Miscellaneous

Taking a real bath.





Eating delicious cherries.




Reading books before bed.




Cow safari.

Savoring our days outside of the hospital!

Sometimes it gets a little depressing thinking about how many weeks Rowan has been in the hospital this month.... But, it's always cool inside there-
what a way to beat the heat this summer. (there's some sarcasm in there)

Lovenox shots are going really well. I've gotten so good, she doesn't cry anymore. And that's a great thing, since she's still getting poked twice a day!

And Rowan is a whole milk drinker! Yay! Maybe with all the money we save not buying formula, we can pay for her college education :)

Waiting for tuesday's appointment...

Heavenly

After the craziness, our lives got better at 9pm.

Rowan was admitted to our favorite 12th floor as I mentioned.

The rituximab treatment was
started at 3:30am. (last week during the night, we were up every hour or two).

Thank goodness we actually got some sleep this time. And this was really all thanks to our nurse.

We braved the day with the help of our cocktail drugs again.

And as soon as the treatment was over we checked out!

Rowan did superb again during the infusion, and she slept the entire way back home!!!

After it was all said and done, we pulled into the driveway at 1am.

The plan is to meet with another hematologist on tuesday who will become our "primary" hematology dr. After that person reviews all of rowan's labs and current situation, then the determination will be made for another round of treatment or not.

Kinda frustrating we didn't have a solid plan to begin with, but this should put us on the right track and answer a lot of questions we have.

Ro's numbers continue to look better, just not quite where they need to be.

She has had us all walking with her all over the house today. I'm sure soon she won't need our fingers, and then we will be chasing her :O Agh!!!

Hellacious Update

We checked in at TCH.
12th floor- yippy

If anyone wants to stay in a really nice hotel room tonight across from the hospital- let me know ;)

(There may be crumbs left in one of the beds)

Hopefully, we can still get out of here tomorrow!!!


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Hellacious

Is that even a word?

Let's just say it's definitely been an ordeal this Houston journey.

We left Wednesday at 2:30pm...
...And checked in at the hotel in Houston at 8:15pm

Munchkin wasn't really diggin the car ride. It was so much better outside of the car seat- so we stopped 3 times to participate in activities like a park, outdoor shopping area, etc...

Then the unthinkable. 610 closed due to a wreck. Every, yes e-v-e-r-y lane closed making it a huge jam to get off at a teeny tiny, po dunk, outskirts exit.

Of course we got stuck on a bridge when the pile up happened and we were literally trapped! A screaming child, moving about 10 feet per hour---seriously...

So several Oreos, toys, you name it's, and TWO HOURS later, I crossed the grass to get off onto the access road.
Best. Decision. Of. My. Life. so far...My heart was racing, and I'm still expecting my ticket soon;)
But what are SUV's for anyway?

I had contemplated coming with just me and Ro. But SO thankful Devin was able to join me!!!

I had taken pictures of the meltdown, but they were erased accidentally. And it's probably better that way--- They were UGLY.

Instead of packing the pack n play for Ro to sleep in, I thought: "it's too big, it's a pain to lug around, she'll be fine sleeping in the big girl bed with us..."

I should have known better. We do better apart. She woke up every two hours.

This morning we couldn't get ready fast enough. Rowan wanted to get out of the hotel and get moving, so we did.
They called to say no rooms were available early, so we went to the butterfly museum.

No people were there, but I still didn't let her touch anything due to the immune system.
Then, Ro decided she was tired, so she fussed until we got back in the car.

At least we got a few good pictures:























Praise God she decided to nap in the car while we drove around for an hour!

We almost got sideswiped, twice.

When she woke up, we ate lunch. Still no phone call from the hospital...

Afterwards, we tried to shop, but it was way too hot. We were all sweating.

So back in the car for another gas wasting adventure because we couldn't think of anything to do that would be safe for Ro while we waited.

We washed bottles in a bathroom at Starbucks!

When 2pm came around, I called the hospital. They said no openings, and really no discharges in sight.

Are. You. Serious?!

So we checked in to yet another hotel to take a nap and change the explosion that Ro created.
It was horrifically smelly. A sacrificial scarf and towel were used in the clean up.
On the bright side, Ro felt so much better afterwards:)

So, it's after 6pm.... And we're still waiting.
They'll probably call around 1am to tell us there's a room available.

We still have dinner left tonight, so hopefully no more fiascos.


- Posted using BlogPress from my iPhone

Summer!

Since we have been home, having a routine is wonderful for this loco mama.

Rowan had no problems returning to her own bed and room after practically being attached at my hip for 5weeks.

She usually heads to bed around 9ish (after meds) and wakes up with the roosters at 6AM. (waking up once in between for a snack of course--- thankfully, she's not as ravenous since the decrease in steroids, so her newborn eating patterns have again disappeared)

A car was purchased since we spent so much time in it at the hospital....
And now we virtually re-live the hallways there in our own house!






We've been taking it easy staying inside where it's cool, staying away from people, but we couldn't take it anymore. We decided to take Ro on a trail near our house. Check out our super neat fan to keep baby cool.





We had a great time. Ro thought the trip was just ok.

You can't have summer without a pool!








Rowan loves her new blow up pool complete with palm tree, side flowers, and inflatable slide Ro appropriately uses as a lounger:)
The only complaint, is Ro can't get too wet. Her PICC line must stay dry and intact so germs don't get to her and cause an infection. After many past attempts with plastic wrap, press n seal, tapes, etc- I've found the good ol' diaper is the winner!




Remember just last month:



Beautiful angel baby with her sweet neck.


We were able to tie on this hat.

Now:


I don't think straps are fitting underneath there right now:/
Poor baby.
But she's still just as cute as a button.

Tomorrow we head to Houston for hopefully Ro's final rituximab treatment. She'll be admitted on Wednesday and if all goes well, discharged on Thursday or Friday.

God is Good- All the time.

Homeward Bound

Thursday morning we were all geared up and ready to Go!
So were our GI drs... they showed up at 0830 to discharge us.
We waited until 3pm for our hematology drs, but they never arrived. I was really hoping to speak with them, as we were there for a hematology issue, but regardless it was better to be discharged. So we settled for the update via GI.

Her hemoglobin was 10.5 and reticulocytes were 9! Getting better:)
AND even better: they decreased the prednisone!!

Bless sweet RoBaby's heart, her coordinator said she was "unrecognizable" due to her fat face.
Hopefully as we decrease the prednisone, fat face will decrease too...
We increased her amlodipine (blood pressure medicine) dose because her bp is still too high. And again- decrease the prednisone, decrease this med and eventually she won't need it anymore.

We headed to the hotel listening to a babbling Ro the whole way. She "talked" so much, she wouldn't go to sleep!

I threw our yacker (is that a word?) in between her momma and daddy and we enjoyed the king size bed- until 5am...

When we all woke up in pee bed:/
Rowan eats so much still due to her increased appetite (prednisone) that I've had to dilute all of her formula by half. So- she's been drinking a lot of extra water... Which ended up on the sheets, pjs, and the comforter!
Figures- the first time she sleeps with us...

Today daddy took Ro for follow up labs today. Her hemoglobin today was 11 and the retic 8! Woo Hoo!

The car ride home was awesome! She slept nearly the entire trip. Then woke up for a snack:



When we got home she celebrated with some Oreos:






And then we went to walk it off:


Girlfriend has been SO happy! Life is wonderful when you feel good.

Thank you so very much for your thoughts and prayers! Without support we wouldn't have survived.

We go back to Houston tuesday night and will be readmitted on Wednesday for the final (I hope) rituximab treatment.

Then discharged on Thursday again if everything goes well.

Until then, home sweet HOME!

Back to TCH for Rituximab dose 3

The past few days have been superb! We are really loving hotel life and all of the quiet it brings compared to the hospital.





4th of July was low key and we celebrated by eating strawberries! Fireworks next year:)












On the hotel's blanket- oops... But oh so good:)

























Even on the butt!






GiGi and Pops were here and we also enjoyed some Smashburgers!

Today, Wednesday, we ate breakfast with grandma j and juju. Then, we got the call at 0945 to head up to the hospital for admission. Rowan is receiving her rituximab treatment today.

She has not been a very happy camper to be back.

All of our sweet nurse friends have been here to welcome us back, but Ro could care less.

She's whined and cried every time someone walks into the room.

We've started the rituximab at 3pm and they are expecting 17hours for this infusion!

Update tonight (excuse the different tenses in the same post!):
Praise the Lord for benadryl, tylenol, and hydrocortisone! After these wonder drugs she napped a lot, woke up to eat and play for a bit... Then back to the land of nod.

Fingers crossed, we are discharged tomorrow! The treatment is going well so far...

We have to get out- tomorrow is daddy's birthday and we need to give him the gifts Ro picked out!

Hotel Life

Saturday was Rowan's first real day out of the hospital. She slept so well at the hotel uninterrupted- and we did too!


(fun times in the pack n play- Ha)


We started out the day with breakfast in the lobby and a nice walk thru the neighborhood.

Then after medications we strolled over to the galleria.

Bad idea- too many people.

After lunch and a nap we headed out to the indoor butterfly exhibit.


Another Bad idea- too many people. (it was hot outside!)

We may have overdone it a bit, because we ALL took a 2hour nap when we got back to the hotel.

However, dinner was a success!
We ate on the outdoor patio at Chuy's. Yum! The weather was actually very perfect too.

Poor angel girl is doing her best taking medicine. It's a large volume and it tastes horrible- but she's a trooper!

The lovenox shots are just ok.
Little Ro is so smart and knows when they're coming, so she already starts crying...
Her poor legs look like pin cushions:(

Sunday was spent doing more sleeping.
Bless her heart, baby is catching up on all of her missed sleep.

Hope everyone has a fabulous 4th of July! Be safe!

Freeeeeedom

We escaped!

Home sweet hotel is fabulous!

Getting all of Rowan's medications was an ordeal-- but that's taken care of now, until we need a refill.

Med Count: remember she onlytook prograf before being admitted
1. Prograf
2. Prednisone
3. Amlodipine
4. Lovenox
5. Prevacid
6. Fluconizole
7. Folic Acid

She wasn't quite as happy to leave the hospital as I had imagined.... But we did wake her up from napping to go-











Our random junk cart... I hate coming home with stuff we don't need/want... It feels so wasteful.






It was all smiles at our 3pm celebratory lunch/dinner to avoid crowds. Rowan is the most immune supressed she has been in her life, so it's very important she's not around large crowds or anyone sick.






Some "essentials" for our temporary pad:)






Wowza! Check out that double chin! Those steroids have gone straight to her face! Many people comment: oh look at those cheeks! We've never heard that before now.







A real live bath! All taped and bandaged to protect our PICC and insuflon in her leg.
Thank goodness!!! She was starting to smell rather unsavory.

However, after the bath, Rowan pulled out her insuflon catheter in her leg- again... So we had to poke her for the lovenox tonight.
On the positive side, the needle and amount of medication are much smaller than that in the hospital.
Maybe tomorrow we can find the numbing spray/cream....
I have a feeling she's going to continue pulling out the catheter:/

Thank you so much for your prayers and love!!! We feel so fortunate to have so much love and support!

Superwoman

You know she's feeling better when Rowan:
1. Jumps off the couch and hits her head... Oops! But all is well

2. Pulls out her lovenox catheter with a smile on her face

3. Looks like this:



Chocolate face:)

Thursday was the day for everything changes:
PICC line dressing change.
Insuflon catheter change (thanks Ro)
Blue cap change on her PICC ports
And checking to see if we can change her off contact isolation by swabbing her nose (we had a contaminated specimen draw back in the transplant days that left us on the isolation for no reason. After the swab results come back- we should be free- of contact isolation)

We're packing up as we speak, and heading to home sweet hotel