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!