Tuesday 14 March 2017

You Won't Believe It! We Have Happy News!

You've probably gathered by now that our new twin life has been challenging having a few other issues sprinkled into the craziness of having two babies and a toddler. We had 3 children under the age of 2 for several months. I started my blog a few years ago, as a coping method after the death of my daughter Stella. Once our rainbow baby Hudson joined our lives, my intent was to share the little funny and cute moments and life stories he brings to our life, while we live on with our grief. Life has gone in many directions and my blog has gone along with it.
Walker is surprisingly a happy baby!

The health issues and experiences we all go through as parents have become a main stay topic in Little Cotton Socks, as of late. The past 8 months with our twins has been very worrisome as Walker has a few additional health concerns we never anticipated, but the sweet "bless their cotton socks" moments, that bring light to the dark days continue between it all.

Yesterday's events deserve its own blog entry. It's that exciting. I am building this up and if you are a first time reader, it won't mean much to you but to those moms who go through what I do, this is huge.

I haven't been able to finalize my twin pregnancy story because something called GERD (gastroesophageal reflux disease) entered our life when Walker was 7 weeks old. It started as reflux and didn't become GERD until a few months later, when his symptoms worsened and he began to lose weight. We've been dealing with the ugliness of GERD for a while now and never saw or thought we would see the light of day, any time soon.

Our taping techniques have changes over the months and have been complimented by many doctors!
Walker has been suffering, we all have been suffering, with the ill effects of this condition that leaves your baby in pain, extreme discomfort, loss in weight, on several medications, coughing, on fortified milk, constant oral aversions leading to refusing to eat and a whole lot of regurgitation! It happens at any time, all the time and it doesn't stop just because you are out and about when you thought the coast was clear. It becomes part of your normal day. 

When a stranger stops you to let you know your baby is regurgitating and your typical predetermined response is, "Oh yes, this is what he does!". Keep reading, as you've also been there and this blog is for you.

This is where you can usually find Walker
GERD has caused Walker to need a nasogastric feeding tube, which is a tube that goes into his nose and down to his stomach, to ensure he gets the volume of fluid intake he needs to grow and thrive - that being the hardest part of this whole thing.

We have donor breastmilk to keep up with the milk requirements for when he constantly regurgitates and is re-fed and it had come to a point where the nasal feeding tube wasn't cutting it anymore. It was restricting his development and adding to the discomfort and aversions relating to the tube being down his throat and essentially keeping the esophagus sphincter open, the tape to hold the tube in place and the removal and replacement of said tape. When his tape is loose, I am not able to replace it on my own so I either patch it up with more tape or he is swaddled to keep him from pulling it out until a nurse visit or Daddy gets home. We don't like to swaddle him but we also want to stay away from additional hospital visits, as he already pulled the tube out a dozen times, over a short period of time.

Do you see what I see? Walker pulled out his tube - usually by the nose or if the tape is wet it can slide out by the ear
It came to the point where we were finally referred to a special clinic at the Children's Hospital that deals with these special children who are failing to thrive. A gtube (gastrostomy tube, which is a feeding tube directly inserted into the stomach from outside of the stomach) was something we decided was necessary and we actually were excited about; of all things. The gtube is inserted by surgery but it's a last resort. It got to that point.

Walker's last hospital visit for a gastro virus - it was a game changer!
Walker ended up becoming dehydrated and hospitalized due to a gastro virus a few weeks ago and you won't believe it. Since then, he has done a 360 degree turnaround.

Our baby who once so easily regurgitated and would lose his entire feed seems to be keeping it in his stomach! A gtube is currently off the table.

He is eight and a half months old, seven months corrected and something has clicked. Perhaps it was the rest he received while hospitalized, the energy built up from the fluids, maybe his throat healed from the lack of acid regurgitation or maybe his aversions were "reset"? We don't know but will take it. I didn't expect him to feel better when other babies normally do due to his small size. I figured it would have taken him even longer until he was the typical size of a typical 8 or 9 month old. Walker is currently approximately the size of a 3 month old.

This photo was taken by our OT after a full bottle feed and Walker drifted off - happy moment for us both
We suddenly have a happier baby who takes approximately 70 percent of his feeds orally by bottle with the remaining milk fed through his NG tube. He now seems to be able to slowly tolerate a little bit of solid food and can spend more time away from the upright position. We hope that his development will take off as his weight increases. 

The pediatricians have always hoped for 20 grams a day weight gain or even better, normal baby weight gain being 30 grams a day. Walker started at 20 grams a day and slowly declined to 15 grams and dipped down to 10 grams on average with some weeks losing weight. He was at his worst a few weeks ago while sick with a gastro virus losing over 100 grams in a few days.

The big weigh in happened yesterday and we are so happy that Walker not only gained weight, he gained 30 grams a day on average over the past 10 days! We see the light!

Walker at his last weigh in pediatric appointment - we were both happy with the results!

The doctor hopes he will continue to gain and we can remove his tube in about a month, once he takes 100% of his feeds orally and continues to gain weight. Hopefully then we can start to wean him from his medications too.

For those parents, I know there are many of you out there, experiencing reflux or even worse GERD, I know how hopeless you feel. Constantly watching your baby in pain and regurgitate his milk through his nose and eventually emptying his stomach and regurgitating nothing in pain. Arching her back during feeds or swatting the bottle away. Having a list of medication you constantly administer through the night when you wake your baby every 2 or 3 hours to feed in hopes of regaining weight. I know how tired your baby is from never sleeping properly or how a sore develops on his head from constant contact on a baby chair.

I've gone through this unknowingly with you and also felt like it would never get better.

One of our many doctor appointment photos - this one was for an RSV shot
I now know it does and will.

Gastroesophogeal reflux disease causes a vicious circle of pain but I now realize once your baby reaches the point where there is a bit of a relief the vicious circle becomes a positive one. Walker has now become a hungry baby who cries to be fed. He has never been hungry or woke to be fed before. He doesn't instantly cough when he sees the bottle or gag when the nipple is brought closer to his lips. He is regurgitating less and not choking at the thought of feeding. 

Walker is generally a happy baby despite the GERD
It has been life changing as we went from thinking we would have to escalate his care with the possibility of swallow tests,a gtube and surgery. We aren't fully out of the woods yet and I hope I don't jinx it but I wanted to share our positive story, as I never thought it could be this way. Keep running on your reflux marathon with your baby and try to make each feed a positive one as those slight changes might help get you on the right path. Walker has a lot of weight to gain to be on a better growth curve but we will celebrate the changes, the gains and being on the growth chart, even if its at the 0.1 percentile!

Brothers playing together now that Walker is feeling better, he can interact more
Side Note - those parents who are starting their reflux journey, for your information Walker is maxed out on dosages of lansaprozole (prevacid) x2 daily, ranitidine x3 daily (zantac) and domperidome x3 daily and has been on an ng tube for 3 months since 5.5 months old. All meds are given 1/2 an hour before his feed.


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