Day 2- TCH update

Take a look at this cutie pie just days ago!















For our long memorial day weekend we went to a BBQ, hung out poolside, and played in the sink:) Rowan loved every minute!

Tuesday we tried to leave at noon for our monthly check up trip to Houston. Rowan threw up about 15minutes down the road so we turned around, bathed, switched out car seats, and tried again...

She threw up again about 2hrs in, but it was an easier clean up. She was also acting rather sleepy, but I just thought she was tired from the throwing up.

We checked into the hotel, met some friends for dinner, and Ro was just not herself- kinda fussy...

When we got back to the hotel, she was on fire!!! We gave her a bath and daddy went out to buy a thermometer because I looked at it while we were packing and distinctly thought, "why would we need that?!" I also thought, "why pack extra clothes? It's always a waste"... Lesson learned-

So 101.8 was the answer.

We checked out of the hotel and into the ER.

.... At 9:30p
and got a room at 2:30am...

3 sticks to get an IV and 4 more for more blood work = 7 total sticks so far with 3 nasty bruises.

No food due to the liver ultrasound (even though the US tech told us that because she has no gallbladder, there is no reason for her to be NPO).

The tech also said he couldn't even tell the liver he was looking at was transplanted!! He said he can usually always tell.

After speaking with our GI Drs, they believe this is just an infection which she very recently acquired. No rejection!
Rowan's liver numbers are still perfect! Praise God for that donor and our Perfect match!










Caught a smile playing with the iPad- yay! And check out my awesome sleeves:) compliments of mommy dearest so we don't have to wear hospital clothes.



And one more with our ultrasound friend.

But that's it... Today has been a not feeling well day.









Poor baby.

No more fever- yay! She's had a couple doses of antibiotics...

Currently, Ro's hemoglobin is 4.5. It should be around 10. (This is the amount of blood that carries oxygen around in your body.) They are thinking it is low due to the infection.... And Alllll the lab draws....

Because of the transplant, they are having to work very hard to get the appropriate blood match. And it is taking forever!!!
Seriously- since 12 last night and we are still waiting.... (it's after 3pm!)

If we have to be in the hospital, it feels really good to be here. We know the nurses and love our 12th floor.
God's timing is perfect, and we couldn't agree more this time.

We are praying after a couple days, we can go home. That's the plan unless she has a more serious infection. Currently we are just waiting for cultures to come back and identify the bug. And waiting for matched blood!

Thank you so much for all of your thoughts and prayers. We feel so blessed. Your support makes us feel uplifted and confident this will pass quickly.

We can't wait for our bouncing, constantly moving little smartie to be back to her old self again.

Maybe tomorrow I will have some happy girl photos...

6months Post-Transplant: back at the hospital

Quick update:

Rowan is being admitted to Texas Children's Hospital. She started to run a fever (101.3) and threw up a few times.
We are here in Houston for our monthly check and it just so happened this is the first time Rowan has been sick since her transplant.

(Congrats Ro---She is now six months post transplant!!!)

Labs came back and her hemoglobin is 5 (should be around 10)- getting a transfusion, being admitted.

I am behind in my blogging again and have some super cute pics from memorial day and Ro's first time in the pool!!!

I will post updates and photos tomorrow... Praying it's just a simple bug to kill.
What divine intervention...

Day 176- Tater Hater

Recap:
Thursday night Rowan was able to celebrate at another birthday party! She munched on black beans and tore up plates and decorations.




Sunday she enjoyed a large cup of potato soup from mcalisters.


It was so delicious we had more potato soup at Jason's deli the next day!



The high chair cover was in the wash and I completely forgot.... So, Rowan sat sans cover in the chair and it made me all nervy! I cleaned the seat with tons of hand sanitizer several times during lunch. (thank goodness our cover is all clean and ready to go- I can't handle that again)

We have been keeping our food log, skipping on yogurt, and staying away from fruits and veggies..... Until I had a conversation with someone who mentioned they were supposed to eat potatoes for their LOW potassium?!?
A quick check of the world wide web, and it was confirmed! Agh!! Potatoes are HIGH in potassium- great:/

I called to chat with our Houston dietician and she sent me a list of food for our "NO" list.
1. Potatoes
2. Avocados
3. Black beans
4. Mushrooms
Hahaha- if you follow the blog- all of Rowan's favorites!

Why didn't we get this list earlier?! It was all typed out with high, med, and low potassium foods. Seemed a lot more efficient than the "no fruits and veggies" message we got last Wednesday.

So, back to the store to get: Yogurt!



Yum!!!! The entire cup gone in 5minutes!

We also found some strawberry applesauce and it was a hit too!

The Prograf causes Rowan's potassium to be elevated, so that is why we need to limit the potassium in her diet- although it looks like we did a great job making it doubly high.

Today we went to Austin to see the damage and get labs drawn. It was another one stick day! Not even a cry!

Haven't received a phone call today, but you never know what that means... I will be calling again tomorrow for results.

So, enough with the food chatter.

Ro has more teeth!!!



You can kinda see the two big front ones here.... But just add another on each side of those big boys. Grand total is 4 up top and 2 down below.

Here's another toothy pic from tonight- great way to cool down after a hot walk.








And I thought this picture was funny only because I think I make this face:



Notice our cover... I'm smiling, guess it was too early and Rowan didn't really care. (chick fil-a after labs this morning)

Pulling out my crystal ball again, I suspect Rowan is going to be just about walking when her birthday comes in a few weeks. She is pulling up on everything!
There isn't a time of day (or night) when we go into her room and she's not standing up waiting for us!

She has been a great tag along on all of our adventures lately- good shopping buddy, and she even had a good time at the parade of homes.

She can make a cat sound when you ask (even though it doesn't sound like a meow), stick out her tongue, give high fives, wave, dance, shake her head no, and just continue to amaze us every day.

It's still unbelievable how blessed we are with such a spirited baby girl. Today I thought and prayed a lot about our angel donor- love you!

Day 168- Say What?!

Say What?!

SUPRISE!
Check out these beautiful pictures at JuJu's suprise birthday:







Monday we went to Austin for labs and a check up. It was a one stick day!

Rowan had a great time with Dr. Rangwalla:






We got a call later that afternoon letting us know Rowan's potassium was 6.6!

Too high! (3.5-5) Unfortunately, we had to wait a day for the pharmacy to get the kaxelate in stock. And, please can I brag? The child who once spit out alllll of her medicine, fought us, screamed, gagged, and threw it up took 30mL of the most disgusting chalky crap like it was no big deal!!! 30mL---crazy!!!
(currently we are waiting for it to come out the other end and take the potassium with it)
So proud of this baby!

Received another call from our Houston team to stop ursodil, and asprin. Are you serious?! And to decrease the Prograf dose to 2.5ml twice a day.

Ladies and gentleman: this means Rowan will only be taking ONE medication twice a day!!!

Say what?!?



We are now to keep a food diary of everything Ro eats; however, fruits and veggies have been eliminated as well as her very favorite yogurt to see if there is a food link to this high potassium level.

We will keep you updated on the progress- lab recheck is on Wednesday.

Day 160- Mother's Day and More

Proof that nearly anyone can use an iPhone:
Rowan made the last blog post:)
Seriously- all by herself.

Next thing you know, she will be getting an iPhone for her 2nd birthday- Ha!

Another early advancement:



Rowan is learning to drive:)







We have found a new food that she looooooves- mushrooms!









And- spinach artichoke dip!



Chance and I really only got a few bites of this...



Mother's Day Lovin on my Baby




More crawling...












Annnnd- The top two teeth have finally come in! Happy Mother's Day to all of us! Thank goodness because Ro's bloody gums were making me feel so bad for her.
It's hard to get pictures, but that will be my next mission.




Love the empty medicine bottle as a bath toy:)

The very best mother's day present was holding my sweet, precious Rowan. We were thinking of you angel donor and your family too because they probably had a hard time this weekend without you. God- wrap your arms around them and let them feel your comfort. Thank you again for the gift of life.

Q qxqq'
-

Day 158- Rock Climber

Preparing to rock climb later in life:

This little girl is a dare devil. She will try to jump off the couch, chairs, bed- anything... You always have to be watching!


Everyone says, "They grow up so quickly."
I am finding this to be more true every day.

Before Rowan's transplant, it seemed as though each day was an eternity. Medicine all the time, fussing, feeding, going outside because it was the only way to make her stop crying, hospital admissions, lab draws, procedural testing, uncertainty, picc lines, tube feeding, TPN, yellow, getting worse, my poor sick baby, pain. THAT seemed like years.

Healthy, happy, post-transplant Rowan has changed our lives yet again. Time is literally flying. She will be one year old next month! (yes- party preparations have begun).

Prograf is so easy to give now, sometimes I can't even remember at the end of the day if she got her dose--- (no need to panic: the alarm is set EVERY day and she NEVER misses a dose (except once when the Prograf busted all over the floor and we had to wait for our refill)).

So only ONE missed dose ever:)

What I am getting at is the whole ordeal is so easy now, it's becoming routine, and it's hard to recall the exact details of the morning medicine event at the end of our busy days.

On another note: the top two teeth have finally started to really come through, but those sharp suckers are still wrecking havoc. Rowan's gums are practically bleeding. Orajel to the rescue--

Day 157- turtle races and daddy day care

Saturday we went to a Turtle Festival: a first for everyone in our family.







Petting zoo:









I think we made a few folks a little jelly: there really weren't any people allowed inside the cage.
The owner of the animals must have had her eye on our Robaby because she asked if Rowan wanted to come in and play :) so we took her up on the offer.




BBQ afterwards- yum!


Momma went to work the next day and look at how happy Rowan was to see me go---








Dad must be too much fun!


Monday:
Check out how exciting it is to stand up in your carseat:






Gooooood times! So in love with this girl-