A Tender Moment

I have no picture. This is not even about Dru. I really just want to get this out because I will never want to forget it. 

Last night was rough. Dru was up ALL night. Very uncomfortable and I had no idea what else to do for her. 

She and I were rocking in her room after changing a diaper and making sure her pump was working. I was frazzled, she was whimpering in her fitful sleep. I was soooo tired. 

At this moment, Bill came in and laid on the floor of the nursery and rubbed my feet. He doesn't know it, but I lost it. I quietly cried out my frustration and felt better for it. He may never know what that moment meant for me, but it's moments like that that gives me the strength to keep going. 

Dru's New Accessory

So I think I've been going about this feeding tube business all wrong. 

Yesterday was the day that home health was coming to place Dru's NG tube. It had been weighing heavily on my mind for a few days. Bill thankfully took the day off and sent me on a run (he knows me well). Running is my prayer time and I definitely did that yesterday. The answer to my prayer came to me in a different way. 

If you've ever watched Disney's "The Incredibles", think to the part in the movie where Mr. Incredible and ElastiGirl are arguing about Dash trying out for sports. The line from mom, "THIS IS NOT ABOUT YOU!!!" That is what kept playing in my mind for all of 4 miles. 

This feeding tube has NOTHING to do with me and my insecurities about having a sick baby. This feeding tube has everything to do with my Gracie-Dru and keeping her as strong as possible for what's to come. I need to change my thinking and look at her new accessory as a tool to saving her life. 

Having found some peace with the situation, it still sucked to watch them place it. It wasn't fun, she doesn't like it. Her brothers don't like it. I can't remember the last time Trey let me hug him while he cried. All of that is awful. 

But knowing that she is finally getting enough food, after weeks of watching the number of ounces she drank go down--that brings a peace I wasn't expecting. 

Now if only I can keep her from pulling it out...

PS--Dru's photo shoot on Monday was awesome. I'll post some pictures soon. 

Same Old, Same Old

I love spring. It's getting warm again. Time to plant flowers, do yard work, BBQ. And time for baseball. I love watching our oldest boy, Trey, play ball. 

I am so proud of him.

 

I absolutely love that every weekend is spent at the ballpark. And we talked all last year about how fun it will be to have our baby girl join the fun. 

We have no shortage of helping hands at the games. Our team is our family and we have gotten so much support from them. 

It always makes me happy when we can be as "normal" as possible with Dru's illness. Sure, it's a little harder sometimes. She is a little more irritable and not liking anybody other than mom right now, but it's very important to me that I can be with my boys and husband and Dru to do things that we have always done. I know there will come a time when she might be too sick or too immuno-suppressed to leave the house, so I'm not taking weekends like this for granted. I've always enjoyed these little traditions with my family, but now they have come to mean so much more. 

Lord, Give Me Strength

Sometimes I really want to give up. Sometimes it's really hard to hold it together. Sometimes I just do it so I can show everyone I can handle it all. 

But sometimes I can't.....

Today was hard. And it's really a silly reason. Home Health called today to come and place Dru's feeding tube. It was like a slap in my face--YOUR CHILD IS SICK!!  YOUR CHILD IS DYING , right before my eyes. 

I think I've been in a kind of denial until now. Now there will be a physical sign that she has an illness. 

I felt so unprepared even though I knew this feeding tube was coming. So guess what I did?  I totally lied. I put it off until next week. 

I had scheduled a photo shoot for Dru on Monday and I selfishly want some pictures of her without the tube down her nose so I asked them to schedule us for nurses on Tuesday. I totally lied  and I've been in a funk since. 

Maybe this feeding tube will be no big deal, but today it seemed like it is. I'm sad that my baby girl has to go through so much before she's better. I'm scared that she'll never be better. I'm tired of being positive all the time. Sometimes I just want to turn it all off. 

But then I hold her and know--SHE IS MINE. I will do anything for this angel. And one bad day does not have to be more than that. Tomorrow will be better. We will keep doing what we have to do, because really--what choice do we have?

Spring Break 2014

It's the first day of spring break. That means all the kiddos got to accompany Dru to her clinic appointment at Primary's today. 

Her lab results were about the same as last time so her PELD score is still 17. 

The monkey is not gaining weight though. So a feeding tube is in her near future. I am having a hard time with this. I am not excited to learn how to place a tube down her nose. But more than that, I'm sad that now she will look like a sick baby. No more denial for me, there will be a visual reminder taped to her cheek all day, everyday. 

On the bright side, we might all start getting more sleep if she doesn't wake up every 2-3 hours for a feeding. 

No more whining, we will take it a day at a time and be thrilled that she is as stable as she is right now. 

We are looking forward to our week together and celebrating this little man's fifth birthday tomorrow. 

Have a fantastic Spring Break!!!

Celebrate-It Sunday

The response to our Tshirt fundraiser has been overwhelming. We started out with a small goal of selling 50 shirts and maybe making $400. When our campaign ended, we sold well over 200 shirts and exceeded our monetary goal. 

This has now become much more than just the donated money. Now we are seeing our supporters wear their shirts and send us the pictures, and I'm overwhelmed all over again by the love shown for my baby. 

Friends:

Family:

And people I have never met, but now have a special place in my heart:

And tonight was awesome to go to my mom's house for Sunday dinner and have my entire family show up in their #littlemissmagic tshirts

Our family feels so blessed by the support and love and the things our daughter has taught us about all the good in this world. I believe in magic, and miracles, and family. 

Our Day-to-Day...is pretty awesome.

When I let my mind wander to the coming months in our lives, I get scared.  I get worried. I get quickly, and easily overwhelmed. I mean, a liver transplant is a pretty big deal. 

One thing that I have learned though during this adventure is to take it one day at a time. And our day-to-day is pretty awesome. And by "awesome", I mean pretty normal. Besides an extra medication or two, and her eating and sleeping habits, Dru is your typical 6 month old baby. 

She sleeps, she poops, she eats (not a lot, but often), she's getting teeth, and she's trying to roll if that Buddha belly will let her. 

My day is probably like most moms (although Bill is better than the average husband). I've usually gotten up 2-3 times in the night to feed the baby. Bill gets up at 6:15ish to get Trey ready for school so if Dru gets up about this time, he will feed her and let me sleep. I usually get up around 7 or 8, feed B and Dru breakfast. Then give Dru her morning medicine. And yes, we are sometimes still in our pj's til lunch. 

Dru will usually take a  pretty decent morning nap and that's when I workout. If I don't do it now, I will go to the gym when Bill gets home from work. 

Most days we just hang out at home unless we have dr appointments. And I still visit with friends and go on drink runs as needed. 

 When Trey gets home from school we either have baseball or housework, dinner, tubs, more medicine, then bedtime. 

We are delighting in the "normal" right now. And sometimes I do have to remind myself not to plan around the "what-if's". It's ok to think ahead to summer baseball trips, home improvements (or moving), 

Birthday parties, boating, fitness goals (this is my sanity), maybe an at-home job, Brevin going to kindergarten !!!!  blah, blah, blah...

I guess what I'm trying to say is that everyday is a blessing and we are trying not to take it for granted. We are prepared for what our future holds as best as we can be. We are just taking it all one day at a time, and grateful for it.