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Thursday, December 11, 2008

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: http://www.aworthyjourney.com/2008/12/and-here-she-is.html





8 comments:

Amri Dobbins said...

Wow mama. Your blog has left me with happy tears and a huge smile. Despite hard circumstances, it so so refreshing to hear you speak so positively, and have such faith in God. Little Madi is so lucky to have you guys! You have such a beautiful family, I wish many happy years ahead of you.

p.s. the cloth pic is adorable!

Lisa said...

Wow Jamie, thank you so much for sharing Madi's story. Your faith in all this is such an encouragement to me. I'm going to be following your blog now, and I'm anxious to stay updated in how sweet little Madi is doing. She's just precious.
Love,
Lisa (Cooke) Shepherd

James, Andrea, and Clara Smith said...

I just found your blog through Mom's Milk. You are an amazing inspiration. I am so humbled by your faith and your love of your little girl. Thank you for sharing your story so others like me could learn from it. God bless you and your sweet little girl!

Andy and Kiara said...

LOVE your story. Brought me to tears! God is good. :)

Anonymous said...

Jamie! I do love your story so much. All the best to you and your family.

Rachel said...

I am 17 weeks pregnant with our third precious gift from God, who was diagnosed with Spina Bifida 3 days ago. I still know so little about what all of this means, but I know God directed me to your blog and plan on spending the next weeks reading every word. Thank you for sharing your journey!

Jamie said...

Please feel free to email me with any questions, I am always happy to chat! jamie_lugo@hotmail.com

Ariel said...

This blog is bringing me to tears; God is GOOD! Thank you so much for continuing to share this journey with all of us. I'm 24 weeks but baby is measuring 3 weeks younger and she has also been diagnosed with Spina bifida. This blog gives me so much hope. Thank you so much you have no idea what it means to me.