About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Tuesday, February 19, 2013

Getting Ready for Tomorrow's Appointment

     In preparation for tomorrow's appointment, I finally finished sorting through and organizing my medical records from the last six years. I had to go back six years because that was when I first started receiving prenatal care for our first child, Dustin. I have no idea what all the high-risk pregnancy OB's are going to be interested in, except that the genetic counselor, Debbie, told me they definitely need all notes and records pertaining to my previous c-sections. Other than that, I am not sure what is relevant, so I sorted through all of it, organized it into an accordion file folder, and labeled it all according to date and type of record. So, I think I'm ready on the paper-work side of things, but I am a bit nervous!
     Debbie also told me that the first appointment with high-risk pregnancy OB's usually takes quite a while and is very extensive. I have absolutely no idea what to expect! I don't know what type of tests they will want to run, I've never met any of them before, and I only have experience with normal OB's and prenatal care. First I have a meeting with Debbie and the genetic counselors, where they'll give me another ultrasound to monitor Mira's progress, and as soon as I'm done with that, I'll head over to the high-risk pregnancy OB's. I really hope everything goes smoothly and that I feel comfortable with them. I already miss my regular OB. She's been with me for six years, and I love her, but she was sure to let me know that this type of high-risk pregnancy is out of her area of expertise. I appreciate her honesty, but I still miss her already, and the unknown is always a bit scary! We were also originally going to meet Mira's surgeons tomorrow and get a tour of the NICU, but they had to cancel that appointment, so hopefully next time that will be arranged. Joe needs to accompany me on that appointment anyways, because he'll be the only one able to go with her right after she's born, so he needs to get acquainted with the surgeons and NICU protocols and staff before delivery. For tomorrow's appointment, Joe's Mom, Brenda, is taking me, and Joe won't be going with us now because his FMLA will only cover a day off if it's particular to Mira's care. This will apply to the appointment with the surgeons and NICU, which should probably be in about 3 weeks. So Brenda and I will be going to the OB's tomorrow, and hopefully be able to set up an appointment for next time where Joe and I can see the NICU and meet Mira's surgeons.
     I am also nervous to find out the levels of Mira's hydrocephalus. I wonder if the fluid/pressure in her head has increased or not, but I'm hoping for the very best! It's very difficult for me to believe that she doesn't have function in her legs (that can't be confirmed until she's born, anyways), but I say that because, even though I can't see her or what she's doing, I can feel her! I can feel her kicking me! They don't want you to get your hopes too high, so they always let you know that she could just be hitting you, but unless she can reach my ribs and my pelvis at the same time with her arms, I'd say it's a good chance she's doing both hitting and kicking when she's stretched out. I know that I can't be sure of anything until after she's born, but I can certainly pray for the best and be hopeful, so that's what I'm doing!

Thursday, February 7, 2013

Breastfeeding, Vaccines, and Placenta Encapsulation

     One of my main concerns about being separated into different hospitals from Mira right after she's born (other than just not wanting to let my newborn go) is: How will I feed her? I breastfed my first child, Dustin, for 4 months; and I breastfed my second child, Aryanna, for a year. Nursing my babies has always been such a special gift during the process of becoming a mother, and Mira is going to need every healthy advantage she can get!
     After a lot of research, I have discovered that there are a few things I can do to increase her odds of pulling through her surgeries.

1) Breastfeeding. Breast milk has development boosting nutrients, immune boosting antibodies, and colostrum that is designed for a newborn's gut to start running as healthily as possible. Formula introduces bacteria into the baby's gut that their digestive tract is not yet ready for. Breast milk will ensure that she will get the maximum number of nutrients without introducing any foreign bacteria that could give her problems.
Breastfeeding will be difficult, though, because she will be in a different hospital. I am going to have to pump and hand express into little cups, and family, friends, and hospital staff will have to take turns transporting the milk over to her. Joe is going to have to learn how to syringe feed her because he is the one that will be with her at all times. She'll most likely be confined to an incubator, while lying on her stomach, so bottle feeding would be pretty difficult, if not impossible, for a little while. It will be difficult, but it's not impossible!

2) No Vaccines. Mira is already going to be waging a battle against her own body and against the trauma of surgery. Vaccines are filled with toxins and chemicals that can cause many complications, and almost always cause fevers and difficulty eating. Because of the battles Mira will already be waging against her own body, she does not need to have a war going on inside her blood, as well. She also needs to have the best shot at eating when she's allowed to have nutrients, so the last thing she needs are toxins that would bring complications into an already complicated recovery.

3) I am looking into Placenta Encapsulation. I have never consumed or encapsulated my placenta before. However, after I had Aryanna, I spoke to many women that did just that; had their placenta dehydrated, put into pills, and consumed them. If you've never heard of it, it can sound pretty strange or maybe even gross. The benefits, however, are astronomical! Also, there must be a reason why every other species on the planet consumes it's placenta after birthing babies (I think the rest of God's creatures are onto something). Throughout pregnancy, you feed your hormones, proteins, and nutrients to your baby (that sounds pretty obvious), but you also feed them to your placenta. The placenta absorbs all of these wonderful nutrients and chemicals that your body loses throughout the entire pregnancy. When you get the placenta encapsulated, you then take the pills, which turns into a wonderful medicine that is already engineered from your own body that encases all of the nutrients, hormones, and chemicals that you lost during your pregnancy and delivery. As soon as you start taking these pills, your body gets back what it lost, and what it desperately needs replenished. 
The benefits of taking placenta capsules include: Getting rid of the "baby blues" and postpartum depression, increasing lactation and enriches your breast milk (great advantage for Mira because then she'll be getting all of these nutrients, as well), fights off infections, increases energy, stops bleeding and aids in wound healing, natural anti-inflammatory, boosts the immune system, prevents anemia (which is very common after delivering a baby), combats stress, and releases Oxytocin (the chemical that creates happiness).
Mira will get all of these wonderful benefits from my breast milk, as well, and an increased milk supply so she can eat as much as she can! It really sounds like a win/win, and I think it's just another small step in ensuring she is in the best shape possible to bounce back from all of this!

Breastfeeding and no vaccines are crucial to her recovery, and I'm beginning to become just as passionate about placenta encapsulation, even though it is entirely new to me. I will have to arrange all of this ahead of time with my family, friends, and all the medical personnel that will be helping us to ensure that my wishes for my daughter are followed. But, just to be safe, we will make a special sign that goes on her incubator, and it will read: "Absolutely no formula or vaccines. Seriously... we will sue!
All babies deserve the absolute best, and I will do everything I can to ensure Mira gets exactly that!

Here are some informative links about the benefits of breastfeeding and placenta encapsulation, and some risks associated with vaccines:
http://www.babycenter.com/0_how-breastfeeding-benefits-you-and-your-baby_8910.bc 

http://www.passionatehomemaking.com/2011/10/the-benefits-of-placenta-encapsulation-for-postpartum-healing.html 

http://www.wisegeek.com/what-are-the-risks-of-immunizations.htm 
 

Sonogram Pictures


Meeting the Genetic Counselors

     The genetic counselors were AMAZING! The lead genetic counselor's name is Debbie, and from what I have come to understand, she won't be practicing medicine in any way, but her job is to basically be my high-risk pregnancy tour guide! My sister, Tammy, went with me to the appointment because Joe had to work. It was great that she went with me because the genetic counselors needed a VERY detailed family history, and the parts I didn't know, she did!
     We allowed an intern to sit in on the process, and she was also fantastic! (I have always allowed interns and students to sit in on any medical visits or procedures I have ever had; being shy is something that no longer exists after having children, and it's always a great thing to help others learn!) They mentioned the possibility of doing an amniocentesis, but agreed with me when I declined doing so because they agreed it was unnecessary to bring those risks to the baby just to confirm what we already know.
     The intern also sat in during my high resolution sonogram. During the sonogram, the stenographer was also amazing!, they confirmed everything that we suspected before: The open neural tube, the myelomeningocele, the chiari malformation, and the hydrocephalus. The new information we gained from the sonogram was that her left foot is now confirmed to be a club foot, and we now know that the gap in her spine and the myelomeningocele begin at the L2 and L3 vertebrae of the spine. We also know we will not be having an in-utero surgery, which is good news to me, because as far as they can tell, we will be able to carry her full-term! Which gives little Mira the best odds of recovering from all of the battles she faces because she will be fully developed before she starts having any surgeries!
     Unfortunately, many of the questions we have cannot be answered until after she is born. We know she will definitely need at least one back surgery and at least one brain surgery to have her shunt placed. However, we do not know if her other organs are compromised, or will require surgery, we do not know if her club foot will need surgery, we do not know if her chiari malformation will need operated on, and we do not know how many surgeries she will need, or how long of a period they will span across. We also do not know if she has leg function or if she has any brain damage.
     What I do know, which this is very hard to swallow but I am trying, is that I will have to deliver at one hospital, and right after delivery, once Mira is stable, she will be transported to another hospital to start her care and undergo her first surgery. It is VERY VERY difficult for me to be okay with letting her go, let her leave where I am, right after I have her! I hate knowing that I won't be able to be with her during her surgery! However, I KNOW this is in her best interest, and I know this situation is necessary in order for her to receive the best possible care she can get! This is why Joe will be going with her everywhere she goes after she is born. My sister, Tammy, said Joe is going to be the baby sitter, and Tammy is going to be the mommy sitter!
     Once she is born, we are going to have so many of our questions answered, so I guess this is the calm before the storm. We'll just have to enjoy the silence for now, and prepare the best we can, and then be ready to have information falling out of our ears once she is born and start getting ALL of our questions answered and then some!
     I do know that from now on, all of my prenatal care will be transferred to Pittsburgh, and that my genetic counselor, Debbie, will be making sure to arrange meetings with Mira's future surgeons during these visits, and will also make sure Joe and I get to meet all the nurses that will care for Mira, along with giving us tours of where Mira will be staying. She will take us through the NICU, get us familiarized with the NICU security protocols, and let us become as comfortable as we can with all of the environments we will be put in.
     I am VERY happy with the people I met, and I have a great feeling about the care Mira and I will receive there. I am feeling very positive about the way things are going, and I feel like Joe and I have a really good understanding of what we need to be preparing for. The wind is in my sails, and I am ready for this journey! I feel like Mira is going to impress us all, and that we have found a team of great people to ensure her care and future!
     
    

Tuesday, February 5, 2013

Medical Records

     My sister, Tammy, mentioned an idea to me; obtaining and taking all of my own medical records with me to see the specialists. Often when you have been referred to a specialist, it will be at a hospital you have never been to, with doctors that have never treated you, and in a county or state where you do not reside. While medical records can be transferred, sometimes, all of the above reasons make it difficult for your new doctors to obtain copies of some of your records, and thus makes it more difficult for them to treat you or obtain the needed information to know how to proceed.
     Because of the above reasons, I would highly recommend that others obtain copies of all their medical records for themselves, keep them in a file, and take them with you to every doctors visit you have. Blood work results, ultrasound copies, OB charts and notes, medical allergies, and any other information that is specifically important to you, or that you feel holds particular relevance. It never hurts to have these for your own records, as well, but if you have your own hard copies of all your medical records, I am sure the specialists will be grateful to have all available information right in front of them. This will help to ensure the process goes as quickly and smoothly as possible, and that you are also as informed as everyone else.
     I spent the day making sure I have all of my medical records ready for our big visit tomorrow, and also made sure to put my sister down as an authorized person to obtain and handle my records. Normally I would put Joe down, but his FMLA (family medical leave act) time is limited, so he has to save his work days for when surgeries begin; thus, my sister will be attending most of my appointments with me, and her and Joe will take turns being my advocate. I will be sure to request copies of all new information before leaving the appointment tomorrow, as well.
     That would be another important side note: Have a partner in crime. I have three people listed in various ways as contact people and authorized advocates. My father, my sister, and my fiance. My father is listed as one of my emergency contacts because, well he's my Dad, and he lives right down the road from me, so if I never needed anything, he is close and loves me and would be there in a split second. My sister is listed as an emergency contact and an authorized advocate, and so is Joe, because they are both most informed in every step, they both have the highest understanding of what I would want, I trust them both with my life to do as I would see fit, and at any given time, if there is anything I need to know, they also need to know it. Having people legally allowed to step up in your absence is very important! If something were to go wrong or I just needed someone else to help out because of convenience, we already have our bases covered.
     So, obtain all of your medical records, keep copies, make files, and take them with you to all appointments. Also, have individuals that you can trust, who you know will act accordingly in any situation, and authorize them to have access to everything you have access to. Have your emergency contacts already chosen, and have all authorizations and clearances taken care of. Only good can come of having these arranged.

Monday, February 4, 2013

Ladies: Please Take Folic Acid

      I never knew the importance of folic acid until my unborn daughter was diagnosed with spina bifida. After receiving her diagnosis, I threw myself into research to find out as much as I could about the defect and the many complications that come with it. One of the things I found out was how to PREVENT spina bifida. While spina bifida is not genetic, and has no cure, it can often be prevented.
     The development of spina bifida occurs during the first trimester of pregnancy. During this time, the spine would normally fuse together, but with spina bifida, the spine fails to do so. This defect usually occurs around 8 weeks of pregnancy, and at this time, most women do not even know they are pregnant yet. This defect can often be avoided if the mother is previously taking a higher level of folic acid before she even becomes pregnant. The CDC recommends for all women of child-bearing age to be taking 400 micrograms of folic acid per day. 4000 micrograms of folic acid if you, or one of your previous children have spina bifida because even though spina bifida is not genetic, if you have it or have had a child with it, your odds of having a baby with spina bifida increase drastically.
     This level of folic acid can prevent spina bifida, cleft lip, some heart defects, and other neural tube defects. You can either take folic acid supplements, or find folate (the natural form of folic acid) in many foods, such as beans, citrus, egg yolks, and dark green vegetables. The body, however, does not absorb folate (the natural form) as well as it absorbs the synthetic form, folic acid. 
     While I am not doubled over in self-blame, because frankly I do not think I could survive feeling like THAT on top of everything else right now, I do wish I would have been on a high folic acid diet before my pregnancy. I wish I would have informed myself before I was forced to find out this information, and I hope that others will learn from incredibly important information that I did not know. So please, eat more folate, take a folic acid supplement, and if you are even thinking about getting pregnant, look up what your body needs, and why. Prenatals do not cover everything, and by the time you find out you are pregnant, you may have missed your chance to prevent defects. My intention is not to frighten anyone, only to inform and hope that others act on that information.
 
Please view the following link to check my facts and learn from them: 
http://www.mayoclinic.com/health/spina-bifida/DS00417/DSECTION=prevention
Also check out more information and recommendations from the CDC:
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5113a1.htm

Little Inspirations

      Joe and I had been discussing naming our daughter Mira, short for Miracle. Then, a few days ago, my future sister-in-law, Cassi, shared a link with me. It was an article about a very unique shooting star, named Mira. The star is one of a kind because it does not travel like other stars, it shoots past the herds of other stars and creates it's own path. Not only that, but while Mira travels, it sheds debris. This debris does not turn into dead, used up mass, like the debris of other stars, but instead, Mira's debris turns into more stars, planets, and has the possibility of actually creating life!
 A picture of the actual star, Mira.
     As I read this article, I clearly was not thinking about the star itself, but instead was making this connection to my daughter, and crying a very relieving, happy cry. A beautiful, one-of-a-kind creation that breaks the mold, overwhelms everyone with her uniqueness, and exudes life everywhere she travels. In my mind now, that is my daughter. Mira. 
     Little inspirations, like reading that article, puts a spring back in one's step after they have received some heavy blows. It's the little things that allow you to exhale with peace. For the next couple days, I was able to relax. Play with the kids, and take real joy from listening to them laugh and play together. Spend some time spying on my son while I was overwhelmed with pride as I secretly watched him practice his letters without knowing I was watching. Listen to Aryanna giggle while Dustin ran around, acting crazy, just to make her laugh. Sometimes, just a sip of ice cold water and a deep breath can bring you some peace.
     When you're dealing with a situation that is out of your control, that is so big and life-altering it can completely overwhelm you, little inspirations are where you will find sanity. That is where I am finding my peace, and finding the will to make it through and take it one day at a time. One step at a time, one plan at a time, one piece of knowledge at a time, and one little inspiration at a time.