Poop and wagons and other things

I have really really really missed this boy today.

Snow & ice in Dallas prevented him from visiting Ellie at the hospital today.

He did visit last night, however, and was a very sweet boy.

He's been busy though - riding on suitcases, making valentine crafts, making valentine's cookies, & doing laundry.

I can hardly wait to get my hands on him tomorrow.

And precious Ellie Girl -

an update:

The night was long.  And rough.  And seemed endless and yet way too fast.

But we survived thanks to a team of great nurses (& somebody somewhere praying.)

After about an hour of wake time this morning, she looked like this:

Her face and especially that left eye was so swollen.  We think it was due to iv fluids & also surgical tape.

She is looking much better now.

The day got a bit better. 

They took her off her iv once she began to nurse a little better.

She is eating about every 2-2.5 hours right now but still doesn't have her regular appetite.  I am also pumping to maintain my supply.  I am just so relieved to be able to nurse her again.  I did notice cuts that had scabbed on me today and realized it was due to her fiberglass cast cutting me while feeding her.  That cast is sharp!  R also has a cut on his hand.

The doctor is pleased with the incision site - swelling has decreased there.

She actually stayed awake long enough today to do some playing and cooing and even escaped for a walk in the wagon.  I will be cleaning out our wagon when I get home as it makes for a perfect "stroller."

(With spica, she won't fit in a regular stroller.)

Brenda, our pt, visited today & brought by a mom for me to meet.  I was so glad to meet and visit with her - she has several children but two have unrelated medical conditions (sound familiar???)  Her son has AMC like Ellie.  Both of her kids have needed spica casts so she was full of tips, stories, and sympathy.  

I am getting more comfortable holding Ellie although it is difficult - she weighs an extra 10 pounds (makes her just 4 pounds smaller than Will - at age 3.5!)  And it's not like she is just a "big baby" suddenly - it's hard fiberglass cast & not moldable... not to mention her pain considering she has three incision sites (hip, both feet)  It is a very awkward & requires caution when picking her up.

Feeding is getting easier as each figure this thing out but is still a challenge.  This morning, we both became frustrated at burping - it's hard to burp a baby when they are in a cast that goes just about 1.5 inches short of their neck in the back.  

Diapering remains a challenge.  We thought we had a good system yesterday but we changed it up tonight after she has had two leaks down her cast leg & out her toes onto R's pants.  It's very frustrating to not be able to wipe urine off of your baby's leg.  We were using waterproof tape, a maxi pad (never imagined needing that quite so soon for my baby girl), & 1 diaper.  

Now, we are trying two different sized diapers, waterproof tape, & the maxi pad.  

Our nurses have assured me that leaks are common.  (And we had followed exact instructions earlier today - it just happens sometimes & at the time, she was still getting excess iv fluids.)

If it gets too wet or gets poop too far inside to clean, we would have to come back to the hospital, have her put under anesthesia again, and have the cast removed & a new one put on.

That is good motivation to find the perfect diapering system & spend the extra time doing it exactly right every time.

The diapering process still requires 2 people but hopefully won't when she isn't in so much pain.

Diapers must be changed ever 2 hours in the day - I'm going to try for 3 hours tonight.

We have been waiting to head home until she had her first poop.  I have been so nervous about that & knew I wanted nurses around in an controlled environment for the first time (otherwise, my luck, it would have been on the airplane on Friday- yikes!)

We gave her a suppository tonight and it finally worked.  Bless her heart.

Thankfully, it was a fairly clean experience although we did have to redo some of her incision tape (the incision is in the groin area so no avoiding it getting dirty but adds an additional step to the process.)

We are doing positioning every 2 hours or so.  

Sleep has been difficult as we are having a hard time getting her comfortable & then we have to change her position.  She sleeps really good on my chest, which I enjoy, of course, but also don't want to have to do every nap time or all night long.  At the moment, I may have the perfect position for her involving a boppy, a pillow, and a blanket.  Seems to be working so far.

We also got her new special spica car seat and learned how to use that today.  Not fun.

I've only cried a few times today.  Scottish Rite is such a safe place - every other parent here has something going on with their kiddo so no one stares or comments or judges. 

I'm dreading the airport & airplane in a few days - 1 kid in prosthetic legs, 1 in a body cast.  

I wish I were quick witted and sarcastic.  Instead, I'm a crier.

My tears today have mostly been about either missing Will or feeling so inadequate and overwhelmed to take care of Ellie.  It's just such a learning process.  I am feeling much better tonight than I did this morning.  I'm adjusting to the cast.  It's just that it changes. every. single. thing.  

everything.

burping, feeding, sleeping, diapering, holding, nursing, cuddling, playing, bathing (not), everything.

Tomorrow, now that she has pooped, we plan on taking her back to the condo for a night.  

Thank you for continuing to pray for us as we adjust to yet a "new normal."

It's just a lot right now.

I don't think reality has fully hit us as we are in hospital world still.  I think reality will hit when we leave tomorrow and realize just how much is different.

Please pray for her pain to decrease, her swelling to disappear, healing of her incision sites, and return of her appetite.