Laura's Story\

Laura’s Story – Part 36 – How far we’ve come

Today is November 15th, 2017. It has now been more than a year since Laura’s last cardiac arrest. On November 14th, 2016 A.J and I witnessed Laura’s body go limp has her heart failed her. She got a few extra cuddles yesterday but there were no nerves – she is doing so well now.

After all that Laura has been through, it would be expected that she would have significant neural deficits and delays – she is showing absolutely no signs of either. Laura has come so far in her development since coming home last February – here is a breakdown of how Laura got to where she is now.


Feeding


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For Laura’s first 5.5 months of life, she was fed breast milk exclusively through an ng tube or given IV nutrition (TPN) when she wasn’t well enough to tolerate actual food. For a month she was fed a formula called Lipistart when she was battling Chylothorax and it smelled disguisting – thankfully she didn’t need it for too long.

On February 15th, 2016, we got the go ahead to try breastfeeding and/or bottle feeding. We tried both – Laura was completely confused by breastfeeding – to be fair, she had never (well…since she was 1 day old) had a boob shoved in her face before and she wasn’t sure why it was happening now. The bottle was slightly more successful – she took about 10 mls in 30 minutes – less than a Tbs.

Fast forward to February 24th, 2016 and Laura began taking her breastmilk with a bowl, a spoon and her soother. It was tiring and it was a pain, but she was drinking. On March 11th, 2016, we pulled Laura’s NG tube and we never looked back. She was now drinking all of her milk by mouth – even if it was with a bowl and spoon…

Over the course of the next few months Laura began eating LOADS of baby cereal and was starting to enjoy purées as well – this was a big accomplishment for us! We also tried every bottle and sippy cup known to man with no success.

On May 18th, 2016, Laura took 25 mls from a straw! This didn’t happen magically – I had read a great article written by an Occupational Therapist which gave step-by-step directions for teaching a baby to take a straw – Laura was a bit younger than what she suggested for starting on a straw but we were desperate. By May 22nd, 2016, Laura was taking 140 mls by straw throughout the day.

It wasn’t until we headed to Edmonton for Laura’s biopsy in late June that she really began to get the hang of it, though. After her biopsy, Laura took 240 mls from her bottle! On the way home she took 500 mls from her bottle and on July 15th, 2016 we finally said goodbye to the bowl and spoon!

Once we said goodbye to the bowl and spoon, Laura’s fluid intake really picked up – she enjoyed being in control of how much she took in and for the first time, we didn’t have to force Laura’s fluids into her.

Then came the next big hurdle…solid food. Laura was a piggy with her purées. She loved them so very much but she was completely unwilling to take food with any texture to it at all. We would give her food at dinner but she didn’t take it, she would just put it in her mouth, swish it around a bit, and then spit it out. We knew that Laura was falling behind in her eating so we scheduled an appointment with a feeding therapist.

At our appointment with the feeding therapist, we mentioned that we had recently discovered some left-sided weakness in Laura – likely caused by a minor brain bleed at some point during her hospitalization. She noticed that Laura’s tongue liked to hang to the right, confirming that her left-sided weakness could be to blame. Laura’s tongue didn’t work well on the left so when food got to that side, she would spit it out because she didn’t know how to swallow it. We were given some exercises to do with her and some ideas of different foods to try with her.

These exercises and tips did help, but Laura was still really picky with what she would eat – until we went to visit our friends in August. They have a boy who is 8 months older than Laura and after a few days there, Laura decided the cool thing to do was to eat table food.

Laura now eats incredibly well. She loves meat and fruit and hates vegetables with a passion. I still feed her purées twice a day to get her veggies into her (mixed with fruit of course!) but otherwise, she just eats her meals at the table and has whatever we’re having. Her absolute favourite meal is chicken and blueberries!

We have now gotten to a place in her feeding that we didn’t think possible even 6 months ago. How far she has come!


Development – Fine motor


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In the hospital, there wasn’t much opportunity for fine motor development. Occupational therapists would come by every once in a while but there was very little that Laura could do. She was unable to sit up and she often had lines in her arms which required her wrists to be bound to splints to keep them from moving. The most she was able to do was to hold objects such as syringes and baby rings.

After transplant, Laura began batting at toys and LOVED coffee cups, which would gladly play with.

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Once we arrived home, Laura was batting at toys and could pick up large toys but was unable to pick up small toys or transfer toys from one hand to the other – this was at 6 months old.

By 7 months, Laura was passing toys back and forth and was able to pick up smaller objects. She had mastered the process of pushing a ball as well.

By 8 months, Laura could hit her blocks against each other. She also learned how to turn individual pages in a book.

By 9 months Laura finally developed the ability to pick up a 1″x1″ block.

By 10 months Laura figured out the pincer grasp (being able to pick up small items with the first finger and thumb). She also figured out how to take things out of a bucket/container and how to throw a ball.

By 11 months, the occupational therapist discharged Laura as she was now caught up with her fine motor development.

Laura can now hold a crayon and attempt to make a mark on paper, point at things, push buttons with one finger and pick up slimy, slippery food and get it into her mouth. She can also put her toys away into a bin, throw anything and everything, stack blocks, and has begun to figure out how to take things apart.


Development – Gross motor


Laura’s gross motor development was what worried us the most. After so many ischemic events, we wouldn’t know the extent of the damage to her brain until she began reaching milestones like sitting, standing and walking – none of which she was capable of doing in the hospital.

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The first time that Laura tried sitting up was December 14th, 2016 – she was over 3 months old. This was the first time she had ever felt the weight come off her back or sides. We sat her up for 5 minutes, 3 times a day as tolerated but there were many days when it wasn’t possible due to illness, bad withdrawal or procedures.

By the time we left the hospital, Laura was able to hold her head up provided she wasn’t jostled around too much. By late February, she could hold her head up even if we bent down with her or flew her through the air.

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February 18th, 2017 was Laura’s first time EVER being on her tummy – she did not enjoy it at all. The goal was to get her doing tummy time for 5 minutes, 3 times a day but the minimum was 1 minute, 3 times daily. We were lucky to get the minimum – one minute seems like an eternity when your baby who is battling hypertension is freaking out – she would turn a pretty ugly shade of red when she was really mad.

At 6 months old, Laura learned to jump in her jolly jumper and put weight on her legs.

At 7 months old, Laura learned to roll from her back to her tummy and learned how to reach for toys and play with them on her tummy. She also learned how to stand while holding onto our hands or furniture!

At 8 months old, Laura was able to sit unassisted.

At 9 months, she learned how to do the miliary crawl and pull herself up to standing with our hands or something she could get a good grip on such as a bar or her walker.

By 10 months, Laura could sit up on her own from lying down, roll both directions, and stand by herself for a few seconds.

By 11 months, Laura could walk along anything she could get her hands on – furniture, walls, chairs. She also learned how to feed herself at 11 months old.

By 12 months, Laura could walk holding onto even one finger, crawl all over the place, sit on her knees, stand from her bum, tummy, and knees, sit from any position and jump in her bed.

Laura has been discharged from physical therapy as she is completely caught up. She is still not letting go of her hands but she walks and runs while holding onto our hands. She can stand on her own for a good long time and has all the skills she needs to walk – she’s just nervous.


Development – speech and communication


This is the one area that we were never worried about. Laura was always very expressive and alert – even in the hospital. Laura learned to smile at 1 month old and laugh at 2 months (we think…she was intubated for quite a while!). She watched everything that happened around her and she had people she loved and people she hated – and she would let them know which they were. Laura loved stories and songs and would light right up if we began reading her one of her favourites (the Very Cranky Bear has ALWAYS been her favourite but for a while in the beginning she also really loved Green Eggs and Ham).

Laura cooed often in the hospital and smile whenever she was pleased – which was about 98% of the time.

When we brought Laura home, she was very good at communicating what she was feeling and she was always very alert – it was clear that she was taking everything in.

By 10 months old, Laura was babbling non-stop and she learned how to say Dada! We were both surprised and very impressed that her first word came at such a young age considering her deficits in other areas.

By 11 months old, Laura could wave hello and goodbye and blow kisses (and she was still chatting up a storm).

By 12 months, Laura could click her tongue, buzz, blow kisses with the sound effects, and say Dada, milk and sometimes puppy.

By 13 months, Laura added Mama and baby to her vocabulary.

At 14 months old, Laura asks for things by extending her hand, shares EVERYTHING, blows kisses, waves hello and goodbye without being asked, claps her hands when she’s happy, dances when she’s happy, can make animal sounds for cows, pigs, dogs and sheep and she says dada, mama, baby, duckie, and sometimes milk (if she’s desperate).


 

Laura has come so far in such a short amount of time. Missing out on the first 5.5 months of life hasn’t held her back in any part of her development and she is the most wonderful, happy baby I have ever known. She is weird and hilarious and she makes me laugh all the time. She sleeps exceptionally well (about 12 hours at night and 4 hours during the day), eats well and is very social. She just graduated from swimming lessons last week and we look forward to doing many more ‘normal’ things! It is amazing that we can look back on the past year and be so very thankful for all that we endured because it gave us this little girl that we have living with us today!

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