Wednesday, 12 September 2018

Surprise! He's Starting to Thrive!

One of our twins (known as Twin A) Walker was born at 4 pounds 1 ounce which was 1 pound 6 ounces smaller than his brother Conrad. The weight difference is now 7+ pounds. Due to his congenital heart disease we spent the first portion of 9 weeks in the NICU to deal with his fast breathing due to Tetralogy of Fallot. While in the hospital he had a moment where all of the monitors went off, alarms ringing and dinging and all I could do is walk away.
Our visit to Sick Kids Hospital this week

Walker blood oxygen levels and heart rate quickly decelerated (known in the hospital as "de-sating") and he lost all colour in his face - he was grey. He had been drinking a bottle and had a little bit of a choking session and quickly de-sat. After everything we had gone through, I was petrified and had to turn and walk away while the nurses tended to him.
Juggling feeding twins
Luckily, everything was okay and the nurses got his levels back up again but little did we know it was the start of something that would effect Walker for a long time. It was the start of reflux. 
Teeny tiny Walker at one week old, that big is the size of my spread hand!
Babies spit up. It's normal. But when it happens all of the time and your baby doesn't keep any food in their tummy, it becomes abnormal. Walker couldn't keep anything he was drinking in his stomach and would bring it up, out of his mouth and his nose. His face would go very red and he would choke. At first it happened rarely but it quickly got worse to the point where he wasn't gaining any weight.
One of our doctor visits and weigh ins - ready to go!
The doctor advised us we had to start feeding Walker every hour! Taking care of twins was already feeling like I was feeding them every hour. But this is what we had to do for our little fella. He was on heart related medications to eliminate some of the water that was accumulating around his heart and making it harder for him to breathe - this allowed him to breathe a bit slower. The fast breathing got in the way of drinking milk. We had to perfectly position the bottle and keep a close eye on him while feeding.
His (our) favourite spot - sitting up in the Mamaroo
A few months went by and we ended up feeling so helpless that the decision was made to insert a nasal gastric feeding tube. We would feed Walker through the tube which made feeds much easier but still didn't keep the milk down! We did our best to keep him upright and he spent a lot of time in the Mamaroo chair. He was put on 3 different reflux medications to keep the milk down and reduce the acid and pain. 


September 2018 with twin broth Conrad (right), identical but not quite the same
We eventually got referred to Toronto Sick Children's Hospital ("Sick Kids") Failure to Thrive clinic. The doctors there monitored his weight, followed his development and tracked his feeding and eventually his food intake. We met with dietitians and had to fortify his milk to make it higher in calories as Walker wasn't growing - he was about an inch below the chart.

Let's fast forward to this week. We went to Sick Kids on Monday and hadn't been there since February. And drum roll....

Over the past six months Walker has been eating much better and independently. For having an aversion to food he eats better than his twin Conrad. We are happy to announce Walker is finally on the growth chart at 2 years old at a whopping 2nd percentile and 21 pounds 15 ounces! This is a very big deal to us as we had previously been monitoring his weight with WEEKLY weigh ins, endless trips to the pediatric unit to reinsert the feeding tube and a lot of baby puke!


Baby puke before it got real bad - the start of reflux turned to GERD
And the best part...

We don't have an appointment to go back to the Failure to Thrive Clinic at Sick Kids! 

I'm so proud of my small but very mighty Walker. He has shown so much grace through all that he has gone through and still has a smile on his face. His health issues have definitely made him a STRONGER person. He is my fearless boy who will go down the slide first and tackle his 8 pound bigger brother and stand up for what he believes in! We've still got hurdles but we surpassed a big one and we will celebrate. 

Woohoo for Walker!


Today our happy 21 pound 15 ounce boy!


4 comments:

  1. Yay Walker! Every post I read of yours makes me believe that you are a true angel sent to Earth! The way that you deal with all these obstacles amazes me. You are an inspiring mama and your kids are Incredible. Walker gets his strength from you, that's for sure! Xoxo

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    Replies
    1. Thank you so much for the kind words! It brought a tear to my eye. We love lemonade at our house ;) lots of opportunities to make it!!

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  2. This is amazing!!! So very happy Walker is thriving!!! Prayers for continued health!! Xo

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