1 Year Ago

I woke up around 4am as I had been every day for the last few weeks of my pregnancy. I was officially one day overdue and had no clue that we would be meeting our precious little girl that evening. I got up and went to sleep ont he couch until Greg got up for work, then I moved back to the bed so I could sprawl out. I quickly got annoyed though because something kept waking me up. I sluffed it off as gas pains and tried to go back to sleep. Around 9:30 I realised that I was waking up at 5 minute intervals.

By 10:30 I knew I was in labor. So I called Greg as calmly as possible and told him that he better clear up his afternoon!! Little did I know, I should have told him to come home immediately. By the time he got home at noon my contractions were 4 minutes apart, lasting for a minute and had gone on for an hour! It was time to go to the hospital. Greg called Maud the midwife to confirm that we should head down to the hospital and she gave us the go ahead to head down.

I didn't have everything I needed in my hospital bag so I was trying to get around the house and fill that up, all the while having contractions that were dropping me to the floor. It was awful, I was cursing at myself for not having it ready to go. I figured I was ok because I had a list sitting on top of all the things that still needed to be packed. Well try focusing on reading a list and finding items around the house while every few minutes it feels like someone is taking a knife to your insides and a watermelon wants to drop out of you. Next time my bag will be packed and ready to go!!

So we get to hospital after a 2 minute drive that felt like an hour and neither of us can remember what we were supposed to do. In that moment that we walked through the front doors I rememberd hearing something about checking in at emergency, or was it the main registration desk, or were we supposed to go straight to the ward?? ARGGHHH!!!! I can't remember and I can't think. SOMEONE GET THIS BABY OUT OF ME!!!

I couldn't fathom the thought of having to sit at the desk and check in so we went straight to the ward and they got us right into a delivery room. Greg had to go down to the registration desk and check me in, move the truck from the unloading zone and bring up my bags.

It's about 2:30 now and we are "settled in" and labor is moving ahead full-tilt. I was dehydrated, protein levels were rising in my urine, white counts were high but the midwife was determined to keep me from having to be attached to an iv. I didn't want to be attached to any wires or monitors on a constant basis. Laying down on my back was the most painful place to be so I wanted to avoid it at all costs!

I had decided later on in my pregnancy that I wanted to go med-free. I wasn't trying to be a hero but I knew that I don't react well to pain medications and thought that if I could avoid them I would feel better after she was born. I had also heard horror stories of epidurals slowing down labor and I did not want that to happen!

I will spare you the gruesome details, but after a quick and painful labor (insert shudder here), Madison Elizabeth Lawrence was born at 6:58pm on February 10th. The instant after she was born was the most amazing feeling! It wasn't like on TV when they announce it's a girl, so after a few minutes I finally asked someone what we had! "It's a girl!" someone finally proclaimed!

I didn't see the lesion on her back so I was blissfully unaware that there was anything wrong. At one point they turned her over and we all saw the opening on her back. It was flat and looked like her skin hadn't closed up all the way over her lower back, right abover her tailbone. At first I naively thought it was cosmetic and that it would either grow over or worst case scenario, she might need a skin graft to cover it up. I never dreamed that it would be Spina Bifida, those two words were not part of my vocabulary.

The pediatrician Dr. Addai, was called to the hospital and after having a look he started saying it might be spina bifida. We were noticing that she wasn't moving her legs properly like a baby should, there was definitely some weakness. Otherwise, she looked so perfect and she was trying to crawl off her little bed, it was hard to believe anything was wrong with her and that it was as serious as it was.

The next little while is a blur but I will try and remember what happened to the best I can remember. Madison was taken to the nursery while Dr. Addai looked her over back and decided what to do next. At one point he came back to the delivery room and started talking about how it looked like Spina Bifida and that she would need to be transported. I think he asked if we would prefer to go to Regina, Saskatoon or the Children's Hospital in Calgary. How did we know what the right answer was! After considering that we would likely need to drive while she was flown, we decided that Saskatoon would be the best option. Dr. Addai got in touch with the NICU, was connected with the pediatric neurosurgon, Dr. Vitali, and then wheels were in motion.

She would need to have surgery to close up her back within 48 hours, so the initial plan was that the Air Ambulance would come that night. What we didn't realise though was that while we had been in the hospital all day, there had been a storm going on outside, the highways were closed and the air strip was not in condition for any planes to land. We would stay the night in Swift Current and then fly to Saskatoon in the morning.

That night, my mom and dad came to bring us some food and stayed with us while we made arrangements for the next day. Once everything was set, we settled in and tried to get some sleep. Madison stayed in the room with us initially. She had a bandage on her back and the nurses had to come regularily to moisten the bandage with saline so that the opening didn't dry up. We didn't have luck nursing at first and she wouldn't settle at all so eventually the nurse came in and told us that we needed to get sleep so she was taking Madison. They fed her some formula and made her a little soother from a bottle nipple stuffed with cotton then sealed, and she settled right down and went to sleep.

Back in bed in the delivery room, I was busy searching Dr. Google finding out about Spina Bifida, which turned out to be a big mistake. I found information that was extremely unsettling, of course all worst case scenarios. Luckily we managed to get a little bit of sleep though as we were going to need it! The rollercoaster was just getting going.

February SB Clinic

February 1st, we loaded up bright and early to head to Saskatoon for our first SB clinic in 5 months! We were supposed to go in December, but several of the doctors had to cancel, and then the same thing happened in January. So February it was. I've been really anxious about this clinic mostly because Madison was supposed to try out a standing frame, and also because I was really excited for all of Madison's doctors to see how awesome she has been doing!

Once we arrived in Saskatoon our first stop was RUH for X-rays and bloodwork. Every time I go there, all I think of is how excited I will be when the Children's Hospital is built. And that cannot come soon enough. We know that we are going to have to continue to visit this hospital, but I will not be sad when we can finally end our relationship with RUH. Luckily, though there were no line-ups in X-ray or the lab so we didn't have to spend a whole lot of time there. Once we were done with Maddi's tests, we went to the NICU to visit Doreen. I'm not sure of her official title but she is a nurse who looks after the families of the babies in the NICU. She was so nice to us, brought us information on Spina Bifida and really helped us to get through that rough time. We were very thankful that we were able to see her that day as she informed us that she would be retiring in a month!

We left RUH and headed towards the Kinsmen Children's Centre. Once there we learned that Maddi's physiotherapist Kathy was away sick. No chance to try out a standing frame. Here's a rundown of the doctor's and therapists reports:

The clinic nurse - Madison weighed in at a whopping 28lbs 6oz. 99th percentile...yikes. Her length was 30.5 inches which is 97th percentile. She is a big girl. I had kind of hoped she might not have been that high on the charts as we have cut back on her formula intake and we don't really feed her any bad food. She mostly eats meats, fruits and vegetables with a tiny bit of carbs in her diet. Lynn, the nurse, told us that this is common and that once we get her in the standing frame, and then eventually walking, she will shed some of that weight. Here's hoping she's right!

Occupational Therapy (with a quick visit from a different physiotherapist) - Madison is right on track and doing everything she should be in terms of how she is playing. She's fitting shapes into holes, exploring cause and effects, loves putting things in and taking things out of containers, and is extremely curious about the world around here. (Proud Mom's note - I swear she is going to be an engineer because she is always looking at and analyzing how things work!)

Urologist - I was a little scared for this one as I had catheterized her a few times before we went and the results were higher than they should be. But, thankfully Dr. Weckworth was happy with everything and said we don't need to start cathing her yet. Her renal ultrasound was fine and everything looked good. He did explain that likely when we get to the point where we are looking to get her out of diapers is when we will need to start catheterizing her. So good news for now, but we still need to watch her for urinary tract infections, and any signs that she isn't peeing as she should.

Neurosurgeon - I have been so relieved that Maddi hasn't needed a shunt that I was actually excited to see Dr. Vitale and show off how she has beat the odds. Something like 90% of people with Spina Bifida have shunts! This is like winning the lottery. Although, I was starting to feel less worried about hydrocephalus because I had learned about the procedure called the ETV. This is where they create a new pathway for fluid to be released from the ventricles in the brain when the original pathway has been blocked. From what I read, this procedure is not effective in infants, but as kids hit 1 year and beyond, it becomes a more viable option. It is succesful 75% of the time, allowing kids to avoid having a shunt. The issues was that it seemed to be a relatively new thing that was not done by very many doctors. I had thought that if it came to this we would be packing up and heading to Philadelphia as there is a neurosurgon there that does it. Well, imagine my surprise when I learn from Madison's neurosurgon that he does the ETV!!! It was such a relief to know that if it came to this, we could get it done locally. Although, he did tell us that only 10-20% of patients are candidates for it. Chances are she won't need it though because he gave her a 98% chance of never needing developing hydrocephalus now that she has made it this long without it!!

Pediatrician - This was the first time we saw a pediatrician at the clinic and basically the whole appointment was us recounting our story and answering the same questions for the millionth time.

Dr. Dzus, Madison's Orthopedic Surgeon, was not able to make it but she was going to look at Maddi's hip x-ray and determine the severity of her hip displaysia. Let's all hope it looks good because otherwise she won't be ready to use the standing frame. She did get measured for it though as it will be built at the Abilities Centre in Saskatoon.

That basically sums up out experience there. It was a long day for all of us. Madison wouldn't nap at all but I was able to catch a 10 minute power nap while we were waiting at the clinic:)

When we were on our way home I mentioned to Greg that it seems like a waste to drive all that way and not learn anything new and just have everyone say she's fine. He brought me back to reality when he replied that it was better than having to drive up and hear bad news. Which was so true. We are so lucky that all has been well and there are currently no concerns. I have read so many stories about babies with Spina Bifida and know that we could be in a much worse situation than we are. Driving to Saskatoon for that reassurance isn't such a big deal.

All in all, a good day full of good reports on Madison's progress. We already know she's perfect but it's great when we hear all her doctors tell us that too!

The Girl Loves an Audience!

Happy New Year everyone! This year has had a busy kick-off so far. Allow me to bring you up to speed...

In preparation for going back to work we took Madison for some visits to the daycare she is attending. For the first one I stayed along with her, but for the second I left her with her one-on-one caregiver Jen and went to hang out up in the daycare staff room. For an hour and a half I worked on all the paperwork that one must complete when your child is attending a provincially licensed daycare (and I didn't get it all finished either!). She got along wonderfully without me by her side, no issues at all! We did one last test when I dropped her off for a full morning, and as we expected, she did fine then too!

Last week I started back to work so Maddi has been to daycare for three full days which all went well! She hasn't quite got used to a napping routine there yet but I am sure that will happen soon. She seems to love playing with all the kids and she doesn't even notice when I leaver her! On Tuesday this week Maddi's PT Michelle will be making a visit to the daycare to work with her one-on-one caregiver Jen and teach her about the therapy Maddi needs on a daily basis, and how to help her play and move so that she continues to develop as she should and doesn't compensate for her deficiencies in mobility in ways that will be harming.

Aside from daycare, mom and I took Madison to Saskatoon last Monday to see an Opthamologist. I had noticed since she was born that she seemed to have one eye that turned in. Her pediatrician noticed it as well and felt that it should be looked at. Thankfully though, in the time that passed since he made the referral several months ago, the problem seemed to have corrected itself. The Opthamologist did not notice that anything was wrong so that was a relief. The only downside to the day was that for two and a half hours we were "forgotten" in the waiting room. Maddi was a trooper though and was able to make the time pass by making everyone smile. At one point after we had been there almost two hours already, she was looking around at the people sitting by us and as soon as one would look at her she'd smile then look at the next person until they looked at her and so on. Then she started to tell everyone stories that must have been pretty funny because she would laugh and laugh, and then proceed to smile at everyone again. It was pretty entertaining!

While in Saskatoon we also made a stop at the Sk Abilities Council to get some adjustments to Maddi's AFOs (Ankle foot orthotics), and also at the KCC (Kinsmen Children's Centre). Since it wasn't a regular clinic day at KCC, we just had a little chat with the nurse coordinator to discuss a few questions I had, and then the PT Maddi sees up there had a look at her AFOs since having the adjustments. We also discussed standing frames and it was confirmed that Maddi would have a hip x-ray before her next Spina Bifida clinic on Feb 1 and if her Orthopedic Specialist is happy with how her hips look, she will order the standing frame so that we can get started in it right away!

This is truly exciting news. It seems like Maddi is hitting all of the developmental milestones, except being able to bear weight on her legs. This will be a huge step and is really the only way we can get her legs strengthened and ready to stand on her own. I am sooo very excited for her to experience the new perspective her stander will give her. She will finally be able to see eye-to-eye with her peers who for the most part have been standing for months. I am also relieved that she will start making progress again in terms of her development. I feel like things have been at a stand still for the past few months. She has really mastered the army crawl and rolling around to get to where she needs to go. I am ready to see more though and she is ready for a new challenge!

That's kind of where we are at now. Within the next 30 days Maddi will have another renal ultrasound, bloodwork, a hip x-ray, a trip to the Spina Bifida Clinic where she will see 8 different medical professionals from various disciplines, two visits at the daycare from her local PT Michelle, one year check ups with her pediatrician and her family doctor, and also her one year shots. Wow! We are going to be busy. With me being back to work I had to reassure my boss that it won't always be quite this crazy. Everything just seemed to land all at once!

I leave you now with some photos we took at Christmas:

Maddi with her cousin Preston on Christmas Eve. I tried so hard to get a good picture. I need to work on my camera skills! Luckily I received a new lens for Christmas so that will help!

Madison on Christmas morning:

I can't help but laugh when I look at this picture. For some reason she made this face non-stop for a couple of weeks around Christmas time!

Update

It's been a while since I've really had anything to post! We have been busy and my maternity leave is quickly coming to an end. So here's the latest update on Maddi:

-She continues to be a little rock star! She is rolling all over the place and getting stronger every day. She can also pull herself around the floor with her little army crawl!

-Maddi is still not able to bear any weight on her legs, but we received word that she will get a standing frame the next time we go to her Spinal Cord Clinic in Saskatoon. This will be the start of strengthening her legs so that she can eventually stand on her own! We had hoped to start this process in early December but she will need to be seen by her Orthopedic surgeon first so that she can verfiy that her hips are ready for this. Maddi has something called hip dysplasia which means that her hips will dislocate. It wasn't extreme enough that they wanted to do any bracing for this, but it will still be a bit of an issue moving forward. So for now we wait, and look forward to seeing Maddi in her stander in February!

-I go back to work January 11th and Madison will go to the Natural Wonder Early Learning Centre. She is such a social little baby, I think this will be a great place for her. Luckily there is funding that will pay for a one-on-one teacher for Maddi. We are very excited that a young woman who has worked at the centre for 8 years has asked to work with Maddi. She has 3 kids of her own and is a very nice, caring woman. Maddi will be in good hands! Luckily Maddi's physiotherapist will see Maddi right at the centre. She will also work with Maddi's teacher to train her on what type of excersizes and therapy she can do for Maddi on a daily basis. The one drawback to the daycare centre is that it's not wheelchair accessible, not in the slightest. They will be building a new centre though, opening around 50 new spots in a facility attached to the new elementary schools being built by the hospital. Thankfully it will be fully wheelchair accessible, as will the school! Maddi will go to that new school anyways so this will work out well!

-We are going to see an Opthamologist in Saskatoon in January. Madison seems to have a touch of strabismus so we are taking her to get it checked out. This is common with kiddos with SB so it's not a huge surprise. She may need glasses or some patching to help strengthen her eye muscles, or it may be nothing. We are glad to be getting it checked out though!

What about mom and dad:

-Greg and I were in Vegas last week and had an awesome holiday! We travelled there with Greg's sister Debbie and her husband Dave and together we took in some of the sights and sounds of Vegas. Oh, and we might have done a bit of shopping. Luckily Westjet didn't charge me for a 76lb suitcase. I'm not even sure how it's possible to fill a suitcase to be that heavy. Especially considering it was stuffed on the way down and weighed around 47lbs!!

I think that just about covers it for now! Sorry it's not a very exciting update but around here that could be a good thing as it means that Maddi is doing well and kicking Spina Bifida's butt!

Merry Christmas to all!

Love Meaghan, Greg and Madison

Take That Spina Bifida!

In the Spina Bifida community, "Take That Spina Bifida" is a term used when our kiddos amaze us and do things that we were told they might not do. Well I feel like we are having a "Take that Spina Bifida" kind of week!

This week Maddi started pushing herself up to a sitting position from laying down! Now for the typical baby this is just another milestone to hit so it might not seem like a big deal. As a parent of a child with SB, this is a huge deal! After consulting "Dr. Google" soon after Maddi was born, and also after listening to what the doctors told us, we weren't sure that Maddi would even be able to sit up on her own, or else she would likely be very delayed in doing this, let alone push herself up to a sitting position. Well not our little Maddi! She sits up strong, and now can push herself up to sitting from laying down. It's a wonderful thing to watch happening! She also started clapping this week! Her mom and dad are so proud. Although, if you want her to clap for you don't ask for a round of applause, ask her for a round of Patty Cake and she will know exactly what to do:)

Also this week, Maddi needed to have a Urodynamic Study done. We were in Saskatoon once again, this time in unfamiliar territory at City Hospital. I am not a doctor (although I am starting to feel like one some days), but what the urodynamic study consisted of was emptying Maddi's bladder with a catheter, filling it up with some dye, all while taking x-rays to watch the shape of the bladder and check for reflux to the kidneys. They also measure the pressure on the bladder.

Spina Bifida means that part of the spinal cord did not fully develop and it's the lower part of the spinal cord that controls bladder and bowel function. For this reason, most people with Spina Bifida have issues with with their bowels and bladder. Most will need to catheterize in order to completely empty their bladder. The inability to completely empty the bladder, and also the introduction of a catheter into the bladder, creates a susceptibility to infection and UTI's are common among those with SB. Also, reflux of urine to the kidneys can be common for people with SB which can lead to kidney infections and in extreme cases, kidney failure.

Because of all these issue with bowels and bladders, the Urodynamic study is done. In yet another "Take That Spina Bifida" moment, Maddi rocked the test! The urologist was very happy with how it went. He told us that the shape of her bladder is excellent, nice and round, the pressure on her bladder stayed low even when it was full, there was no reflux to the kidneys and they saw that she was actually trying to empty the bladder on her own when it was full!!! He finished by telling us that he saw no need to catheterize, for now anyways. We are ecstatic about these results, it couldn't have gone much better I don't think!

All in all we are quite amazed by our little girl. She can't crawl yet but don't let that fool you, she can get around a room in the blink of an eye. If I leave her for a minute and come back I some days wonder if she didn't get up and run she moves so far so quickly! Today I had put the TV on a music channel, left the room to go to the washroom, come back and she has moved all the way across the room to the remote and has turned the channel to Sesame Street. She probably used the guide and everything to find it. She's that smart. Oh and she likes to text on the blackberry too. Don't be surprised if someday you get a random text or phone call from my phone. It might be her:

Here's another one just because it's cute:

I better remember to take this down before she's old enough to find that I posted it on the Internet:)

So this week we are saying "Take That Spina Bifida", and I am sure that given Maddi's determination, stubbornness and her drive, I am sure we will be saying that a whole lot more in the future!

Spina Bifida Awareness Month (USA)

In honor of Spina Bifida awareness month in the States, I thought I would share some information about SB for you all. Thanks to Nate's mom Colleen for putting this together for everyone to share!

Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States and Canada.

What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.

What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70% by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.

What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.

What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.

If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.

New AFOs!

On September 20th Maddi, mom and I packed up and travelled to Saskatoon. Maddi had an appointment to get brand new AFOs made for her feet. For anyone curious, AFO stands for Ankle Foot Orthotic. They are little braces that hold her feet in a neutral position. Due to some muscle tightness, her little feet want to turn in so this helps keep her feet where they should be! From what I understand, as she grows she will likely always need a pair of AFOs to help her walk. Her little feet are paralyzed from the ankle down, although she has been having some movement in her right foot which is very exciting. We can't wait until she is older and can tell us whether she has any feeling in her feet!

For now, she wears her AFOs for a few hours each day. We take them off when she sleeps and for some tummy time but otherwise we try and keep them on her as much as possible.

Maddi has always been pretty adaptable, no matter what situation you put her in, or where you take her, she is happy! So it really should have come as no surprise that getting casted was no big deal. She sat so still for her Orthotist Grant, and smiled her super sweet smile:)