I've always known

People are always asking if I was surprised when I found out Madi had spina bifida.  Although I was a bit taken back, of course, I really think I've always known.  I have always felt led to adopt a child with special needs.  Whenever I would tell someone my plan, in the back of my head I would hear a voice saying "or maybe God will give you one of your own".  I always ignored the voice, assuming that my child would be born "perfect" (though both my children absolutely are!!) and that I would adopt, not have, the child that needed extra care.  I believe that was God's way of preparing me for the special child he was going to give us.  Now that Madi is here, I wouldn't want things any other way.  She is absolutely perfect and is exactly the person God wanted her to be!

The most amazing Christmas gift in the world

Today we received the most amazing Christmas gift in the world.  It is exactly what I asked for and couldn't be more perfect.  Our time at the hospital has come to a close and we get to go home!!  I am waiting to be discharged, but it shouldn't be more than 30 minutes or so now.  I cannot wait to have have my family back together again!  I am so thankful my angel is cleared and made it through everything safely.  God is good!

She made it through surgery

Madi came back safely from surgery.  They took out her external shut and put in a new internal one.  She's now five weeks old and has had four shunts (her first one, two external ones, and the one she has in now).  She is in quite a bit of pain so they gave her morphine to help her feel better.  She's not very interested in food but is resting quietly on my chest.  I did try to breastfeed her and, when that did not work, tried giving her milk out of a syringe.  My biggest prayer was that she would come through the surgery safely.  Now that she has done that, I'm praying that her shunt will stay infection-free, will stay placed correctly, and will continue to function as it is supposed to.  I am so thankful that God has protected her.  We are hopeful that we will get to head home tomorrow.  I couldn't ask for a better Christmas gift!

The light at the end of the tunnel

This past 2 1/2 weeks in the hospital has been a roller-coaster of emotions.  First we were told that we needed 4 days of negatives, then it changed to 8-10, ending on 10.  We were in the clear for days when we received another positive (meaning there were signs of infection) and we had to start the count over.  For a while it was looking like we wouldn't be home for Christmas which was heartbreaking.  We know God has a plan and we are here for a reason.  We know that the infection may have protected Madi from something much more serious (babies with shunts have a higher SIDS rate as their shunt can fail at night and the pressure can build up too much too quickly), though knowing that did not always make our time here easier.  As of now, her surgery is scheduled for Tuesday and, if all goes well, we will be home on Christmas Eve.  God has taught us a lot during this time and has made us very grateful for our trials.  We are so thankful that, unlike many other families in the hospital, we get to return home with our little girl.  It breaks my heart every time I walk by the room on the end.  All the windows are blocked off, so it's hard to see in, but there is a sign up on one of the windows saying "Brandon says cancer sucks."  Whereas we will have just under 3 weeks in the hospital before we get to bring Madi home, that  poor little boy will be here for months and may never make it home.  In the long run, our time in the hospital is just a little blur in time.  God has really protected us, and we are truly blessed!  He's given us the best Christmas present in the world.

I know it's silly, but I can't wait to use cloth!

Those of you who know us know that we cloth diaper.  I love using cloth diapers (we use cloth wipes too), but didn't start until Conner was older.  I've been looking forward to cloth diapering Madi, but things just haven't worked out that way.  Originally we had to wait for her back to heal to start using cloth as cloth diapers were too high in the back.  With disposable diapers we could at least fold down the back, keeping the diaper off her back.  Her back finally healed, but then we ended up back in the hospital.  I know it sounds silly, but I was so disappointed to have to wait.  I have the cutest little diapers waiting for her at home and I am really looking forward to getting home and put them on her!  With all the things I have to look forward to when we finally get home again, her diapers are toward the top the list (silly, I know, but she looks adorable in them).  That's how you know you are addicted to fluff!

Here are some of my favorite cloth diapers and diapering sites (we use pockets, AIO, AI2, or fitteds):

www.cuddlebugcloth.com (Prudence makes amazing minkee diapers)

www.happyheinys.com

www.bumgenius.com

www.hyenacart.com sells tons of amazing WAHM made diapers that I love!

www.starbunz.com (these are adorable!!)

www.ababyconnection.com (my friend owns this site and sells all kinds of diapers)

www.diaperjungle.com (answers all your diapering questions)

I know I'm supposed to be strong...

One of the first things I hear when I tell people I have a child with spina bifida is that I must be strong.  They tell me God gives his most precious angels to those who are strongest and who will fight for them.  I know that they are right.  I know God gave us Madi because he knew we would give her the best life possible.  Instead of doing what is convenient, He knew we would do what was in her best interests.  He knew we would travel to China if that's what it took.  Though I know all of this, it doesn't always make things easier.  There are days like today where I don't want to be strong.  Today I just want to cry and be held.  Being strong is hard and tiring and for just one day, maybe even just one hour, I want to just let go.  Instead, I remind myself that everything happens for a reason.  God will not give me more than I can handle.  Today, instead of letting go, I'm going to go forward.  Everything will be ok.

Back in the hospital...

I really wasn't planning on coming back to the hospital so soon, but here we are.  On Friday, December 5th, Madi just started getting fussy, not eating well, and just wasn't herself.  We brought her in to the doctor's office first thing Saturday, and though everything looked ok, they sent us to the hospital just to be safe.  They drew a sample of CSF (cerebral-spinal fluid) just to be safe.  The fluid looked clear and infection free, but came back as containing a staff infection.  They admitted us right away, took out her external shunt, and started her on a course of antibiotic.  In order to be "clear" of infection, you have to get 10 days free from infection.  At that point, they will put in a new internal shunt.  They take a sample of the fluid daily, run a gram stain (to initially check for infection), then try to grow bacteria in cultures.  If no bacteria is grown in 72 hours, the sample is considered to be clean.  We were finally starting to get negative cultures when we got another positive.  I was heartbroken to have to start all over.  They changed her external temporary shunt as they were worried that infection was sticking to that shunt.  We started getting negatives again, which is awesome!!  If they stay negative, they will put in her new shunt on December 22nd and we will be home on Christmas Eve.  If we get another positive, then we'll be here for Christmas.

Today is December 16th.  Last night her external shunt stopped working correctly.  Right now they are trying to determine why.  Is the shunt clogged?  Will she need two shunts?  Is it just not positioned correctly?  Will she need to get a new shunt and undergo anesthesia and surgery again?  Will everything be ok?  Life is constantly full of questions.  We are off to get an MRI to try and determine why.  I am praying we wont need two shunts.  Double the chance of infection and failure just scares me!  

Hopefully we will have answers soon and I will be praying until we do!

Update... Her shunt was just positioned wrong, thank God, so we won't need a second shunt!