Adventures of Mummy & Her Little Tubie

I’m excited to share a post written by one of our Newbie Tubie Mamas who is the mama of a little tubie and agreed to share a bit of her journey with us! This is a great opportunity to read a bit about raising a tubie from the perspective of the mother…

“There were times I’d sit and wonder how the hell we were going to get through this, how can we live like this forever not being able to feed our baby who’s starving and also failing to thrive anyway so needs every bit of milk he can get.

Our little man is now 8 months and has all of his nutrition via a feeding tube. Some days your baby’s screaming for milk and you can’t feed him because you can’t get the right aspirate – this could take us hours. It does get easier I promise!

I’m very lucky my husband is amazing with our children. He’s definitely the more practical thinker and I go into full research mode and sit and think what if. I have managed to tone down the googling – my husband made me promise I’d only google it if the doctor had spoken about it or it was in one of his reports and that really does help. Your then looking at specific information rather than a whole load of case stories of children who have completely different medical histories. I do find that being prepared helps my mental health, but only if I’m preparing for the real thing, not something from google that ends up being way far off from what’s really going on.

It also helps that he’s a very hands on Dad so I know when I’m in hospital with our youngest that the others are safe and happy at home with their Dad who also manages to keep the house going while I’m away. They spend lots of time visiting us because at the moment they’d rather be with us at the hospital but when the time comes that they don’t want to do that anymore we will be respectful of this and put other plans in place.

Our children have been amazing, they find it really tough and it’s so important to remember that this isn’t easy on them, either. They’re young, but they see the complexity, they see when we are upset, they want to know, so we tell them what’s happening but also try and keep their lives as normal as you can. We try and make sure they get to all their clubs, they have friends for tea or we get them on days out as we would have done before.

Siblings are a great gift to our tubie, but we have to make sure that each child feels loved, appreciated, and individually important to us and to everyone. Each one makes a huge difference, is an inspiration, a source of strength and light and joy.

During feeds it can be difficult to pick your baby up without messing up the pump, kinking the tubing, or making your baby uncomfortable from the feeds, and as caretakers, moms especially, all you want to do is hold that sweet baby! There are often extra steps when doing these basic, instinctual habits, and when you’re a parents, that can be extremely frustrating and disheartening. Eventually, the medical supplies falling out of all of your closets and the tasks that come with tubes and chronic illnesses become part of your daily routines, it all just becomes second nature – scary thought, right?

It’s all about finding the right mindset, but you first have to almost grieve the life you thought you were going to have with your new baby. I cried for hours that I would loose that bond by holding him to feed him; I can assure you I was worrying over nothing our bond is stronger than ever! We still get plenty of cuddle time and when he’s feeding I’ll often sit next to his cot and hold his hand, play peekaboo or tickle him. There are lots of opportunities for bonding you just have to look for them.

I woke up one day and realized this was our life and we’ve got two choices we get on with it, build our little man up and hope one day he stops aspirating or we sit and sulk about it which gets you absolutely nowhere! Life doesn’t stop for a feeding tube, feeding tubes allow life to get going again, it allows children to BE children, it is just another way to feed your little one.”

-Hayley Smith

If you have any interest in guest posting, I’m always happy to share different perspectives and pieces from fellow writers 🙂 Email me/contact me through the blog if you want to talk about it 🙂

 

The Rarest of Guest Bloggers: SMA Syndrome

My name is Danielle and I am 26 years old. Growing up I suffered with ongoing stomach issues and doctors just couldn’t seem to figure out a cause. These symptoms would come and go in waves and there were even periods of time where I would begin thinking I was doing okay! Sadly, those times were short lived and when my senior year of college came about, things took a turn for the worst.

In 2015, I became very ill. It began with my endometriosis creeping back in and that was followed with my gallbladder needing to be removed, and despite those things, I continued to progressively get worse – especially stomach wise. I was having severe abdominal pain when I ate, nausea, vomiting, early satiety (I would take a few bites of food and feel overly full instantly), bloating and weight loss. I was only 105 lbs to begin with so I didn’t have any weight to lose so things became critical rather quickly.

In February of 2016 I was hospitalized because at this point I was not able to keep anything down, not even water. I had dropped to 90 lbs rather quickly and we were very scared. My doctor had run so many tests but could not figure out what was wrong with me, until he happened to be in the right place at the right time. He was at clinic where he overheard a nurse, who isn’t typically at that clinic, talking about another girl who had just been diagnosed with this rare condition. He immediately thought it sounded very similar to me so as soon as he was done at clinic, he came directly to the hospital and went to the radiologist. He told the radiologist to relook at one of my CT scans but from a different angle.

They immediately saw the problem and he came up to my room where he finally looked at me and said “I figured out what is wrong with you. You have SMA Syndrome,” otherwise known as Superior Mesenteric Artery Syndrome.

This condition, SMAS, I’ve never heard of it, I don’t know what is hitting me and how it is going to change things, what my life will look like now, all I know is it is rare, and though it has terrible symptoms, it can be very hard to detect. I had numerous CT scans but until they specifically looked for the compression itself, they were missing it on my scans for the longest time even though it was right there. The compression can be seen on CT scans, angiograms and upper GI studies with barium.

SMAS is an extremely rare and potentially life threatening stomach condition in which the third portion of your small intestine (duodenum) becomes compressed between your abdominal aorta and Superior Mesenteric Artery.

In other words, part of your small intestine becomes crushed and food is not able to pass through, creating a blockage.

This can lead to severe malnutrition, sometimes resulting in death. The mortality rate for SMA Syndrome is so high (1 in 3) because it is so rare and often times there is a delay in diagnosis. As you can see from my story, I was extremely lucky that he found it when he did or otherwise I might not have been here typing this today.

So how is SMAS treated? There is no cure.

There are also 2 types of this condition. One being acute onset, caused by extreme/sudden weight loss often following something like scoliosis surgery. The other being chronic, meaning it develops over the course of their lifetime. Surgery can be done to relieve the compression, or sometimes gaining weight (usually via feeding tubes) can also relieve the compression and allow food to start passing through again. However the damage done before it is found cannot be reversed and often times the symptoms can still remain even after surgery or weight gain, which is why there is technically no cure. In acute cases, the prognosis is better and oftentimes weight gain is enough to correct it and relieve the symptoms.

Chronic cases are a bit different, these cases are where the symptoms can still remain even after medical intervention, they aren’t easily treatable and there is absolutely no cure. That was the case for me. As soon as I was diagnosed I was immediately put on TPN (total parenteral nutrition) to help get me stable enough and I had surgery within 3 weeks. Since then, I have continued to have an avalanche of problems and my symptoms have remained. I continue to have pain with eating, nausea, vomiting, bloating and severe motility issues. The damage done to my body from SMA Syndrome has caused the entire rest of my GI tract to slow down and not function properly, so I have developed other chronic motility issues from it as well (such as Gastroparesis and intestinal dysmotility), which sadly is often the case for many people diagnosed with SMAS.

After numerous attempts to try and get things under control, I had to get a feeding tube placed in my abdomen to help give me the vital nutrition I need to sustain myself. I had a surgical GJ tube placed a year ago. I also am currently on TPN through a central line (port) in my chest due to the severity of my motility issues at the moment and not being able to tolerate my tube feeds right now. So often times feedings tubes are needed even after surgery to help manage the symptoms that remain and to help sustain individuals with SMA Syndrome.

Getting a feeding tube can be very overwhelming. It isn’t easy to process what it is like to have a tube surgically implanted into your body and it is a huge adjustment.

But what made the transition easier for me when I had my surgery was Newbie Tubies. I came across Newbie Tubies on instagram (@newbietubies) and saw that they create packages for people who are getting feeding tubes that are filled with all sorts of awesome things to help someone recover from the procedure and different items for the new tube as well.

The goal is to make the transition easier for someone by sending them a package to brighten their day. You can apply yourself or you can nominate someone to receive a package.

 

When I recieved my package it had things such as a blanket, water bottle, socks, handmade heating pad, tubie pads to decorate and protect the tube, bath bombs and a coloring book. It also included a list of tips for living with a feeding tube for those who are getting their first tube. Also, everything was donut and dog themed to fit my personality, which can be noted on the application to make each package more personalized to the recipient.

I cannot express how much receiving that package meant to me when I returned home from the hospital and how much it lifted my spirits. Newbie Tubies is truly amazing and it is creating an awesome community of fellow “tubies” on social media. It is awesome to be able to connect to others who have feeding tubes as well because you can relate to them and also share tips and tricks with each other to help make living with a feeding tube more manageable.

So if you have a feeding tube, are getting one or know someone with one please go check out Newbie Tubies on instagram. Or even if you just want to help, you can donate money or items to go in the packages sent out. So please check it out!
I share my story and my experiences with SMAS with hope that it will help someone else find their diagnosis and know they aren’t alone in this journey. It can be incredibly hard finding any answers, and I know that if it weren’t for individuals working to spread awareness through social medias and the stories others have shared, I wouldn’t have been diagnosed, I would have continued suffering without answers for much longer.

SMAS is an extremely rare condition, and because of how rare it is it is and due to overlaps with symptoms of many other stomach conditions, it often isn’t thought of. Not a lot of doctors know much about this rare disease, most of the time they have only read about it in textbooks during medical school, but each patient, each case, is unique and complex, not one fitting the case studies or textbooks perfectly.

I had no idea what it was until I was diagnosed, so I hope that reading my story can help someone else out there and just educate more people about this condition. For more information about SMA Syndrome, you can go to https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome.

 

Post by Dani Fantaskey — guest blogger and newbie tubie package recipient


 

Thank you Dani!! Your post is fabulous and I am SO glad your package made such an impact on you – seeing your positive remarks truly inspires me to keep working hard to individualize each package. I love doing it, so I’m glad it doesn’t go unnoticed 🙂 So happy to have you, keep in touch and I’d love to have you back involved with the project anytime! Lots of love!

If anyone has questions or comments for her, comment below or contact me and I will get you in touch with her 🙂

xoxo

Rachel