Day 32- New Year's Eve

What a way to spend the last day of 2010! Rowan was off of oxygen all night last night. One step closer to leaving the hospital.

If they can make something good- might as well make it that much better....
Yesterday Rowan was off of tube feedings for 4hours during the day. They then increased the rate during the remaining 20hours to 40ml/hr. So of course today we HAD to try leaving her off for 6hours and then consequently increasing the rate to 45ml/hr. No go- she's thrown up ever since.

Today is also the first day she hasn't had Ativan, so it's been difficult for her to sleep and she's been a little sweaty and hyper active.

Here are some pictures of Rowan in the garden outside. This was her first time outside in over a month! The fresh air and running water were so nice.






Goodbye 2010- on to bigger and better things starting in 2011!

Day 30 Post-Transplant

Christmas again!!!

Judy arrived on Monday afternoon and she brought more gifts. Rowan had so much fun opening them:) Chance and I also went out to eat at Cheesecake Factory and it was delicious!








Everyone is working hard to get us out of the hospital. However, this is a biiiiiig job. Rowan needs:
1. Pump for iv antibiotics
2. Pump for tube feedings
3. Nebulizer for her antibiotic treatments
4. Blood pressure machine
5. Allll of her medications

She can't leave on methadone... And she needs to be off of oxygen for a full 24hours. So far Ro has a few days left to wean off methadone and she is still requiring 1/16th of a liter of oxygen at night.
So we wait. We organize everything we can, and let Rowan heal and get better in her own time. I joke that I am getting to know way too many people here!







Tummy time!













So proud of our little princess- we are almost there! Praying for continued strength and healing.

Day 28 Post- Transplant

Finally, a sigh of relief!

Bless her heart. Poor baby Rowan has been stuck with needles for iv's or blood draws over 12 times in the last two days because her picc line was removed due to possible infection. Today we learn, no infection. This afternoon they placed a new picc so Rowan will not have to endure any more torture! They also put in a different feeding tube- Ro continues to throw up when it is in the stomach. Now her tube feeding will go into her intestines directly. They say her stomach may just not be quite ready for food right now. The last time she was eating well was in mid- October.

We are praying that she does not throw up anymore. It started again when we re-started the feeds, but they have decreased the rate again to try and help. If she continues to throw up, it seems like there may be another issue. But everyone is fairly confident that her stomach is just not ready. Watching her throw up is so hard.

Today was the first day that Rowan was able to go without oxygen! With that tape and tubing off her face and the old feeding tube out, I got a few pictures :)

Tonight; however, she is back on oxygen. I think she is still sedated and worn out from her procedures... Tomorrow I am wishing it will stay off for good!






Sleeping angel baby.




Right after her procedures...

Day 26- 1st Christmas

Merry Christmas!
Happy Birthday to our Lord!

This morning we had high hopes of changing into our Christmas outfit, but we ended up in our Christmas pajamas all day. Rowan is still not feeding well, and actually threw up all day on Christmas eve into the night and day today.
We have changed her to continuously feeding through the ng tube, and will most likely evaluate everything on Monday.
Looks like the "infection" that appeared in her blood cultures on Thursday may have just been a contaminated lab draw.... I may have some words for someone...
Now, Rowan is having to be poked for every lab draw because we had to take out her picc line due to the "infection". Today she was stuck 4 times. It breaks my heart.

All of these are minor components in the big picture. Her liver continues to function perfectly. Soon this will all be a bunch of memories. However, in the here and now it seems like there is always something...



Despite all of her nagging medical hiccups today, Rowan had a wonderful 1st Christmas! She opened all of her gifts, had a great time playing with the paper, and then bounced and bounced in her exer-saucer.
My mom, dad, brother and grandpa were here with us in the hospital. Hopefully, chance's mom will be able to come soon- we missed that side of the family today.













Wowza! Happy Rowan!















Rowan was ready for the camera, but dad wasn't....

Day 25- Christmas Eve

>Merry Christmas Eve!

Our plan has changed again... Remember the Monday "ish"

Seems like Rowan is still having a hard time battling this respiratory infection. We have re-started some antibiotics, started some new ones, and re-started pounding on her chest with a little mallet to break up the mucous. She keeps trying to get the mucous up on her own, but it is so thick she ends up throwing up too:(
We are on throw up number 5 today.

Chance and I are having a Harry Potter marathon today when Rowan is sleeping. We haven't made it too far because we keep pausing it to play, feed, clean up throw-up, and love on our baby.

It's hard to imagine that we have practically been in the hospital for over 68days. (we were home for a few days at the beginning of November).

It's easy to get down and be bummed out about spending Rowan's first Thanksgiving and Christmas in the hospital. But then you look next door, or just down the hall and remember how fortunate and blessed we are. Rowan has a new liver. We have food to eat. And most importantly, we have family and a lot of love.

The Ugly Photos

Since starting this blog, I have shared the good and sometimes bad of our journey. But who wants to post ugly pictures of their baby?

Looking at photos today, I am reminded of how amazing Rowan's life has been. She is one strong little girl! It is so inspiring to see how happy she is today, despite all of the pain she has been through.
I wanted to share a few more photos of her life- even the ugly ones.



Under bili lights.


First photo- eyes open.




NICU.




Ready to leave the hospital- two weeks old.




:) 2months old




First hospitalization- liver biopsy.




Tears before the Kasai procedure.




Home after the Kasai procedure.





Healing scar.




We have battled taking medicine her entire life. Before transplant we were up to 8-10medications. However, this is not going to get better.... Post transplant we will now have about 11 daily medications. Unfortunately, the dosages are large, and I am sure we will struggle until Rowan is old enough to understand. (this photo was a war with vitamins)




Halloween in the hospital.



Before transplant- waiting for our liver in the hospital. Thanksgiving day 2010. She looked so happy, but her insides were very sick.




Turning yellow...



0545 surgery morning.




Yay! Transplant day!




Three days after surgery- so swollen.




The only bruising.




Intubated. Sick with pneumonia after transplant.




After this photo, I started the blog.



Every day Rowan amazes us- she is a true miracle. We have been so blessed and thank God for our angel donor.


Rowan continues to prove that she will do things her way. Progress has been slow, but steady. She still hasn't cried, and is nearly smiling at every second now.
We love her with all of our hearts, and are so proud to call this resilient child our daughter.

Day 22 Post- Transplant

Merry Christmas!









Yay!
My daddy's here!







Our surgeon is ready for us to get out of the hospital, but the critical care folks aren't ready.

Hopefully tomorrow we will be able to move to the 12th floor.
What's holding us back? 1/4th of a liter of oxygen through her nasal cannula!
I keep titrating the oxygen every chance I can :)
When we get to the floor Ro won't have to be on any monitors. It makes it so much easier and more enjoyable. Plus we love all of the 12th floor nurses!

The "plan" is if everything continues like it has we can leave the hospital on Monday-ish. (gotta love ish, because it usually doesn't happen that way). Then we will stay in Houston for a month- going back for frequent lab draws, etc...





Waiting patiently...
It's unreal how quickly Rowan is gaining muscle strength- she can almost sit up unassisted!

Still not eating well, so we are trying some new methods...


A while back I bought some cookies at a bake sale in Austin to help buy children toys who would be in the hospital on Christmas- I never imagined Rowan would be one of those kids!

We have been blessed with so much recently. Once Ro is through this phase, we can't wait to give back!
We are so excited that chance is off until Sunday and we can spend this cherished 1st Christmas with our family together! (next year look out- we may go overboard on the decorations!)


We had some delicious homemade chicken and dumplings tonight- thanks Laura!

Day 21 Post-Transplant

One person came in wearing a gown, then two more, then...
I asked, "okay- why is everyone coming in with gowns on?"
Apparently one of Rowan's nasal washes came back MRSA positive. This was news to me because I insist on knowing everything:)
The tracheal aspirate didn't have any MRSA, so everyone is really confused- but Rowan loves playing with their plastic blue gowns (when they actually put them on)...
Maybe tomorrow they will change their minds.

Not very hungry today- guess she's watching her figure.

No problems today with withdrawals. She's acting more and more like I would assume a regular baby should.

Still no crying and still so happy.
Her old boyfriend stopped by today. He's 28, but she's in love. Even when she was at her worst, this resident would always make her smile. It is so sweet of him to come by now that he is on neurology service.




Doing my physical therapy today!
Muscles get weak after a long time in bed!

Day 20 Post-Transplant

We moved to the step-down Icu two nights ago. Our room is huge- two tv's. Luxury
The nurses here are nice, but we sure will miss Nurse Megan and Nurse Jennifer from downstairs!

Rowan had to get an early bath today because she had poop all the way up her back and into her hair. She enjoyed it- And rolled all over the bed in it!




AND- She hasn't cried.

Before surgery she was always fussing. Crying when she woke up, crying when she was hungry, crying when she was tired, crying when they pulled off any tape, etc...
It makes you wonder what all was really going on inside her little body with that horrible old liver. Or, maybe she has just been through so much, this is nothing.

We are still fighting withdrawals, but overall they are getting better. Ro still has some bouts of crazy agitation... it wears me out!

We had to pass on Santa's visit today because she had just fallen asleep. It's too bad, he looked pretty legit today:)

Day 18 Post-Transplant

Look at me! Wearing my own Christmas pj's


Today has been a wonderful day for miss Rowan Ruth!

1. Wearing our own clothes!!!
2. Eating more and more...
3. Transfer orders to the step-down.... But they are full, so we get to stay in icu. This may be mom and dad's last night to sleep a little:) When she is not in icu, we sleep in the room with Ro.

We have waited so long for this day to come...

Still on medication for withdrawals, but we will start weaning that off again.

We are filled with so much joy, but our hearts are hurting too. Our little friend fought a very great battle and went to see Jesus last night. I have never felt such a connection to any stranger as I did with his mom. There was some type of unspoken desperation that I could feel every day during the two weeks I saw her. That desperation for a liver to help your baby live is a powerful tie. Waiting is often so difficult, and there was such hope for him when they said a liver was available. Unfortunately, our maker had other plans and needed him as an angel. Maybe it's comforting for her to have both of her children together- in Heaven.

Again, it just makes us hold on to our little girl that much tighter with thanks and praise. She has a great purpose here, and her story is just beginning. Rowan needs to live and thrive for all of those we have met along the way who can't. We will never forget them.

Day 17 Post-Transplant

Whew! Little Rowan is now a squirming, pooping, happy mess!
And she has been a handful!

She is going through withdrawals (increased heart rate, diarrhea, jittery, sweaty) from alllll of that medication that was used while she was intubated. Poor thing can't sit still even when she tries. BUT thanks to our friendly drug methadone we are doing a little better:)

Great things that happened today:
1. Rowan gets to eat from a bottle!
2. She has weaned off of high-flow oxygen to a regular nasal cannula.
3. Smiles!
4. Holding our baby!

We feel so fortunate and blessed to have made such great progress! No fevers and tacro levels are great. We are going to hold our angel tightly and fight through all of this for our little girl and for our donor angel as well.

Please keep our friends in your prayers. Unfortunately, our little man quickly deteriorated and he was unable to get the liver because he was too sick. They are not expecting for him to make it through the night.

We may be in the hospital for Christmas, but we will have our family... an amazing gift!

Day 15 Post-Transplant

We missed Daddy today. He was at work until very late last night, so he wasn't able to make it for a visit. Uncle Seth will have to serve as replacement:)

Rowan had a pretty good night. She did a lot of sleeping. I held her as soon as she woke up. Because she is still coming off of drugs, she has been a little jittery.

Ro's lungs aren't able to fully expand because of her big belly and liver. They are concerned about her shallow and rapid breathing, so they placed her on "high-flow" oxygen to prevent any collapse. She hates it, but it is the best thing at this time.

Her tacro (Prograf: anti- rejection medication) level was a little high today. She also started to run a slight low- grade fever. These are signs that she may have an infection. BUT they also held her feedings yesterday, so that could be the reason for the abnormal level.

Santa came to visit. His elves were with the FBI. (seriously) The gift they left for us was a black FBI hat. Maybe in 15years she will be able to wear it. I will save it for her until then.


Rowan pulled on his beard:)
And it's dark because I didn't have the flash on.... Bummer.





Also, our little Rowan is becoming a celebrity:) check her out: Baaware.posterous.com
Check out the other kids as well!

On another note:
There is a family here who has really touched our hearts. The day Rowan received her transplant, we met. The mother told me that day she was very happy for Rowan to receive a liver. She went on to say that she had lost a daughter needing a liver transplant and her small son is on the list as well. How could she be happy for us at that time? She had to have felt such pain at that time. I was in awe of her strength. We have kept up with them over the past couple of weeks (which seem like months). Unfortunately, her son has been getting worse. I saw her in the lobby today and we discussed how sick he was right now. I went to get some drinks, prayed at the chapel here, and placed a prayer card with his name on it on a tree there. When I returned to the lobby, about 10minutes later, the family let me know they had just received THE call. He is getting a liver! What an amazing and overwhelming feeling.

So much to be thankful for.

Day 14 Post-Transplant

What an amazing day!

I arrived at the hospital at 0700 because Rowan was going to be extubated in the "morning." While she did not get extubated in the morning, she did this afternoon at 4pm!
I was anticipating that waiting all day would be horrible for her, but she never was upset. What can I say? The child loves methadone:) and Ativan too. It works! After an entire week of misery, they started these wonderful drugs and she has been so peaceful ever since!




She was sucking on her thumb- just waiting patiently to have that tube removed.




Still waiting...




And finally- it's out!
This was the first time to hold her in over two weeks. What a great moment. We both felt such relief.

Tonight Chance will be driving in from a long day at work. We are so fortunate to stay at Ronald McDonald tonight.... sometimes you don't always get a room. It will make me feel so much more comfortable to be close by!

Day 13 photos

Still trying... With the blogpress I am able to upload photos.

Here are a few from this afternoon. Rowan is playing with her rattle and watching football:)





I am still praying Ro is able to be extubated tomorrow!
Tonight I am going to try and get some rest because she is going to be one busy full time job when she isn't tied down and sedated:)

Day 13 Post-Transplant

I can actually see the light at the end of the tunnel!
Rowan has been making slow and steady progress. She has been intubated for 8 days now.
Last night and today have been the first times in a week that she has not been extremely agitated when she has been awake. This morning she has watched tv, read books, and played with her rattle.

Tonight they are going to make her npo (nothing to eat) for extubation tomorrow! (in adults, the patients don't have to be npo before extubation, especially if they have a dobhoff tube- that's past the stomach- but who knows? Sometimes I get tired of asking questions... Actually, I will just ask later because that is bothering me now.)

Ok- I had to ask before I was finished with this post...
AND, there's no reason... "to prevent aspiration" from food in her stomach going into her lungs if she had to be re-intubated. But thre is no food in her stomach. The feeding tube in her nose is going past her stomach into the intestines.

And this is why I get irritated. By morning she will be so hungry that she is going to

get really agitated. I'm not kidding. Currently, she is on fentanyl, versed, Ativan, and methadone. I have heard them say inn report that she is a "sedation nightmare".

Hopefully, those days are behind us as this tube comes out soon. I cannot wait to hold my beautiful baby girl again! It has been one day shy of two weeks!
We have so much to be thankful for. Her liver is performing without any problems! Our family and friends have been so supportive. Chance and I feel like the trials and struggles we have faced in our lives earlier, were little ways God was preparing us for this time now.
We continue to praise Him for this blessing!

Hi- I'm new

I may be the last one to jump on the blogging bandwagon- so don't make fun if mine is not as pretty as the others. I am still learning...

Previously, I have been posting all of Rowan's updates on Facebook. While I am not abandoning fb all together, I thought this might be a better way to journal Rowan's progress. I am working on adding pictures- for some reason the iPad is not compatable with flash, etc, so it makes it more difficult.

Anyway- we'll see how this goes :)