We got the call!!!!!!!!

We got the call!

We were all in our backyard at around 9 pm when my phone rang. Bill was by the grill, B was chasing the dog, trey just walked in from baseball, and I was holding Dru. 

We check in at 8 am tomorrow. If all goes well she will be in surgery around 8 pm. 

I am speechless. Giddy. Sad for the donor's family. Nervous. Anxiety through the roof. 

I know a lot of you have prayed for my baby girl. Thank you. It's worked so far. Keep it up. 

Our First Tap

So today was our first experience with getting the fluid in Dru's belly drained. 

I've been kindof looking forward to it. A sweet liver mom, Tiffany Applebaum, that we met at clinic yesterday told me that their relief is immediate. Hallelujah!!

On our drive there we got a phone call to let us know we wouldn't have to stay the night. 

What a relief. I hate leaving the family if it's not necessary. 

Our doc isn't as worried about her breathing once there is no fluid putting so much pressure on her lungs and they did not want to run the risk of her catching an illness while staying at the hospital--which gets my hopes up that transplant could be sooner than later. 

We checked in at Imaging, where after 3 attempts at placing the IV, they performed the procedure. 

It's a killer watching her drug-induced sleep then having to leave her. Although secretly I wish I could take some of those meds home to use on her at night ;)

The procedure lasted all of 30 minutes. And in that time I ran into my dear friend Laura and her sister, who's son is at primary's for Kawasaki disease. I was so happy to see them ❤️❤️❤️

As we walked into Dru's recovery room, she was just waking up and was crying. Once I picked her up, she stopped immediately and I could tell instantly how much softer her belly was and how easy she was breathing. 

We had to stay for 2 more hours to give her meds that will help keep the fluid from leaking into her abdomen as quickly. 

She woke up smiling and clapping. Much more comfortable. 

Her belly is still on the large side because her liver and spleen are so enlarged, but it looks so much better. 

And that smile says it all :)

I Could Not Ask For More

It never fails that on some of our worst days with biliary atresia, the perfect song comes on during my therapeutic run. 

Today it was "I Could Not Ask For More" by Edwin McCain. 

This morning was our regularly scheduled clinic visit to Primary Children's Hospital. I was actually looking forward to this appointment because I have been really worried about Dru's breathing and lack of eating. 

But getting ready to go was a production to say the least. 

I thought I was doing so well and put Dru's hair up in pigtails for the first time the night before so she would wake up without the snarls we usually face. 

Let's just say the pigtails didn't survive the night. 

Really no big deal, I'll just condition the heck out her hair and put a bow in and we're good. It just takes forever because she can't sit up very well and hates having her hair done. 

So as I'm speeding through getting myself ready, Dru is in her high chair in the other room with her brothers and pulls her NG tube out.

 Now this doesn't bother her at all. 

But taking the tape off her face sure does. She screamed like I have never heard before and didn't stop until her clothes were changed and her hair was done.

It was a long 10 minutes. And to top it off I cried too because the cute dress I wanted to put her in wouldn't fit over her swollen belly. 

It's a good thing she has lots of cute clothes. 

Once we are in the car, she is awesome. Better than my boys ever were as babies. 

So we do the usual blood lab then up to clinic.  Her bilirubin is going down so Dr. Jensen thought her score would go down. 

The wierd thing was that she has gained two pounds in two weeks even though she is eating way less ounces than she should. 

But one look at the size of her belly and he was pretty positive it was full of fluid (ascites). 

So we then went down to imaging for an ultrasound to confirm the fluid and then back up to the clinic. 

Sure enough, Dr Jensen was right. We are scheduled for a tap on her belly tomorrow to drain the fluid and then she is staying overnight so they can monitor her breathing too. 

I'm so relieved about the tap because it will give her some relief. 

As far as her eating--we are putting the NG tube back in tonight and she will get continual feeds for 20-22 hours a day. If she starts to not tolerate that, then IV feeds are next. 

And more good news-instead of her score going down, she jumped up another 3!!!

Her PELD score is now 28!!!

It's very strange that she is a very sick baby but Bill and I don't feel it as a burden. We are honestly so happy and calm and hopeful. 

Not saying we don't have our moments, but overall we are so blessed. 

We get to love Dru and receive the love she gives. Who could ask for more than that?

Life is Better on the Lake

Today was perfect. 

Just what our family needed. 

We headed to the lake. Just the 5 of us. 

The waves work their magic on Dru every time and she was like a normal baby today. 

A normal baby with a big belly, who holds her foot even in her sleep :)

She and Trey seemed to have really bonded today. Which was so awesome for me. It was like I wasn't sure what to do with my hands because they weren't full of baby. 

It was so fun to see those two interact and make each other laugh and clap. Bliss. Pure bliss. 

Dru was doing so well with Trey that I got my first chance of the year to surf. The best part of that was after going down, I was alone in the water just floating without a care in the world til the boat circled round again. I could have floated for hours. 

Another highlight today was Little B surfing with dad. He loved it. 

Wouldn't it be awesome if everyday was a lake day?

Harder and Harder to Breathe

Our mornings are getting harder around here. It takes Dru a while to feel good. 

She typically wakes up 4-5 times a night. I really wish I could let her cry it out, but I never know if she's pulled her NG tube out or had a messy diaper or if she's in pain. And now I worry if she's having a hard time breathing. 

It seems like the more formula that gets pumped into her belly at night, the more rock hard her abdomen gets, and her breathing starts to get so labored. 

Dru's belly is huge, but they tell me the ultrasound showed no fluid. But it can't be comfortable. 

So with the discomfort and the pressure on her lungs, Dru is not a happy camper until she gets some relief. And relief usually comes in the form of a major messy diaper which leads me to believe that some of the pressure in her belly is coming from her colon. Like she can't digest her formula well anymore. 

Maybe the TPN will help? We will see soon. We go back to primary's on Monday  

In the meantime, it's our state holiday here in Utah (Pioneer Day), so Dad is home, and that always means a fun day. 

And just so your not left with the idea that things are all bad around here--here's a picture of Dru trying Greek yogurt yesterday. She loved it!!!

She has also learned to clap and wave. I love seeing her use her hands to communicate more. 

Dru's first Grandma Camp

Dru's liver disease is progressing. And by progressing, I mean her health is deteriorating. 

Man, I hate that word. Deteriorating. 

It's depressing. 

At our last appointment, the nutritionist (who reminds me of a fairy godmother), changed Dru's formula recipe. It's more concentrated now so that she gets more calories in the same amount of oz. 

Dru has not adjusted well to this. In the last week she has only drank 8-10 oz during the day, then we pump what we can at night. For some reason this is causing her a lot of pain and she is awake all night, or will sleep fitfully if she's being held. It breaks my heart to hear her whimper in her sleep, I know it stresses Bill out too. Neither one of us is able to sleep much these days. Knowing this is a small window of our life is the only thing that keeps us going some nights. 

Dru is also having a hard time breathing. Her whole body moves with each breath, like it takes all her effort. The pressure on her lungs is getting greater. 

She's also scratching her face all the time. The bile in her blood makes her itchy, or maybe it's the bilirubin (I forget).

Needless to say, I am calling her doctor tomorrow to see what can be done about all of her discomfort. It never fails that all these issues become obvious AFTER we have left his office. 

Despite all these concerns we are optimistic still. I don't want to overlook them for the sake of positivity though. I think it's important to share the hard things we are facing as well as the good. 

And speaking of good, Dru was able to go to her first Grandma Camp this weekend. My mom does a themed camp for the grand kids one weekend every summer. This year it was Granmalot (Camelot-Monty Python style). The kids loved it. 

Dru slept through most of the first day. 

Then she was home with me and Dad til we went back on Saturday. 

My entire family went on an easy hike up to a small waterfall up the canyon near my parents' house. 

It was Dru's first hike. She really seemed to enjoy it. 

I really love that we keep trying to do normal things with Dru. And we make it a choice each day to be positive and just live day to day (sometimes nap to nap). I might be tired from restless nights, I might cry at a restaraunt when the sweet server asks us about her feeding tube, I might get overwhelmed at all the changes that are happening; BUT what I am experiencing is nothing compared to what Dru deals with everyday. And if she can still smile at me and fight to be happy, then how can I give any less to her?

Little Miss Magic hit the "Magic" Number Today

We had a clinic visit today. 

Same old, same old. 

Waiting for bloodwork 

Then an elevator ride to the second floor to visit Dr. Jensen. 

With today's bloodwork, Dru's PELD score went up another point to 25. Dr. Jensen called it the "magic number". 

If I understood correctly, that means now that she has reached 25, things like the way she receives her nutrition and her weight will start to play more of a factor in her scoring. 

Speaking of her nutrition...

She has gained weight but it's all liver :(. 

Her belly is huge, but her little bum and her arms are losing fat. And her muscle measurements are only in the 10th percentile. 

We have a new recipe for her formula, but she will probably be put on IV feedings (TPN) in the next month or so. That means a central line will be placed in her arm and she will receive her nutrition that way. We will do whatever it takes to make sure she is as big and strong as possible in preparation for transplant, even though it's one more new thing that scares the hell out of me. 

A couple of perks that come with the central line are that she will no longer need the NG tube so no more tape on her face, and they can draw blood from the IV instead of poking her every 2 weeks. 

Also today, because her belly is so swollen, her doc thought she might be holding a lot of fluid in her abdomen. We had an ultrasound today and there is no fluid, so no need to tap her belly like we thought.  I was hoping to relieve some pressure for her but I'm glad there's no need for more time at the hospital right now. 

I'm so grateful that this girl is ours and we have the blessing of standing by her in this fight. She's a trooper and puts up with every poke and test that's needed

I absolutely cannot wait to see the change in her when she feels 100%. 

Parachute

Today has been nothing out of the ordinary. Nothing too exciting, and nothing too traumatic. 

I just woke up with a feeling of not being "enough".

I feel sometimes that I am not up to the task of being this special girl's mom. 

She is so much braver and stronger than me. 

I really make an effort to choose a positive attitude about Dru being so sick. If I don't, it would be so easy to drown in sadness and defeat. And if I go down, I feel like she would too. But sometimes being positive all the time can be exhausting. 

She's really sick. 

Her arms are getting thinner by the day as her belly gets bigger. 

I can feel her bones in her shoulders and back when I pick her up. 

She is eating less

She is sleeping more, but is more restless at night. 

She rarely lets anyone hold her besides Bill or I, and she wants to be held all the time. 

I feel like my boys are falling through the cracks, and that gives me major guilt. 

Whew, it feels good to spill all that. 

I do know that this part of our adventure is temporary. There is a light at the end of the tunnel and this moment, right now, won't last forever. And even tomorrow I will feel better and maybe even be a bit embarassed that I posted this. But I also think it's important for Dru to be able to look back and see how strong she is, to see all the hard things she faced and conquered. 

All these negative thoughts were on my mind today when I decided to get my run in. Running has always been very spiritual and therapeutic for me, and today's run was especially needed. 

Near the end of my run, the song "Parachute" by Train came on my iPhone. The lyrics hit close to home today and I bawled through the entire song. All of it is fitting, but here is the chorus:

I'll open up and be your parachute,

I'll never let you down. 

So open up and be my human angel, 

And we'll only hit the ground running...

Dru is most definitely my human angel, and I am honored and blessed to be her parachute. 

Dru's first Fourth of July

Dru has been such a happy girl the last few days. Lots more smiles. 

We spent the fourth at home in our backyard. With her PELD score going up, I am finding myself more paranoid about having her around a lot of people. I'm scared to death she'll pick up a virus and that may keep her from accepting a liver. 

There are some benefits to her not letting many people hold her--it gives me some control on what she's exposed to. 

So our holiday was spent with some good friends in our own little sanctuary. 

A BBQ and some fireworks. 

Another event when we are so grateful that Dru was happy and healthy enough to share it with us. 

In other news--we are getting more concerned about the fluid in Dru's belly.

She's on a diuretic to help reduce the pressure in her belly, but sometimes I can tell it's hard for her to breathe. :(

Despite the size of her belly, that keeps her from rolling and crawling, and even sitting up; she sure tries. 

Things are Looking Up

Dru had blood labs again today. It's really nice that we can go to UVRMC between visits to Primary's. 

Poor baby really hates the pokes, but it's always a good day when your bandage matches your outfit :)

Our new nurse coordinator, Sharon, just called with the results. 

My little fighter went from a PELD of 19 to a 24!!!!!

 This is the biggest jump in points she has ever had. And such great news that she is still healthy enough to be at home and as normal as possible. 

There is a little worry that she is getting more fluid in her abdomen because it's growing bigger. For now we are keeping a very close eye on it. 

Keep praying 🙏