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Showing posts with label spina bifida blog. Show all posts
Showing posts with label spina bifida blog. Show all posts

Sunday, May 27, 2012

My Spina Bifida Awareness Tattoo

I got a new tattoo a few months ago and haven't gotten around to posting about it yet.  I figured today was a good time :).  Last May at Conner's preschool, they had an ice cream social.  It's the biggest fundraising night for his preschool and part of the event is a silent auction.  One of the gift cards up for auction was for a local tattoo shop.  David bid on it for me for my birthday, but I never actually went and got it done.  I realized I had it almost a year and was afraid it would expire, so I finally went in.  I had been putting it off because it is a really important tattoo for me, and I was afraid that the artist would mess it up.

I knew that I wanted to get the 3E symbol (Educate, Empower, Embrace, Love life) on my foot, along with the words "I'll Always Walk Slowly For You".  The 3E symbol is the International Symbol for Acceptance and I really love what it stands for.  I wanted to get the words "I'll Always Walk Slowly For You" for all of my kiddos, as my reminder to take life slowly, one step at a time.  To me, it represents not rushing Conner and Madi (and soon Ramya) through life. It's about holding Madi's hands when she's in her HKFOs, even though it takes more time, because that is how she feels more secure.  It's about taking life slowly, enjoying every minute of it with them, and seeing the beauty in the small things.

The tattoo artist did an awesome job and really took his time, making sure he did his best.  He had gone on our blog and knew how important it was to me and didn't want to make a mistake. It came out bigger than I expected so it's taken a while to get used to seeing something so large on my foot, but I really like how it turned out.  When I saw his design, I thought about getting it on my shoulder instead of my foot, because of the size, but really wanted it on my foot because of what it stands for.   It was hard to get a good picture of it, since it's on my foot and my foot is curved, but I tried :).  It looks much better/more professional in person.

 
 


 
 

 
P.S. If anyone is thinking of getting a tattoo on their foot, yup, it hurts :). I am proud to say I didn't cry though!
 

Wednesday, January 18, 2012

Our Rifton Stander at the Science Center

I had really cool news to share, but need some time to get it all together.  In the meantime, I have been wanting to share these photos from the science center (I'm a bit behind... we went a while ago!!).  We took Madi's Rifton Dynamic Stander and it worked out really well.  She had a blast cruising around and interacting with everything!  Conner had a blast too, and I bet you can figure out by the picture what his favorite part was ;)





.... Yup, you guessed it right.  His favorite thing to do was walk through the stomach, then slide down the intestines to get "pooped" out.  Such a boy!!!!




Sunday, March 20, 2011

A note for all parents new to spina bifida and wondering what it is like....


For those of you wondering what spina bifida will look like for your child.....


Smiles



Perserverance



Intellegence




Nurturing



Adventurous






Beautiful



Inspiring



Fun-loving



Independent



Determined



Amazing




Have hope.

Spina bifida isn't the end of a life, it's the beginning of an amazing one.



 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11








Sunday, November 7, 2010

My Hospital Stay Tips

I've been meaning to write this for some time, but just never seem to actually sit down and do it.  I thought some people might find it helpful to have a good set of hospital stay tips, in case they had a baby/toddler/child that is facing their first hospital stay.  Please feel free to leave a comment with your own tips. 



1- If possible, tour the hospital your child will be staying at.  Talk to the doctors and nurses, find out where things are, and ask any questions you need feel will help you be prepared.  Find out how meals and the such work, where the bathrooms, showers, and washing machines are, and all that good stuff. 

2- This is one I really can't stress enough.  If at all possible, stay with your child  day and night.  I know that this is not doable for everyone, and my heart really goes out to those that want to be there and just cannot find any way to make it work, but I really feel this is huge for your child.  The nurses will be great with your child.  They will take good care of your child.  However, they usually have at least 2 children to take care of and they just cannot give your child what you can.  They cannot give them the same amount of hugs, skin-to-skin contact, feelings of safety, and reassurance that you can.  When I was in the NICU with Madi, the first night they did not have a private room for us so I stayed in a separate room within the NICU designed for parents to stay with their babies the night before they took them home.  The plan was they would come to get me when they needed me.  I regret that decision all the time, though I cannot change it.  Madi was upset and instead of coming to get me, they decided she needed pain medication (she may have, I'm not saying that, but she might have just needed momma too), and gave her morphine.  They gave it too fast, though, and she stopped breathing (or her heart stopped, I'm really not too sure, it's all kind of hazy right now).  They came and got me after they got everything under control, but I should have been there in the first place.  I still cannot imagine what it would have felt like if I wasn't, and the stuff they gave her to counteract the morphine did not work.  I can't even think about that.  I was in such a daze because I had just given birth and all that good stuff, and I should have just insisted I slept in a chair by her bed.  They moved us to a private room the next day and I clearly remember the set of twins across from us.  One was going to get to go home, but one was not, so they separated them to rooms side-by-side.  The parents would come for an hour or two and hold them (give them "friendly touch" as they called it) and then leave.  I felt so bad for the baby that was going to have to stay, though.  They would turn his lights on max during the night and poke and prod him all night.  He would cry this pathetic little cry, and no one was there to ask them to turn down the lights, or to do his testing during the day and let his little body rest and heal at night.  They did all his blood transfusions and everything and never let him rest.  How was he supposed to get better?  In Madi and my second stay in the PICU, a nurse was telling me one of the hardest things she had to do was let the babies cry because she had to attend to her other children too, as well as doing her computer logging and the such.  Beyond all that, I really think that the reason we got out so quickly the first time (5 days instead of the normal 2 weeks) is because I was there with Madi and she got so much skin-to-skin time.  I was nursing her and holding her just 2 hours after her first big surgery to close her back and put in her first shunt.  I know it's not typical, but I really think it helped.  The fact of the matter is no one loves your child as much as you, and no one will advocate for them like you will.  If there is any possible way to be there, I really believe it is best.  If you cannot be there, maybe you have friends or family or people from Church that can take shifts.  If none of that is possible, make best friends with child life.  They can get volunteers in your child's room as much as possible so they are not alone.



3- Do not be afraid to ask questions and speak up.  Just because they usually do something at a particular time or in a particular way does not mean it has to be done that way.  They always wanted to bathe and weigh Madi at 2 or 3 am because it was their slow time.  She was trying to sleep, though, and would get very upset.  I asked if I could just give her baths and weigh her in the morning myself, and they were fine with that.  Some things have to be a certain way, but not everything does, and it doesn't hurt to ask.  I also found it helpful to bring a laptop with me.  Not only did it help me pass the time, but I also could use it to look up information if I was confused on something.  For example, they wanted Madi to go NPO (nothing by mouth) for 6 hours.  For a breastfed baby, though, most hospitals only require 2-4 hours.  I looked on the La Leche League website, as well as a few others, saw that 6 hours was not necessary, talked to the doctor about it, and they happily agreed to 4 hours.  They just hadn't realized Madi was nursing.  Of course you have to be careful because there is LOTS of bad information out there on the Internet, but it is nice to be able to research a bit more if you feel you need to.

4- The hospital can be a noisy place!  Bring a fan or a boom box for some white noise.  We always bring our CD player/boom box (do they even call them that any more, or am I just really showing my age right there???) with a nice relaxing classical CD, then put it on "repeat" all night long.  It really changed the atmosphere of the room and helped us both get good sleep at night.

5- If your little one sleeps in bed with you at home, you can request that they let you sleep together at the hospital too.  We always have to sign a waver that says we will not sue them if Madi falls out of bed, but they have no problem with it.  Instead of a crib, they would bring us a "big bed" along with some blankets to roll up and put on both sides of the bed, next to the railing, to close up any gaps.  Even if you do not sleep together at home, sometimes it is nice to be able to be close.  Many times after surgery, kiddos just need to be closer.  I did not realize you could do this until a few nights in to our first PICU stay.  Madi had just gotten out of surgery and would not let me put her down.  I kept falling asleep sitting up on the couch with her, which they frown upon (they will take the baby from you and put them in the crib as they say it is a "fall hazard").  I told the nurse that I just wanted to be able to sleep next to Madi so she was comfortable and she said, "Oh!  You can do that!  Hold on!"  She came back with my waver to sign and a big bed for us.  It was awesome!!


6- Do not forget what you need to take care of yourself.  Bring everything you need to keep yourself fresh, like a toothbrush, toothpaste, change of clothes, deodorant, and things like that, but also things to keep you upbeat.  Bring movies, your laptop if you have one (you can even request one at some hospitals), music to listen to, some snacks, a water bottle, books and/or magazines, games if you have games you like, and pictures that your other children drew for you to hang up in the room as well as pictures of your other children (Conner was not even 2 when Madi and I had the most hospital time, it was rough!!) to name a few.  Chocolate, of course, is always pretty necessary too, as is money for food (unless you are nursing and get it free)

7- If you have a baby, and there is any way to nurse them or pump and give them your milk, do it!  You can also ask for donated milk instead of formula if you need to supplement (I supplemented with donated milk by using a supplemental nurser system until my milk came in).  Breastmilk is amazing and contains all kinds of crazy and cool stuff like DNA, Immunoglobulins (antibodies), Lysozyme (antibacterial), fatty acids, probiotics (or is that prebiotics, I can't remember), and so many other great things.  It also helps by lowering the SIDS rate, decrease the risk of some childhood cancers, and so much more.  Plus, it's free, and I like free.  There are a few things to know if you are nursing/pumping.  You can ask for a hospital-grade pump to have in the room.  I needed to pump every time Madi went NPO and many times after surgery when she wasn't feeling good, and it was so nice having a pump right there in our room.  They also gave me labels to stick on the bottles of milk so they could freeze or refrigerate it for me.  I got many comments about all the milk I had in their freezer (which I was later able to donate to a baby in need.... pretty cool!).  Another really important thing to know is you might be able to eat for free!  Since your insurance company does not have to pay for formula, they usually will pay for your meals.  It was so nice to get to pick up the phone, tell them I was a nursing mom, order food, and have it delivered to the room for free!  Some hospitals give tickets for food, some deliver it, some do both, but either way, you will be well fed :).  I found it helpful to bring my "hooter hider" to pump under, since you never really know who will walk in your room or when.  The doctors thought Madi was adorable and would come and watch us through our window and talk about how cute she was.  I thought it was super sweet, but I would have felt a little awkward about it had they been watching me in action.  I know they see it a lot, and think nothing of it, but I liked my privacy. 

 


8- If you find your child wants/needs to be held a lot, it can be really helpful to bring a good carrier, such as an Ergo or Beco, to hold them in.  If you have a wee little one, a good soft wrap, like a gypsymama or moby, works really good too.  This will give you free hands to do whatever you need, but will also let you keep your little one close.  You do have to watch for wires and the such, but it is very doable!

9- I liked having a pre-written care plan for Madi that the nurses could read before they started their shift.  When I had Madi I knew that we would be stuck at different hospitals for a little while.  Thankfully it was only a few hours, but I sent David with Madi and my care plan before I could be there.  The nurses said they had never seen one before, but were excited about it and they all made sure they read it and helped us out.  I put things in there like the fact that our goal was to breastfeed and to please help us do whatever we needed to make that possible, that I wanted to nurse on demand, to please keep the lights dim at night, to test as much as they could during the day so that we could rest at night, and things like that.  They nurses were very respectful and helpful.  Of course, you can request something and that does not mean it will be able to happen, but it doesn't hurt to ask :).  The important thing is just to know that your plan may have to change, and that's ok.

10- If you do not like a nurse, ask for a new one!  I thankfully never had to do this, but you can.  If you like a nurse a lot, ask for them again.  I did this a lot.  It really helped to have the same nurses as many days/nights in a row as we could. 

11- If you have an older child, bring games, postcards, their favorite lovies, and anything else that will make them comfortable.  I have not had a stay with an older child yet, since Madi is not quite 2 yet, so maybe some other more experienced moms can chime in with advice here.

12- Visitors are always nice, but it can be hard when your little one is in and out of cat scans and x-rays and all that fun stuff.  I found it helpful to just have them text with a time range that they wanted to come, and I'd text back with what time would work.  Sometimes I had to have them wait a few minutes, but it was so nice to have people to talk to and interact with.  The hospital can be so lonely!  I remember when Madi and I were there for almost 3 weeks and I was so homesick.  Having company made my day!  Don't be afraid to ask for visitors, but also do not be afraid to say "no" if you just need some time to yourself, or if your little one is under the weather and needs things quiet.


13- Updating everyone can be frustrating.  Everyone that loves you and your child will be calling to see how they are doing.  It is a good thing, don't get me wrong.  I always really appreciated that people took the time to call and that they cared enough to do so.  It was hard, though, when I had a crying baby or doctors to talk to, or had testing going on, or whatever, and obviously people do not know your schedule or circumstances.  I found it helpful to have a blog that people could read for updates (well, this blog ;)), to have a "go to" person they could call that I kept updated, to have people e-mail so that I could get back to them when I had time, and to send out mass e-mails every so often of what was going on and what people could be praying for.  It is awesome to have so many people loving your child and praying for them!

14- Do something special for your husband and little ones back at home.  I missed Conner so so so bad when we were away.  I had never been away from him before, he was still nursing, he still slept in bed with me, and wow was it hard to be away!!  I found it helpful to bring cards to write to him.  Even though he was little, he loved getting them in the mail.  I also got fruit snacks for him from the cafeteria to bring him every time I ran home to visit (when someone would sit with Madi for me) or when he came to visit me (when it was not RSV season, that is).  It sounds silly, but it was our thing, and it really meant a lot to him!  I think it really helped me too.  (** Just a little update... Conner is now 7 and STILL appreciates those fruit snacks and asks about them any time I am coming home from the hospital.  It's now our little tradition :)).  I also wrote David little cards and notes.  It helped keep us all connected and close.  We did not have a video chat set up, or I would have done that too.  It would have been really helpful.  We also were not able to have David and Conner stay at the Ronald McDonald, because David had to work (our moms helped watch him during the day), but that is also a great option for having the rest of your family close for visits and the such.  The Ronald McDonald house is awesome!!  They have kitchens and playgrounds, vending machines and toys, computers and activities, and a lot more.  Another great thing was letting some of our friends bring Conner and David dinners while I was gone.  They loved the company and yummy meals, and it helped take a lot of stress off of David.  Some of our friends even helped him clean the house during Madi's biggest stay, and it meant so much to all of us!

15- Don't forget a nice pair of slippers.  Hospital floors are very yucky, so you probably shouldn't (though I did) go around bare foot, so it's nice to have a pair of slippers to slip on and off.

16- Get out sometimes.  Take your child for walks.  Take them to the hospital playground or playroom if they have one.  Have someone sit with your child while you go shower, run home, spend time with your husband or other kids, or do whatever you need to do to stay happy and sane. 

17- Don't forget gum!  Sometimes things get crazy and you realize it's been a while since your last tooth brushing.  It's a fast way to freshen up until you have time to take care of yourself.  It really sucks when you can't figure out where that smell is coming from, and you realize it's you.  Yup, been there.  Deodorant and gum were my best friends some days!

18- It is ok to question why.  Do it politely, but do not be afraid.  I would have had a c-section, instead of the birth I wanted, had I not asked why I had to have that c-section.  I am so glad I asked why!


Well, that's all I can think of for now!  I hope this helps someone out there!


Here are some more tips to share from fellow bloggers:

http://mindfulmeerkats.blogspot.com/2012/03/10-tips-for-inpatient-stays.html

http://mindfulmeerkats.blogspot.com/2012/03/ten-tips-for-hospital-visits.html

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