It’s a…perfect spine!

So sorry for the delay of good news after my very melancholy post. But, I’m so, so, so happy to report that I am carrying a perfectly healthy baby.

Oh, also. It’s a girl!

They checked every inch of her. Went down her spine, bone by bone, twice! Looked at it from two different angels. Checked her brain and her ventricles (which was how they caught Donovan’s Spina Bifida). The words beautiful and perfect were used too many times to count.

I had gotten a call back from the genetic counselor the afternoon before that my blood work came back “beautiful”, giving me a 1 in 800-something-or-other chance for SB, which was actually much lower than my age-based risk factor (which is 1 in 400-something…weird – I’m only 29!). So, I went into the ultrasound pretty relieved and excited to find out if I was having a Rory or a Logan, and not as concerned something was wrong.

I was also relieve to see my giant placenta was still hanging out anterior-style, which was why I still wasn’t feeling much.

But, she was moving and kicking and just looking like a sweet little baby. She kept her legs crossed like a lady until the very last minute when the tech almost forgot to look back and tell us the sex!

With Donovan, I truly did not care about the sex. I didn’t express any interest in one gender or another. And, I didn’t care this time either. When people asked I told them if someone held a gun to my head, I’d probably pick a boy, but it didn’t matter. Which is how I felt.

But, I’m really excited. Much more so than I thought I would be. This is going to be our last baby, care of a tubal ligation during my c-section. I’m confident in that decision. I’m done with pregnancy, and both Max and I would love to foster and/or adopt some day. But, part of me was a tad bit nervous if I never had my own biological daughter that maybe I’d be missing out on something? Now that is not a concern.

Also, the shopping! And, the knitting!

Anyhoo, that is the happy report. I’m not sure how much I’ll keep this blog updated. I’m crazy busy with work and a big consulting gig. I’m also still not feeling great. But thank you, thank you for your thoughts and prayers! God has been so faithful to us.

Rogan.

So, my commitment earlier this year to blog didn’t really pan out. Things have been busy. Aside from work and having a three year old, my family has faced some of the hardest months of our lives due to a series of medical emergencies and unfortunately, the very tragic death of my husband’s brother-in-law, who he just calls his brother.

Everything started to snowball just a couple of weeks after I found out I was pregnant. This one was planned, just like the other two. And I was and am super happy to be expecting again. But it’s definitely been different than the first two. 

With Donovan, there was just joy – plain and simple. Not tarnished by a whole host of “what-ifs”. I did everything I was supposed to do, had no risk factors for anything, and I had wanted him so, so badly.

With Ned, joy again! I don’t know what made me think it was a great idea to get pregnant when Donovan was 13 months old, but I just thought it was a great idea. And then the miscarriage happened. And that sucked. But looking back, I know God was totally in control of that situation.

And now it’s Rogan’s turn (Logan or Rory = Rogan until we know the sex). It didn’t dawn on me that since I had a pregnancy that began badly and one that ended badly that this pregnancy might not be the easiest to get through emotionally. Combine that with a new set of doctors and new insurance resulting from our move last year, and it’s been rough.

I’ll be 18 weeks on Saturday and I still find myself feeling pretty disconnected from this baby growing inside of me. In the beginning, there was spotting – something I never experienced until I had already known Ned was not going to be staying with me. Three different times I thought, well, that’s it. But it wasn’t. All was well.

We had our NT scan at 13 weeks, and it was perfect – which I am extremely thankful for. The only discouraging finding was the position of my placenta – flat up against my belly. I have an anterior placenta. Now, normally, I wouldn’t care about this. I’m having a c-section and it doesn’t matter where my placenta is. BUT, when you have to wait 18 weeks to find out if you are going to be one of the unlucky few who end up with multiple pregnancies affected by Spina Bifida, then it’s a really frustrating situation to be in. Because the placenta is nice and fat and growing all the time, it acts as a cushion between my stomach and the baby. So, all those kicks I should be feeling by now? Nada. I feel nothing.Normally that would just be a bummer, but in my situation, it’s an evil mind game. Is my baby alive in there? If it’s alive, can it move it’s legs? Maybe it’s just a lazy baby?

I feel fairly certain it’s still okay. We’ve seen it twice now. I heard the heartbeat on the doppler at 14 weeks. I’m gaining weight. So, that’s all good. But, I cannot stop thinking “What if?” What if this baby has Spina Bifida. I know we’ve done it once. I know we can do it again. But, Donovan is so high functioning and has had so few interventions compared to most children. Can I go through everything again, and then some?

Normally, women have a 7 in 10,000 chance of having a child with Spina Bifida. If you’ve already had one, those chances jump to 4 in 100. Up until a week ago, I knew it was possible, but had never heard of it happening. And in the past two weeks, without even searching out that information, I’ve heard of two different couples. I can’t help but think God must be preparing me for some bad news.

Either way, I know we’ll all be okay. It’s just the not knowing that drives me crazy…makes me feel far off and distant. Like, until I know exactly what the situation is, I cannot “own” this baby. That makes me feel bad, but I know it’s just how I cope. The less I am connected to a certain idea, the less it will hurt if I get some bad news.

Anyway, this is a really depressing way to “announce” a pregnancy if you didn’t already know, but it’s all that’s on my mind right now. Our ultrasound is May 11th. I may have more to add before then, or I may not. Either way, prayers are appreciated – for peace, understanding, and most of all for good news.

Three years later

Three years ago today, after the most gut-wrenching 48 hours of my life, Max and I sat in the office of a perinatologist and found out that Donovan had Spina Bifida. We found out two days prior that something was wrong, but we didn’t know what. All we knew is that he had enlarged ventricles. Knowing nothing about the human body other than what I learned in my 7th grade health class, I had no way of knowing what that meant, or what it could be linked to.

I don’t really remember what I was thinking or feeling that day. I remember being confused – I didn’t know what Spina Bifida was. I remember crying. I remember finding some relief in the fact that he was diagnosed with meningocele only (that would turn out to be incorrect). I remember the doctor being so kind – he was honest with us, but not negative like I hear from so many other mothers. Maybe that’s because we were past the point of termination, but I’d like to just think he was one of the good ones that knew my baby’s life was worth living.

The next day, I wrote an email to pretty much everyone we know…

“Max and I ask that you please don’t be sad for us. We are doing fine. Of course it is nothing a parent would want to hear, but it is not life threatening, and it is not neurological. Every child is a miracle. We were blessed to be able to get pregnant and carry a baby to term, which is so much more than other people get the opportunity to do. Even in the worst of cases, he will be able to live a full and happy life. All of you that surround us will ensure that, we have no doubt.”

Clearly I was still a little confused, as is evident by my statement that this was not neurological – I think I meant cognitive?

Regardless, looking back, I have to admit that I am really proud of how we reacted. I still feel the exact same way I did that day. I still know people that have never been able to get pregnant or carry a child to term. I still feel just as lucky and blessed, if not more so, as any other mother out there.

Today we sat in a room with the staff that will oversee Donovan’s transition into pre-school, and out of state services. Throughout our hour-long meeting, their faces continually lit up just by watching him and hearing him. They were not evaluating him – we were just filling out paperwork. They called him a miracle. And, he is – but not because he is defying odds that other children do not. The fact that he can walk independently, while other children need wheelchairs does not make him more important.

The thing that is special about kids like Donovan is that they make people believe in miracles.

I don’t know why God gave him legs that work better they they are supposed to, or a shunt that has not given us a single problem from the day it was placed. I don’t know why he has the language skills of a five year old, and the sweetest personality of any child I’ve ever met (though, I may be biased). But, I think, it’s because God is using him to show people what is possible through the power of prayer and faith.

That’s the only explanation for any of this. And I think it is the perfect explanation.

Donovan’s Third Year: Gross Motor Skills.

Most the people that wander by, are probably doing so to read about Donovan. So, I thought it might be a good idea to update y’all as to what he’s been up to for the last year. I started writing a bunch of updates, but it’s getting way too long, so I think I’ll just divide them up over the next week or so.

First, a picture! This is Donovan on Christmas day practicing on his new tricycle!

First, let’s talk about gross motor skills. Even though this is usually the most challenging area for a child with Spina Bifida, he’s doing amazing! He continues to be our little miracle baby. He’s a full-time independent walker. Delayed in some areas, but very mobile.

He can run and walk and is learning to ride a tricycle! He’s not able to jump or climb stairs without support.

His new physical therapist here decided he would benefit from some braces, so he has a pair of SMOs. They are tiny little braces that go up to just above his ankle. He tends to walk on the insides of his feet, so they are meant to correct that while he’s developing an ankle strategy (which is apparently something you do between age 2 and 4).

About a month ago, his PT let us know she was discharging him because she didn’t see a need to continue right now. Max was super stoked. I guess it is a positive thing. My only thought was, “But there’s still things he can’t do!” Then my husband had to remind me there may be some things he can never do, or things that he wont be able to do until he can understand the ergonomics of it all. Ohhhhhhh yeah. Forgot about that!

Clearly, he’s probably on the “above average” side of gross motor skills for a child with Spina Bifida. We feel so blessed because of this, but we don’t take a single thing for granted. I know that every step and milestone is its own little miracle. I also know it can all be taken away in the future.

I also know that no mater how above average he may be, there’s always going to be things he can’t do. I’m totally fine with this. I’m just so proud of him as a little person, it honestly doesn’t matter to me. But, my heart hurts a little for him. He’s already asking if he can play football like his older cousins. We’ve really hyped up the appeal of being the water boy. He’s excited about it now, but I know when he’s older he’s going to want to do things that he just can’t do. Even if he were physically capable (which he very well may be), he will not be medically cleared to play any sort of contact sport because of his shunt and hydrocephalus. So, my goal over the next couple of hears is to start focusing his attentions towards things he can do and excel at – things like swimming and music just being a happy kid.

I think the bottom line is that no matter what your child’s challenge, you’re going to hurt for them for the things they want to do but can’t. I need to remember that every child has challenges, and their strengths are what needs to be the focus. I don’t want him to grow up focusing on what he can’t do, so I need to put him in the best position to excel at what he can and wants do.

 

#2: Take my vitamins. {100 Change Challenge}

I am TERRIBLE at remembering to take pills. Terrible. Be it a vitamin or an antibiotic I know should be taken for it’s full course, I tend to just forget to take them.

I also hate taking them. So, that probably does not help me remember. Big pills are really terrifying to me. Or little ones that aren’t coated.

When I was pregnant with Donovan I had such a sensitive gag reflex I remember there being mornings I would be trying to swallow my pre-natal vitamin for 30 minutes. When I finally mustered the courage to swallow it, my throat would often experience what I could only describe as a horrible cramp. A charley horse of the throat. I couldn’t breath. It hurt horribly. I imagine that’s what it feels like to be intubated without some sort of sedation. ACK! This same thing happened to me last month when I had a terrible cold and was trying to knock myself out with some NyQuil (because surprise, surprise – I also will NOT drink liquid medications).

Anyhoo, over the last two weeks, I’ve been working on a method to swallow pills that seams to be working – sip of water, insert pills in mouth, deep breath through the nose, plug the nose, swallow. Clearly, I am making this very complicated. But I can’t help it!

Sidenote: If you have the hiccups, plug your nose and drink as many sips of water as you can. I promise it will make them go away!

So, my second challenge this year is to take my pills every day. In general I take a multivitamin, vitamin D and vitamin B12 (per my doctor, this helps with fatigue). But, I am also including any other prescriptions I might be told to take this year.

#1: Read the Bible. {100 Change Challenge}

I decided to make this my first change because my relationship with God should be my #1 priority. I’m not going to pretend like it is, but I know it should be. That’s something I’m working on this year in general – making more time for Him. He and I…it is a relationship after all.

Reading the Bible is something I do pretty often, but not every day. And much like every diet I’ve ever attempted, when I miss a day it becomes really hard to get back on track. I’ve talked about this with Max and he was able to pinpoint that I felt the need to study the Bible, instead of just enjoying it. In the past couple of months, I’ve become much more consistent at reading most days, because I am just reading for pleasure – much like I would a novel – instead of making myself take notes, read commentary, etc.

I bought this One Year Bible a few years ago because it’s in my favorite translation – the New Living Translation. They layout of the plan is also appealing because you get a little bit of everything, every day – old testament, new testament, psalms and proverbs.

I think at some point I made it into February. Whoops. But, I’m committed to making this year different

2012. And my “resolution”.

Here it is. The new year.

Currently, I am sitting at my computer typing up this post because I can’t sleep. Why, you ask? Well, it’s not because I’m busy partying or sipping champagne. It’s because there are fireworks (or bullets) going off in the ghetto across our fence, and I can’t sleep until it stops. Also – PUBLIC SERVICE ANNOUNCEMENT – don’t send group texts to people at midnight. Some of us are old and boring and trying to sleep.

Moving on.

As promised, I’m planning on getting back to blogging this year. I didn’t really mean to abandon my little corner of the internet for over a year, but with a new job, two moves, trying to make new friends…and oh, raising a toddler, things have just been a little busy.

But now to this resolution of mine. It’s not exactly a resolution…more of a project. Or a challenge. Let’s call it The 100 Change Challenge…because I like alliteration. I’ve tried it once before and was unsuccessful. Primarily because of not being in the greatest state emotionally, due to a soul-sucking job. Since I actually love my job now, I’ve had a much more successful year at improving various areas of my life. So, I’m hoping this is something that continues on into 2012.

So, the project is that I plan to make 100 changes to my lifestyle this year. By lifestyle I mean the whole me – mind, body and soul. This sounds like a lot, but I don’t really think it will be. Many of them are things I already do, but not consistently – take my vitamins, read the Bible, floss, drink at least 64oz of water a day, and so on.

I’ve learned in the last few years that God laughs at my plans and likes to throw me curve balls, so I’m not planning on planning out my changes like I did before. I didn’t plan on having a baby with Spina Bifida, or a miscarriage, or living where I’m living or working in the field I’m working. All of these things have happened for a reason, but I am finding myself to be a much happier person living for the day, and not getting wrapped up in some picture of what I want my life to be like. So, I’m making them up as I go, to face what my current challenges are at that moment. Because honestly, I have no idea what my life will look like in a year.

Anyway…I’m pretty excited about this little plan of mine. 100 changes in a year, means a new challenge every three or four days. And I’ll be sure to post them all here. Feel free to follow along!

Under construction.

Hey, y’all! You may have noticed I’ve been gone a while. All is well, life has just been super busy with a new job and two moves in between. I’m planning on getting back to blogging in the new year and look forward to seeing you all then!

In the meantime, I’m trying to update the look around here, so you may see random pictures, such as the current bananas, and some other things that don’t make sense. Just move along now, and come back in January.

Happy December!

I know, it’s been a while since I’ve blogged.

Basically, I’ve been super busy. Some exciting things are happening in our lives that have had me sort of tied up that I’m looking forward to sharing soon! (No, I am not pregnant!)

But, I am glad to see the snow back on my blog, the arrival of cold weather in Florida, and my Ugg Cardies back on my feet.

Other highlights:

Donovan is now a full-time independent walker!

Max is now a full-time stay-at-home Dad!

The rest of the updates…just give me a few more days. :)

Merry December!

They are worth it.

When you have a child with Spina Bifida, or I imagine any other special need, you need support. People who have been through what you’re going through that can give you advice and comfort you in some of the darker moments. Friends and family go a long, long way, and I wouldn’t have survived the last two years without them. But there are some things that you just can’t get unless you’re walking this path. And as silly as it may seem to a lot of people (my husband, included) you can find a lot of support online.

I have met an amazing group of women on a message board on Baby Center, specifically for parents of children with SB. I’m not on there too often, but when I do head over I am constantly amazed by the care and compassion and dedication they all have to each other, new parents who just got the diagnosis, or people just seeking out advice for their friends or family members.

I know I feel super lucky when a mom or dad who just got the diagnosis finds us. It’s like, God’s own little way of maybe saving a baby. You see, a lot of doctors deliver the diagnosis of SB to expectant parents and advise them to abort. They paint a picture of mental retardation, paralysis and other tidbits of misinformation that would make anyone question what kind of life this child will lead. And while, yes, there are some worst-case scenarios that involve a very low-level of physical and mental functioning, they are few and far between. And even in those worst-case scenarios, who are we to say they wont change the world? That their life isn’t worth it?

Last week, we welcomed an expectant mother who is obviously scared and hurting. My heart is aching for her and her baby, because of what I fear her decision will be. Reason and logic and all the explanations in the world are not working. She is expecting the worst of the worst. And no one can promise her she wont get it.

I am pro-life. I have never been shy about this fact. In my head and in my heart I cannot reconcile how it is okay to take a life just because that life is not yet outside of the womb. But, that’s not what this is about.

Regardless of your stance on abortion or sanctity of life issues, can you disagree that my son is worth it? He is not a burden to me or society. None of our children are. Do they take some extra time and care? Yep, they sure do. Is the world a better place because of them? Without a doubt.

Conservative estimates are that nearly half of all babies with SB are aborted. Some states even have laws allowing very late-term abortions because of diagnoses like SB. The thought of that makes me sick. To think that so many people think that my son did not deserve his life. It’s just…sad.

So, we’re responding the only way we know how. With prayer. Prayer for the parents, the babies and the doctors that are counseling them. So, please join me and over 1,200 1,500 others tomorrow at 12:00pm EST for the Spina Bifida Kids Worldwide Day of Prayer.

Because they are worth it. All of them.