The Good, the Bad, and the Ugly

Yesterday was Dru's clinic appointment at Primary Children's medical center. I just love that place. There's a spirit there like nowhere else. 

I think that peaceful feeling is lost on Dru when she's getting bloodwork done though. It's never fun, but always necessary. 

Yesterday's visit was pretty standard. 

Go to the blood lab for her standing order of blood tests. 

Ride the elevator to the second floor to the GI clinic. 

Dru screams at me as I undress her to be weighed and measured. 

See our fave doctor, Dr. Jensen. And wait for labs to come back to let us know what Dru's current PELD score is going to be. 

THE GOOD: Dru's score went up by one. She is now at 19!!! 

I love when her score goes up without any negative effects at home. 

She did only gain 3 oz, so we are upping her calories. This means more time on the feeding pump but totally manageable. 

THE BAD: Our nurse coordinator, Kim (who we lovingly call Frazier), is leaving our clinic for an awesome new position at the U of U. 

This is the guy who practically held our hand through the first couple of weeks of learning about this grand adventure we are on. He always answers my crazy emails about what's "normal" or OK. He is extremely intelligent and had a way of explaining things to us so we understood.

"Frazier" will be greatly missed. 

THE UGLY: There is no ugly!!! My babies are the cutest around. 

Dru's Maiden Voyage

Finally!!!! 

We made it to the lake today. In fact, I'm writing this as we float. 

Our family loves to boat.

 The wakeboarding, the wake surfing, the swimming, the sun. 

But mostly I love that my kids are forced to spend time with me. I mean there are not a lot of places for them to escape on a boat. :)

There was a lot of anxiety leading up to this first boating experience with Dru. 

She seems to be easily overwhelmed when she is out of her comfort zone and you never know when she will have a diaper incident that requires all involved to need a bath. 

She hated the life jacket. I mean screaming uncontrollably for a good five minutes kind of hate. 

But she got used to it. In fact she is sleeping so well right now.  If I remember right, the waves had the same effect on B when he was a baby. 

The hardest part of this trip has been how obviously enlarged Dru's belly is. You can actually see the outline of her liver. It makes me hurt. 

On the bright side though, she is stinking adorable in her swimsuit and sunhat. 

Here's to hoping we have many boat outings in our future. 

Lifted Up

Sometimes I think that Bill and I are not normal. Or maybe we are just lucky. 

Dru is a very sick baby, but we don't see it. 

Dru is fighting for her life everyday, and at times that can be overwhelming. But for the most part, we just have this amazing sense of gratitude that she is here. And, more importantly, that she is ours. 

I sometimes feel like maybe we should be more worried or sad, but we just aren't and I can't really explain it. 

I do have some theories though:

1) Dru herself is a healing soul. 

She has a spirit about her that just makes you love her and know that she is special. Not more special than my boys, just different. 

Her smile cancels out EVERYTHING. The sleepless nights, the feeding tube, the blood draws, and the frustration of not knowing what is hurting. 

2) As a family we decided to focus on the positive and try to live as "normal" as possible.

Yes, the first couple weeks after learning about her illness were hard. A lot of tears, a lot of weak moments. But ultimately, we realized what a blessing Dru has been to our family. 

It is a little harder to do our day-to-day activities, but we try, and that's what's important. We have been so fortunate so far to have Dru at home and be able to participate in all our family activities. 

It takes extra planning. We may not be able to stay at events as long as we'd like, but we are trying. 

I know there will come a time when Dru is too sick to attend ballgames or family dinners, so we will enjoy the heck out of them while we can, even if it's harder. 

3) Most importantly, our family, especially Bill and I, have learned to turn our troubles over to The Lord. 

There is a peace in our home that has never been here before and It is what keeps me strong and positive everyday. 

I am often reminded that I can't do it all, as much as I would like too. But who better to turn my cares over to than my Savior? Who better to watch over my children when I feel like I'm failing?

Dru's full name is Gracie-Dru Symone Shipley. Her first name (Grace) is no accident. 

We know that it is God's grace that brought her to us, and it will be His grace that carries us through this adventure, and all our future adventures. 

Milestones

With all the excitement of weddings and graduation around here I forgot to post about Dru reaching a pretty awesome milestone. 

She is starting to sit up by herself!!!! It's only for a short amount of time but we are pretty excited. 

The size (52 cm) and weight of her Buddha belly has made her a little slow at developing--she can't roll and because she is high-centered on the belly she can't crawl. 

I know once she gets her transplant she will hit these milestones too, so I try not to stress it too much. 

Soon I might be wishing she'd just hold still. Really though, I can't wait to see her bouncing off the walls. 

Click

I have caught myself wishing that I could push Fast Forward on my universal remote and push Play again in about a year when (hopefully) Dru will be on the mend from her transplant. 

Then I feel guilty because that also means speeding through my boys' lives and with them I just want push Pause. Threatening to freeze them so they don't grow up has stopped working. :)

We were able to attend some beautiful events here lately that have helped me to realize that I really don't want to speed things up and miss what's really important. 

My niece got married and my baby boy graduated from preschool. I am so happy that Dru is well enough to go to these family events still. When we first heard her diagnosis I thought she would be missing out on so much, so each time she goes with us (even just to the ballpark) it makes the day even more special. 

The wedding was beautiful. And Dru was awesome. She slept through most of it. Until we got to the car....

If any of you have a child with liver disease you know that their poop is not normal. It's very loose...Let's just say I did not go home in the clothes I left in. 

Thankfully Dru's dress was spared. It's made from a pillowcase my grandma Joe made me when I got married. Needless to say, Dru and I headed home for a shower and a tub. 

The next day was Saturday and that almost always means baseball. Dru was so happy this day. It was a great day. 

Last night my littlest man, Brevin graduated from preschool. It was bittersweet to watch. I was his teacher til last year so it was different for me being in the audience, but nice that I only had to focus on him. He's pretty much awesome. 

And thanks to my mom for taking a family picture of us. I really wanted one at the wedding but we all know how that turned out ;)

As much as I want Dru to be all better and running around feeling good, I will keep trying my best to keep our life as "normal" as possible.  Our "normal" is pretty cool and I want to savor every moment I get with these kiddos. Oh, and Bill is a good guy to hangout with too. ❤️

Twice the Love

Yesterday we celebrated Mother's Day. Breakfast in bed, out for lunch and some shopping with the family. It was my first Mother's Day with Dru and I loved that. 

The Saturday before Mother's Day is Birth Mother's Day, and this was a first for me. 

When we first began our adoption adventure, my #1 fear was "sharing" MY baby with a birthmom. I need not have feared. We were blessed with the most amazing belly momma ever!!!  She is a strong, brave, intelligent woman. And she LOVES Gracie-Dru. She loves her so much, she knew she couldn't give her what she needed. And she chose me (us) to raise her baby that she loves so much. Can you imagine doing that? I can't imagine the strength it takes to do that. 

Our adoption was not typical because Dru lived with her belly momma for 3 months. They shared experiences that I will never be a part of. And that's ok. In fact, those memories are the least I can give her first mom. After all she gave me the gift of completing our family, and we get to make new memories. 

I missed her birth, but I get her every birthday. 

I missed her first cry, but now I get to soothe her. 

I will hear her first words, see her first step, and be the first person she sees when she wakes up with a new liver. 

And I will share all these moments with her birth mom as best as I can because something wonderful happened--I love her too. It's like she is a part of our family too and it's an extra blessing because I wasn't expecting it. In fact, I got a surprise message from her yesterday wishing ME a Happy Mother's Day and thanking ME for loving Dru. How humbling is that?

And what a lucky girl that she is loved by 2 moms!!!

Feeding Tube Fashion

Ever since we knew Dru would be getting a feeding tube placed I've been trying to think of ways to make it less, well less ugly honestly. 

I googled "how to bling my NG tube"

My sweet sister-in-law did a search on Pinterest 

Kortni brought up the word "bedazzle"

BUT it was my sweet husband Bill that came up with the winning idea. So simple and doesn't keep me from seeing if her tube is blocked. 

We cut the bottom layer of tape into cuter shapes. Today she is sporting a baseball and a heart. We'll change it up next time. 

I think she can rock it. ;)