6 months old!!!

Little Miss Magic turned 6 months old yesterday. We celebrated by getting her immunizations :P

Seriously though, this day was a personal milestone for me. It marks the day that Dru has been in our home the same amount of time as she was able to be with her birthmom. I love that Dru's first three months will always be a part of her story, but I would be lying if I said I didn't want to be the mom who knows more about her. Selfish I know, but it is what it is. 

Look at that beautiful belly. I hope someday soon she'll be sporting a beautiful, life-saving scar on that belly. And again, I'm showing my selfish side. I had secretly hoped I could be her living donor and share that beautiful scar with her.  I felt like somehow that bond would make me more her "real" mom. I know, I know--I AM HER MOM!! I know beyond a shadow of a doubt that Dru was meant to be a member of our family. 

The possibility of a living donor has been ruled out altogether. I have mixed feelings about this. 1) I'm relieved that someone does not have to put themselves through a hard surgery to save my girl. 2) I'm extremely sad that someone else's family has to lose a loved one (a baby) to save my girl. THAT is something I will probably struggle with my whole life. 

A Thankful Heart

Our fundraiser campaign ended last night. I am overwhelmed with gratitude for the love shown to my family. And it's not about the money. 

So many kind words and prayers offered. I am looking forward to the shirts being delivered. If you are on Facebook please tag me in any pictures of you wearing them. If you are on Instagram use the hashtag #ibelieveinmagic. I would love to have a collection of pictures to show Dru one day of all the people that loved and supported her through this adventure. 

THANK YOU FROM THE BOTTOM OF MY HEART!!!!

We had a clinic visit at Primary's today. It was the easiest visit so far. No fasting, no sedation. Only one vial of blood and a visit with the newest member of our family, Dr. Jensen. 

Her PELD score went up by one, so she is now a 17. The closer she gets to 40 the higher she is on the transplant list. 

She also gained one pound so no feeding tube yet. We are stubborn about not wanting it yet. I think Bill and I don't want her to look like a sick baby for as long as possible. 

The only bad news we got today was that the option of a living donor won't work for Dru. She has a clot in her liver that has made it necessary for her to only be able to receive a whole liver that's the right size. This means another baby has to die in order for mine to live. The reality of that really hurts. How do I ever repay a family for a gift like that?

One thing I do know is I am a donor and so is Bill. If you are not a donor, please consider it. You never know when you might be able to save a member of a stranger's family. 

I Almost Forgot

This weekend we had a chance to go to southern Utah to watch our 12 year old play in a baseball tournament. It's been our first little vacation since Dru joined our family. 

It was awesome. It was relaxing. I almost forgot that Dru is a sick baby. That was a blessing. 

Our baseball team is an extension of our family and all the boys were so cute with Dru. Some of them were seeing her for the first time. 

It was so nice to have a time where our only concern was who was winning and keeping the kids from getting sunburned. 

We all ended the weekend exhausted (in the best possible way). Looking forward to many more trips in our future. 

Degree of Difficulty

Some days are definitely harder than others. Some days are physically exhausting. Some days are emotionally draining. 

I absolutely HATE the days I have to hold Dru down to allow someone to draw her blood. So much blood from such a tiny body. 

And the days she has to fast for an ultrasound or echocardiogram are no bueno. She looks at me with those big brown eyes and all I can do is lie to her about everything being ok. Sometimes it's just not ok. But it will be. 

I thought that it would be easier when I was told she would be sedated for her MRI, but watching her go to sleep like that put me in tears. And when she woke up at the sound of our voices when it was over, I cried again. 

I also hate the days that all of my doubts creep in. Things like "how much harder is this gonna get?", "when will we get the call?", "who has to give up their life to give my daughter hers?", "will we find a liver?", "will it be in time?", "what if....?"  

But in the middle of these hard days we are still so blessed. 

A phone call from my mom to check on us and tell me that her dental office wants to wear "I believe in Magic" tshirts once a week in support. 

Texts from my dearest friends daily to see how we are.  

Random donations of money from strangers. 

My whole family willing to be tested as live donors. 

My 12-year olds entire baseball team willing to do the same. 

A letter and money from an elderly neighbor whose handwriting reminded me of my grandma Joe's and had me crying again. 

Words of encouragement on Facebook and Instagram. 

One message of a complete stranger offering his liver (I wish it were that easy). 

I could go on and on. 

And thank goodness here lately, Dru has been as close to normal as she's been in a while. Those are the moments I soak in and take as many mental pictures as I can. Those are the moments that will carry us through. She is amazingly strong and forgiving. 

Entrusted with a Gift, part 2

Yesterday's post was about the gifts given to us by God, and how we choose to use them. 

My friend, Kortni, has been blessed with the gift of a tender heart. I love that about her. She has got to be, hands down, one of the kindest people I know. I am honored to be her friend. 

Kortni was a large influence in our familiy's decision to adopt. She had invaluable perspective that helped me so much on my journey to bring Dru home. I can never properly thank her for that. 

She had been down the adoption path twice before I met her,  and being able to talk to an adoptive mom was priceless. And the fact that she and Dru bonded on sight can only make me love Kortni more. I wish I had a picture of them snuggling today. They can both use all the comfort they can get.  

She recently started an adoption adventure for the third time. Being the tender heart she is, Kortni poured everything into this baby girl from the beginning. That will always be a part of this little girl's story, Kortni. I know it. 

Unfortunately, this adventure did not have the happy ending we all hoped and prayed for. My heart breaks for my friend. But I am so inspired that her tender heart, though broken, is still her greatest gift. Love you, my friend. 

Read more about this amazing woman here loveisallyouneed.me

Entrusted with a Gift

I went to bible study this morning and the topic really hit home for me. 

We were discussing the parable of the talents. And I may get this horribly wrong, but this is what it meant to me:

Talents are things given to us by the Master--something he chooses to give us. To entrust us with. What we do with our talents is up to us. Remember this. 

Parallel to this story we are discussing our "labels" in life. Some we give ourselves and some are given (or entrusted) to us. For example, some of us are "blind", some of us have "diabetes", some of us are "widowed", some of us are "infertile", and some of us are "a mother to a sick child". 

Now we have a choice, just like in the parable, we can choose to hide our labels behind anger, resentment, or denial; OR we can invest in what we've been given and multiply it. 

I did not choose for my daughter to have a rare disease. But I do choose to learn from it and hopefully help others as well. I am extremely humbled to know that I have been entrusted with this sweet soul. And what a shame it would be for me to hide this gift from others. So I am shouting it out as best I know how that MY DAUGHTER IS A BLESSING!!!!! She has made our life better just by being. Of course her being sick is hard, but I refuse to call it a trial. 

We have seen and felt blessings in many ways so far. And it is not hard to see that God's hand has led us all to exactly where we should be. We have grown closer as a family and have drawn closer to God through prayer and by putting all our trust in Him. 

My hope now, as we continue on this adventure, is that people will recognize our positive attitudes and strength and see that our "labels" do not define us, but what we choose to do with them does. 

What I Have Learned So Far

Dru is only 5 months old, but I have already learned so much from her. 

The obvious is that I know way more about biliary atresia and liver transplant than I ever wanted too. 

But more importantly are the life lessons I am learning from her. 

1) Always have a smile for everyone. This little girl has gotten people to fall in love with her by her smile alone. 

2) Enjoy the little things. There have been some hard days where I have taken her peaceful sleeping, or her finishing a bottle for granted. Now I see how even these simple things are precious and should be appreciated. 

3) There is so much good in the world. People want to help us. Some I've never even met. It makes me want to be a better person--to be deserving of the service others are offering. 

4) Prayer and love are super powers. I cannot begin to express the positive spirit that has been in our home with each prayer and kind word offered to our family. It's hard not feel lifted up when there are so many praying in our behalf. 

5) Gratitude is a choice. We have chosen to see Dru's condition as a blessing because of the things we are learning. We are also beyond grateful (and humbled) to be chosen as her family. To be the ones to fight with her. 

6) Fight for what you want. My girl is a fighter. She shows me her strength everyday, with every breath, and with every smile. She is my hero. 

Sleep!!!!

This is short and sweet. 

Baby Dru went to bed at 9:30 pm and woke up once at 4 am to be fed. She did not wake up again until 9:30 am. 

This never happens!! The longest stretch we have ever had is maybe 3 hours. I still did not sleep great because I kept wondering if she was still breathing!!! :)

Buddha Belly

Today is exactly a month since we learned that Dru is in liver failure. Oh how life has changed in a month. 

The past two days Dru has had such good days. As normal as I imagine any 5 month old baby would be. She is even sleeping better. Only waking up once in the night. I credit the lactulose for that. It helps her body get rid of extra fluid that is building up. Better sleep is a trade-off though for horrendous up-the-back poop. 

In fact, if her eyes were not tinged yellow you may not know she is sick at all. 

Oh, and that belly!!! I've been thinking of changing her nickname from Little Miss Magic to Buddha. Her poor liver is huge and I'm sure it's not comfortable, but overall Dru is still as happy as can be. Imagine how much happier she will be when she feels good. 

My Part Time Job

Our life has begun to revolve around Dru's medicine schedule. 

Thankfully, 2 of them are vitamins and can be mixed with her formula. 

This one has to be given twice a day. 7.5 mL. This is so much for Dru's tiny stomach. It takes us a good 20 minutes to get it in her and by the time we are done, I feel like we both need a bath. This stuff is sticky!!!

She is getting better at taking it though and I'm crossing my fingers that she swallows more than ends up running down her chin :)

Our New Normal

"I'm worried".

 Those were the words we heard from our pediatric GI doctor that turned our life upside down. Elevated bilirubin numbers are what led us to this appointment. Words like "biliary atresia", "kasai procedure", and " liver transplant" were explained to us in this visit too. My face must have shown my fear because he quickly explained that all this was "worst-case scenario". Well, worst-case scenario has become our new normal. 

An ultrasound confirmed that Dru has no drainage system for her liver (biliary atresia). If this had been discovered in her first 2 months of life then the Kasai procedure could have been performed. This would attach her intestine directly to her liver to allow drainage. We didn't adopt Dru until 3 months old so this window of opportunity had passed and now her liver is so diseased that a transplant is her only option. 

A blood test also told us that her liver has already stopped producing proteins that allow her blood to clot. We rushed to Primary Children's Medical Center to get her a plasma transfusion and vitamin K. We had our first overnight hospital stay. 

The best thing about this visit was meeting Dr. Jensen. He is Dru's liver doctor. The best words I heard all night were "you don't worry about her liver. That's my job. You just take care of Dru".

Done and done. 

Later the next week, we spent an entire day doing Dru's transplant evaluation (lots of blood drawn :(), and the next day was education day for Bill and I. Even though this all so scary, we left feeling hopeful and so grateful for the hand-holding that goes on at this hospital. I am so glad we live so close. 

It has been a whirlwind to say the least. But more than anything, I am humbled and grateful that I am this girl's mom. To be the one chosen to take care of this precious soul is such an honor. I pray I am up to the task. 

I Believe in Magic

Our family is running a Tshirt fundraiser to help cover the costs of Little Miss Magic's liver transplant. If you are interested go here
booster.com/littlemissmagic. If you feel compelled to share the link with family and friends. That would be great. Thanks so much.

Fighting for Air

I feel like I might be experiencing what it's like to drown...very slowly. I can't quite catch my breath and it's been that way since our family got serious about adoption last January. 

I had actually "known" I would adopt for a long time. It was just a matter of my husband and I knowing it was right at the right time. We were finally on the same page and it we jumped feet first into the adoption process. We both felt really good about the agency we wanted to use after researching quite a few, and attended their orientation meeting in January 2013. It took a few months to fill out all the paperwork and complete all the required education. By June we were ready for our home study and once we were approved, we became an "active adoptive family" at the beginning of August.

We were shown to a few prospective birth moms, but never quite fit until December 18, 2013. That is the night of our first conversation with our birth mom. She is one amazing, intelligent, hardworking, and loving woman. I am honored she chose us to be parents to her 3 month old baby girl.

We signed placement papers 10 days later and Gracie-Dru planted herself in our hearts the second we saw her. Bill and I looked at each other and just knew that she was ours. No words can describe the feeling when our birth mom placed her in my arms and said "she's yours". My heart is screaming "Yes!! Yes she is!!"  But it's also breaking because I know I'm not the only momma who loves her. Gracie-Dru had lived with her belly mom for 3 months before she found her way home. And I can be nothing but grateful for the love and care she was given. 

Dru was the happiest, most content baby I had ever seen. She endured hugs and kisses from her family as well as all the visitors that couldn't wait to see her. We were surrounded by so much love. I could feel myself being buoyed up. Finally my baby that I had bee struggling to bring home for years was here. I could feel my head start to break the surface of the waves. I began to catch my breath--only to be pulled under again.

6 weeks after bringing our baby girl home, on valentines day to be exact, we were told that she would need a liver transplant in order to survive. Once again, Bill and I looked at each other and knew that she was ours, and that we would move heaven and earth to save her.

Gracie-Dru was born without a drainage system for her liver (the fancy name is biliary atresia). Her birth mom and previous doctors had thought it was a case of jaundice and it was never treated. Had the condition never been discovered, my baby would not have made it to 2 years old. I know without a doubt she is meant to be here. She is now on the waiting list for a new liver that will save her life.

So now we are holding our breath again...waiting. When I first learned what we were facing I felt the waves crashing over me. Waves of anger that the perfect baby girl I prayed for wasn't perfect. Waves of fear that my perfect baby girl won't survive. Waves of guilt that I had thoughts like "I didn't sign up for this".







But now I am drowning in a different, more beautiful way. I am drowning in love. Love for my baby girl who is still perfect and loves me through my doubts. Love for my God who led her to our arms. Love for my husband who lets me break down and is always by my side.

I am drowning in gratitude. Gratitude for the love and support of family, friends and strangers. Prayers and love are the universal language it seems. I am grateful for amazing doctors, and that we live practically next door to one of the best pediatric hospitals in the world.

I am grateful for the peace I feel when I let God fight this battle for me and I can focus on each day, and the treasure of every smile that "Little Miss Magic" freely gives me.

So while I can't wait for my head to break the surface again, I am in awe of the love and generosity and prayers that have taken my breath away.