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 🙏

Just Keep Swimming

Our family just got to spend the weekend in southern Utah watching our oldest boy's baseball team play in the Utah Summer Games. 

4 months ago, when we first heard of Biliary Atresia and all the experiences that were headed our way, I never thought Dru would be in good enough health to make this trip. 

In fact, I was saying this to Bill on our drive down. And later that night as we were going to bed in our hotel, I remember saying "even though it's harder to make these trips, I'm glad we make the effort."

The first day was spent driving (about 3 hours). Dru does really well in the car. We stopped once for a diaper change and to try and feed her. She was not interested in her bottle at all. 

We checked in to our hotel, then spent the rest of the night at the ball park. 

Dru was acting a little fussy and tired, but no more than usual. I was getting worried about her eating though. She had only had 5 oz all day. Our goal is 27 oz. 

I really was nervous to pump 22 oz through her feeding tube, so I programmed her pump for 12 oz and put her to bed. 

At about 3:30 am she made a really weird coughing sound so Bill and I both jumped up and I picked her up. She immediately threw up all over herself and me. I felt like a deer in the headlights. I wasn't sure who to clean up first :)

Thankfully, Bill took Dru and changed her while I showered. I just hate that it happened away from home and our washing machine. 

Dru does not throw up often at all so I was so nervous about laying her back down. Visions of her aspirating were filling my mind (I know I'm neurotic). So I slept on the couch with her in my arms the rest of the night. 

I cried for just a minute as I thought there might be more nights like this to come. But then, what an awesome thing to be able to tell her when she's all better, that her dad and I were holding her through it all. 

Dru always like to hold on to something as she sleeps. Usually it's a fleece baby blanket, but on this night it was the strap of my tank top. It made me feel good that there was a small comfort like that that I was able to give her. 

The next day, Dru seemed more like herself. She ate much better and napped as usual. And was more smiley. 

We even took her swimming for the first time. She didn't cry, but she didn't smile either. In fact, her facial expression didn't change at all. 

After a while, she was shivering. So we got out and dried off and watched her brothers and Dad swim. 

It was our last night at the hotel and I didn't want a repeat performance of the throwing up so we opted not to hook her up to her feeding pump and just bottle feed her instead. She woke up a few times to eat, but on the whole she slept a lot better. 

We are home now and you can tell she is in her happy place. She drank an entire 5 oz bottle, which hardly ever happens, and has been napping in her own bed for almost 2 hours already. 

I am really glad we try to keep making trips and doing the things we normally would. 

It's good for my boys to see that their interests are important to us even though we are distracted with Dru's disease. 

It's good for our family to have things to look forward too. 

It's good for Bill and I to put in the effort to make happy, lasting memories with our kids. 

It's important for all of us to not let BiliaryAtresia  win. 

Holding Steady

My girl is one tough chick!!!

I don't know how she does it, but after more labs yesterday, she is still holding steady at a PELD score of 19. 

I'm amazed that her numbers look so stable with such a sick liver. 

And, as always, I am so grateful that Dru is so quick to forgive me for holding her still every time she gets poked. I never get used to it :(

God Gave me You

Its Father's Day. And I feel so blessed.

My kids' dad is amazing. He loves us all so fiercely. 

He protects us. 

He works for us. 

He prays for us. 

He loves us. 

Today is his day and he has spent it being a daddy. 

It's his day and he has spent it with our kids--letting me be a bit selfish and rest. 

Oh how I love him for it. 

We were outside relaxing while dru was napping. Over the monitor we heard her wake up. Bill was the one to go get her. He didn't know it, but I left the monitor on. 

The way he talks to our girl with such love melts my heart. And I am not ashamed to say that I listened to them bonding with tears pouring down my face. 

He is the only daddy my girl will know. I hope she will grow to realize how lucky she is. 

I gave up long ago on being the favorite parent. My boys have been their dad's shadow since they learned to walk. And I love it. 

I can't wait to see Dru do the same.  

Truth be Told

The truth be told, this biliary atresia biz blows. 

It's not always sunshine and butterflies around here. 

Honestly my girl's smiles are starting to be outnumbered by her tears. And that breaks my heart. 

My best friend is here visiting from out of state. Yesterday was the first time she has seen Dru since we first brought her home. The way our lives have changed in this short amount of time is crazy!!

Dru's limbs are skinnier as her belly gets bigger. 

She is not as content. 

She won't let anyone hold her for very long except me or Bill. 

She hates being put down. 

I thought I was doing okay until Jane asked me "how are you doing". I gave her my standard--"we are doing good".

 

Then she says "No really. How's your day to day?"

And I lost it. 

Sometimes I am very overwhelmed with the NG tube, the no sleep, the painful screams I can't fix, the lack of interest in eating, the diaper changes (whole wardrobe changes), the feeling like I'm neglecting my boys and husband, the yellow eyes, that PELD score that doesn't change fast enough!!!

So many people want to help, but they can't. She is so scared of people other than Bill and I. So the thought of leaving her ups my anxiety even more. 

What I'm most scared of is the fact that the worst is yet to come. If I can't handle this now, how am I going to be when the going gets really tough?

Well I have some answers for that thank goodness. 

1) Prayer. I'm a strong believer in prayer. I know I get strength from giving everything over to The Lord. It took me most of my life to really "get it", but who better to watch over my children when I don't feel good enough?

2) my Bill. This man is my rock. I can tell him anything. We don't have to agree but he lets me vent, and he is an amazing dad. My kids are so blessed. I am so blessed. 

3) My family. There is not a person in my family who wouldn't drop everything g to help. And even though there's not a lot for them to do right now physically, their love and support carry me through. 

4) My friends. What amazing friends I have. I can't imagine raising my kids without them. Elephant moms raise their kids together, and that's what we do. This is a shout out to my herd. You know who you are. 

5)Working out. Sometimes a good sweat is the best stress reliever. And usually when I run it's very spiritual for me so I get the added bonus of more prayer. 

All in all, I am so very thankful and blessed. Once in a while a bad day comes along and I let myself think of those damn what-ifs. But after a deep breath and a good talk , and a smile from Little Miss Magic, everything's ok again and we can take on the world. 

We are going to win this fight, just you wait and see. 

Random Awesomeness on this Random Thursday

Just a few random pics all from today. 

The support we receive on a daily basis is truly humbling. 

One of my favorite preschool students showing Dru some love. 

My mom and staff at the dentist office where she works.