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Wednesday, December 31, 2008

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!

Wednesday, December 24, 2008

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!

Tuesday, December 23, 2008

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!

Sunday, December 21, 2008

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): (Prudence makes amazing minkee diapers) sells tons of amazing WAHM made diapers that I love! (these are adorable!!) (my friend owns this site and sells all kinds of diapers) (answers all your diapering questions)

Friday, December 19, 2008

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.

Sunday, December 14, 2008

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!

Saturday, December 13, 2008

God gave me butterflies...

I truly believe that God talks to us all the time if we just take the time to listen.  After I found out about Madi's diagnosis, I decided that I wasn't going to cry or be sad for her.  She was strong and God chose her for a reason, just as he chose me as her mother, David as her father, and Conner as her brother.  I knew that we could do this and our job wasn't to mourn, but to fight for her and give her the best life possible.  I knew it would all be ok, and God wanted to make sure that I knew He was beside us fighting for us, working out all the details, and paving the way for us.  I've always loved butterflies, which, of course, He knows.  From the day that I found out that Madi had spina bifida until the day that she was delivered, He sent me butterflies.  Every single day, no matter what the weather, I saw at least one butterfly.  They were my reminder that we could get through this and that everything would be ok.  Just as a butterfly, we would learn to adapt to change and life would be beautiful!  

Thursday, December 11, 2008

And here she is!

At 36 weeks, the day had finally come.  Dr. Moss felt it was best to induce and have Madi early because her hydrocephalus levels were getting high and he didn't want to risk long-term brain damage. 

David and I got to the hospital on Sunday night at 9:00 for our induction.  We got checked in and settled and they started cervidil to thin my cervix.  After 12 hours of nothing, they decided to try a folly ball (pardon my spelling on that) to speed along my dilation.  After 3 very painful attempts and a few tears, they abandoned that idea.  They tried a few more things but fast forward many more hours, and still, nothing.  I was given the option of  starting pitocin, though it most likely wouldn't do anything to change where I was at since everything else had failed, I could have a C-section right then, or they could give me one more week and allow me to (hopefully) progress on my own.  If I did progress, we would try again to induce.  If not, I would get a c-section when I came back.  I am guessing you already know what I chose.  Since I am not a fan of contractions that aren't effective, nor am I too keen on the idea of a c-section, I opted for another week.  Surprisingly, Madi's neurosurgeon, Dr. Moss, agreed to the idea, so I was discharged after 36 hours (which equated to 2 nights in the hospital).  I was a bit surprised to be going home empty handed, as I really thought that something would work, but Conner was glad to have his mom and dad home and I welcomed an extra week in my own bed.

On November 11th, at 37 weeks, the day had finally come (again).  On Tuesday morning at 4:30, David and I checked in to the hospital.  Today was the day we would finally meet our little angel!  Upon checking in, we were told that there were many emergencies the night before and our room would not be ready until 6:30.  They did decide to check me, though, so we knew if we were proceeding with a c-section or an induction.  Over the course of the week I had dilated another centimeter to 3 centimeters and had continued effacing to 60%.  My doctor, Dr. Elliot, (can you believe out of 17 doctors, my doctor was actually on call that night?!?!), was hopeful that pitocin would be effective in starting my labor.  At 8:30 we were finally brought back to our room.  They started pitocin at about 11:30 that morning.  I would have appreciated the extra 7 hours in my own bed, but none of that mattered now.  I was just happy to get things started!  They started the drip and slowly upped the level every 40 minutes or so to try and mimic natural labor.  They new my goal was to have a natural birth, free from pain medications or interventions, and they wanted to help me along that path.  They checked me around 2:30 and I was at 4 centimeters and 70% effaced.  I had made it up to a level 6 with the pitocin (out of 30) and was having regular contractions, though they were still not very intense.  They decided to speed things up by breaking my water and it worked.  My contractions slowly started to intensify and grow closer together.  I sat on the birthing ball for a while, sat in the rocking chair, and then started to get to the point where I didn't want to be talked to or asked questions during my contractions.  All I wanted to do at that point was concentrate.  I called David, who had gone home with Conner to nap, and told him he might want to start heading my way, just in case.  My mom was there with me, but I, obviously, didn't want him to miss the birth.  At 5:00, David hadn't quite arrived, but was just around the corner.  They checked me again and I was at 6 centimeters and was almost fully effaced.  They told me I was close and it would just be a few more hours-- I couldn't wait!  Madi's heart started blipping, though, so they were keeping a very close eye on me.  They had my lay on my left hand side and had me breathe oxygen through an oxygen mask.  David arrived safely in the room, offering his encouragement and support.  Moments later I started getting very fast and very strong contractions.  I didn't have any break in between them and my body was starting to tell me to push.  They had me roll over to check my progression, as they were worried I was only 7 or 8 centimeters and pushing would cause me to tear.  To their surprise, I was fully dilated, fully effaced, her head was engaged, and she was coming fast!  I was told not to push or do anything until the doctor could get there.  I tried to stay calm and relaxed, but my body was telling me it was time.  A few minutes later the doctor, a resident, a few nurses, and the NICU team arrived and it was time to push (let me tell you.. giving birth in front of about 9 strangers is just fabulous!).  I pushed for about 15 minutes and there she was!

Madilynn Joy Veprek was born November 11, 2008 at 5:40 pm.  Our birth was wonderful and  just as I had hoped for.  Madi did fantastic and even scored 9's on her apgars!  People would say to me that they were praying she would be born perfect, to which I replied, "she already will be, because she's exactly how God intended her to be".   She was even more beautiful than we had imagined.  She had a full head of dark hair, dark blue-ish grey eyes, 10 little finger and 10 little toes, and was absolutely perfect!  The covering on her back had remained in tact, her lungs were working well, and she was perfectly healthy.  After putting her on my chest for a few minutes they covered her back, cleaned her off, and took her to the NICU.  Conner got to meet his sister for the first time and I think he was very proud.  They let me spend that night with her in the NICU before taking her to Phoenix Children's Hospital.  At 7:30 the next morning they took her in an ambulance to the hospital.  David got to ride with her but was a bit disappointed that they drove below the speed limit.  I was released the next morning at 11:00 so that I could be there for her surgery and stay with her in the hospital.  Things couldn't have gone more perfect and we were so thankful!

Update- Wow, I just realized I left out a lot of our story!!  After Madi was transferred to Phoenix Children's Hospital, she had a surgery to insert a shunt and close her back.  The nurses and neurosurgeons knew that nursing her was important to me, so they let me hold her and breastfeed her just a few hours after her surgery.  She latched right on and did great!!  They didn't have a private room for us the first night, but I told them I wasn't leaving, period.  They had me sleep in a room they have for babies and moms who are waiting to get discharged, but are deemed "healthy", and came and got me whenever Madi was awake and hungry.  In hindsight, I should not have left her bed.  A nurse decided to give her morphine, but gave it to her too fast, and she stopped breathing.  They had to give her something to counter-act it, and I missed it all.  I will never leave her side again (unless I have a very good replacement). 

The next day we were transferred in to a private room.  It was on the corner and was really nice and quiet.  There was no restroom in the NICU and no food was allowed, so I had to leave every time I needed to eat or pee or change a postpartum pad, but mostly I stayed right by Madi's side.  The nurses were great with helping me nurse her and hold her.  My milk hadn't come in yet, so I was using a Medella supplemental nurser system with donor breastmilk to help supplement so that Madi could get the nutrients she needed to recover from surgery.  We had lots of visitors, but I really missed Conner!!  They had said we would probably be there 2 weeks, but we were actually only there 5 days.  They waited until Madi regained her full birth weight, then let us go.  No one could believe that we were leaving so quickly.  They had never seen another child with spina bifida leave as quickly as us.  All the doctors and nurses kept coming by to stare at us and tell us how shocked they were.  I wasn't shocked at all, though.  Madi had her momma there with her, good milk in her tummy, and many people praying for her. 

We were home two weeks when Madi started acting funny.  It turns out her shunt was infected.  They had to externalize her shunt and put her on antibioitcs.  After it had cleared for a bit, it came back, so they gave her a new external shunt.  After we got 10 days of no infection, they re-internalized her VP shunt and we got to go home.  The whole process took just under 3 weeks.  It was a rough time, but we made it through, and that is what is important!!

How it all began

I will not actually start at the beginning, as I am sure you all know how babies come in to this world and, to avoid any unnecessary embarrassment or details, we'll just skip that part.  Let's just say that we like making babies.  We had decided to stop preventing pregnancy when Conner was about 13 months old.  I hadn't gotten my cycle back, so we didn't see it happening any time soon.  Well, God had another plan.  I think that as soon we uttered the words, we conceived.  We had decided to have a home-birth as Conner's birth was picture perfect and we didn't have full maternity coverage, only complications of pregnancy.  When I stopped working to stay home with Conner, we had to choose between a lesser coverage or my working part time.  We chose lesser coverage because we felt that keeping me home with Conner the most important thing we could do.  Pamela Qualls of A Blessed Beginning is who we chose as our midwife and we started seeing her for our prenatal care.  

Things were going along smoothly, and everything looked good.  Pam asked us if we would like an ultrasound to determine the sex of the baby.  Considering we cannot even wait until Christmas to give each other our gifts because we get to excited, we decided to find out.  At our 21 week ultrasound, we were given quite a shock.  The tech told us that we were having a girl, probably the biggest shock of all, but that she was seeing some abnormalities in the brain.  The doctor, of course, was not there to talk to us, so she said he would call us the next day.  We were not too worried, as I had been eating very healthy, had been taking prenatal vitamins since April of 2006 when I found out I was pregnant with Conner, and Conner was born healthy.  The next morning the doctor called to talk to me about the results.  He was very vague and refused to tell me much, but he did tell me that she had what was called "the lemon sign" (though he wasn't kind enough to tell my what a lemon sign was, even when I asked) and that they couldn't find her cerebellum.  It was so hard not knowing what any of that meant, though I knew it was not good news and couldn't stop crying.  At this point, I didn't know if I would get to carry her full term, if I would get to hold her in my arms, if she would have a life.  I kept praying and telling God that I can deal with anything He sends me, if He just lets her have a life.  It didn't matter to me if that life was different.  It was HER life, and David and I would help her to have the most wonderful one that she could.  I remember calling my mom and breaking down in tears.  She asked me what the doctor said, and I told her  "it wasn't good."  David was an awesome support through this entire time.  He kept reminding me that God had a plan and that He wouldn't give us more than we could handle.  I called my midwife and told her the news, though she already knew because the doctor had called her also.  We worked on getting an appointment for a level 2 ultrasound, and it was looking like it was going to be weeks, maybe even a month, before we could get in.  Can you imagine not knowing what was going on with the child you are carrying for a month?!?!  Pamela said that she wouldn't let that happen, and began making calls.  She found us an appointment for a couple days later at the Phoenix Perinatal office in Scottsdale.  Getting in so quickly was a huge answer to prayer!

I decided I needed to know what was wrong with my precious little baby, so I started researching online.  Through my research, and many tears, I determined she had spina bifida.  David and I had heard of spina bifida, but really knew nothing about it.  I started researching what it meant for her in the long run, but each case is so different that it was hard to tell.  Everyone had questions, and I had no answers, which was very frustrating.  When we went in for our level 2 ultrasound the tech said she had found the problem, and asked us if we knew what spina bifida was.  I told her yes, I had done some research online and I not only knew what spina bifida was, but also that I knew Madi had spina bifida.  She has myelomeningecele specifically which is the worse, but also most common, form of spina bifida.  They finished up the ultrasound and then we sat down with Dr. Elliot to discuss what it meant.  He went over neural tube defects, the option of getting amniocentesis, what it meant for the birth, what it meant for her in the long run, and everything else I could think of asking.  Though our vision of a perfect home birth was crushed, our vision for our daughter wasn't.  She would have a full life.  She was capable of loving, and being loved.  We would get to hug her, hold her, love her, and raise her.  I told him that abortion was not an option for us.  She was absolutely perfect because she was the way that God designed her to be.  We didn't know why He chose her, or why He chose us, but we felt very blessed to have her as our daughter.  We could do this.  

Life after the ultrasound changed very quickly.  We started seeing the specialists at Phoenix Perinatal, with Dr. Elliot being our primary doctor.  We started talking to neurosurgeons, neonatologists, other parents that had children with spina bifida, getting in touch with the local spina bifida association, and reading books about spina bifida.  We soaked up every little bit of information so that we could be prepared and ready.  The neurosurgeon determined that we would deliver at 36 weeks because of the amount of "water" (cerebral spinal fluid) on her brain.  He did offer a glimmer of hope, though.  He would allow me to have a vaginal birth, not a c-section, as long as doctor Elliot agreed, which he did.  The research about whether a vaginal birth vs. a c-section was any harder on the baby showed that there was not a significant difference.  Most moms received a c-section, but not because it was easier on the baby.  It was done more for liability reasons.   I was so excited to hear that I could be spared of a c-section, which would get me out of the hospital faster, and with Madi at Phoenix Children's Hospital sooner.  The plan was that she would be transferred after birth to have surgery the next day and I wanted to be there.  

Things seemed to be going along well when we hit a bump in the road.  Insurance was not deeming our pregnancy as a "complication" and we would be responsible for all the doctor bills.  The ultrasounds alone were over $1,000, and we needed them bi-weekly.  We applied for ACHHS and were denied.  How would we pay for this birth?  Would we have to sell our house and move in with my parents?  How could insurance not deem this as a complication?  We did the only thing that we knew to do-- we started praying and asked everyone we know to pray also.  They were already praying for Madi, so it was just one more thing to add to the prayer list.  After weeks of having Dr. Elliot appeal insurance's decision, trying to find less-expensive doctors and hospitals with cash-paying maternity plans, praying, and trying to remember that God would take care of us, we got awesome news.  The doctor's office would work out a maternity plan that would be almost $10,000 less than we thought we would have to pay.  We were so thankful that God had taken care of us and that we could handle the amount of money it would be.  It would have to come out of our line-of-credit or go on credit cards, but it was manageable.  God didn't stop there, though.  A few weeks later we got a letter saying that insurance had not only decided to cover the "complication" part of our pregnancy, but the birth also.  All we would have to pay was our deductible of $2,500 and 20% of the office visits and birth.  David and I were so blown away by all that God was doing for us.  He was taking care of all the details, and we were amazed!  We thought that was it, but God still had more surprises for us.  The second application I sent to ACHHS got accepted, and they would help cover part of the bills that insurance was not covering.  What did that mean?  We would owe NOTHING to the hospital!  Not one penny!  We would owe a little bit to the doctor's office, but that's it!  I was brought to tears by all that He was doing for us!  We also had family helping us out financially, which was such a huge blessing.  Dealing with insurance hasn't been easy.  It's taken dozens of calls and they still are denying claims that they should be accepting, but we know it will all work out in the end.  

With a plan on how to pay the bills, a diagnosis for Madilynn, an awesome support group, and a nice round pregnant belly, we were only waiting on one more thing... our baby!

Read about Madi's birth and first surgery here: