One Extreme to the Other

Wow, what a week!!! 

It's been a crazy emotional roller coaster for our family this week, and that's not all bad. 

Tuesday my little man started kindergarten. 

Up until Dru came to us, me and B were together all day everyday. Watching him go to "big school" is bittersweet. 

At least he still let me hold his hand on the way in 

Wednesday was an event we have been waiting to celebrate for a long time. 

It was our adoption finalization day!!!!!

We had to wait a little longer than usual because Dru was given her birth fathers last name at birth, so an extra effort was made to get his approval. He proved difficult to get a hold of. 

But the day was perfect. 

Everytime the bailiff went to check the hall for visitors, more and more friends and family came in. It was amazing to feel the support of so many people. Our case worker, and now dear friend, Hope was there too, which was so special. 

This is most of my family. Imagine the crowd we would have had if Bill's family were all able to make the trip from out-of-state!

The actual proceedings were fast and we just had to answer some simple questions with a yes or no. Even that had me bawling. Especially when the question is something like "have you bonded and learned to love this child?"

Absolutely!!!!!

The dress Dru wore that day is one from her belly momma. How can anyone doubt the love she had for Dru when she gave us a suitcase full of clothes that wouldn't even fit her for months to come? 

We even went to lunch afterwards at the same Olive Garden where we first met her 8 months ago. It brought back all the feelings I had when Dru was placed in my arms and I KNEW she was meant to be mine. Adoption is such a miracle from beginning to end. 

There really is no end. She'll be our miracle for eternity. 

After such a special day we also got to enjoy our "normal". And by normal, I mean chasing Trey all over the place to watch him play ball. This night happened to be football. This weekend is full of baseball. 

After the highest of highs on Wednesday, all the worry and stress of biliary atresia came rushing down on us on Thursday. But it was a scheduled thing so it wasn't the worst thing ever. 

Dru had her belly tapped again and a picc line placed in her arm so she can receive IV nutrition now. 

They were able to take 600 cc off her belly again. 

The picc line increases her risk of infection, but it also means no more pokes when they need blood labs, and she is getting nutrition straight to her bloodstream, and our team can now ask for exception points for her PELD score. 

She came out of her procedure about an hour later and her blood sugar was so low that she slept most of the day. After juice and some TPN her blood sugar looks much better. 

Staying the night in the hospital is never fun, but I'm always grateful that Dru is so well taken care of. 

Happily, this morning all her electrolytes were close to normal and we are headed home. 

Home health comes to our house tonight to educate us on her picc line and TPN. Something new to learn

I am just beyond grateful that I get to be this girls mom. It's not how I imagined it all to be, but she's here and she's ours. We are just gonna keep on keeping on til her gift comes. 

And then there's gonna be a party!!!

Top of the Class

Yesterday was our usual clinic appointment at Primary Children's Medical Center. 

We were told we didn't need to do blood labs this time since it had only been a week since Dru's last draw. 

My little man B, came with us again. He calls it the Long Doctor because it takes about an hour and a half to get there. I am grateful we are that close to one of the best children's hospitals in the country :)

Dru has gained weight. But not the good kind. She's collecting fluid again in her belly. We have maxed out her diuretics, and if there is not a significant change by Friday we will talk about doing another tap. 

It also seems like she is taking in less and less formula even with the NG tube. Too much and she throws up. 

We are getting closer to IV feeds I think.  It has it's pros and cons.

 An IV means more risk of infection. And if she has an infection they can't perform a transplant. It also makes it easier to collect fluid in her belly. 

On the other hand, the risk of infection can give us exception points to add to her PELD score. And she pulls her NG tube out nearly everyday so I'd love to be done with that, although the tube makes medicine time quick and easy. 

This is a decision we are not taking lightly. Right now our doctor supports whatever we decide. Eventually, I think the TPN is inevitable. 

2 very positive things came from yesterday's appointment though. 

Her face is really itchy from the bile in her blood so we got to try Benadryl last night, one of the side effects was that Dru slept so much better. She was only up 2-3 times, instead of 7 or 8. 

And we were told, that even with a 19, Dru is at the top of the transplant list for babies in our region with her blood type. 

Dr. Jensen also wanted us to go ahead and do labs anyways. Her 19 jumped back up to 24!!!!

Overall, we left the hospital feeling more hopeful than we have since the false alarm. 

I think I'm catching a very faint glimmer at the end of the tunnel. 

PS--Dru loves watching trey play football

Ups and Downs Continued

Got a phone call from our doctor today. After Dru's blood labs yesterday, her PELD is back down to 19. 

Probably because of all the albumen she has been given through IV's lately. 

I hate that I was disappointed. 

I should be happy that she's stable. But I selfishly think that I don't know how much longer I can feed her through a tube and function on so little sleep. 

The answer, of course, is that I will do it for as long as I have to. 

It's just a downer to think that just 10 days ago we were sitting in a hospital room waiting for her surgery. 

Life is crazy. 

But on a positive note, we finally have a date for our adoption finalization. We have been waiting longer than usual because the birth father has disappeared. We are hoping that won't be an issue with the judge 😁

Ups and Downs

My baby has had 3 blood draws this week. Poor girl. 

Monday we had to check her kidney function because of all her new diuretics. Everything looks great. 

Thursday was our normal clinic visit. They had to poke her twice because one of her veins just couldn't give anymore blood. 

She screamed more than ever before. She's getting more aware of what's going on. 

We got to visit Dr. Jensen after labs. With her new bloodwork, her score went from 28 to 23. Boo. 

But she continues to lose weight. She is now being tube fed 20 hours a day. No bueno. 

She's not tolerating more than twelve ounces per feeding. Anymore than that and she throws up, so TPN may be in our future. 

She has also lost interest in all bottle feeding and has thrown up the last couple times we've tried to feed her crackers. :(

I absolutely hate watching her getting skinnier!!

Her oxygen level is also different when she is sitting compared to laying. We might be doing a sleep study soon to see how labored her breathing is when she sleeps. 

On the bright side, we got to travel together as a family to go watch Trey play in his last baseball tournament before school starts. 

It was just an overnight trip, so it was short and sweet.

She did throw up at the ballpark, and pulled her NG tube out. That's always a good time to put that back in. But Bill and I make a good team. 

Really I am just happy she's still able to go on trips with us and that we make the effort. The extra work is worth it and it does seem to take an extra day for her to catch up on her rest, but we are making family memories and that's important. 

Today we had to take her back to the lab for more blood work before we have to update her score tomorrow. 

Hopefully, it won't go down as much. Our doc thinks it was such a big drop because she received so much IV fluids in the hospital last week. 

Crossing our fingers that her numbers are worse--how messed up is that?!?

Positives

I just wanted to make sure that I remember the positives from yesterday, because there were actually quite a few. 

1) I absolutely love, love, love our liver team. Dr. Jensen, Barb, Sharon, Holly, Zack, and 2 or 3 new people we met yesterday. All are amazing and talked us through everything. 

2) Kim Phillips. He was our nurse coordinator who has held our hand since day one. He took a new position at  U of U recently, but he still took the time to send me an email yesterday. And in typical Kim style, he knew exactly how many days we'd been listed. 154 days if you're curious. 

3) every single family member that lives close offered to take my boys for as long as needed. They stayed with Bill's sister this time. I know when the transplant really happens, everyone will get a turn. 

4) speaking of Bill's sister--when we dropped the boys off, Kim had a sack and a cooler full of food and drinks for us. So thoughtful. 

5) the number of texts and messages offering prayers and good wishes just floored me. A few people mentioned they were wearing their "I Believe in Magic" shirts for good luck. 

6) we also learned that Dru can tolerate going without food really well. She didn't get cranky at all. So I will have less anxiety about that the next time. 

Also, I just have to say I have an amazing support system. My family, my friends, people we've never met. In fact, another liver mom had a stuffed pony sent to our room for Dru. So sweet. 

And another awesome show of support this morning-- my family, my parents and my brother had all signed up to do a fundraiser 5k for organ donation this morning. Our little family was exhausted after yesterday, but my parents and brother still went to represent Little Miss Magic. I sure love you guys. 

Dress Rehearsal

As far as dress rehearsal's go--WE NAILED IT!!!!!

Dru was a champ all day. 

Through all the IV's, chest X-rays, vital signs, and fasting, she was an absolute champ. 

Today was crazy emotional. I was on the verge of giddy and near tears the entire time. 

I was so excited at the thought of a recovered Dru. A Dru that can sit and roll over and play without getting exhausted. 

I was grieving for the family of the donor as we learned the few details we were allowed to know. 

I was anxious at the thought of that moment before surgery when they take Dru from my arms. 

I was anticipating the moment I would see her in PICU. Recovering, yet hooked to so many wires and tubes I wouldn't know where to touch her. 

So when were told at t-minus 2 hours til the procedure that the liver was not ideal, it felt like a punch to the gut. 

But only for a minute. 

It was awesome to see how every person on our "team" only wants the best for our girl, and were not willing to settle. 

It was reassuring that they have confidence we will be returning soon. 

It was just plain AWESOME to be lifted up by the prayers and kind words of family, friends and strangers. 

That is what I am most grateful for this day. Those prayers and wishes, or whatever you want to call it, were granted today. 

My beautiful fighter deserves the best and that's what we will keep aiming for. 

My heart is full of gratitude, hope, love and peace. Our adventure is meant to continue. For what reason? We may never know. Maybe to help others become more aware of organ donation, or someone who is struggling can relate. I know I have grown so much these past few months, and I probably have more to learn. This experience has been a life-changer for sure. 

For now we will keep on keeping on, and treasuring all that life has to offer.