremiah on top of that and a little David who has a bad cold/cough and even the days when I'm stuck at home (like today) feel like a sprint and I didn't even get to see you!  That makes Mommy sad.  Don't your sister and brothers know that they are supposed to stay healthy this fall/winter so I can visit you? 

I need to learn some pace during this long marathon race.  You'd think I'd know how to do that when I used to be able to run 6min, 7min, or 8min mile pace in my sleep whenever I needed to, but yet in this race it is a lot harder to learn pace.  Every day seems like race day; when is there time to practice and learn pace???  I feel like I've missed a lot of opportunities with my kids at home and you at the hospital as Daddy and I just try to keep our heads above the water.  Maybe if I could just pace myself I could work on being in the moment more instead of thoughts racing to what needs to be done next.  Praying for the energy and discipline to learn pace.  Because sprinting this marathon just makes me want to hide in a port-a-potty and never come back out ;)

Wait, what was that???

So I went in today to kangaroo and care for you.  Daddy was going to meet me at the hospital after work.  He had not seen you for a couple days.  Sunday we did not come in together so Jeremiah could have a nap.  I just went in.  Then Monday Daddy was travelling for work and got home late.  So when he got in today he sat there in the nurse's chair talking to me, you made a gurgley baby sound and all of a sudden his eyes perked up and he straightened and said, "Wait, what was that?!  Was that Joshua?"  I had totally forgotten that Daddy had not heard you yet!  He had seen the video that I took of you crying, but he had not heard you with his own ears.  He was so excited to hear you little Joshua!  To hear your baby sounds is such a joy...then we heard some sneezes and finally at care time Daddy heard your sweet, sweet cries.  What a joy to experience this "first" again as Daddy heard you for the first time.  Thank you Lord for answering this prayer to hear our son cry.

Praise be to God,
who has not rejected my prayer
or withheld his love from me!
---Psalm 66:20

I've waited two months for this!!!

HAPPY TWO MONTH BIRTHDAY!!!

I was nervous for you last night on Si-Pap and really wanted to go in and give you a pep-talk and hold you.  I wanted to be there in case the Si-Pap didn't work out.  I tried to go to sleep, but couldn't.  So I just called in and got updates periodically.  You were doing so well with our nurse Chris.  She put a farrel bag on your feeding tube so your belly can get rid of the excess gas that was accumulating last night.  She said you were working really hard at breathing.   Your belly was retracting in around your ribs too much, but since your O2 was in the parameters that the Dr. gave - you are still going on the Si-pap!

So finally I got up and  went in early before church to hold you and then I went in later in the afternoon/early evening to hold you again.  Overall your respiratory functions have been doing really well.  Before church I held you and I heard little squeaks as you moved around.  Then while you were on me you sneezed about 3 times in a row just like your daddy.  Then they had to prick your heal to draw some labs and you cried.  I didn't like seeing you in pain, but I have waited so long for this!  My throat choked up!  You cried, FINALLY!  You expressed yourself and you can be heard!  Praise the Lord!

Daddy has been saying that the past few days are the calm before the storm.  We don't know what storm is coming, but both Daddy and I feel that it is inevitable that something new will be wrong...SO...today we found out your bilirubin spiked up from ~6 to ~10.  You are on a medication to bring down your direct bili, so this doesn't really make any sense.  You've been off of the TPN for a while, so with this spike in your levels they are ordering lots of tests and ultrasounds.  They are looking for infections, obstructions in your GI tract, etc.  We'll know more tomorrow.  I'm nervous about this! 

All snuggled in, but look how yellow you look!

Your temp went really low after your belly ultrasound
to look at your liver, kidneys and GI tract.
You had your outfit, a receiving blanket,
a fleece sleepsack, two heated blankets,
and a hat and you were still cold!  Good thing you finally
regulated your temp before they got the isolette back out!

Also a couple bits of information that the NNP and doctors have been neglecting to tell us...you still have a heart murmur, but in a different part of the heart.  You have a hernia in your scrotum that will need to be surgically repaired at some point probably around discharge.  Thanks for the full disclosure people!!!  What else is there that we don't know?!

SiPap Take 2

We got in today and heard some big news!  They are going to try you on SiPap today.  (Your first try with SiPap was about a month and a half ago)  We were so glad we were able to be there with you.  Thankful for another God moment.  We did not have anyone to watch your sibs today and I put a request out on Facebook.  At 10:00pm last night Daddy's friend from college (whom we hadn't talked to in a few years) offered to come to the house with his family to watch the kids so we could come in and see you.  So Abby, David, and Jeremiah had new friends to play with and we got to be there for your big day. 

Daddy kangaroo'd you to set you up for your best possible extubation.  Your sats were great.  First they put the "helmet" and nasal prongs on you to test if you'd tolerate the weird new contraption on your head.  Then after 30 minutes the NNP came in to extubate you. 

Getting you situated to kangaroo

Keeping you warm in Mommy's robe

Doing great on your vent settings...ready to come off!!!

Hopefully your last suction on the vent...
while Daddy helped contain you.

Last time we'll see your face for a while

No time for yawns - you have some hard work to do very soon!

Fitting the Si-Pap straps on your head

With the Si-Pap machine attached, but you still have the vent in.
Testing it out to see if you'll tolerate the nasal prongs.

You did well according to our nurse Nikki.  She said it went smoothly compared to other kids.  All you have to do now is figure out how to breathe with this new pressure and set-up.  Mommy and Daddy stayed in the room the whole time to see the extubation and put our hand on you and give you a pep talk after the NNP, respiratory therapist and Nikki were done.  We really want you to succeed on this 2nd trial of SiPap.  Your lungs need to start breathing without all of that forced pressure of the ventilator.  They won't let us hold you for a while until you get it figured out and show success...or don't figure it out and need to be re-intubated.

It looks so uncomfortable :( 

update......
called in at 7pm - you had been doing great, but after the 6pm feed you are desatting and bradying.  She thinks it is because your belly can't vent while the milk is going in and you are getting too much air in your tummy.  Hopefully they can figure something out before they decide to reintubate you!

A new way to weigh!

Along with the new crib comes a new way to weigh you.  The crib is not high tech like the isolette that had a built in scale.  So today you had to get moved from your crib and placed onto a portable scale.  Mommy and Daddy were there to watch and help with your care time.

Getting the tubing situated.

Ready, set, go...

Onto the portable scale

Get all the tubing off the scale.



And the verdict is 1890g

Back in bed - fixing your smooshed ear

Cleaning your mouth during care time

Looking a little yellow today

Eye care

You look like a plastic doll to me in this photo

Getting your inhaled steroid

Cute outfit from Grandma Weide

Joshua's new hat

I found this super cute hat on Etsy and couldn't help but buy it for you.  You look so cute and there is room to grow.

 

Bye, Bye Isolette...Hello Big Boy Crib!

Hello, hello Joshua!

Well you are officially 1800g now...about 4lbs and you have been regulating your temperature well SO...you got to switch to a big boy crib today!  I asked the nurse if she could wait to change it until I got in there.  I'm so happy I got to be there for this milestone.  They will keep a close eye on you to make sure you aren't losing weight by burning too many calories keeping yourself warm.

Joshua's Giraffe...Anyone want to sing the Raffi song with me?

Evy taking him out of the isolette to switch the beds out.
Out with the old...

In with the new...a crib!

How do you like your new bed, Joshua?

They also changed your rate to 20 bpm (18INSP, 7PEEP (total press 25), 35% O2) and you have done GREAT!  Most of your sats are in the 90s.  They just decided to change your rate to see how you'd do - the blood gas did not warrant the change but we are pleased to see you doing so well!  Our nurse Evy joked that maybe you were just claustrophobic in your old bed and that you love your new open bed, so you're breathing much easier :)

From Abby's point of view

Occupying the boys while we visit.
The Sibling Clubhouse is closed from 12-1pm

Aunt Elizabeth and Uncle Mike got there right after your bed change.  You have grown and changed so much since they saw you back on Sept. 1.  Our nurse today said if our visitors don't touch Joshua or touch anything in the room they don't have to gown and glove up, so that was nice to hear.

Talking in quiet whispers about your progress.



Abby occupied herself by taking lots of photos.

Uncle Mike from Abby's POV

MRSA

I called for an update this morning and got hit again with something we did not see coming.  You tested positive for MRSA (Methicillin-resistant Staphylococcus aureus).  You will be put in isolation for the rest of your stay.

I had always wondered why some rooms had red signs on the door and people needed to wear yellow gowns and gloves upon entering.  What could be wrong with such a baby that even their parents have to wear gowns and gloves to see their baby?!  I asked a nurse about it one day after about a month of being here.  MRSA.

Now we are one of the rooms with the red sign, the big bin of yellow gowns...what I feel like is a "scarlet letter" of sorts.  Stay away from this room - this baby is carrying a bad bacteria.  Fortunately it does not effect us as mom and dad as much as I had feared.  They still want us to kangaroo you.  The skin to skin contact benefits outweigh the risks.  And because we can kangaroo, our nurse said it is contradictory to wear the gloves and gowns because we've already touched your skin.  I asked if it is risky to us since we may or may not have MRSA colonized on us because we touch you.  They said that since we are healthy and don't have compromised immune systems there should be nothing to worry about.  They mainly want to protect the other babies in the NICU from MRSA; especially the tiny micro-preemies like you used to be.  Hopefully it will be nothing more than a nuisance, but in the back of my mind there are fears that I wish were not there.  We pray that your body/blood does not get invaded with this bad MRSA bacteria. 

We will never know how you got infected.  (I have some guilty suspicions) Somehow they found it in your ET tube.  The NNP said it could be anywhere - on your medical equipment or on someone's hands; it is found many places in the community too.  But it is very dangerous to people with compromised immune systems so they will be watching you more closely from now on


You just want to make sure you have everything checked off the list before you get discharged don't you...what's next, ROP?

Still Kangaroooooo'n

Wide-eyed and adorable!

Mom and Dad helping with your care times

 

What is that tube thing in front of my face?!

Looking all around!

 

Hi Momma!

This is how we do hand containment during care times.

Or we have to contain your hands

Stop pulling at your tubes!

Your crooked little pinky

Get this off my face!

PS - Mommy was told to stop bringing her milk in for a while, because my two big bins in the milk room are full.  Guess it is really good that we got the deep freezer!