Birthday Girl

Dru turned 1!!!!

We've been celebrating for a week. 

We started with a party at my mom's house last Sunday 

Lots of cake, cousins, and noise. Dru was wore out by the time we got home. 

The next day we had our clinic visit. We talked about cutting back the rate of her feeds to see if we can keep her from throwing up so much. And we talked a lot about the size of her belly. 

We decided to schedule another tap for Wednesday. We left the house at 6 am and planned on spending the day at the hospital. 

They were able to drain 1000 ccs off her belly!!! That is 1 liter. No wonder she has been so uncomfortable. I'm choosing to believe that the reason she keeps accumulating so much fluid is God's way of preparing her little body to have room for a new liver. 

As we were sitting in her recovery room waiting for her infusion of albumin to be done, the nurse came in with bad news. 

The fluid they removed tested positive for infection. 

We get to stay overnight (or longer). 

We'd be spending Dru's birthday in the hospital :(

I was really bummed. But I know it was the safest place for her to be. 

There are some perks to being in the hospital. The nurses love Dru and I can relax a little bit because I'm not in charge. Someone else is giving her medicine and hooking up her TPN. THey even change her diapers. 

And our friends still managed to find us in the hospital on her birthday. 

Thanks Peine's!!!!

She also got a stuffed horse and a stuffed elephant and more ballons from the Child Life volunteers at the hospital. 

But the best gift of the day was the test results that showed she tested negative for infection and we could go home. Thank goodness for antibiotics. 

We came home with new medications and a slightly smaller belly. 

2 days later we were finally able to celebrate Dru's birthday with a quiet "party" at our house. 

She opened presents from her brothers, and a sweet neighbor, Emily, who always makes sure Dru is dressed in style and gave her the movie BRAVE. I bawled like a baby when I saw it because who is braver than my girl?

There were also gift waiting for her from two BA moms that I have never met, but are so supportive. Thanks Kate and Jessica. 

I really wanted her to get down and dirty with her cupcake but this is the only reaction I got 

When this little fighter is well--we are going to have the biggest party ever and she can eat all the cake she wants :)

High Maintenance

Keeping Dru "maintained" takes a lot of work. 

And a lot of people!!

Here is a rundown of our past week:

Thursday--Dru's belly is getting bigger by the day. She is accumulating fluid fairly quickly after her last tap, so I've been on the phone with the liver clinic, pharmacy and home health nurse to make a plan. Dr. Jensen wants us to receive albumin and lasix through her picc at home, to see if she gets some relief

Friday-- IHC pharmacy delivers Dru's TPN for the week. Another driver brings her albumen and lasix. Home health nurse is here for 2 hours to administer the IV. Then has to come back 2 hours later to reprogram the pumps for the new TPN formula

Saturday and Sunday--family days. Busy, but no nurses or calls from the hospital. 

Monday--our regularly scheduled clinic visit. Labs first

Then a visit with dr. Jensen. Where she throws up on me and herself. 

We talk about her belly and how big it is and decide to try the albumin/lasix combo one more time and switch up some of her diuretics. Our doctor was happy to see that the TPN is doing it's job and she is getting some fat stores back. We decide to cut back on the rate of pregestimil in her NG tube to keep her from throwing up so much-she threw up 3 more times today :(

Tuesday--occupational therapist comes to work with Dru on her sitting/playing, and her oral aversion.  no nurse visits, just phone calls to set up for tomorrow. Pharmacy delivers her  albumen and lasix. 

Wednesday--nurse comes to the house at noon to run her IV for 2 hours again. Dru slept the entire time. 

Thursday (today)-- took Dru to UVRMC for a blood draw to check her renal panel. We have to wait about 45 minutes for a nurse to come and draw from her picc line.

 Waiting is better than a poke and hearing Dru cry. 

Hurry home to receive delivery of another weeks worth of TPN, which is another new mix, so our nurse came back to reprogram the pumps again :)

Now waiting on the liver clinic to call back with lab results and let me know of the albumin/lasix is doing it's job or if we are scheduled for another belly tap tomorrow. 

All in all, Dru has been in such a great mood this week and I can't complain about being bored.  We do our best to keep up with baseball, football and school too. Needless to say, my house is neglected and freezer meals are my friend. 

Exceptional

So I think I have fallen a little behind on medical updates for Dru. 

So much happens in a week!! 

So I'll try and catch up. 

Dru is tolerating the TPN really well. It's more a hassle for me to keep everything on schedule. We struggle with that around here because our son is very busy with sports and none of us like to miss anything. 

We are learning to plan ahead or that it's going to come down to one of us staying home with Dru. 

So we had been home from the hospital with a smaller belly and new picc line for a couple days before her belly really starting looking large and tight again. 

Dru is on 2 diuretics but by Wednesday she stopped having wet diapers. I was in touch with our liver team off and on all day coming up with a game plan. 

Finally we were told to go to instacare for blood labs and a bladder scan. Our instacare is not set up for ultrasound so off to the ER we go. 

Dru and I went by ourselves because I really didn't want my boys at the hospital til midnight so Bill stayed home with them.  

All the way there I kept going over "what-ifs" in my mind and was working myself up pretty good. I walked in to the ER and was so relieved that I knew the nurse from high school, I nearly cried. 

The instacare had called ahead so I didn't even have to wait. They started Dru's vitals and she cried so hard she peed!!! Boy, how I wish she had done that an hour earlier. 

We still went ahead with the ultrasound and blood draw. I'm thankful to the on-call GI doc at primary's who let the ER people know exactly what was needed. 

Needless to say it was a loooong night for Dru and I. 

Friday of that same week we were scheduled for our usual clinic visit, but because of the size of Dru's belly we just went right to ultrasound to get her belly drained again. 

8 days earlier they were able to get 600 mLs off her belly. 

This time they took 820mLs!!!!!!

She was feeling so much better afterward. It's been a long, long time since I've seen her in such a good mood. 

While she was sedated, they did a Doppler of her liver and found that her liver is collecting fluid. This can be typical of BA, but the fluid puts her at high risk for developing an infection. We were told that if she has a fever at all to start driving to primary's and get on the phone to the liver clinic on the way. 

I'm feeling her forehead constantly. 

There is a silver lining here though. Our awesome doctor, Dr. Jensen, applied Dru for exception points. 

We just heard this morning that she is approved for a PELD score of 30!!!!! Even if her natural score is lower, she gets to keep her 30 until December 10. 

This is great news. It hopefully means there is a light at the end of the tunnel. 

10 Things I Hate About You

10 things I hate about you, and by you, I mean biliary atresia. 

Or liver disease, 

Or any child being struck down with any kind of illness. 

1) Dru is 11 months old, and is frozen at a 3 month stage. We haven't experienced milestones like rolling, or crawling, or walking. 

2) My baby is getting thinner by the day. It is incredibly frustrating to see her arms so thin. Feeding her used to be the one thing I could control, and now I can't. 

3) No one is sleeping. She is up every hour at night. We are running on fumes most days. 

4) I can't enjoy it when she does happen to have a good nap. Because if she's not crying I'm questioning-Is she breathing? Did she throw up? Did she pull her tube out? ...(insert all neurotic mom thoughts here)

5) I feel tied up, or attached, all day long. During the day it's her feeding tube, at night it's the IV tube for her TPN. 

6) At a time when I feel I should be the most selfless, I am actually the most selfish. I'm missing my freedom. Not from being a mom--I love that. Freedom from being the mom of a sick kid. 

7) I have had to spend less time with my boys than I would like. My 13 year old is pretty self-sufficient and I have taken advantage of that. And my 5 year old has found a not-so-awesome babysitter in the form of an iPad. 

8) I hate that to get better, she has to get sicker. 

9) I hate that I am disappointed when her blood labs don't look worse so we can get more points. 

10) I absolutely hate that my perfect Gracie-Dru is sometimes labeled as a trial. She is an angel, her illness is the problem. 

I could list more. Like the poop and throw up. Sometimes both at the same time.

All the meds she has to take. 

Home health nurses coming here almost everyday. 

The Buddha belly that makes her so uncomfortable. 

The holding her still every time she needs a blood draw. 

Yikes!!!! I'm getting carried away. 

BUT...there are things we have gained from this adventure that I don't know would have come to me or my family other wise. 

1) Dru was adopted at 3 months old, and I worried that our bonding would be harder.

 Not true.

 It is bittersweet that she is so comforted by me...her momma. 

2) I can do hard things. At first, my biggest fear was taking care of Dru's hair. I wish that were biggest fear still. 

Then I worried about the feeding tube. No biggie. 

Now TPN. We're learning. 

What if no liver becomes available? My response to the hardest of all things will hopefully go unanswered. 

3) I have learned that attitude is everything. If I look for the bad, I'll find it, but we made the CHOICE to focus on the good. 

4) I have seen the good in people. Family, friends and strangers--all love my girl and our family. The amazing show of support we have gotten has humbled us in a way that we will never forget. 

5) Because our family is so loved, we feel a stronger desire to pay it forward. Even a word of encouragement to someone who is struggling can make such a difference. 

7) we have learned to make the little things big. Dru isn't reaching her typical milestones, but we sure find reason to celebrate other things. Friday night is a family movie night party. A Tennessee football game is a reason to dress up. A boating day means steak on the grill later. 

8)  it might not be date night, but I get to spend a lot of time with Bill. He hasn't missed a single doctor appointment or blood draw. We are blessed that his workplace is flexible with his schedule right now. 

9) I really hope my boys see the effort we make to keep their lives as normal as possible. We've rarely missed a baseball game, and if they go with us for a clinic visit we try and make it as fun as possible by taking the family to lunch and making a day of it. 

10) My faith has been strengthened beyond measure. I believe in miracles. When I am at my end, God is there to pick up my slack. What I can't handle, He does. 

11). I've also gained many friends that have had similar experiences and are a great source of support. 

12) I have found a cause to champion. I'm a huge advocate of organ donation. HEAVEN DOESNT NEED YOUR ORGANS, but angels here on earth do. Please consider being a donor. Go to organdonor.gov if you are interested or have more questions. 

Of course I would never wish for my girl to be sick. But I can't say that my life is not extremely blessed. I CANNOT wait for this adventure to be just a story we tell Dru someday. 

About how brave and strong she is. 

About how our family learned to rely on eachother. 

About how blessed we are to live in an age of modern medicine. 

About how miraculous it is that Dru and us were led to each other to be a family forever and to fight together no matter what.