Certifiable

You know it's really not fair that I have my baby's death certificate before her birth certificate. (Still waiting on the arrival from PA since our adoption finalization). 

Choices

Bill and I had to make a lot of choices last week. 

We had to choose our baby's casket, where she would be buried, what she would wear, who would speak and pray,  and the flowers that would make it all beautiful. 

Everyone involved made the whole process as easy as possible, which I will forever be grateful for. 

Next we had to choose the music for the service and pictures for a DVD. 

I will say that all the planning and decision-making made the days fly by without a lot of dwelling on the fact that Dru is gone. 

It's the nights that are hard.

 Bill especially misses her in the evenings, I think because that's when he would spend the most time with her. 

I'm not sleeping that great. I don't think Bill is either. Dru never was a great sleeper so I think we are still on her schedule. And once I'm awake I just replay her last day in my mind over and over. I hope it plays itself out soon. 

One choice we made last week that we were adamant about is that her service was not a funeral. It was a celebration. We refuse to mourn her life. 

She is amazing

She is love

She is an angel

She changed our lives

Those are the things I want to focus on. 

My brother made a DVD with some of our favorite pictures of her and some happy songs that always remind me of her. 

Here are some of the cousins watching it:

We wrapped her in a beautiful blanket made for her by her cousin Addie and our immediate family each placed a memento in her casket with her. My little B gave her a Minnie Mouse and my big boy, Trey, wrote a message only he knows on a baseball. Both so appropriate. 

Then we moved to the chapel for the tribute part of the celebration. Both grandpas did a fantastic job with their talks. 

Bill's niece, Amy, sang Amazing Grace, and it was beautiful. 

Then my best friend, Jane, read Dru a letter from me. http://lifelovelaughter5.blogspot.com/2014/11/a-letter-from-mom.html?m=1

Everyone we loved was here. Including our liver team, some of our favorite nurses and techs, and our social worker from the adoption agency, Hope, who has become such a dear friend. 

Now it was time for the graveside ceremony. I really did not want this part to be sad. I know in my heart that Dru was not in that casket so I didn't want to get all dramatic about her being in the cemetery. 

That's not where she is. So we made the choice to send messages to heaven. 

Everyone who was there got to write a message and attach it to a balloon. Once the grave was dedicated, we released the balloons. 

I loved it. 

Now we have new choices to make. We have to choose how to go on without her  

We will never really be without her. She will always be with us. 

All through this adventure, I have said that we have made a conscious effort to look on the bright side of things. 

We are CHOOSING to still do this. It's hard, yes. But so worth it. 

Being sad or mad and angry does none of us any good. And I feel that emotions like that are not very welcoming to the angel I want to visit often. 

So I choose happy. 

A New Adventure

http://brookiebefit.blogspot.com/2014/11/little-miss-magic.html?showComment=1416723260265&m=1

A Letter From Mom

Dear Dru,

I hope you know how loved you are. It's so easy for me to look back and see how God was preparing us to welcome you into our family. The timing was perfect, the wait was worth it, and the first time your dad and I held you--there was no question that you were our girl. And our life has never been the same since. 

From the very first, you have captured the heart of everyone who saw you. Your smile lights up a room. 

You saved your biggest smiles for your brothers. In fact, Trey was the only one you'd smile for in the beginning. And even on our toughest days, you would still light up when he walked in the room. You didn't miss any of his baseball games if you could help it. 

You loved to watch Brevin play. It didn't matter what he was doing, you kept your eye on him. He would say "Hey Baby Girl" in his cute little voice, and you'd giggle. Your laugh is one of my favorite things. 

But it's your dad that you had wrapped around your finger from the first time he laid eyes on you. And there were tears in his eyes the first time he held you. He likes to tell people that you are his personal angel, that you taught him how to love everyone, that you made him a better person. Silly Boy doesn't realize how great he was to begin with, but loving you brings out the best in all of us and you make it easier for us to show it. You are so blessed to have him for your dad. 

Baby Girl, I miss you so bad, but I have no regrets. I learned so much from you. I've learned to appreciate every little thing and to find joy in my life-no matter what. I love being your mom. I love knowing that it was me who could comfort you and that I got to carry you, and rock you and smother you with love Every. Single. Day. You and I have so many moments together to fill a lifetime, and there are more to come. 

You are the light Baby Girl, and I will look for you in the stars at night and feel you in the sunlight everyday. You will forever be our Little Miss Magic, and because of you, our simple things have become magical. We've learned to take nothing for granted and to not wait on our dreams. 

Your dad and I are often told how lucky you are to have us. Just the opposite is true. We are lucky to have you. YOU have blessed us. You were our gift. 

I am beyond grateful for a Father in Heaven that loved me enough to let me be your mom. I am grateful that He loves me enough to let me be your mom forever. 

We will see you again. In the meantime, keep an eye on us. Help us to keep a smile on our faces just like you did. 

A smile that changed our world. 

Love you forever,

Mom

Dru Earns Her Wings

In less than 48 hours we will lay our baby girl to rest. 

I keep reliving her final moments and I don't want to. That's not how I want to remember her. 

I'm hoping that after putting these words out into the universe, that I can focus on our happier times. 

Our last day together was rough. 

It wasn't pretty. 

It wasn't gentle. 

It was so far from what I wanted. 

My first clue that something was wrong was that Dru slept through the night. I can probably count on one hand the number of times that happened in her whole life. She was so tired and her breathing was getting faster and more shallow. 

Dr. Todd was worried too and was checking on her all night. 

By the time morning came, I could see Dru's chest sink in with every breath. The decision was made to move her to PICU to help her breathe. 

We got to ICU and there were so many people in the room. I stood to the side to be out of the way. 

The respiratory therapist tried to put a mask on Dru's face and she screamed and fought it. So they decided to try a bigger canula for her nose that would force more air into her lungs. When they placed it in her nose, her nose started bleeding. I made my way to her to wipe the blood and it didn't seem to help. 

About this time, Bill texted me to say he was at the hospital. He was planning on staying the night so I could go home. He wanted  me to meet him in the cafeteria for lunch. I told him to come up to PICU because I didn't want to leave her. I remember feeling like this wasn't like the last time. This time I'm scared. 

2 minutes later, I saw Bill outside her room. I went to him and cried. Still, the only worry at the moment was her breathing. 

When Bill and I were still outside the room they decided to try to sedate her so they could intubate her. 

Before they could even sedate her, we heard "I need a pulse check" and then the code blue. 

We've been in the hospital for 40 days. We know what a code blue means. 

We were pushed to the side as nurses and doctors came running. 

Running to my baby's room. I've never been so scared in my life. What in the world is happening?!? We were only here to help her breathe easier. 

One of the doctors would walk over every minute or so to keep us updated. Apparently Dru was bleeding from an unknown source and it was coming out of her mouth and nose. They were performing CPR on my baby. The mental image of that is too much to bear. 

Our social worker, Barbie, and nurse coordinator, Holly, came running within 5 minutes after Dru coded. Barbie was by our side and Holly was right in the thick of it. 

They gave her blood, they kept doing chest compressions, I kept thinking she'll pull through. Every 2 minutes they'd stop everything and do a pulse check. It was there, but weak. 

After about 20 minutes, another doctor came over to update us. I heard the words "we're not getting her back"

I lost it. 

Bill lost it. 

It was our own personal hell. 

I couldn't believe that she was gone. All of this fight? To have it end when we were so hopeful. I HATE this disease. 

Dru's heart was still beating slowly when they wrapped her in her own blanket and placed her in my arms. I was blessed to be holding her when her heart beat its last. She was so calm and more comfortable than I'd seen her in weeks. She had her hand curled up against her cheek like she was sleeping.

 Bill and I have never cried so hard  in our whole lives. 

We spent the next hour taking turns holding her. Inspecting her fingers and toes. Her curls. 

Barbie was kind enough to call both our moms so we knew family, our boys, were coming soon. It was time to clean her up.   

Bill and I, as painful as it was, bathed our baby girl and washed her hair. I could never forgive myself if I didn't do this for her. I wanted to wash away all evidence of the traumatic exit she experienced. I wanted so badly to make her pretty for her brothers. 

While we were bathing and dressing her, different members of our liver team came to pay their respects.

 She was so loved. Painful and beautiful all at once. I consider so many people at this hospital as members of our family. 

My parents were the first to come, followed by Bill's mom and dad, who brought our boys. Ouch. 

I told Brevin that Dru was gone to heaven and Trey broke down. He doesn't cry often, but my big strong boy broke down and I love him for it. 

Never has a sister been more loved by her brothers. I ache for my boys. 

We held Dru and loved on her for the next few hours. My sister and brothers came. All had their time to say goodbye. 

It was painful. 

It was awful. 

I hated every minute of it. 

I hated that I could feel her little body getting colder, and I knew it was time to leave her. I kissed her forehead one more time and Bill did the same. Then I laid her  in Barbie's arms and we walked away. 

 

Ouch again. So so painful. My heart literally aches. How can I go on?

How can I not?

I was blessed (am blessed) to be the mother to the brightest light I have ever witnessed. My girl's smile changed all who knew her. My girl changed Bill from a good man, to the best damn guy I know. My life and attitude are forever changed because of the love I give and the love I receive from this most magical angel. Fly high baby girl. Please come and visit me often ❤️❤️❤️

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. 

The Empty Chair

This is the chair I have rocked all my babies in. 

I will keep this chair forever. 

I cannot possibly count the hours we have spent in this chair staring at their perfect faces, wishing we were in our bed, knowing these moments with our babies are temporary...

Tonight I am wishing I was in this chair with my baby girl. 

Tonight, and the 26 nights before it--this chair has been empty. 

I always knew in the back of my mind that this part of our transplant adventure was coming. But I feel so underprepared. 

My baby is not herself. It is so hard to watch her grow more tired everyday. 

I miss my boys so badly. But when I am home, I let my stress get the better of me and I'm not the mom I want to be. 

I miss Bill. So so much. He will never know how grateful I am that he is working so hard to keep our boys' lives as normal as possible. 

I really do not want to complain. We are so blessed in so many ways. But this sh*% is freaking hard. 

We've experienced loss and unfulfilled dreams in our life, but this uncertainty that we are feeling now literally brings me to my knees. 

I just pray that all the hard stuff will make the good stuff that much greater. I'm giving it up tonight. I'm giving it up to God. I know He will fight for me. I need only be still. 

Dru's First Halloween

I was so excited for Dru to get dressed up this year. 

B has been saying for months that he wants Dru to be a ladybug for Halloween. 

Being stuck in the hospital made it hard to find her a costume. 

I mentioned this to my friend, Britney, and less than a week later she had whipped up the most perfect ladybug dress you will ever see...

But first we had a renal scan to get done. 

I was really nervous for this test because Dru had to lay in this machine and be still for about 45 minutes. 

She absolutely hates to be held still so my anxiety level was pretty high. They layed her on the little gurney and put weighted pillows on her arms and legs and strapped her in too....

And she rocked it!!!! There was a TV right in front of her face playing baby Einstein and she loved it. 

She held my hand the entire time and almost fell asleep. 

Now it was time to party. 

The hospital had a little carnival and trick or treating in the hallway. B came up after kindergarten to party with us. 

By the time we got back to her room, Dru was worn out and covered in glitter. 

After we got settled, grandma and grandpa kindly offered to stay the night so I could be home with my family for the night. 

Because of this:

I got to enjoy this:

Finding the Magic Number

At this point with Dru's disease, it's all about the numbers. 

The higher her score the more offers she can potentially get. And as Dr. Jensen has said, it only takes one good offer. We only need one

So far we are not getting any. 

Dru is stable but very sick. The only thing that can make her better is a new liver. 

We have officially been here for three weeks waiting for her liver to come. She's too sick to go home and needs more professional care than I can give her. 

If I had any doubt of that before, I was effectively reminded on Sunday night. 

At about 6 pm the nurses came in to do our nightly routine of starting her IV nutrition through her picc line. 

After everything was started I saw that her picc was leaking blood. Turns out there was a crack in the cap at the end of the IV line. 

So the nurses clamped it off and called the IV team to come place an IV for her nutrition until a new picc line could be placed the next morning. 

While we were waiting, Dru fell asleep. And she was sleeping good. 

Too good. Within an hour of her TPN being stopped, her glucose level dove to 24. 

She was not responsive. 

About 6 nurses were around her bed trying to rouse her. They were calling her name, flicking her feet, clapping their hands. She wouldn't open her eyes. 

An IV line was quickly placed and she was given a concentrated dose of dextrose. 

Finally she started stirring. They tested her blood sugar every hour through the night just to be sure. 

I was scared when she was so still, BUT I knew she'd be ok. I am so grateful for the nurses here who trust me when I say she's not herself or something's wrong. And then they do something about it. I feel safe here. 

Right now, Dru's labs seem to be changing everyday. And her points change almost everyday too. 

Right now she has a PELD score of 42. 

If she needs a transfusion in the next 12 or so hours she will be given a 1B for a week. 

That means she's critical, but fixable and a 1B will essentially put her on top of the waiting list. 

So for now we are just trying to find that "magic number" that will be the key to that one perfect offer. 

Our home away from home

I can't believe it's been a week already from my last post. 

So much happens from day to day. 

It's hard to keep up. 

Earlier this week we had very high hopes that Dru would be able to come home for a few days. Her labs were looking more stable and our doctor was on board to send us home on Monday. 

Monday morning our liver team decided to have an echocardiogram and MRI done while we were still in-patient. This was totally fine with me if it got us home. 

But it didn't. The results of the MRI pretty much sealed the deal that we are official residents of Primary Children's Medical Center until Dru receives her transplant. 

Her MRI showed that she has pockets of fluid in her liver that are possibly causing the blood flow to her kidneys to be restricted and that is causing her kidneys to fail. Our team has to decide if it's worth it to drain some of the fluid from her liver. The procedure is considered invasive and ups her risk of infection. 

Tuesday, Bill came up to visit and was here when Dr. Jensen came in to talk about the possibility of us listing at another transplant center in another region. After a very frank discussion, we ultimately decided that we feel confident staying here, knowing that our surgical team has a very high rate of success and this is where our support system is. If we listed somewhere else, we would have to live there for a minimum of two months. 

The mama bear in me wants to get her anywhere that she can get a liver faster. 

But there are no guarantees. 

And the reality of being away from my boys for 2 months or more on a "maybe" was the deciding factor for me. BUT, I am working on getting our insurance preauthorization done, just in case. 

Yesterday morning, we were sent to imaging for an ultrasound of Dru's kidneys and their blood flow.

So, that was not fun at all. She does not like having to hold still. And she has been stuffy and can't breathe well through her nose so she wasn't loving the binky either. 

Finally, I had to pick her up and sing to her to calm her down. In that moment, even though I was so stressed, I remember feeling so grateful that I could give her comfort. 

It's the only thing I can give her right now. I can no longer feed her, or give her medicine, or even take her for a walk without help. I have felt rather helpless actually.

But I can hold her. I can love her. And boy do I love her. 

After the ultrasound we walked back to her room and some of our liver team was waiting on us in the hallway. They asked how it was going. Because of the feelings I had just had , I just broke down. 

I swear if I had seen them just 5 minutes later, I would have been fine. Anyways, long story short, I cried, I complained, I sucked it up and said we actually feel blessed. We've been lucky that this is our first extended stay. 

Moving on...

Over the last few days, Dru's INR number has been creeping up. Meaning that her ability to clot is not great. So yesterday she received a transfusion to help boost her platelets. She will probably need another one in a few days. 

Also yesterday, our social worker mentioned that most BA babies spend some time in the PICU before transplant so don't be surprised if we end up there soon. 

And then the kidney specialist came in and said they are keeping an eye on Dru's kidneys, and that scary word "dialysis" came up again. 

Man, yesterday was a depressing day. 

Bill stayed the night with Dru last night so I could get some sleep, and I came back to good news. 

1) our surgeons have decided that Dru can accept a larger liver then they had first planned, and

2) one surgeon in particular feels confident about Dru receiving a partial liver. 

And while we are praying that a liver becomes available for our baby, it never leaves our thoughts that our gain comes from someone else's loss. We pray for our donor's family as well. 

Decisions, Decisions

So Dru is still in the hospital. 

Everything is getting back to her "normal" as far as labs go. 

If her labs stay stable for the next 48 hours, she can come home!!!!

It's not really home without her. 

There have been some pros and cons that we have experienced at the hospital in the last 10 days. 

First and foremost I am so grateful for a liver team that wants nothing but the best for my girl. And the fact that they take my concerns seriously earns them some serious respect. 

The fact that they fight for her earns them my love forever. 

The downside of being admitted, is missing the hell out of my boys and our usual routine. We are not used to being apart for too long. Thank goodness for an awesome daddy who does my job better than me. 

I also dislike that Dru's routine is interrupted. Constant meds and tests and blood draws. I know I shouldn't complain because these interruptions are what is keeping her headed in the right direction, so I will go on to say that I absolutely loved all her nurses. They love her and I can tell. And one in particular, Alysha, has become a new friend. 

I was also able to meet a sweet family who were in the room across the hall from us. They just learned that their son has Biliary Atresia. He was scheduled for the kasai procedure in a few days. 

I was taken back to the night we learned that Dru had this disease and all the confusion and heartache that comes at you like a speeding train. I don't know if it helped this family, but it helped me to relate our story to them. I remember scouring the Internet for any blogs or articles about Biliary Atresia. I think it's helpful to have as much information as possible. They are an amazing family and already choosing to be positive. 

That choice makes a big difference. 

Another happy result of Dru being admitted and having kidney issues is that our team was able to appeal for exception points. 

And we were approved 1 day later. Dru now has a PELD score of 40!!

Now I'd really like to celebrate this score and feel hopeful that a liver offer is right around the corner. But...

Our liver team is concerned. 

The average wait time for a liver for a patient with the blood type Dru has is 124 days at our hospital. 

Dru has been waiting 231 days. 

Her size, and the fact that she needs a whole liver, and her portal vein being clotted, combined with our surgeons being on the conservative side are making it difficult for that "perfect" liver to be available. 

The fact that we share a region with California  doesn't help. They take a lot of donor organs because of their population but they don't donate a lot. 

Please, please donate!!!

Because of a lack of donations, there's a chance my baby won't get the liver that saves her life. 

Because of a lack of donations, we have to make the decision to have Dru listed at a transplant center out of our region. Halfway across the nation. 

There is no decision to be made really. I will do whatever it takes to save her life!!!

Breakdown

I need to get caught up on the events of this past week. So I'll take it day by day and hope I don't forget anything. 

Sunday, October 5--

Dru hadn't been acting like herself. She slept in til 11:30 and I was constantly going in to feel if she was breathing. She woke up for about an hour then took another 3 hour nap. She threw up around 3:30 so we turned off her pump to give her a break. 

Monday, October 6--

Dru is still pretty lethargic. Our home health nurse came to draw blood for labs and all her vitals looked fine. Right after the nurse left, Dru threw up so I took her off the pump for about an hour. 

She went down for a nap at noon and I had to wake her up at 3:30 to take her brother to baseball. As soon as I walked in I knew she had thrown up. It scares me that it was so much and it didn't wake her up. I was a bit of a basketcase as she slept that night. I kept running in to make sure she was breathing and not laying in throw up. 

Tuesday, October 7--

Our liver clinic called to discuss her labs which weren't terrible (yet) and I told them my concerns. We made an appt for Wednesday. 

Wednesday, October 8--

We had our appointment at the new outpatient building (which is beautiful by the way). We had labs done first, then went up to talk to Dr. Jensen. He asked us how things were going. Bill said that he can just see that Dru is tired of fighting. 

I sat in my chair looking at her in my lap and just cried. 

I've never done that before at an appointment. Dr. Jensen just handed me a box of tissues and said he thinks we are getting as far as we can with keeping her at home.

 He thought another infusion of albumin would help and we could have it done at the hospital or we could have home health come do it. 

We opted to do it at home and keep her out of the hospital til absolutely necessary. 

And then her lab results came up. 

Her kidney numbers were very high. Her kidneys had shut down and she was extremely dehydrated. 

We were admitted immediately and she was given fluids and medicines to jump start her kidney function. We wouldn't know if it was working til the next day. The word "dialysis"was being thrown around--not cool. 

Thursday,October 9--

Her kidney numbers were about the same. The attending doctor said that they are hoping they would plateau and then start trending down. So Dru was on the same medicine regime all day and night. 

Our schedules have been turned upside down. 

I stay with Dru and sleep at the hospital. Bill spends the night with the boys and gets them off to school. After finding somewhere for B after kindergarten, he spends the afternoon with his girls at the hospital. 

I know it breaks his heart to leave her here. 

Friday, October 10--

This morning her labs look better. Her numbers have been reduced by half!!! 

I'm getting hopeful they'll send us home. 

Dr. Book comes to talk to me about what the team is discussing. 

I ask her if we get to go home. She doesn't answer like I expect. 

She says " you know, it's not unusual for babies that are this high on the waiting list to be here until transplant"

I can't decide if this relieves me or not. I miss being home after only 2 days, but I also feel some peace knowing she's being monitored so well. 

Anyways, her belly is still quite large so our team wants to do another tap to see if the fluid in her belly is infected and could be causing her kidney problem. 

Before we schedule the tap they send us to ultrasound. Turns out there is not a lot of ascites, but her bowels are huge and full of fluid. There is a concern that her digestive system is slowing down and may stop working altogether. 

The first plan of attack is to put her back on NG tube feeds at a low volume (she had been on 24 hour TPN since being admitted). 

Saturday, October 11--

The tube feeds are not working. She just throws them up. So now they are adding miralax to her feeds to see if things will start moving. 

Today is pretty quiet at the hospital. Dru is pretty tired so we spend most of our day just snuggling, waiting for dad to come see us.

 And he is sweet enough to stay the night so I can spend time with the boys and sleep in my bed!!

Sunday, October 12--

Bill says he and Dru slept really well. And she pulled her NG tube out--that's the third time!!! They had also given her Benadryl to help with her itchiness. 

The boys and I are heading up this afternoon for some much needed family time. 

That is the hardest part for me--my heart is in two places. I miss whichever part I'm not with. So much it aches.