daddy's message

To hear Brad's message from Molly's memorial service go to www.highviewchurch.com and click on sermons (right hand side of the page) the message is under "Dancing with Daddy".

mommy's letter

I couldn't get this to load as a slideshow, but it was playing with the song "Dancing with the Angels" by Monk and Neagle. That's truly how I picture her though. She never got to wear a pretty dress until she died, and now I can imagine her dancing with the angels in the prettiest pink dress I could find. It blessed me, and I'm sure it will bless you too. If you go to this website in a different window and play the song, you should be able to push play and come back to this window to read the letter. Sorry I couldn't get the real thing to load, but this should give you the general idea of how it played at her service.

http://www.youtube.com/watch?v=22x2mR1WU1w

My sweet girl.

You were the most amazing thing to have come and gone from my life. It happened so quickly; that I sometimes think it couldn’t have been true. That you could be gone from this life so quickly yet left a mark that traveled so far and wide.
From the beginning of your little life, you were changing the way people saw God. You gave people a reason to pray more and allowed them to see just how faithful our Savior is. The day you were born I witnessed a miracle, and in the 84 days to follow they never did stop. I always thought you looked like an angel, and now I know it to be true. You entered my life and turned it upside down. I can’t tell you how proud I am that God chose me to be your mommy.

You were a special little lady and it doesn’t matter that I had almost 3 whole months with you, I still wish I would have had more time. More time to tell you that I thought you were absolutely perfect. More time to kiss those sweet cheeks, and whisper in your ear that I love you. More time to snuggle and sing you to sleep. More time to touch your soft skin and rub my finger down your nose. More time to stare at you and tell you how beautiful you were. As much as I wanted it, Jesus decided that He needed more time with you instead. More time to let you truly live, dance and be free. More time to love you like I never could, even on my best day. More time to let you enjoy your brand new body and have no pain at all. I wasn’t able to give you that.

I will miss watching the way Owen would have taught you to throw a ball, or gone out of his way to protect his little sister from anything. I am saddened that I won’t get to see you jump up on your daddy’s lap, and have him tell you that dating was out of the question for at least 30 more years. I would have given anything to watch you walk down an aisle and then one day become a mommy yourself. There are so many things I wanted for you, but God had different plans…greater plans for you.

I love you my sweet baby, and miss you so much it hurts. When you left me I didn’t think I’d be able to breathe again, and here I am rejoicing that you are finally healthy and happy as can be. God is good Molly, and I can’t imagine you being snuggled up in the arms of anyone else. Thank you for the sweet blessing of your life. I will see you again soon, and you can just plan on me covering those precious cheeks with too many kisses to count. In the meantime, have fun dancing with the angels…

I love you baby,
Mommy

What Molly's nurses had to say...

Nurses from Children’s Hospital NICU

Jen Waffle – Oh, sweet snuggly Molly…this child touched my heart – through her trusting gaze, her hint of a smile, her quietness when being held late at night in my arms while listening to her Jack Johnson CD. Or when I would unhook her fro her monitor and take her out to my work station, so I could hold her, smell the top of her sweet baby head, and talk to her, until she drifted off to sleep right in the middle of one of our late night conversations. She was a beautiful, sweet, wise soul. She is also one of those babies who will forever be in my heart. I am so thankful and feel so blessed that I got to meet her on her journey.

Sara Boyd – I remember Molly was usually very curious about anyone being in her room. She just wouldn’t settle into her nap is she knew anyone was still there. Now, if you were holding her, she would fall asleep in your arms. So, when Haley was in the room, Molly would be awake, alert and searching for her mom’s eyes. Now, if one of us nurses were there it was a different type of awareness – she knew us, knew we were there, but she wasn’t as engaged – she just shined when Haley was in the room.

Carolyn Penrose – When I think of Molly, I think of how she is a true reflection of the love of her mother, father and brother. Despite Molly’s struggles medically, it was evident that she knew how much her family adored her and that they treasured every moment with her and the miracle of her life and of her time here on earth. I feel truly blessed that I had the opportunity to care for Molly and her family and I admire their strength and courage. Haley was truly an amazing mother and was always eager to learn everything possible so she could care for Molly. Two weeks ago, I cared for Molly and she smiled at me for the first time. I just watched her in amazement and talked to her and cuddled her and I was awestruck, not because of her smile, but because I had one of those moments where you realized how incredibly lucky we all are for the life we have and the loved ones in our life and I stared at her in amazement wondering how a child who has been through so much in her short lifetime can find a reason to smile and I know that the reason is because she was surrounded by love. God touches our lives with people sometimes for only a moment and sometimes for a lifetime but we have to treasure each moment we have with those we love and Molly’s family truly treasured each moment with Molly. Her mother cared for every need and want and loved her with all her soul, her father adored her and treasured precious moments with his baby girl and little Owen was always there to play with Molly and kiss her in the swing and make us laugh even in a difficult situation. I will always pray for you and your family and that God grant you peace that even though her life was short, you made the difference in Molly’s life and made her days here on earth beautiful and full of love.

Gina Gavin – My name for her was “sweet cheeks”. To me, with those beautiful cheeks, she was like a cherub here on earth. And al she wanted while she was here was to feel the hugs of those around her. She fed off of those hugs and cuddles. That was her sustenance. She probably stored them in her cheeks to take them up to heaven with her.

Linda Wood – While I only cared for Molly the weekend that she left for Omaha, what I will remember was that she was a touch little cookie with a lot of spunk.

Heather Fitzgerald – I will always remember Molly as one of my M&M’s. Now that only one M is at work, there is a void in my night. I loved those cheeks from the first moment I saw her. She was such an enthusiast about her pacifier. I think that is what continued to build up those cheeks…her muscles got bigger sucking. Molly’s gaze just put everything right with the world. She was such a great communicator. All she wanted was to stay awake when I was trying to rock her to sleep. We would sit, read, talk…night shift was a real treat because of Molly.

Karen St. Louis - About Little Miss Molly…it was always clear how much Molly was loved, her room was full of signs of love, hope and celebration – purple butterflies and music. One night, I went into Molly’s room to check on her. Haley and Owen were in there. Molly was asleep in her swing. Little Owen held his arm up in a “halt” gesture and gave me a loud “NO!” in the way only a 2 year old can. After several more “No’s”, and my attempts to persuade him that I was an OK person he hauled off and punched me in the leg. He was protecting his baby sister. Isn’t that what every little girl wants, a big brother to defend her and punch out anyone who might be coming around to pick on his little sister? Owen and I soon shook hands, and made up and became friends. He proceeded to kiss his baby sister on the head saying “My”. His way of say Molly’s name told me at once that not only was she Molly, she was HIS Molly. I have met few mothers who are able to fight and advocate for theirs baby’s the way Haley fought for Molly. The strength and love this family shares is amazing.

Jane Deacon – I always felt that Molly was ok with her fate. She seemed to be patiently waiting for the rest of us to catch up. She was patient and enjoyed the love of everyone that came into her life, be it family, friends or those of us blessed at University, Children’s and Omaha. Molly seemed not to want her family to suffer or linger in sadness.

Genette – There’s an African tradition from my husband’s home country of Senegal, West Africa. A child is not officially named until three months of age at a very important baby naming ceremony. The reason for this is that the people in this part of the world believe that the baby has to show their personality first, and then an appropriate name will be given. If we held this same custom for Molly, I think her name would have been something that embraced the character of a dedicated, fierce, female soldier! The baby naming ceremony is very important. It lasts all day with music, feasts, dancing, very raucous and joyful! So, Molly, today for me your name is Molly, Xare-Kat-Yi, little soldier. Love always, Genette

Michelle Kaufman – There was a calm and a peace about Molly that seemed to surpass all understanding. For as broken as her body was, Molly was as whole as I could ever hope to be. One early Sunday morning I was caring for Molly and…I was feeling frustrated. In the middle of my grump she had been kicking and moving around. Out of nowhere her hand lay on my arm, and as I paused I noticed that she had stopped kicking. When I looked up, Molly had a wise smirk on her face. I laughed out loud thinking to myself, did she just tell me to calm down? Molly, Haley, Brad and Owen and the entire family have been a blessing to my life and they will hold a special place in my heart. This is a place in my heart where God can illuminate suffering into treasured experiences and magical moments. Growing up I was taught that there is one reason that God puts us on this earth…and that is to love. Molly loved us well and she was loved fully and whole.

Nurse from University NICU –

Hi, my name is Angie and this is Tracy and we are nurses that took care of Molly. I first took care of Molly when she was just a couple days old. From the first time I took care of her, I pretty much fell in love with this little girl. She had the most mellow, easy going personality, and her cheeks were pretty cute too! Molly had a lot going on in the first few days and she hardly seemed to notice. The only thing she wanted was to be held. When you would hold her, she would just melt into your arms. Molly and I had many adventures during our time together. We often would go to radiology, which required a trip down to the basement. Most babies hate being taken on adventures. Not Molly, she loved them! They have this warmer on the radiology table called the bear hugger and let me tell you, as long as Molly was on the bear hugger, she couldn’t care less what else was going on! There were many times I would come into work and Molly was being rocked by the nurses while her own CD’s were playing in the background. Or, I would find her on rounds with the doctors, or charting with the nurses. All in all, she was one very special girl (oh, did I mention the cheeks?). Haley and Brad were incredible through this whole process. Working in the NICU, we come across families that are faced with difficult situations. I have never seen a family deal with a difficult situation in the way that Haley and Brad did. Sitting and listening to Haley explain what she was going through and how she was processing all the information was the most unbelievable experience. I feel very lucky that I was able to take care of Molly for the 6 wks she was with us in the NICU, and I am very happy to have met such a wonderful family. I know that we all will miss Molly very much. I have a poem to end on and hopefully I can get through it…

The poem is called “Letter to Mom” (even though it’s a letter to both Mom and Dad. It’s by Joy Curnutt.
Mom, please don’t feel guilty
It was just my time to go.
I see you are still feeling sad
And the tears just seem to flow.
We all come to earth for our lifetime,
And for some, it’s not so many years.
I don’t want you to keep crying
You are shedding so many tears.

I haven’t really left you
Even though it may seem so.
I have just gone to my heavenly home,
And I’m closer then you know.

Just believe that when you say my name,
I’m right next to you.
I know you long to see me,
But there’s nothing I can do.

But I’m still sending you messages
And hope you understand.
That when out time comes to “cross over”,
I’ll be there to take your hand.

in the days following

Many people have asked the question...How are you doing?  I truthfully don't even know how to fully answer that question.  I feel like it would take too long to actually break it down for people how we're really doing.  I don't mind answering, but I never feel like I've said enough.  It sort of comes out as all or nothing.  So I decided to try and figure it out this way in hopes that you'll see how our family is handling all that's happened.

We are taking things day by day, which I'm pretty sure is how we've tried to do everything when it came to Molly.  There are days when we are great and can talk about the joy she brought to us, and even the hard times we dealt with.  Then, of course there are days when we (or I) have a more difficult time dealing with that empty feeling that loss can't help but carry with it.  I have broken down at the most random times, because of something someone said or a picture that came to mind.  It's nobody's fault, because I absolutely love talking about her and hearing others talk about her.  It's just one of those things that you never really understand, and it will come at a time when you're least expecting it.  I've had a hard time putting together the blog of the service just because it's so much.  I was reading all the notes the nurses wrote about her, and it breaks my heart because they truly do have the most accurate words to describe who Molly was.  I was trying to download some of the slideshows and that was also more than I could handle at one point.  I just miss her.  We all just miss her.  I have been amazed at how many people were affected by the life of Molly Ann Hovis, and it has made me so incredibly proud.  

Brad and I talk about her often, and about how widespread the story of her life goes.  It's such a bittersweet thing for us.  Nobody can ever prepare you for the pain that comes with the loss of a child.  We always knew it was a possibility, and from the beginning didn't know if we'd get any time at all with her.  I guess that's where the sweet part of it comes in...we got that time with her.  We were able to spend 85 days loving on her, and we feel so incredibly blessed to have had that.  Even though it hurts because she's not here, it's a wonderful thing that God has done to give us as much peace as we've had.  Through our entire journey with her, that's how it was.  I never doubted that God was doing what was right by our family or Molly.  I continue to think that.  He took her because it was right for Molly.  I don't think many people actually got to see the things she had to go through, but it was difficult as a mom to watch her baby have to suffer through.  She did it well though...another reason I was so proud of her.

So, we continue to grieve, but it has come with different faces.  There are days when it's a sad or painful memory, and there are days when it's a happy laugh out loud memory.  It all hurts, but in different ways.  Owen has truly been the most amazing thing God gave us to get us through this.  He makes me happy all over, and I truly can't love on him or kiss him enough.  He is going to have to get used to his mommy being in his face for a while, because he has been so good for my spirits.  Brad has always been strong.  From the day we found out about Molly's disease, he held on to the trust in God he's always had.  It's one of the reasons I was able to make it through this okay.  

I will just say one more thing...if you don't know about the the kind of peace I talk about, then I pray for you even as I write this that you know it one day.  It can ONLY come from God, because he truly is the One who has brought us through all of this.  I would be more than happy to talk to you about where you can get it, because it's a supernatural God thing and I continue to get up every day with joy in my life because of it.  All that said, just to tell you that we're okay.  We're making it, and we're so so grateful for your prayers throughout.  God has heard your cries for our family, and has responded in a way that has made it okay for us to live our lives with the sweet memory of our precious Molly.  I promise to get the service blog up as soon as I can.  Keep checking back.  Love you all.      

still going

I will be posting stuff from Molly's service for those who couldn't be there. It's been one of those things that I haven't had a chance to do, but would really like to. Thanks for keeping up with us and know that we love and appreciate your continued prayers. Talk soon...

goodbye baby

I have no words that can fully explain the depth of my sorrow. I will do my best, but I truly have no desire to write about the death of my little girl. She went into surgery last night and never made it out. I can honestly say that I was not expecting this outcome. Call me naive, call me whatever you want but I thought this was her shot at having a full and healthy life. From the beginning God had different plans for my precious Molly, and I know that He did not take her away in order to hurt me. He is faithful and he has been so gracious to us. We were able to have almost 3 months with her, when there were people who told us we would get no time at all. Although her days were numbered and few, I have to realize that so are mine. This is not home for us, and I am continually reminding myself that Molly is home. She is with a daddy who has given her a brand new body. There are no more tubes and no more surgeries in heaven, just the healing hands of our loving Savior.
We had a perfect day with her yesterday before she left us, and I have no one to thank but God for that time. We thought she would be rushed into surgery as soon as we got there, and he granted us 5-6 hours alone with her. I will never forget those moments I had snuggling with her, kissing her precious face, talking with her, and watching her watch me. She had just recently started making noises and smiling, and I am so blessed to have heard that sweet sweet sound and to see those tiny lips curl up at her mommy. I weep as I write this because my heart has been broken. I have lost a piece of myself with the loss of my baby. I have never felt pain like I feel right now, and I know that the peace of God is the only thing that can ever make it go away. Little Miss Molly was a gift straight from the hands of our Maker, and while she was here she turned my life upside down. I would have done anything it took to get her home and to see her get well. I was ready, but instead God took her pain away and made it so that she didn't have to just survive. She gets to LIVE and to DANCE and BE FREE of the cords that entangled her here. I always thought she looked like my PaPa, and today I imagine him holding her in his arms and stealing all her smiles and sounds. I miss her and don't exactly know what to do without her. I am praising God for the blessing she was not only to me and our family, but to people who didn't even know her. That's amazing to me. We will move forward but not without the wonderful memories of our baby Molly. I cry because this sweet girl is no longer with me, and at the same time rejoice because who better for her to be with than Jesus! Brad has been such a great husband and rock to lean on. He is helping me to see just how much grace we were given. Owen is refreshing and has been able to make me smile in the midst of all my tears. My parents and Brad's parents have been such a support and have truly been an example of what sacrificial love is. We also have some pretty incredible family and friends who have done nothing but serve as an encouragement to us throughout the entire span of Molly's life and now through her death. We are extremely blessed. My little girl was a miracle.

Thank you so much for your prayers. We love and appreciate you all. We will be celebrating her life on Friday at 4:00pm. It will be held at the Tivoli downtown in the room - Turnhalle. Anybody is welcome to come. I would love to hear how she touched your life. We've also had many people as how they can help and the Colorado Baptist General Convention has set up a fund for Molly to help offset medical bills and funeral expenses. If that's something that you feel led to do, then you can donate through mail or online. The address for the CBGC is 7393 South Alton Way Centennial, CO 80112-2302 Phone: 303-771-2480 or go to http://www.saturatecolorado.com/ and the e-give button is at the bottom right hand side of the page. If this isn't something you feel led to do, then please know that we are so incredibly grateful for your prayer support.

time for transplant

So, in the middle of the night we got the call from Omaha. There was a possibility that there would be organs available, so we needed to get to the hospital ASAP. As ready as I thought I would be for that call, I never imagined that it would come a week and a half after she was listed. So I got started packing, and I can't even explain all the different emotions I felt. I know that she needs this to save her life, but it could also be the very thing that takes her life. I kept telling Brad that I wasn't ready and didn't think I'd be able to do this. We prayed and he was finally able to uncurl me and convince me that we had no other choice. Once we got to the hospital they had to make sure she was free of any infection, and they gave us the go ahead. It didn't take long at all to get from the hospital in Denver to the hospital in Omaha. When we got here, we had some good time to spend holding her while we waited for the organs to get here.
Molly is in surgery right now, it will take about 8 hours for the entire transplant (pancreas, liver, and small bowel). One of the hardest things I've ever had to do was hand my daughter to a nurse I didn't know who was going to take her to a place that nobody can promise she'll make it out of. It feels so selfish to want to hold on to her and never let anybody take her away from me, even if I know it's for her own good. That's my baby and I hate that I can't protect her from all the scary things she's going to experience. She's too little to know what's going on, but I'm not. I know the risks involved, and it's not an easy thing making the decision to place your child in a position like this. The only comfort we have right now, is knowing that God is in control. There are things that have taken place so far that have completely amazed me. I stand in awe at how
Sovereign our Lord is, and will always give Him glory for the things we've been able to walk through. I don't know how this is all going to turn out, but I will continue to praise Him for the life that was taken so that my little girl could have an opportunity at really living. I will be forever grateful to the family who gave us something as precious as this. What a miracle that they can even do something like this.
I will do my best to keep everyone updated. I will be here for about 6 months with Molly for rehab after all this is over, and I'll continue to let you know how she's doing. Please pray that she makes it out of surgery okay, stays infection free, and that her body doesn't reject the organs. We love and appreciate you all. Thank you for standing by us in this, and for being a constant support and encouragement.

hippos and monkeys

Today was a great day.  I got to the hospital early with Owen so I could put Molly in her Halloween costume.  It was more fun than I imagined, since I wasn't sure if she'd even be able to dress up.  I had to work around a few things like the g-tube in her belly, the line in her leg, and the heart, blood pressure, and breathing monitors!  It all worked out, and she ended up wearing a hippo towel as a costume.  It was seriously cute, and still very convenient for the nurses and I to get around.  I would hate for her (and us!) to miss out on that kind of stuff just because she's in a hospital.  One day, I fully expect Molly to look at these pictures and either giggle because she looked so cute or straight up hate me for dressing her like a really large animal!   I do look forward to the day that she can pick out any costume she wants (with daddy's approval of course), and she won't have to worry about whether or not it's handicap accessible.  One day she'll be free to do a lot of things, but right now we'll just deal with right now.  

It was also a great day because my son seriously knows how to make me laugh.  Here he is dressed up like a monkey, and he kept wanting to put Molly's costume on.  He'd say "i wan hipo" and try to yank it right out from under her.  It's good to know that regardless of Molly's condition...he's still just a big brother.  He also got to trick or treat for the first time and it didn't take long for him to realize that if he said the magic words "or teet" that people would fill his pumpkin full of "campy".  I also figured out that he doesn't like fog machines, bones/skulls, big dogs, or tow trucks!  All in a days work my friends.  Seriously though, what a blessing it is to have kids.  I have thoroughly enjoyed watching Owen experience new things and can't wait to watch Molly follow in his footsteps.  It should make for some good stories...one day.            

still hangin with the nurses

Little Miss Molly did not, I repeat did NOT get to come home yesterday.  This makes me a sad mommy, but I know that she will eventually get tired of all the attention she's getting at the hospital and hail a cab on home.  She still has a bit of an infection, so their keeping her on antibiotics for another week or so.  That silly rash just won't go away, although it has gone down in size considerably.  Pray pray pray that once they get this under control, some other kind of bacteria doesn't get any crazy ideas.  Her bed is just waiting for her to break it in, and the swing that Owen never used is dying to rock her to sleep.  Not to mention that mommy, daddy, and Owie are getting a little tired of not being kept up at night!  It will happen soon enough, but I'm asking the doctors not to give me an actual date.  That way I can act surprised when they tell me she's moving out of the hospital, and in with us.  It also will keep me from being disappointed if it happens that she doesn't get to make the trip home again.  So, we'll just keep on doing what we've been doing.  I know God is still in control of the situation, and that she's there for some reason I'm not aware of yet.  Today was a good day, and she was a happy girl.  In turn, this makes me a happy girl.  She got a bath, and smells so fresh and so clean.  We got in some good lovin tonight and lots of kisses were given...by the whole fam.  Owen loves to give his baby sister kisses, after all she does have the most kissable cheeks I've ever seen!  It's a sweet sight to see, check it out for yourself.         

free molly

So, it looks like this little girl is going to be coming home on Tuesday the 28th.  Just the thought of it makes me the happiest girl in the world!  They've told us this before, but I really think they mean it this time.  She was supposed to be home TWICE already, so if they don't plan on letting her go...I'm going to have to free Molly myself!  If a kid can do it to a really large whale named Willy, then surely I can bust out a teeny tiny little baby named Molly, right?  

The reason she's not home now, is because there were a few set backs before.  When we went to Omaha she had the start of an infection, which later led them to believe she had a Pneumonia.  She's on antibiotics right now, and they just want to make sure she finishes them and is free of any kind of infection before they send her home.  Ever since Omaha, it kind of seems like one thing after another with her health.  Nothing major, but they're definitely things that make me worry she's not quite ready to come home.  Yesterday she had her 6th blood transfusion, which is a lot in 2 months if you ask me.  She was carrying a lot of extra fluid because of something going on with her liver.  They gave her some medicine today to drain quite a bit of it off, but now she has some crazy rash on her belly and they don't know what it is.  I would never want to take her home if she wasn't healthy enough to handle it, but I would be lying if I wasn't completely ready to ditch all the nice nurses and extra stuff attached to her body just so I could snuggle with her anytime I want.  It's so hard to leave her especially when she's awake, but I know she's being taken care of.  I guess you could just be praying that they figure out what the rash is, and that they can easily treat it.  Also, that nothing else would come up that would keep her from coming home on Tuesday.  If on Wednesday you see my face on the news for stealing my own child, you know why!        

we're in!!

So yesterday was a happy day for the Hovis family.  We got the call and Molly was put on the transplant list.  They said it was pretty much a no brainer, and that she would definitely need a transplant in order to survive this disease.  She's doing fine now, but over time she will progressively get worse. Nobody knows how quickly that will happen, but we are just praying that she stays infection free and that her liver can hold out until she gets a whole new set of goods.  Now all we have to do is wait and be ready to go when they say go.  God is so faithful, and we are so blessed to have come this far with her.  I stand amazed at all the opportunities this child is getting to impact the kingdom.  I never thought that I would be so incredibly proud of my 2 month old daughter, but you should see her.  She has to go through quite a bit during a 24hour period and she does so great with it all (her pacifier helps if you couldn't tell!).  I can't believe the strength she's been given.  I can't believe the strength we've all been given.  It's just one more thing I can praise the Lord for.  Words truly cannot express how grateful we are for all the prayers thus far.  I hope your faith is growing by the day, because Molly Ann Hovis is most definitely an answer to prayer.  On a much much lighter note...Owen pooped in a big boy potty today!  That's right, my kids are ROCKSTARS!    

to transplant or not to transplant...

We are back from

Nebraska, and I think it's an appropriate time for me to say just how much I love Denver.  Love it! It was a good trip overall, and they ran all the tests you could possibly run on an infant. I was so proud of how she handled it all. They won't tell us whether or not she was accepted on the transplant list until later this week, so we're just sitting ducks right now. It was good to go out there and meet the transplant team and the surgeons, and to see where I could possibly spend a good chunk of a year hanging out. I think they'll come to the same conclusion that everyone else has come to in saying that transplant is really her only option medically. If she is accepted, then the next step would be to wait for organs to become available. Once they do, it's go time. They give us 4-6 hours to get out there, and then she'll go directly into prepping for surgery. They waste no time, so we've got to have a couple plans in place to get out there quickly. After the surgery, she'll spend about 2 months in the hospital recovering and about 4 more months in Omaha. It could be more and it could be less, but that's about average. It's crazy to think that her and I would be separated from Brad and Owen for that long. They'll come visit, but it will definitely be just one more part of this journey that we'll need to depend on God for. We were given a lot of good information, and we truly do feel like Molly will be in great hands. I guess I can say that, because we know she's already in great hands. God has been so good to give us this time with her, and I'm so happy that she's doing as well as she is. I know that transplant is an option, but I know it's not the only option. If God chooses to heal her, it wouldn't be the first miracle we've seen come from Molly's life. We're hoping to bring her home sometime this week, and I so look forward to her sleeping in her own bed. Right now though, I'm off to see my son because I haven't seen him in over a week. I know he had a fun time with both sets of grandparents and probably didn't think too much about the rest of us. Thanks for praying. I'm off to steal me some kisses!

leavin on a jet plane...

Mommy and Molly got to fly in a jet and travel the world! Oh, how I wish that were the case. Instead we went to Omaha, Nebraska for her transplant evaluation. The jet ride was fun, but I'm not gonna lie...I was a tad bit disappointed that they didn't whip out the red carpet for us. Don't they know who we are? Not exactly what I

was expecting since my knees kept touching the knees of the paramedic in front of me...awkward!  However, Molly enjoyed the turbulence and slept through the entire flight with her mouth hanging wide (and I do mean wide) open. A daddy's girl for sure. We got there in about an hour and it took Brad eight...poor guy wasn't cool enough for the lier! Overall, I give jet rides an 8. No security, no baggage check, no terminals, and my shoes weren't considered a threat...just straight up to the plane and wha-lah. Anyways, my little girl was a good little traveler in a tiny little incubator. Memories! 

sleepy time with daddy

Tonight Brad and I got there just in time for her to come off her nutrition. We were able to take her away from her bedside, so daddy took a nap with Molly on the extra bed in her room. It was one of the sweetest sights to see with her laying on him belly to belly like that. There are times when I feel robbed of those kinds of moments with her, but I know that when we get back from Omaha that's all gonna change. I will snuggle that baby silly just because I can. I'm pretty sure Owen has been going crazy seeing as how I have all these extra kisses to give right now! He's just wishing I'd share them with somebody other than him...anybody! This whole situation has made me realize how incredibly blessed I am to have him, with all his 10 fingers and 10 toes and everything in working condition. While Molly has the sweetest fingers and toes, I pray that she will one day have everything in working condition as well. I'm praying for a miracle for Molly, because I believe with all my heart that God can do them. 
We are so ready to go and get this evaluation over with. The week following that, will be one of the happiest times in my life. I'm ready to finally have all my family home together. I'm smiling just thinking about it!

first bath by mommy

I got to give her a real bath in a real baby tub. I think it was much more fun for me than it was for Molly. Although she looks happy as a clam with that pacifier in her mouth. These are landmark moments for mommy...she's almost 2 months old and it's the first time I was able to bathe my child. I'll take what I can get. Check out those cheeks man! Aren't they the greatest?

field trips for molly

Field trip # 1...

The ambulance ride from University to Children's...less than a mile, but it counts!

Field trip # 2...

Brad and I got to take her for a walk around the 4th floor.  It was the first time we were able to hold her more than 2 feet away from her bed.  It was amazing and of course I documented it with more pictures!  What kind of mom would I be if I didn't take picture after picture for the scrapbook I say I'm going to make, but probably won't get around to for 20 years?  She was off her nutrition for her 6 hour block and so we were able to plug up her g-tube for about 30 minutes and take Molly on her first walk.  She slept the whole time, but it was a very fun day for us.  

Field trip #3...

We leave for Omaha on Sunday, Oct. 12.  The doctors have come to the conclusion that she doesn't need to be 10 lbs to go to Omaha for her transplant evaluation.  She gets to go on a jet, and believe me that will be a separate scrapbook in itself!  The evaluation should last about a week, and when we get back we'll get to bring our baby home!  It's been crazy for about 2 weeks now.  I've gone in to panic mode trying to learn everything I need to learn in order for her to come home.  It's a lot, but when I'm done you can all call me Nurse Haley.  I think I might even be qualified to do her surgery myself!  Okay, maybe not but I'm seriously working hard to get this little girl home, where she belongs.  

holding up

Brad, Owen and I are hanging in there.  We do what we can, when we can.  I get up to the hospital to see her every day and love her the best I know how.  Brad and I are hopeful that things will work out and trust that the Lord knows what He's doing.  Pray for endurance for our family....we have a very long journey ahead of us.  I've already seen it wear on us at times, but God has been good to give us strength when we've needed it.  We know there are many of you who are praying for a miracle, and we are so grateful.  We've seen God so so much through her life already...it's been amazing.  I love my family more than I ever have, and I have the sweet gift of my daughters life to thank for that.  Every day is better than the last, and I continue to pray for many many days with her in the future.

the first weeks of molly's life

This was a crazy time for our family.  Molly was taken to the NICU right after I had her, and I wasn't able to hold her until the next day.  It was incredibly intimidating to see her with so many tubes hooked up to her and her being inside the incubator.  In that first week, she had a surgery to put in a central line which is where she gets her nutrition from since she can't eat.  She'll have that until her transplant is over, and then she'll be able to eat real food.  A few weeks after that she had another surgery to place the g-tube in her tummy so that it can empty the fluids from her stomach.  We expected all this when we were pregnant with her, but it's a whole different feeling when it's actually happening to your child.  It has been one of those times in your life where you have no other choice but to depend on God.  The University Hospital nurses were absolutely amazing and treated Molly with such great care.  It was comforting for me as a mom to leave my child with people who treated her like their own.  They would leave us sweet notes about how precious Molly is, they made her CD's of songs they thought she would like, the doctor even took her on rounds with him.  Despite the circumstances that surround Molly, we've been able to see God work through her life even before she was born.  It's been an incredible experience even if it isn't something we ever would have chosen for ourselves.  God has blessed us with this little girl and all her issues and gave us the ability to trust him from the very beginning.  That's one heck of a miracle if you ask me!

the weeks before molly's arrival

Because of Molly's condition, we both grew at an abnormally fast rate.  One of the side-effects of her diagnosis was that she couldn't go potty and had a very large bladder as a result.  Another side-effect was that I also carried more fluid than I should have.  By the time she was born, she had a bladder that was 2 liters full of urine and I had a belly that was full of her, the normal amount of fluid, plus 2 liters of extra amniotic fluid.  If you think I'm lying about how massive we were, ask anyone who saw us and they'll tell you that I looked like a cow.  I hold no hard feelings, only because it was so true!  I ended up going into pre-term labor and was admitted to the hospital at the beginning of July.  She wasn't due until September 17th, but ended up coming on August 10th.  Her poor little belly looks like a little prune because she was stretched out for so long.  It will look like that unless she has surgery to fix it.  We'll get the big surgeries out of the way before we even begin to worry about that one!   

molly's condition

Molly has a condition that is called megacystis microcolon intestinal hypoperistalsis syndrome.  It is incurable and her only real hope of survival is to have a multivisceral transplant.  That includes her stomach, pancreas, liver, and small bowel.   In a nutshell she doesn't have working intestines, or a working bladder.  Her liver and pancreas will continue to worsen until they can be replaced.  She will have to be catheterized her entire life, because there is no way to replace the bladder and eventually she'll need a kidney transplant.  The doctors told us at our 20 week checkup that she wouldn't have much chance of making it full term much less at making it out of the hospital once she was born.  I'm glad that doctors don't know everything, because she has surprised many people along the way.  The fact that she was born and is doing well is a miracle in itself.  She is still in the hospital, but they are planning on sending her home very soon.  She's not ready to give up and neither are we!