God's Hands

I woke up this morning at 5 am. 

The same time I've woke up every morning for the past 40 days. 

This is the time for a vitals check and some meds. 

But my baby is in God's hands this morning. 

A place where she deserves to be. A place where I feel I am being held also. 

I'm not ready to write the details of her death quite yet. But I will soon because I don't want to forget. 

So I will leave you with this sweet message sent to me by a friend:

Hey. I read this tonight and thought of you. 🐘🐘🐘

"There was a group of women in a Bible study on the book of Malachi.  As they were studying chapter three they came across verse three which says, "He will sit as a refiner and purifier of silver." This verse puzzled the women and they wondered what this statement meant about the character and nature of God.


One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study. That week the woman called up a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that, in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest so as to burn away all the impurities.

Silver smith putting heat to a silver bowl


The woman thought about God holding us in such a hot spot - then she thought again about the verse, that He sits as a refiner and purifier of silver. She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. For if the silver was left even a moment too long in the flames, it would be destroyed.


The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"  He smiled at her and answered, "Oh, that's the easy part -- when I see my image reflected in it."


If today you are feeling the heat of the fire, remember that God has His eye on you. He is holding you.

Be the Light

A week or so ago I wrote a post about a nurse telling me "you are the light" when I was saying I didn't like being part of our potential donor family's sad story. 

http://lifelovelaughter5.blogspot.com/2014/11/you-are-light.html?m=1

Well I've been thinking about it. And our donor and his/her family are going to be the light in our sad story. 

The great thing is that every single one of us can "Be the Light"

I will admit that I did not give a second thought to organ donation until my own child was in need of a transplant. 

I had said yes on my drivers license, but never knew there would be a need for organs from children. 

I can completely understand why there are not a lot. 

Imagine your child is ill and dying, or tragically killed in an accident. Your world is ending and you are approached with the question of donating your child's organs. 

What an emotionally charged moment to be making such a big decision. 

I can imagine what some responses may be. 

I wonder what my answer would have been had I not needed someone to say yes to save my girl's life. 

I hope I would have said yes. And I will say yes if, heaven forbid, I am ever faced with that decision. 

I encourage you all to make that decision NOW. Know what you would answer before it becomes a reality. 

Hopefully it never is your reality. 

Also, if your child needed an organ to save his/her life, would you take it? 

If yes, then it's reasonably expected that you'd be willing to donate. 

A great place to register or find answers to questions about organ donation is 

http://www.organdonor.gov/index.html

This is is the face of organ donation for me::

I encourage everyone to "Be the Light" for someone in need. Let's eliminate the waiting list.  

A Hard Day's Night

My baby is suffering from hepatic encephalopathy. 

You can read more about it (if you dare) here http://en.m.wikipedia.org/wiki/Hepatic_encephalopathy

Basically the highlights are she sleeps all day and is up all night. 

And when I say up, I mean up screaming and irritable. And so itchy that she has scratches all over her nose and in her ears. And her clotting time is so bad that these tiny scratches take forever to stop bleeding. 

The worst of it is that she seems confused while all of this is happening. She will occasionally get this glazed look on her face and just stare off into space and acts like she doesn't recognize any of us. 

My heart breaks that I can't hold her and rock her to make her feel better. She won't let me. And she just tools back and forth in her crib if I lay her down. 

It's getting harder and harder for Bill and I to out a positive spin on things. 

Once in a while, I'll catch a glimpse of my girl. Her happy soul is fighting this disease with all she's got. 

And I have to say I am so grateful for the great man I'm married to, He could tell I was pushed to my breaking point the other morning--I was walking the hospital halls at 5:30 am because the screaming was making me so frustrated. So he stayed the night with her the next night (and it was a rough one). I was able to come back yesterday feeling a little more recharged. 

I will say that now that I know what to expect with the sleepless nights that I am a little more patient about it. And last night, our nurse's tech rocked her for a good 3 hours so I could get some sleep. 

Dru's gift of a new liver cannot come to her soon enough. 

Lifted Up

About two months ago I had a conversation about prayer with a friend of mine. And she said something interesting to me that has stuck with me for a while now. She said something along the lines of "I'm not sure what to pray for if it won't change God's will"

I admit that that stumped me. I had never really thought of that before. 

But I've thought of that a lot since. 

And it's changed the way that I pray. It's made me more mindful of what I'm really asking God for. 

In Dru's case I used to pray for a liver. Essentially, that means I was praying for the death of her donor. I realize it may not be as cut and dried as all that, but I don't want to think that my prayers are fighting with the prayers of the family who is losing their loved one. Does that make sense?

So now I pray for strength. 

Strength for my girl to keep fighting until her gift is available (in God's time). 

Strength for Bill to be able to hold us all together. 

Strength for me to accept whatever God's will may be. 

And so far, that prayer has been answered. That's what gives me a reason to be positive and hopeful through each new twist and turn of this transplant adventure. 

Today was a perfect example of that. We came back to Dru's room this morning to a party. Nurses, our GI resident, my sister, techs, an ENT guy, and my baby girl with blood oozing from her mouth and a big bandage on her nose. 

Her clotting time is so bad that her mouth was full of blood from something they couldn't see, and a scratch on her nose just won't scab over.  

Also her breathing is getting faster. And her belly is getting bigger. 

So we are now semi-permanent residents of the PICU. 

Yes I wanted to cry. And I still might. 

I never thought we'd be here. I was hoping we'd beat the odds and skip this part. 

But it's got it's perks. 

Dru will have a nurse watching her constantly. 

She'll be safer. 

We get a change of scenery with the new room. 

Dru now has a new unit of nurses to charm :)

So I guess what I'm saying is, that even though she's getting sicker I don't feel scared. I worry, I'm stressed out, but I know she'll be ok. That me and Bill and the boys will be ok. 

How can I not feel hopeful when I'm lifted up by God's strength. 

How can I not feel blessed when my family finds support from so many. Family, friends, and strangers alike. 

Two great examples of the support we receive came just this weekend. 

1) an amazing woman I came to be friends with through Instagram wrote an incredibly powerful post about our family. I was very touched by this. To read it you can go here : http://www.fitmamamoxie.com/2014/11/let-this-family-story-inspire.html?m=1

2) my brother ran in the Ragnar relay last weekend. His team ran in Dru's honor. They all wore shirts that said "I believe in magic" with #running4herlife on the back. As they crossed the finish line they shouted "I BELIEVE IN MAGIC!!"   Marshall, my brother ran the last leg of the relay and facetimed with me during his last mile. I was sitting here at the hospital rocking Dru. To hear him say he was proud of me and loved me made me cry. It meant a lot to me ❤️❤️

I will pray for continued strength. And I also have a heart full of gratitude for all the prayers offered on our behalf. And all other shows of support. We may not see everything but we feel surrounded by love. 

Thank you all. 

The Calm Before the Storm

I feel a storm brewing. 

It feels like things are going to get worse soon. 

There was talk of moving Dru to the PICU soon. 

Her PELD is now 51, and all the nurses in our unit are amazed that with a score that high she hasn't been to the PICU already. 

Her clotting time is terrible and she throws up any kind of food or medicine on her belly. It's heartbreaking to hear her scream and know that the retching causes her so much pain. 

Tonight my sister stayed with Dru, and I am home with my boys. I have a feeling that it's the last time Bill and I will be home at the same time until Dru is better. 

I'm going to do my best to enjoy it, even though half my heart is with my girl. 

You are the Light

Some days here at the hospital are not so bad. Aside from lack of sleep and feeling tied to machines, we are mostly just bored. 

But some days are flat out hard. 

I know Bill and I have each had our moments of breaking down. 

It's like all the little things build up and I feel overwhelmed and I have a good cry, then I can smile again, and see my blessings, and keep going. 

I had a rough night about a week ago and I want to pour my thoughts out here because in the end I learned something beautiful and I want to remember it for myself and for Dru. 

I don't recall the actual events of the day. But I do remember it being around 9 pm and I was rocking Dru in the same recliner I've been rocking her in for almost a month. I remember missing my boys and Bill, and thinking "is this real life?" 

Our nurse was in the room to give Dru her many nightly meds and casually asked how things were at home and how our boys were. 

Now I didn't breakdown immediately, but I was talking around a lump in my throat when I told her how awesome Bill is at being both dad and mom right now. Not to mention an amazing husband. It is not lost on me how blessed I am. 

And I didn't shed a tear while I told her how Dru came to be a part of our family. 

Then we started talking about our wait for a liver.

 I am really struggling with the fact that someone (probably a child) has to die for my girl to live. 

I told her that waiting for a donor and waiting to hear there was a baby to adopt are very similar. 

I struggle daily that I benefit from someone's trial. 

I struggle daily with the idea that we are a part of someone's sad story (both birthmom and donor family)--

Here is where my nurse, Christie, stopped what she was doing, put her hand on my arm, and said 

"You are the light"

Cue the waterworks here.  I never looked at it in that way before. I hugged her for a long time and just simply thanked her. 

All of a sudden I was free of the burden I put on myself of feeling like I was taking something from another family. 

It's a beautiful idea to think that maybe in some small way we can give light to someone else who has given us everything. 

Since that night in our hospital room, I have had many moments of feeling overwhelmed by this adventure. 

But those words "You are the light" , play in my mind  and I can hang on for one more minute, or one more hour, or one more day. 

Whatever my girl needs. 

One Fine Day

Today has been crazy. 

Dru had a terrible night and hardly slept. She got a bloody nose in the night and because her clotting time is so terrible it wouldn't stop bleeding. She ended up swallowing a lot of blood and that made her throw up a lot. 

When I called Bill this morning to check on him and Dru he said he was glad I wasn't here because her bed looked like a warzone. They changed her sheets 4 times. 

They have her a transfusion of platelets this morning and replaced her ng tube. They had pulled it at around 2 am because it kept irritating her nose bleed. 

Her increased INR number bumped her score up to 46. We get to keep that for 2 weeks. 

Then on my way up to the hospital, my car died on the freeway. Luckily I was able to get to the side of the road. 

Bill was at the hospital with Dru so I called my brothers to come get me. Bill called the tow truck and my brother let me borrow his car to get to the hospital. 

Once I got here bill went home to the boys. I've never seen him so tired. Poor guy. 

Dru is getting another blood transfusion right now and sleeping great so far.