Business as usual here at Spina Bifida Kids. : )

Just a reminder to all of our wonderful readers. Do us a favor, will you?


1. Make sure you "Follow" us. click on the follow button on the righthand side


2. Make sure you add the Spina Bifida Kids "Button" also on the righthand side


3. Let your SB clinic know about us. They are some of the first ones to get contacted when a familiy gets the diagnosis.


4. And if you had a great Fetal Monitoring Specialist like I did, drop them a card or give them a call and let them know about us for other moms and dads who are finding out about spina bifida. I know my specialist always wanted more information to give to new parents.


I also wanted to say how much I appreciate seeing the button on so many blogs already. I think the blogs on the side of the screen are such a great resource for new parents. So even if thats the only thing that gets used. Hooray!!! If you havent added a button please do so today!!


Ladies, I hope you all have a wonderful week, wonderful family dinners, wonderful therapies, wonderful doctor's appointments and anything else you are planning to tackle.

Goodnight
kari

Feature Baby: Louie

Finding Out

Right between the first and second trimester, I was given a test to rule out any neuro-tube defects. I got it done, and so far all the test I had were coming back with good news. Well, not this one. "Mrs. Jara, it seems like one or both babies might have Spina Bifida." I was shocked, especially because since I knew I wanted to have children I made sure to take the prenatal pills and take care of my body as much as I could. I was sent for an ultrasound 2 weeks later and, they found the Lemon head shape on Louie, Baby number 2. My boys never changed position while I was carrying them, so I knew who was who. Plus according to the Ultrasound tech, Louie was conceived 24 hours after Joaquin. How do they know, I have no idea. So I am at the hospital, shocked and scared. Since it was pretty early, the OB did not want to diagnose because baby was still small and he had some growing to do. So, I did not own the news.

Choosing Life

I go back around the 20th week, and it was confirmed. Louie has spina bifida, and the following were the words of the OB, "He has spina bifida, may we suggest fetal reduction. His quality of life will not be the greatest and you should consider the reduction. He may not walk, he may need a trach, he may have hydrocephelus, etc." I could not contain my emotions. I mourned my healthy baby for a week, but I made the decision that I was not going to give up on his life, and I was to proceed with the pregnancy. I was asked about the reduction 3 times, and all 3 times I declined. "Please do not ask me again!" I told the doc. I am keeping this baby and i will make sure he has the best life possible.

Mourning

So after a week or so of crying, I got on gears, and researched as much as I can. Every night after I got home from work that was my mission, to educate myself on his condition. I joined a support group on babycenter.com that has been a lifesaver and such an advocate for Spina Bifida along with the reassuring words of a great and educated Spina Bifida Nurse (who lost her job because budgetary reason..DONT GET ME STARTED ON THIS!) Well, when it came time to the visits with the Spina Bifida team, I felt I was empowered! I was able to talk their language and my outlook on the quality of life for my son was immense!!! So I carried on with my pregnancy and prayed for the doctors to be wrong.


Ready or Not Here They Come

Two months later, something unexpected happen. Joaquin and Luis pulled a fast one on me and decided I was going to do things on their terms. They started to alert me they wanted out!! On February 23, I was at work and I felt some contractions. I didn't pay any attention to them since I new it could happen. I went shopping after work, got some popeyes' and went home. Once I got home the contractions got a stronger, I knew that wasn't a good sign but decided t go to the ER anyways to get checked out. I had a feeling it was nothing and I was going to get sent home on bed rest..man was I wrong!! I was 3 cm dilated and i was not going home until these boys were born..........


I was not able to see my boys untiL 24 hours later, I called the NICU to check on them and the first thing the nurse told me is that they are ok and Luis was moving his legs, a lot. I couldn't believe what I was hearing. I was so happy, but he was not out of danger yet. He was scheduled for his back repair the following day. The risk was high, the Docs will "fix" him, but some nerves will run the risk of damage, and his leg mobility would decrease. 4.5 hours later, he was out of his surgery. Everything went fine. I went to see him, and he was moving his legs, again. I have never been so happy in my life, I gave God his praises and thanked him for really taking care of both my boys. A month later, he had his shunt surgery, he did have mild hydrocephelus; but once again, the Docs "fixed" my baby. One thing did happen that kinda scared the beejesus out of me. Luis developed dysphagia. Because of multiple surgeries and the intubating, his throat muscles got a bit weak. When he ate, he aspirated therefore he would choke up a lot. Since I had informed myself about Spina Bifida, the eating issues really got me scared and I was a wreck. Thankfully, after a swallow study, Docs determined it was dysphagia, and we thickened his breast milk with cereal, hence the chubby cheeks!

I do not want to say that the NICU stay for my boys was a blur, because I hated leaving them there. But, I know they were better there than with me. My boys, Thanks to GOD, were never in a situation in which they were sick. They were born premature, but complete. They both hit their milestones, got strong and came home. Joaquin did develop a double hernia after he came home, very common for preemies, but had it repaired and has been great since then.

Luis Now

Luis gets physical therapy once a week, developmental therapy and occupational therapy twice a month as soon as Early Intervention finds one and speech therapy to make sure he continues on track with his feedings. He is sitting us on his own now, rolls over, and rolls around all over the living room. All of his doctors are certain he will walk with proper therapy and bracing. We still do not know his level, and I think we are going to leave it at that. We do not want to determine his physical abilities based on a "level" We will know if there are any problems in relation to Spina Bifida as he grows up and start hitting his developmental phases, but to be quite honest, I have a perfect baby. I do have my days in which I am so sad because not one mom wants their children to have any challanges growing up and then I get to thinking about the future and how much he will have to face but, I wil not have had it any other way.The hardest part for me was my pregnancy.My boy will be 1 year old on February, and to me it means so much. I love my boys so much, I can not take it sometimes. God doesn't send just anyone a special needs child, I am glad he choose me and that he gave me beautiful boys, Luis and Joaquin.

Hearing

So, this is going to be one of those posts that is based purely on personal experience. But isnt that part of the beauty of this blog!? : )

For as long as I can remember Toby (this is Kari writing) has been shockingly sensitive to noise. I'm talkin horribly so. We would go out to somewhere like chick - fil -a and at about 12 months old he would scream and cry and act scared to death. We would sit close to a kitchen and any noise would make him break down. A plane flying overhead would send him into out of control tears. Dont even get me started on playgroups. Loud laughing, crying, singing, banging toys (all which happen at playgroups) would make him terrified.

After about 2 and a half years of this I thought I might just go crazy. It had gotten slightly better. But my three year old little boy still couldnt handle if a loud car would drive by as we were getting out of the car. He throw his hands over his hear and say, "It's too loud." We became very accustomed to this phrase. After mentioning some of these issues to our developmental specialists and him telling me, "Toby is a charming young man, who is doing wonderful, I dont see any cause for concern." Granted there wasnt any loud noises going on at the doctor's office. I really thought either Toby was losing his mind or I was surely going to.

I struggled between discipling him for bad behavior, trying to teach him to be brave and be just plain frustrated.

Until, I found the power of "google" I am not a strong believer in googling for medical advice. But I really was getting desperate. the first thing to pop up was this from the spina bifida association. It really is hard to find stuff on this, but you just have to keep digging. After reading about hearing sensitivty in shunted individuals for about the duration of an afternoon nap I felt like a weight had been lifted off my shoulders.

My child was not "bad" I was not a failure as a parent. He was not having major mental issues that the doctor's just hadnt told me about yet. He was just sensitive to loud noises and all because of his shunt and hydrocephalus.
Wow!!! I almost did a dance. (almost)

I wanted to write about this today because I can remember feeling so lost with Toby those first couple years. So overwhelmed when it came to this issue. And there was an answer. I was just unaware of it. This doesnt affect all kids that have shunts, just some of them. Toby's hearing sensitivity didnt get better over the course of that naptime reading, but I became to understand him more. To understand that something seemed way louder to him than it did to me and that was okay.

That afternoon something that was shaking up our little life became okay and just became another little mountain that I started climbing with him. The mountain just finally had a name, "Hearing Sensitivity"

Operation Beautiful.

Hi all. I've been sick for about a week, so I don't have a new Explaining Spina Bifida, but I did want to post. Tonight at the university I work at, we had the founder of Operation Beautiful. She has a pretty neat little project going on, that you can check out here.

Anyway, the main point of her project is to end fat talk. But, her message is really to love yourself. To remember that beauty is not an outward thing. It is inside of you.

While listening to the presentation, I just kept thinking about my son. And how, as he grows, his disability may make itself more outwardly obvious. How he might feel different. Or ugly. Or abnormal. On top of all the body issues kids are exposed to, our kids have all of the extra issues that come along with Spina Bifida . . . the braces, wheelchairs, walkers. The shunt and surgeries and therapies.

So, what can we do about it? I'm not entirely sure. But Operation Beautiful is all about knowing that you are perfect . . . you are enough, just as you are. So I am going to do my best to make sure he knows that. With my words. And my actions. Maybe even with post-its.

Our kids may not be normal, but is that really so bad? What is so great about normal? The point is that they are perfect. Just the way they are.

-Erin

What's the difference???

Carson is 3 months old. He loves to eat, and he loves to be held. He hates to take naps, He hates having his diaper changed, and he hates baths. He has good moments and horrible moments with the carseat, mostly bad if it's just me in the car and I'm trying to run an errand. He doesn't understand why I won't let him eat all day, or why I can't hold him when he's not eating. He smiles, and oh how his smile melts my heart. He cries, and oh how my heart just aches. He falls asleep in my arms, and though my arms ache, I hold him longer because I just want to stare at him. I can't believe that I am now a mom, and I can't believe that this little boy belongs to me. Somebody else holds him, and I'm slightly jealous, especially if he's smiling at them. He talks to me with oo or aa or agoo and though I am a very talkative person that usually dominates the conversation... I listen. He gets frustrated that he can't quite get a toy in his hand, and he loves when I hold his hand. He loves his daddy and he snuggles with his mommy. He's wonderful, and won't let me get a thing done. He wakes up at 5 am crying and goes back to sleep at 6 smiling. He hates to wear clothes; he looks so cute in his little jeans. He looks like his dad, but has his mom's nose. He drools, and smiles when he spits up on you. He loves the camera, and smiles at the picture of he and his mommy. He sticks his tongue out, and opens his mouth when you kiss him. He recognizes me- both my voice and my face, He smiles when you say "daddy". He stares at lights and loves looking out the window. He's my baby and I'd do anything for him. Raising a child who has Spina Bifida does come with some extra worries, extra concerns, and extra appointments, but as far as what's missing... I'm at a loss to find it. We often approach defects as though the incompleteness of what should have formed will equal an incompleteness in our lives with our child. As I can now say along with many other Spina Bifida moms, every blessing is there in abundance.

Let's talk about books....AGAIN! : )

Tonight, I want to go back to books.

Ive already recommended one, "Chronic Kids, Constant Hope" Just in case you missed that post. Good book. Run and Buy it.

Now the second one is slightly closer to my heart. : ) I want to tell you about a book that greatly affected my life. It's my husband's. I know it might seem self-serving to recommend this one. But I have a purpose and it's not a self-serving purpose.
This book and the ideas and thoughts put together truly changed my life and my way of thinking.
In his book, "Be Confident in Your Creation" My husband writes about insecurities, disabilities, trials and the list goes on. The reason I believe this is different then maybe some others is that it comes from the perspective of not only a Father to a disabled son (Toby), but from a man with a disability himself. Nathan, (that's his name) lost his eye when he was nine years old in a hunting accident. Might not seem like that big of deal when here we are talking walkers, and braces and all sorts of stuff. But really as a child, as a teenage boy, as a college student, and even a young married guy...It is.

I hope that you take the time to consider this recommendation. Just like I hope you took the time to consider the one before this.

If you would like to read an excerpt from the book, and how it really truly personally affected me. click here I know I sound like a commercial. : )

To order you can click on the amazon link

Just a sidenote....This was not something I wanted. I wasnt the sweet encouraging wife I should have been during the writing process. I thought that this would be something that would sit on his shelf and maybe one day if someone walked into his office who had a child with spina bifida or something he might be able to pull it out and help them through it. I never dreamed in a million years that it would be published. I certainly never dreamed that it would have helped me in any way.

I was recently told by my best friend who lives hundreds of miles a way from me that a friend of hers was telling her about this book a friend of HERs was reading. (you see where this is going) The friend was going through a huge medical trial in which she was not expected to survive the upcoming heart surgery. (she has two children) She was telling this friend how Nate's book has helped her so much.She didnt even know there was a connection back to us. I say all that to say....THAT was my moment. It's not the check in the mail, or the signed books or any of that which truly make me proud of my husband. It's moments like that. When his words have not only changed my life but the life of a complete stranger.

Blogs And Business

Just wanted to let everyone know...especially our new followers and readers. (Welcome, by the way) That the blog list on the side bar is for any one and everyone with a child who has spina bifida. So if you dont see your blog, (yours could have easily gotten misplaced or i might have mistyped it) please let me know. I want as many as will fit.

Also, If you have a product to sell (in which a portion of the proceeds goes to the spina bifida association) please let me know. Id love to try to give you a spot.

One more point of business. Keep the featured children coming. I love all the stories and they are incredibly encouraging. Your honesty is amazing!! Thank you to all you have already sent in.

Okay, well that's enough business for today. Have a wonderful weekend.

Kari

ps. on a personal note. ive put up a few more items in urbanupcycling.blogspot.com a portion of the profits from everything I sell does go to the spina bifida association. just wanted you to know to keep checking in. Ive got more ideas coming and am willing to work on personalized projects.

Featured Child: Alex

I am the proud mom of twin boys, Alex and Nicholas. They are now 9 months old "officially" but because they were born three months early, everyone refers to them by their adjusted age of 6 months. We learned at our 18 week ultrasound that Alex had Spina Bifida. To be honest we were not even sure what that was and we were terrified of what it would mean for him and how we could do right by him as his parents. We spent the rest of our pregnancy learning all we could to try to be prepared. We had complications during the pregnancy and the boys had to be delivered very early (not related to SB). Alex was only one pound, 10 ounces. He had to have his back closure and shunt placed when he was so incredibly little. We were told many potential negative things by the "experts" during this time, especially when factoring in the prematurity but I have to tell you, Alex has already defied so many of their own expectations and "predictions".


He is such a happy, delightful baby and simply thriving. At 6 months, he is like any other baby. He is babbling non stop, putting everything in his mouth, rolling, working on sitting. You can see the wheels turning when he meets someone new or finds a new toy. He stares so intently as if he's just figuring everything out and then out of nowhere he rewards you with the biggest grin and giggle, it cracks us up every time. Our new favorite thing to watch is seeing Alex adore his brother. He looks for him wherever he is, reaches out to grab his hand when they are playing and "talks" to him when they are in their crib.


Life with the twins is certainly never dull. Especially because they were born so premature and both of them have many follow up appointments, nursing visits, therapy, etc. I quit my job as a social worker to be home with them and manage their "social" calendar. It is like any other parent has described it, the most challenging and yet the most rewarding job I'll ever have!


Holli

Explaining Spina Bifida: The NICU stay.

Happy Wednesday! It's Erin from Tear & Mend. Now that my personal life has gotten back to normally scheduled programming I'm back on track with explaining Spina Bifida. So, this week I'm covering the NICU stay. I know there are a lot of people reading this that will have A LOT to offer. So please comment below with your experiences. If you have time, if you could post a comment on this same subject on my blog, I would appreciate it.

First things first...NICU stands for Neonatal Intensive Care Unit. Like ICU, but with an N in front. And you pronounce it, Nick-U. Don't spell it out. Nick-U gives you street cred.

These are the "sickest" babies that need constant care an attention. Donovan was in the NICU for a total of eight days, which I think is about average for a Spina Bifida baby. Here's a picture!

If you find out you will be having a baby with Spina Bifida while you are still pregnant, most NICUs will allow you to visit and meet with a social worker. They will explain policies and procedures. You will get to see what a room is like, and sometimes you even get to see the little tiny babies (most babies in the NICU are there because of premature birth and/or low birth weight). You will also be allowed to ask as many questions as you need, and if you are pre-assigned to a Social Worker, you can stay in contact as your pregnancy progresses.

For us, being able to visit the NICU left us with SO MUCH reassurance. The people there were so incredibly kind. The facilities were so well maintained and state-of-the-art. We knew what to expect ahead of time, so there were not surprises along the way...

NICUs have a lot of rules.

Oh yes they do. And they are for good reason, even though you probably wont like some of them. First, you must be very clean. VERY. There is a scrub-in station when you enter. They have very clear directions about how you are supposed to wash, and you must do as they say. They are watching. Scrubby, scrubby with soap and special one-use brush all the way up to your elbows. You probably want to bring some lotion with you, because at some point your hands will probably start to bleed if you don't.

Second, visitors are limited. This is the rule you don't like. Typically, a baby can only have two visitors at a time, and the parent has to be present. The visitor has to check in, get their badge, and then scrub in. Not a big deal, right? Well, what ends up happening is you have a family of four come to visit. You are still in your hospital bed recovering from getting knifed, so your husband will take them to see the baby. But they have to go back one. at. a. time. very. slowly. because remember...ONLY TWO VISITORS! So, if each person spends five minutes scrubbing in, and then 10 minutes staring at baby, you can see how long a simple visit can take. God forbid you need to pump during this visit (we'll talk about that later). Different NICUs have different limitation, but at Winnie Palmer, anyone under the age of 18 is not allowed to visit, unless they are the sibling of the baby. Further, NO ONE (not even siblings) under the age of two is permitted. Because kids are dirty germ-carriers. We all know this.

Third, don't you dare bring a stuffed animal in there. Because germs live on stuffed animals. And hair. And fleas. And lice. And, well, you get it. They can't wash stuffed animals, so they just aren't allowed. Same deal with blankets. Additionally, a lot of children born with birth defects that will need constant medical attention are automatically put on latex precautions. Latex allergies are often caused by repeat exposure to latex, so the theory is by preventing exposure from the get-go, the child will NOT develop the allergy. For this reason, do not bring a balloon into the NICU. We bought Donovan a really cute non-latex monkey balloon for Valentine's day (he was still in the NICU) and we were not allowed to actually give it to him. Bummer.

There are more rules, but they vary by hospital, so just ask for a list. Because I promise they have a list.

Finally, here are some questions you may want to raise with your social worker. Some good things to think about beforehand.

• Does your hospital have a special floor for NICU mommies? I didn't even realize mine did this until about two days into my stay. But it made a world of difference. It is really, REALLY hard not having your baby with you 24/7. Like, excruciating. So, to have been on a floor where I would have been hearing newborns cry and their momma's soothing them. It would have been like taking a knife to my heart. A floor with no babies, or at least a wing with no babies, is a huge help to your mental stability.
• Do they have a lactation consultant specifically for NICU mommies? Mine did, but I didn't find out until way too late. If your child is having their closure surgery the day of or after birth, you getting to hold them may be delayed several days. Donovan was three days old before I could hold him. This means pumping, and lots of it. Combine that with a c-section, and you pretty much have breast feeding's worst nightmare. A lot of this can be helped with the assistance of a good lactation consultant.
• Can you help with the baby's care? Donovan's nurses were excellent at letting me know what would be going on when. Because of this communication, we were able to give Donovan his first bath and his first bottle, and pretty much his first everything. THIS IS VERY IMPORTANT. There is so much going on that's abnormal, that you really need some level of normalcy during such a hard time. If a nurse gives your baby his first bottle or bath because you didn't know to make it a priority to be there at a certain time, you will be very, VERY upset about it.
• Are there places for your family to stay while the baby is in the NICU? The sad fact is that you will probably be discharged and sent home before your baby is ready. That moment...that drive...that night...was the worst pain I have ever felt in my life. I was not at all prepared for it, which probably is why it was so intense. I felt like I finally knew it was possible to die of a broken heart. Four days after a c-section and I was CLEANING MY HOUSE to try and keep my mind off the fact that my son was not in the next room. He was still at the hospital. Without me. With strangers. We didn't bother staying at the Ronald McDonald house because we were only about 30 minutes away from the hospital, but if you are any further than that, I would recommend it. Not being able to see them as soon as you want to is pretty hard. It would have been nice to be only about two minutes away.
• If your hospital charges for parking, can you have a pass? This is also something I did not find out until D's last day in the NICU. Winnie Palmer charged $4 per day. It adds up quickly. Most of the time they will give NICU families a pass that allows them to park for no charge.
• How many SB babies do you see a year? This will give you an idea of how familiar/comfortable the staff is with the entire process. Don't have super high expectations. I live in the Orlando area, which is pretty heavily populated, and stayed at a hospital specifically for babies (not children, BABIES) and they only see 10-20 per year.

That is all I can think of at the moment, but I hope it helps. If you are reading this and had a baby in the NICU, please comment with your own thoughts/stories/questions.

Overall, the NICU is an amazing place, filled with amazing nurses and babies and parents. But it is still very hard. Probably the hardest part of the entire process. It just feels so unnatural. But knowing what to expect ahead of time makes a lot of difference.

Something to read

Happy Tuesday everyone!!! I want to share with you an email that I received years ago. I saved it, and I'm so glad I did. I cannot read this without smiling, crying, and nodding my head.

The best kind of friend is the kind you can sit on a porch and Swing with, never say a word, and then walk away feeling like It was the best conversation you've ever had.

It's true that we don't know what we've got until we lose it, But it's also true that we don't know what we've been missing Until it arrives.

It takes only a minute to get a crush on someone, an hour to like someone, and a day to love someone, but it takes a lifetime to forget someone.

Don't go for looks; they can deceive. Don't go for wealth; even that fades away. Go for someone who makes you smile because it takes only a Smile to make a dark day seem bright. Find the one that makes your heart smile.

May you have enough happiness to make you sweet, enough Trials to make you strong, enough sorrow to keep you human, Enough hope to make you happy.

Always put yourself in others' shoes. If you feel that it hurts you, it probably hurts the other person, too.

The happiest of people don't necessarily have the best of everything; They just make the most of everything that comes along their way.

Happiness lies for those who cry, those who hurt, those who Have searched, and those who have tried, for only they can Appreciate the importance of people who have touched their lives.

Valetine's Day Cards for Special Parents

I saw this and loved it. Check out the website here and see lots more to chose from. I thought this was great for other parents of special needs kids or even your husband!!!

here's an example of one of them (well the text at least)


Your child's progress might not be that easy to see on a day-to-day basis, but when you reflect from time to time on how far he or she has come, give yourself some credit: Would that progress have happened if you hadn't been planning, praying, pushing for it? Everything you do for your child -- every appointment, every therapy, every intervention, but also every smile, every hug, every conversation -- makes a difference. But you're also making a difference in the world. Every time you give information about your child's disability to an educator, you make a difference for the next child. Every time you give advice in a support group or online forum, you make a difference for that parent and family. You are a force for good.

I would have cried for a week if a friend of mine had given this to me. Its so nice when you feel like you are doing something that is making some type of difference. These are printable by the way.

So Happy Valetines Day for all you mommies who are making a difference out there !!!!

Reflections.

Apologies, yet again, for missing last week. Work and life in general have been super crazy. I’ve skipped the last two weeks of Explaining Spina Bifida because I’ve been too busy/distracted to write anything worthwhile. I will be picking that back up this week and promise to post all about NICU stays next week!

This past Friday, Donovan turned one. So naturally, I've been thinking a lot about the last year of my life.

Finding out Donovan would be born with Spina Bifida after 34 weeks of thinking he was “healthy” was shocking. We didn’t know what to expect. I’ve never known anyone with a disability, much less Spina Bifida. But after working through that, and meeting him and watching him grow over the last year, I would not trade him for a “normal” baby. Not ever.

I will never say that I’m glad he was born with Spina Bifida. Because I know it’s nothing that will go away, and he’s going to have more painful surgeries, and therapies and tests, and I don’t like that he has to deal with that. But the every day stuff? It’s a blessing.

So many people have commented what a happy baby he is. Now, I know he’s a baby. And that he really has no clue that something is “wrong” with him, or that he might be a little different. But I just have to believe that he is always going to have this big smile on his face, and not a care in the world. He appreciates the simple things. He is so innocent. I hope he stays like this forever.

As far as what he’s done to me…what hasn’t he done? He’s taught me to be patient. To be extra kind to those who struggle. To be an advocate for those who can’t speak for themselves. And most importantly, he’s taught me that my faith is so much stronger than I thought it was.

When I told my doctor I didn’t want any prenatal testing because I didn’t believe in termination and did not want to even have it as an option, lest I question my beliefs, I meant it. I still think that was the right decision. Who knows if I would have had such faith if I had actually had a say-so in the situation. But when you find out at 34 weeks, there is nothing left but prayer. It’s all that’s left when you have the best doctors, and the best hospitals and the most supportive family. None of that can make your baby okay. Only by the grace of God has Donovan done so well.

I was worried we would reach a year and still have lots of questions floating around concerning his health. But, thank God, we do not. Donovan is now 100% stable in every area. He wont ever stop being followed by his doctors, but his appointments are spaced out by six months, instead of two weeks. There are no impending surgeries.

Everyone says a baby changes everything, and it’s true. But Donovan changed everything for the better. My faith is stronger. My marriage is stronger. My family is closer knit, and I am a better person.

With all its trials and tribulations, this past year has the best of my life.

-Erin

A Valentines day gift for you

   In lieu of Valentines day being just around the corner, I wanted to share with you a song I have recently fallen in love with. The song is sung by a dear friend of mine, Mark Gray.  He and his wonderful wife travel all over the country using song to point people to Christ . Time and time again I have found encouragement in their songs and in their friendship. This particular song "Before you knew how to love me" was released just as I was finding out about my pregnancy. Oh how special it was, because being pregnant, I felt this love. Far before Carson was even born I loved him, and I would give my life, my everything for him, without him even having to know me or know what love is.
    I played this song over and over listening to it, singing along with it... Oh I just loved it. The day after we found out about Carson and his Spina Bifida diagnosis I was on my way to church for soulwinning... my heart was heavy. I wasn't really in the mood, and I wanted to just crawl in a dark corner and stay there ( you all know this feeling ). Well I plugged in my Ipod and the first song that played was none other than "Before you knew how to love me" OH MY--- I immediately skipped to another song, and then within a second just shut it off... I couldn't listen to it... It was too much... I just bawled and bawled. Well a few days passed and I popped my Ipod in again and once again the song played. ~ sidenote~ My ipod is on shuffle so for it to "randomly" play the same song was not "random" at all. I know the Lord wanted me to hear that song...the reason being I actually really listened to the song... the whole song... and this changed everything. I was reminded how good God is, how much he sacrificed for me. You see God loves me, and He loves my little boy. He always has, He always will... It is His love for me that can carry me through anything... anything in this case being... Spina Bifida. Happy Valentines Day everyone. I love you!

Crafty Crafty Crafty

For those of who you liked my Spina Bifida awareness necklaces. I've put up some more products on the other site. Some bracelets and things like that. Hope you guys get a chance to check them out.

I could use some ideas for things to put on the bracelets. So please let a comment for words that are inspiring to you.

Again, a portion of the profits goes to The Spina Bifida Association.

So Go SHOP!!! URBAN UPCYCLING

All about the Nicu.

   Texas Childrens Hospital (as seen on tv) is equipped with private, separated bedsides,  and even recliners for the visitors. It is beautifully decorated and has a nice appearance. Los Angeles Childrens is not :) We were at Los Angeles Childrens. There are about 10 patients in a room- all different levels of care, and conditions. As you spend time with your little one, you are also present with other families and their little ones. Girls, this was the hardest part to me. You see, although our children have a reason to be in the NICU, it is very very different from others who are also in the same NICU. This is what I am going to talk about for you pregnant gals today. I know the feeling and the worry you get, when you hear the words Neonatal Intensive Care Unit, the NICU. We know, from other's experiences that only babies who are not "ok" at birth have to be put in the NICU. I call this the NICU mentality, and this is what I wish to diffuse. When we were given our hospital tour, I had on my brave face, my I'm ok with all this face.... I will cry later. You know the one, don't ya? Well, as we entered the NICU I lost all my hold and just sobbed... I saw babies; babies in the hospital and oh, that broke my heart. I knew that soon my baby would be in this situation and I was so scared. After that anytime someone mentioned the word NICU- I cried. It was a hard hard thought for me. Before I continue I want to take you to the end of this post and say, do not be scared about the NICU.
   Delivery day came, and Carson was immediately transferred to the NICU next door to me at Children's hospital. I wasnt able to visit him until day 2 just before his closure surgery. When I saw him, I of course cried and cried--- remember I still had the NICU mentality. I spoke with the nurse and asked how is he? afraid to hear the answer. She said "he's doing great" with a smile and then turned her attention back to her computer. So I wanted to know the truth... great??? what about this??? what about that???? why is he on that tube??? or why is he not awake??? What do you mean great? He's in the NICU? He can't be great.
   I think she noticed my reaction to her very happy disposition, and she proceeded to tell me all about him. He is very very healthy, she said.The wires, and tubes are only precautionary, not necessary. He has Spina Bifida--- around here that is music to our ears, He is fine.  Well, it took me a couple of days of observation around me, and I too rejoiced my baby in the NICU had spina bifida. I began to realize that it was a good thing. We were able to hold him, feed him--- both bottle and nurse--, change his diapers, bathe him, and take him home just after 12 days. Something very, very uncommon for the NICU. Feats that take months and months for others. Feats that some even are never able to do.
     After his surgery Carson was placed in a nursery with the "better" babies- these were babies that were doing very well, and didnt need intensive care. Well by far Carson was the youngest in there, and by far, by far the healthiest. I remember this couple that their baby next to Carson... their baby was 8 months old. She was born premature. She needed a trach, and a feeding tube. Another baby, 4 months old - Trach, feeding tube, colostomy. I felt guilty when I nursed Carson in front of the other mothers... something that they've not experienced, and probably won't. It was heartbreaking seeing these babies, and their parents in the NICU. These poor families still will face so many unknowns. We didn't. My husband and I would have a smile on our face as we saw, and held our baby. Yes, we wanted him home, and yes, we wish we had'nt needed to be there at all but honestly we learned that we had so so so very much to be thankful for. Thankful that it was Spina Bifida that took us there.
Now here's a list of what you need, and I hope others comment if I miss anything: A nursing pillow, a nursing wrap, blankets, burp rags, a camera, a good breastpump ( get the top model, I wish I had) a book to read, a notebook and pen, change for the vending machine,and a game or a deck of cards- We brought the game monopoly deal... so much fun. It gives you something to do whens he's sleeping. My husband brought along dvds of the Cosby Show- great idea!!! We would watch it while I was pumping.