Big step for mom

It's funny to sit here and read my own posts and realize just where my mind and emotions have taken me over the past year.  Up to the day of Emma's diagnosis, I  had never really experienced anything as emotionally challenging as I would soon be facing.  For me it was complete shock and disbelief.  I didn't know how to handle things and certainly didn't know how to feel.  I guess maybe I thought I was doing okay but in part, I was tucking those feelings away for another day.  I've been doing that with my emotions since we found out back in July 2008.  Occasionally things would bubble up to the surface and I felt like I handled it and moved on.  I didn't blog that much because they all had that "Debbie downer" theme.  Now that she's 14 months old and she doing great, I'm still emotionally stuck.  It's hard for me to let go of worry, always thinking down the road for her and forgetting to enjoy the blessings we see with her daily.  This past monday, in a new doctor's office with a complete stranger it hit me!  Guilt!  We were going through the questions for depression, which was my reason for going in and I immediately started crying when she asked me about my kids.  I've neglected myself for the past year and focused on everything for Emma and my older kids.  I didn't want to have any worries as far as my health was concerned, I couldn't handle that.  But a complete stranger, who had known me for all of 5 mins could see right through me. 

I knew all of this had started for me when we found out about the SB.  There was no rhyme or reason for why she had it, she just did and I couldn't change it.  I wanted so much to make it go away for her everyday that I was pregnant.  I'd read and read until I had read every article and journal they had out there.  But ultimately, I felt responsible and I have never fully admited that.  Was it my weight that caused it or something I was exposed to or the BP meds I was on?  I asked myself that so many times and no amount of people saying "It's not your fault" could make the doubt in my mind go away.  Monday that doc asked me if I felt guilty and I immediately said "Yes"... because well, I do.  When I read posts on the boards from other moms who are just finding out it makes me ache to think they feel to blame, but here I am harboring these same feelings of guilt!  It's so much easier to look outside of yourself than deal with any of your own emotions.  I felt like I took a step in the right direction on Monday.  I don't want another mom that goes through this same experience to feel like they're the guilty one.  My doc said something that will stick with me for a long time...."God just stitches us each up a little differently when he's making us".  We've had tons of discussion about the reasons but ultimately, God knew exactly what he was doing in Emma's life.  It has taken a long time for me to realize that and I feel like I will always have moments of doubt but we have been so blessed to have Emma in our lives, SB or not, I wouldn't change a single thing.  She has a smile that is infectuous and a giggle that makes her dad and I melt and she is trying everyday to show us how SB isn't going to keep her down.  So I can't let a little thing like depression keep me from enjoying such a beautiful life with my awesome family!!   

Spinning my wheels a little

Okay, so we had SB clinic today for Emma and I'm fighting the urge to come home and burst into tears!  I've really been looking forward to her appointment for a while, it seems like everything with her walking was riding on it and maybe today we would finally be getting her little feet some support.  She's been doing great and I'll admit sometimes I want more than I should with her.  She was born with Spina Bifida, am I expecting a speedy miracle or what??  Well yeah, I guess so!  Up to this point I've just been waiting thinking okay she'll either walk, or they'll go ahead with braces and it'll help give her strength so she can just do it!  She's been doing so good, really starting to stand for longer periods of time but I see that weakness for her and I just want to help fix it.  Isn't that what we moms do??  I just feel like we're at the same spot we were 4 months ago, but to a degree I understand the point the docs were making today.  Last time we were in clinic, Dr. A said "Okay, the next time I see you she'll definitely be walking"  and I thought wow, that would be so cool.  I'm sure deep down inside it was a promise to me and somehow it felt like a broken promise today.

No...there are no guarantees when it comes to this stuff and Emma is trying with everything she has but what if I'm not doing enough as her mom to help her?  I have to be her voice, I have to make sure they know exactly what's going on and how she's developing.  When it comes to SB, we've lucked out so far and maybe realizing that is part of the battle for me.  She doesn't have a shunt and I always wonder if we made the right decision or will her ventriculomegaly be something that will affect her later.  She's cathed, it's a pain sometimes, but it's helping her kidneys and it's keeps me going.  Her Arnold Chiari is not symptomatic and she definitely has movement in her legs!  The poop issue....hopefully we got a better plan today with starting sorbitol so we'll see.  From the beginning I've taken all this in and tried to make it better, for her, and for all of us. I want to wake up tomorrow and not think about SB...pretend there's no worry about the tiniest little thing out of the ordinary......just another baby thing and grin and enjoy my one year old, running up to me with a rock in her mouth, so eager to show me all the yummy dirt!  If it were only that easy right?        

Well, what we did learn at clinic today was that Emma's little feet like to pull upward and out and that is making it hard for her to walk and maintain that control when she takes steps.  By bracing her feet now, which the muscles are still supple, we would be slowing down her crawling and it's not for sure that it would speed up the process any.  Both the ortho and our physical medicine doc feel like she could benefit from braces but the questions is when...so here we are at the old "wait and see" game again.  Which is mainly why I feel frustrated...but taking a cue from something I saw at Barnes and Nobles tonight......"Keep Calm and Carry On"...sounds like a plan!           

The absent blogger...

Well I don't generally get on here and type too much but I've decided that it's probably the most therapeutic thing I could do these days.  Life gets so hectic sometimes and it's all I can do to take a minute for myself to read, let alone blog.  Things with Emma have been going great, more wonderful than I ever could have imagined they would ever be.  She is such a sweet and funny little person that is so curious about her world and everyone in it.  She giggles all the time and talks in these huge sentences and of course, not a one of us can translate a single thing, but we smile and say "Yep, what you said!"  She just smiles with that adorable grin full of teeth now and it melts me.  How on earth does she have Spina Bifida??  Somedays I ask myself that over and over.  She is just like Aaron and Madison were as babies.  She's silly, she is so full of life, she gets into everything she can and she likes to tell me when I don't do things correctly and she gives the most wonderful hugs and kisses....she's such a perfectly normal baby!  Sometimes the whole SB experience, the scary parts at least, are passing memories to me and I like it that way.  Then there are days when I see something that triggers an emotion and it's just as fresh as it was the day we found out. 
Tonight, actually, I had what we have started calling an "I hate SB" moment.  I had given Emma a bowl of oatmeal because lately she just hasn't been eating good, too interested in what's on the counter and or what everyone else is doing, so I decided she could try to feed herself (or make a huge mess!) and maybe have some fun.  Of course the bowl was dumped and the oatmeal was smeared in a nice layer all over her tray and it was definitely bath time.  I stripped her down and cathed her (our usual before bath routine) and got her in the tub.  She was having so much fun splashing and playing and her sister was making her laugh too so she was having a blast.  She was in there maybe 5 mins and I noticed a little poop in the water.  Her bowels haven't been doing too great lately, very inconsistent even with juice.  Not really a huge deal but it meant it was time to get out and as I lifted her up she looked at me like she was so bummed because mommy was ending the fun!  I don't know why, but I just thought to myself, this is the parts I hate.  The little things that grab you and it's not even a major deal, something I would have never thought of with my first two.  Then I think, it's just poop......s%!t happens right??  Things could be SO much worse and we are so blessed with how things have turned out for her.  Some days the big "Is she walking" questions gets to me, other days I just smile and say "Nope, she's working on it".  I worry about her bowel management, I worry about her hydro, but other days I just enjoy being her mom.
 
Over the past few weeks, I have been watching Drew help Emma with her standing and I've never seen so much joy in his face.  I love watching the two of them!  She giggles when you try to get her to stand and in doing so, she will fall and laughs the entire way down.  It's so hilarious but at the same time we're trying to keep her serious so she can really try (what are we thinking right??).  I know for myself, when it comes to her walking, I've never had any grand expectations.  Everyone else we know is convinced she'll be cruising by next week but I just like to watch her and I know eventually she'll get it.  I thought I'd be so heartbroken when she didn't walk by one but now I just want to make sure I'm doing everything I can on my end to help her get there.  She's very confident when she cruises the furniture and even holds our fingers but the minute you let go, she'll fall.  She's also turning her feet out and lot and dragging them sometimes, things that we'll definitely be talking about at her next SB clinic on Jan 28.  But for now, just listening to giggles while she tries out her legs is enough for me, I love to see her little determined face. 

Sometimes I just have to keep my worries quiet and remember....she's doing great....she's not giving up!  As I'm sure Aaron would remind me of a quote from the penguins of Madagascar right now....."Just smile and wave boys....smile and wave!"       

Catching Up

It has been FOREVER since I've posted anything on our blog, almost a year actually. WOW what a difference a year makes! We welcomed our little Emma Grace into the world on November 21, 2008 and it has certainly been a wonderful and sometimes stressful journey but there isn't a thing that I would change. To look at her, you would never know there was anything different with her, actually from the moment she was born she seemed to push forward. She continues to amaze us everyday and now she's mobile so there seems to be no stopping her! She started crawling...forward I might add....on August 31 and it was so amazing to see her little face light up. She had been going backwards for a while now and getting frustrated because the toys would just get further and further out of reach. Now she takes off towards everything and is getting so much faster everyday!

She recently had surgery to correct her tongue tie, which took everyone a while to figure out was even there. She had been sloooowly gaining weight and it seemed to come up at every doctor's visit and no amount of extra formula seemed to help because when she did nurse she was really having to work at it. But now that they clipped it, she's been doing so much better with nursing and has really blossomed since then. I joke all the time that they wheeled back my baby into surgery and brought me a different little girl! In one week she gave up her paci, started talking, stopped liking baby food, got scared of the dark and being alone and learned how to crawl!! She seriously had an agenda!

She's doing so great in everything right now and I feel like the closer we get to her first birthday surprisingly I'm getting more nervous! I think the anticipation of will she walk or won't she is almost always present in my thoughts and I find myself thinking about it more and more. She had a PT evaluation and for now they don't recommend any PT....again the old "wait and see" if she wants to try and walk. She has hyperflexion in her ankles and minimal heel cord tightness but she seems to be developing within her age range which is great to hear. We go to clinic on Sept 24 and we have a lot of questions this time. We've heard braces mentioned but she was so little last time and I'm hoping to get a better idea of when that may be a possibility. When you stand her up she doesn't mind bearing the weight on her legs at all but she puts her little feet together and really doesn't budge them. But she's got the crawling down pat and is pulling up to her knees, which scares her mommy to death!! But she's definitely got some motivation and I love seeing that.

As far as her bladder and kidneys go, we're still cathing four times a day and she's still doing well tolerating us. Our biggest issue right now is getting her to lay still, she wants to flip over! So we've got a few toys and things she loves to hold while we cath. I know soon those won't work and we'll be on to something new but for now it's working. I think we've got her bowel management worked out pretty well too. She drinks plumsmart juice and pear juice and they both really help out. As long as she's drinking a fair amount a day she doesn't get constipated.

Over all, Emma is doing awesome!! We worry about things non-stop with her and that will proabaly never change. I think our biggest obstacle has been learning to enjoy the wonderful moments and not let the "what ifs" get in the way of that. She is such a happy little girl and our whole family is completely head over heels!

A little about our family

My name is Lori Smith and my hope is to share our family's experience with Spina Bifida and learning how to face all the challenges.

My husband Drew and I have two beautiful children, Aaron, 9 who is much older and wiser than his years and Madison, 6 who just loves to giggle and smile at everything. We love having two children, but for both of us, actually all of us, we wanted one more little person in our lives to make it feel complete. We talked about having a third child for quite a while and the ache never really went away for me. After one of my best friends had her third I just felt like maybe it was time to let god decide where our lives would go and just give it a try, so that's just what we did!


On Easter Sunday, March 23, 2008 I woke up early while everyone was sleeping and decided I would try a home pregnancy test since I was a little late. I was at the stage after you wake up where your eyes don't really focus but as I tried to read the test I saw a faint second line appearing and boy my eyes started working then! Just a month after we started trying, I was pregnant and I couldn't wait to share it with everyone. I rushed over to the bed and whispered into Drew's ear that he needed to wake up......his third baby needed him! So of course his eyes opened immediately and we couldn't wait to go wake up the kids. They heard us talking and were both out in the living room before we could go wake them. We let Aaron take a look at the test to see what he could make of it and he immediately knew what it was and starting jumping up and down. Madison just grinned and starting hugging me.....it was such an awesome morning that was only going to get better when we told my family. We were going to church for Easter morning and we got there right as the service was starting so all four of us had to sit next to my parents, knowing that we had to keep the news in until after church. We got my parents and grandparents together afterwards in the sanctuary and handed them their Easter cards but with one difference, there were three kids signatures instead of just two. Everyone was shocked at first but it took about 5 seconds for tears and hugs to start and everyone was so happy for us and we all couldn't stop talking about it.



Things seemed to be going well for the first few months, my due date was Dec. 2 and I had accepted that I would once again be getting my prenatal care from the Naval Hospital, who in the past didn't follow me very closely and hardly ever did ultrasounds, but we were determined to make it fun either way. Well, I am learning that you get what you ask for in life, even though it may not be how you imagined! I was sick for the majority of the first trimester and the Naval Hospital was seeing me every month because of high blood pressure so I was taking every test that they threw my way. They changed my due date a few days to Nov. 30 after the first ultrasound at 10 weeks, but things seemed to be going great. Aaron and Madison got out for the summer and Aaron was going to scout day camp and I received a call from the hospital about my AFP test. The nurse told me that it came back positive for open neural tube defect and they were sending me to Dr. Wright (who I knew already from my friend's pregnancy) and not to worry. So of course the first thing I do is research what my odds were and it seemed like things were in my favor, I took my prenatals about a month before I got pregnant and I was basically healthy with no family history.....so I got an appt for July 3 with the specialist and went in with my hubby and kids to see our little bit on ultrasound with all the support of my friends and family waiting to hear. I laid down on the table and we took a look at the baby and Aaron and Madison were just amazed at this tiny little person (who was 18 weeks along) that was just moving around in there. The ultrasound tech told us it was a girl and Aaron's first reaction was....."Ohhhhh it's little Emma Grace in there!!" We were all so excited and she was moving around in there like crazy. The doc came in and introduced himself, told us the odds involved with the AFP tests and started looking at our little girl.......and then he takes a deep breath.


I'll never ever forget that sound or his face for the rest of my life. He asked the nurse if she could take the kids out front to color and at that point Drew and I knew something major was going on. I just wanted to scream but the doc got really close to both of us and explained that most of the time they don't see anything.....but today......with our baby......they did see something. There, on that tiny little back was a small opening on her spine and I just couldn't make out at that point who he was talking to. It was like he was talking static to me about someone else. He explained that her brain showed the banana sign and again....I felt lost as to what he was talking about. Before I knew it, he was telling me that he normally offers an amnio, but for me he was telling me I needed it and 5 mins later I had a needle in my belly. The entire time I just wanted to get up and run and somehow make all of this go away. Drew was right there holding my hand and all we could do was look at eachother. They gave us the necessary info and we talked with a counselor briefly but they all knew we just needed time for it to sink in. I remember walking out to the car thinking I had stepped into someone else's world and I just wanted back in mine. I get in the car and look at my cell and there are a ton of missed calls from all my support people just wanting to know things were okay......how could we tell them we'd have to make the hardest decision of our lives in the next few days and things weren't okay?? I told a few people but it wasn't until I got my mom on the phone that it hit me and I couldn't make the tears stop. Our plan was to go to my parents house that was a 30 min drive away and somehow escape reality for a little bit. I can't even begin to tell you how hard the next 72 hours of our lives were but somehow my friends and family got us through it in one piece and we started a new week waiting for the lab to call with a tiny sliver of hope.


The amnio that they took was sent off and the first initial test was called a FISH, which is basically a quickie test to look at chromosomes and see if our little girl had anything else going on. We were told if it was something like Trisomy 13 or 18 she wouldn't make it very long after birth and we had until 20 weeks in the state of NC to terminate the pregnancy. While I was scared to death about having a baby born with those complications, I had this little girl starting to kick me inside and reminding me she was in there and both Drew and I knew that terminating would never be an option. We found out on Tuesday, July 8 that her chromosomes looked normal and now we just had to wait on the full amnio to make sure we were in the clear as far as chromosomes go. We took a little vacation to GA with a friend and enjoyed some much needed time together and knew that once we got home we would find out the full amnio test....which I'm happy to say looked great. We were dealing with an open neural tube defect (or Spina Bifida) from what they could see in the amnio results and somehow it just seemed like a small problem to deal with.


Everyone in our family has been so wonderful since we found out about Emma's Spina Bifida and I couldn't have asked for a better support team to help us through all of this. I have my days when I can't understand why my little girl has to deal with this but then I realize that she's in there growing everyday and she will get through this and we will love her just the same. She is truly a miracle and our little family is starting to feel complete......now we just can't wait to get her here!


After seeing her on ultrasound almost every month and visiting the docs at UNC Chapel Hill hospital we know that her lesion is very small on her back and is located very low on the spine(sacral region S1) which is a good thing. She has been growing well and is VERY active in there! She does have what is called Arnold Chiari malformation where her brain is shifted back and is causing some mild hydrocephalus but for now the docs feel like it's borderline. She will be born Nov. 21 by c-section and will have her closure surgery done right after birth and I have to say, I can't wait to see her! It will make all of this longing the see that beautiful face and the fear of the unknown just melt away and our family of 5 can start enjoying life, no matter what the challenges are!