Birthday Baby!!!

Happy 1st Birthday Miss Rowan Ruth!!!

Today started off sleepy. With all of our trauma yesterday, it took a while to get going...






Goodmorning Ro baby!






Let the presents begin...
























Cupcakes!!!







Around 2 she finally changed into her birthday outfit!












Check my shades!!! Thanks Brenda and Bonnie!












Trying to escape!
























Eating some cupcakes:)
The icing wasn't a hit, but the chocolate cake was delish!

Rowan also ate potato soup for lunch- yum! A birthday splurge!

The nurses and Rowan's icu md all sang happy birthday. Sarah and Jake came to visit and Ro received gifts and balloons by delivery!




We have had orders to go to the 12th floor all day, but for whatever reason we didn't get a bed. She has to stay in picu overnight:( I was really hoping to stay with her tonight...

Medically, she's improving, but very slowly. Today they said it could take 2weeks for the steroids to do their job. Her hemoglobin continues to fluctuate, so her body is still breaking down the red blood cells- just not as quickly! Tonight she's down to 5.3- so more blood...

What a year it's been for this little girl! She is the love of our lives!
And here today all thanks to our angel donor-

May God continue to richly bless us again this next year!

PICC, please!

Rowan wasn't allowed to have anything to eat after 4am for her PICC line placement this morning under anesthesia.

Loooooooooong story short:

She didn't eat until 3pm and finally got her PICC line around 5pm using local anesthetic.

It was a horribly fussy day until she got to eat.

I think I could feel fire coming from my mouth and ears at some points this morning, but now that our PICC is in place, all is right with the world!

Thanks to our fabulous nurses and icu team advocating for us!

Mary from child life came by with some early birthday gifts...
And we have some surprise pictures for tomorrow's festivities.

In just a few hours our angel will be ONE!

Rowan's hemoglobin has been 5-5.8 today. More blood tonight.

They say it could take up to a week for the steroids to work.

Lots of pictures tomorrow- we will have a celebration!!!

Thanks, Steroids!

The large dose of steroids seems to be working.

Rowan's body has stopped attacking and destroying her red blood cells.

They have set a goal of 6 for her hemoglobin. She was 6.2-6.9 all day today.

After we make sure her body is not going to start attacking again, then her new goal will be higher.

The next step is to wean down on the steroids and see if her body continues with it's good behavior.

We may be on a little rollercoaster when that happens, but hopefully we have a smooth transition. If not, too complicated for the blog right now;)

Gosh, aren't autoimmune issues fun?!

She has been so much more awake and active today- yay!



Gatorade!






Big yawn






No more oxygen today.
No more antibiotics.

So far since Tuesday she has been poked about 25 times :/

Because they still need blood, and it is not easy to get it from her, tomorrow they are going to place a PICC line.

I have been asking for one since DAY 1- but what do I know?
I'm only the mom, well adversed in icu care because I'm an icu nurse, who happens to understand how this rodeo works, but I guess that's not enough. Plus I know my Ro baby. Anyway- she will get the picc tomorrow and our lives will be better:)

In all of the hullabaloo I haven't mentioned her liver!
It's seriously a rock star!

Her liver numbers couldn't be better!
Amen!

What's Going On?

Saturday Rowan looked less than stellar. I was on the phone all day with Houston (a new person there) trying to decide what to do. Her color was off, throwing up, drowsy, and just not herself.

We could have taken her to Austin, but Chance and I felt like that would be reinventing the wheel seeing as how we just left Houston and were home for just nearly 24hrs.

When Tylenol did not help her fever, we opted to drive to Houston.

It was a hard trip. Rowan was so sick again. The normally 3 1/2 hr trip took just 2 1/2. (we were going a little fast. And we even got pulled over. But no ticket!)

As soon as we stepped foot in the er, they whisked Ro to the trauma room. The nurses and physicians swarmed on her. She looked so bad. They started two iv's so fast (each one on the first try), we were in shock.... And we all know how hard she is to stick...

She looked like death, literally.

After the dust settled, her hemoglobin, which was 9.5 when we left, was 3.

She was admitted to the PICU in the wee hours of the morning.






(so, so, so sick)

The issue we had the previous admission was getting blood that was cross-matched appropriately. It took 20hrs if you recall then because Rowan has built up antibodies.

[In a basic nutshell it means that Rowan's body will attack the blood she receives due to these antibodies unless it is matched just right.]

She is also Coombs positive for you med folks.

So- in just the day we were gone Rowan had built up these antibodies to the blood that they had just given her when we were last in the hospital! The blood that she received today had to be air flighted in from Galveston.

And even still her hemoglobin was barely increasing today.

Most of our physicians were stumped until we spoke with our hematology mds this afternoon.

They have diagnosed her with autoimmune hemolytic anemia.

For some reason, in which they are not sure of right now, Rowan's body has basically decided to turn and fight her own red blood cells. Only her red blood cells are being affected- both nature and young cells. It could be from a possible infection that brought on this turn of events, but they said they have also seen a small group of liver transplant patients develop this autoimmune disorder.

This could be a temporary or chronic problem.

We will not know until we see how she responds to treatment.
She will be getting IV steroids to stop her body from breaking down (lysing or killing) these red blood cells.

Hopefully this works because it is just too complicated to describe the other options in the blog.

Chance and I feel all of the love you guys have shown! We have such peace about this situation, and we know the Lord is carrying us through.

We have a double miracle baby- she never ceases to amaze us.

Tomorrow will bring all new physicians since it's Monday... Excited to learn more and see our girl make some progress!







(lovin' her oral care)

Back to Houston

Rowan was admitted to the PICU at Texas Children's Hospital with a hemoglobin of 3...

Prayers for our sweet angel baby

TCH- Day 4: home!

Sorry I didn't post sooner:
We're home!

We left Houston Friday afternoon.

Today, Saturday, Rowan has been throwing up and running a low grade fever.

I've called Houston 3times...

Keep you posted on our next moves...

Thanks for all the thoughts and prayers! We love you all so much and are so thankful for our friends and most importantly family!





Still a little puny- breakfast Friday...




Makin a break for it in the elevator!

IV update

Called in "the man"- got it in one stick.

Amen

Day 3- TCH update

Rowan had a pretty good day- until now, so I have to be quick with my post.

Her hemoglobin came up to 6 after her first round of blood and 7.5 after her second round.

But we lost our only iv and have more blood and antibiotics to go.
Boooooo.

4sticks again so far today, the last two being extremely traumatic:(

No iv and no news yet on how we are going to get one- so it looks like we are going to have a long night.

On the bright side her cultures are still negative, and they think it's a virus.










Lots of poop due to our antibiotic makes for lots of clothes changes and washing today.

Praying everything works out tonight... I wish it could be me instead her going through the pain.

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...