Day 57- Check Up and Up

Today started at 0530. After I got ready, I put Rowan in the car with her pj's still on. This was way to early for her taste to be up.

We headed to Austin and she slept the entire way. It felt nice- just me driving a kid- instead of a sick kid.

Along with us we had to pack her feeding pump, medications, ice packs for the medications, and milk to drink.









Waiting in the lobby... It was cold this morning!

We arrived for labs on time-- the Prograf (anti-rejection) level is only accurate if drawn at 0830.

She was poked twice. Once in each arm. And yes, she cried, but that started when they put the tourniquet on.... She knows when it's coming....

Afterwards, all smiles as we went to see our GI specialist.

The office was delighted to see her.

During the visit her Dr felt like she was breathing rather quickly and she had some wheezing.
This along with the major congestion, runny nose, coughing, and sneezing.

He asked us to make an appointment with our general pediatrician today- or go to the er. (ya right)

The potassium level that was drawn came back really high. Most likely the blood had clotted.... So we went back for another round of needles. Got it in one try this time. Thank goodness!






I gave Rowan all of her many medicines, a bottle, and we were off.

She slept while I drove around for about 2hours.... I know gas is expensive, but to have her sleep and not be grumpy was very worth it. She woke up bright eyed and bushy tailed- assisted me in filling the car back up with gas- and we were off for her next appointment.

Bronchiolitis.

Rowan received a breathing treatment for the wheezing, but it didn't help.
Honestly, I've seen her so much worse, so I kinda felt like this was nothing- more frustrating and uncomfortable for her- but manageable.

The trip home was great too. Another small miracle.

Once home of course it was bouncer time:) and snack/dinner












Green beans- success!


Tired and worn out, but overall a great day!
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.
Matthew 11:28

Day 54- Workin on Fitness

Yesterday Rowan had occupational therapy in Austin. They will work with her to get caught up on some gross motor skills.

She is 7 1/2 months now, but she is not quite able to sit up unassisted, roll over consistently, or crawl. This is not unexpected. For the two months prior to her transplant, her stomach was so big and swollen that it was extremely uncomfortable for tummy time. Then, during the hospital stay, she was confined to bed in the ICU for 3 weeks. We are doing our own exercises at home, but therapy is going to teach us a few new moves.

Since the transplant she is already making somuch progress on her own. The therapists have been impressed with her progress.

Teething is still a process. BUT, we have found a few things that help ease her pain.

Now she has a cold!
It's just one thing after another!!!

We talked to our team in Houston and they said to monitor for a fever. No fever yet, so we are trying to keep from getting any worse!

It made it hard for Ro to sleep last night with her itchy, runny, and congested nose... Poor thing- that and the teething.

That hasn't stopped her from enjoying her exer-saucer:)
Best. Toy. On. Earth.



We have met so many families with children suffering from BA. Rowan is so fortunate to have a new liver and on her way to recovery. She Could be in a much worse position. Talking with some of the moms who are pre-transplant is so interesting because we have such similar stories. So many babies to keep in our prayers...






Check her out helping with allllll of the laundry:)

Day 52- Tube REplacement

Good morning clogged feeding tube...

Not the best way to start a day.

Medications were due, so Rowan had to take them by mouth. She wasn't thrilled about this either...

We were able to get into the Interventional Radiology department at Dell Children's Hospital relatively quickly. We showed up at 12:15 and were scheduled to have the tube replaced at 1:00, but as always, there was an issue, so we got things started around 1:30.

Rowan was a great sport about waiting. She and Judy (grandma name is still to be determined) watched the fish and played.

The actual procedure itself wasn't too terribly bad. Of course I know it was painful and she cried the entire time. First, they velcro strapped Rowan to a wood plank. Then after removing the clogged tube, they inserted a new one. This was all done with the guidance of fluoroscopy (a "moving x-ray" picture where they can see the tube as it moves in place.)

Then, we had to wait for tape to secure it in place. And wait. And wait. Rowan screamed the whole time because she was still strapped to that board.

The trip ride back home, she slept. It was an exhausting afternoon.

At home, her tooth started to give her grief. Poor kid can't get a break. We've tried to get her to suck on cool rags, teethers, used the teething tablets. We've given her Tylenol, and tried the baby orajel.

Basically, we've quickly figured out that teething is no fun! I'm trying to decide which is worse- that or the methadone withdrawals. Thank goodness those are over! We are officially no longer a drug addict.

We ended the night having fun in the tub. I saw a few smiles... It's so nice that she likes bath time again.







Tomorrow Rowan goes to occupational therapy. Back to Dell Childrens bright and early....

Day 51- Hearts...

Last night Rowan wanted to sample some chocolate pudding.






Yummy:)
A girl after my own chocolate heart.


Her blood pressure must be taken every night before giving her blood pressure medication, amlodipine.

The Prograf (anti-rejection) causes her blood pressure to be higher.

For the past two nights, we haven't had to give the amlodipine because her blood pressure was already at a normal low! 90/50

Yay- the team had said her body may adjust to the anti-rejection medication and not require the blood pressure medicine.... We will see what the next few days holds.

As Forrest Gump would say "one less thing to worry about." And that would be great!


Continue to pray for our angel donor's family- we are eternally grateful. And also for the many other children diagnosed with BA- some have already lost their fight this year. We are so blessed to have our Rowan here and so healthy.



Chance and I donated her old liver to the team for research. We are also participating in a research study with Rowan to help determine and exact cause/ cure.

Day 49- A Tooth!

Rowan's night was much better and she didn't want to get her day going until after 9:30am!

My aunt came over to babysit while I ran a few errands. From the report, she was an angel:)

AND we found a tooth! It's just about to pop through those gums. Good thing too- because she is really liking whatever food we are eating so much better than baby food.

Here's my happy baby after her bath.



Doesn't she look fabulous?!

Day 48- Or Not...

No less than one hour after I posted "day 47- piece of cake", it turned into a plate of misery.

Yesterday Rowan's methadone dose was scheduled to be decreased. (This is the medication to prevent her from having withdrawals from all of the iv drugs she was on in the hospital. But, by decreasing the methadone she can have withdrawals from that too.)

Last night it got ugly.

She had diarrhea, fussiness, sweating, and was unable to sleep- literally all night.

Chance lucked out again because he had work today, so we tried to let him sleep as much as possible.

To top it off, she threw up again because she was so agitated, and that just made it all stinky and even worse.

I made an executive nursing decision and gave her an increased amount of her morning dose. And I gave it early:)

Finally we were able to get a few hours of sleep.

One thing I did learn:
Rowan is too big for her swing. The straps will not fasten.
(I was desperate for anything to make her more comfortable)
But we can just pack that guy up. I'm kind of happy- it took up a lot of room!



Random note-
Before transplant, bile was not able to be released to help breakdown food. This resulted in Rowan's stool being very pale and rarely ever stinky. Now that we have bile flowing and are starting to eat some solids, there are some very foul odors coming from her room...
Our washing machine has been in constant motion as a result!

Day 47- Piece of Cake

Rowan slept from 7pm to 5am. She woke up, had some food, and went back to sleep until 8:30. WoooHooo! If only I didn't have to wake up and fill that tube feeding bag with formula....
It was still a great night:)

Maybe she is adjusting to our schedule here at home. Because her PICC line was removed, we have started to take baths again at night before bed. For the first few Ro acted like we were putting her in a tub of acid--- but now she remembers how much she enjoys bath time.

Chance was off of work today so we were able to enjoy breakfast together. Real eggs. Yum.
Breakfast was the worst meal in the hospital. I usually like something small or light, and it always seemed like breakfast was heavy, greasy, or just gross.

Rowan jumped in the exer-saucer alllll morning. I don't know what we would do without it! Seriously.

Today was my mom's birthday and we went out to eat to celebrate. This was the first time we have taken Ro out to a restaurant since we have been home.

She had a Great time. This is new, because she usually was never very easy to take out... always crying and fussing...
Tonight she sampled some bread, icing, and vanilla ice cream. I think the ice cream was her favorite.

We did get quite a few stares being a busy Saturday night. A tube and tape plastered all over your face is not really ordinary. I wanted to have a sign that read, "I had a liver transplant."

Speaking of food...
Rowan is eating 12-18 ounces of milk throughout the day. This is on top of her getting a little over an ounce an hour through the tube. The team in Houston is very concerned with nutrition and gaining weight, so hopefully we can blow them away at our next weight check on the 24th.
In the meantime- I hate that tube because it is so cumbersome to lug around all day, but it sure is my best friend come medicine time :)

It's funny how a normal day can seem so extraordinarily wonderful! With Rowan being our first child, we didn't know that the first 6 months of her life were really, really hard. (compared to what we would assume was normal) Our normal consisted of drs appointments, tons of lab work, screaming and fussing all the time, and no sleep. With this new liver, Rowan has really transformed into another child. She is So much easier to take care of now. (being a nurse helps with all of those medications). But life seems so much happier these days. Chance and I must have also been experiencing so much stress that it weighed us down.

We are so thankful for our joyful little girl and for her angel donor!

Day 44- Check Up

Friday, Saturday and Sunday nights were pretty much sleepless. If it wasn't tube feeding that exploded all over the crib it was throwing up medicine, and then just plain hunger and trying to adjust to not being in the same room. (We practically lived and slept in the same room the last month that Ro was in the hospital.) Of course on Monday night she slept like an angel. Chance had worked those three sleepless nights the next day, so I was up all by myself- with Rowan, so not really by myself:) But, when he was able to help on Monday night, she slept practically all night...little toot

We left Tuesday afternoon for Houston.

Wednesday, I dressed her in the cutest outfit... I had been saving it for this appointment. And as soon as we arrived there was an explosion- Poop and pee everywhere!!! Seriously The. Worst. mess I have ever seen. So we were forced to change into our "diaper bag" outfit- a stupid onesie.

Regardless, Rowan was so playful and happy. I personally drew her labs from her picc line:) The lab technicians aren't allowed to touch the lines, so I used my degree:) Comes in handy to be a nurse and a mom.

We met with all of our team- excited to see them after going for a whole week without seeing their faces.
1. Rowan gained a small amount of weight, so the tube feeding only has to run for 20hours per day.
2. Her lab numbers look better, so we were able to change her to regular formula for the tube feeding.
3. Her Prograf level (anti-rejection) were a little low so we had to increase her dose again.
4. She continues to throw up the bactrim (antibiotic) so instead she will receive a pentamidine treatment once a month. They hold a mask over her face for approximately 15 minutes. The respiratory therapist prepared us for 15 minutes of screaming, went on and on of how kids HATE this particular treatment, and then Rowan didn't cry!

Seems like our vomiting has resolved--- pushing the meds down her tube too quickly seemed to be a major cause. (that and the bactrim) so goodbye bactrim!

5. We don't have to return to Houston for another month!!!
We will just go to Austin for labs in the meantime:)

On our way back home, we stopped by and ate dinner with some really good friends. We actually just invited ourselves over, but it was so good to catch up. We even ate some of their wedding cake saved for their first anniversary- it was delicious! Rowan even enjoyed it:)

What a blessed life! It feels so incredibly wonderful to be home. Ro squealed when I put her up on the changing table when we first walked in the door. I think she is delighted to have her old room back. Chance and I feel so content. We are very honored and blessed to have such a beautiful, happy, and healthy daughter.

She is keeping me so busy, I am having a hard time keeping up with the blog...
So gooooodmorning, Thursday
I just finished feeding Ro and mixing formula for her milk drip... She's back to sleep- that was the first time she woke up (4am)! And I am one happy momma. Off to bed for a few more hours.








Just bouncin' at 5am





Tummy time...

Loving these crazy faces












































Oh yeah.... And she's starting eating some solids. Currently, peas are the favorite.

Thank you- We are home.

The last few days Rowan spent in the hospital were horrendous. They weaned the methadone too quickly and she had terrible withdrawals. Sunday was so bad I couldn't put her down, didn't get to take a shower, and made Chance switch his schedule at work to come as reinforcement. None of us slept, but we are still alive now:)
Monday brought a new attending with a different philosophy and we went back up on the methadone to help out with all of the irritability. And it did help- Ro is still on the methadone at home and we are just decreasing it very slowly.
Tuesday we were discharged from the hospital. Seth came to town and he and Chance moved 4 trolley loads of Rowan's stuff into our hotel. (We couldn't stay without her bouncer, mat, highchair, two suitcases full of clothes, enough toys to fill Santa's sleigh, her bathtub, and the many miscellaneous items for all of her medical needs)
Wednesday, yes the following day, we had a clinic visit back at the hospital. Labs were drawn, and we met with our specialist dr. Himes. He said go home! No need for our planned stay at the hotel- just go home! An amazing blessing on our 3rd wedding anniversay.
Chance had already gone back to work Tuesday night, so Seth then got to take all 4 loads of hotel items back to the cars. We had already arranged for tube feeding supplies to be sent to the hotel, so we waited for them to arrive as well. Ro had a pretty good time in the hotel, but we were all ready to be home!
Thursday morning we hit the road- and Rowan slept almost the entire time... Another small miracle, since I was driving her all by myself! She usually requires company in the back seat, or she feels too lonely and then gets fussy...
As I was driving, I began to have flashbacks of the last time we were in the car alone together. We were on our way to Houston- sick baby, bad liver. We met Chance in Brenham that time on our way to the hospital. Looking back now was somewhat like an out of body experience. Now that she is well and healthy, it is so easy to see how close to death she was. That car ride was so scary, yet at the time Chance and I both were so determined and had our eyes fixed on exactly what needed to happen. I wasn't scared, I wasn't panicked, just on a mission to save my baby. The months in the hospital also came back like a flood. All of the bad times, frustrations, watching Rowan stop breathing and go lifeless, being intubated, and on and on...she was so close to dying, but I never had that fear. As I have said before she has always been a fighter. She never quit, and she still doesn't. I was with her the entire time and God was with me. He protected our whole family and gave us such peace. We knew that eventually she would be home in our arms, it just took some time. And during that time we met a lot of people, shook a lot of hands, heard a lot of sad stories, and a lot of happy ones too. We watched Thanksgiving, Christmas, and New Years pass us by while we waited. Chance drove back and forth tirelessly working full time. All of our family and friends made countless trips to see us, paid a million dollars in parking fees, ordered so much food, and gave so much support. We couldn't have done it with you! The unfortunate part of our hospitalization was seeing other families in similar situations go through this alone. It just reminds us how blessed we truly are.
Rowan spent 71 days in the hospital between Austin and Houston. I can't tell you how nice it is to just eat a peanut butter and jelly sandwich, hang out as a family, and have a home full of love.

She is on continuous feeding through her tube, off for only 2hours per day. But she has started eating more on her own so soon that break will become longer and longer. She has 11 medications to take, but that won't change any time soon.
All that matters is Rowan is alive, healthy and home- Amen! She is doing so amazingly well!!!

We go back on Wednesday for clinic again.








Thank you again for all of your love, prayers, and support!

Day 33- New Years Day

Happy New Year!

...somebody woke up on the wrong side of the crib...
Today wasn't the best day, but we have seen much worse.
Rowan is still in the process of weaning off her Ativan and methadone. She was fussy all day today and even the nurses noticed she wasn't as happy. Along with the crying she sweats, has some tremors, and can't sleep.
I am so thankful Chance was able to tag team with me. Sometimes making her comfortable is exhausting! He had to drive back to Austin for work on Sunday and Monday. I hope I have the energy to survive until he gets back. We are still on schedule to be leaving the hospital on Monday.

I have also been so frustrated by this throwing up! It breaks my heart to watch her gag-
But one thought today was that the mucus she has been throwing up is being built up because of the feeding tube in her nose (acting as an irritant). I am thinking this is a fairly accurate hypothesis. I am at peace to maybe know the "why" and getting ready for a long haul of throwing up. There is no plan to take the feeding tube out any time soon. They have it calculated out exactly how many calories she needs, and not meeting that amount is not an option.

We were all relieved that there was football on tv today. It's Rowan's favorite thing to watch:)


Thinking of this verse today when I am worn out-
James 1:2-4
Consider it pure joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.