Tag Archives: tubie

4th Tubie-versary!

Every year, it is hard to think about Braxton’s birth and how long he was in the hospital. In the grand scheme of things, he wasn’t in there very long, but every year the weeks roll by and I realize how much LIFE has happened in 3 weeks and remember just how long it felt then and still feels now. A lot can happen in 3 weeks. Four years ago today would mark 2 weeks that Braxton was in the hospital and it is also the day he had his first surgery to have his G-tube placed.

Seeing Braxton for the first time after surgery.

Seeing Braxton for the first time after surgery.

The day Braxton became a Super Tubie is seared into my mind and every year I see just how much progress has been made. Braxton’s tube was placed because he was aspirating liquid into his lungs and he had extremely poor muscle control. He also had trouble coordinating the suck-swallow-breathe reflex. Drinking meant he forgot to breathe and breathing meant he didn’t drink, or if he breathed while swallowing the liquid ended up in his lungs instead.

The day the G-tube was placed, we were terrified. I remember feeling helpless. I remember arriving to the NICU early so that I could hold him and tell him he was going to be okay (even if I wasn’t completely sure myself), only to be told that I wasn’t allowed to hold him because the anesthesia process had already begun. They wanted him tired and calm. The nurse told me I couldn’t stroke his head or hand. Only firm touches. We stayed with him until he was rolled away and couldn’t follow. I sat in the waiting room putting on a brave face as the fear and tears built up inside. The doctor came up and told us he did great and we would see him soon. The whole procedure was maybe 30 minutes, but it felt like so much longer. Everything in the beginning felt like forever. We finally went back and saw Braxton swaddled up tight and the crash course began.

Four years later, I wish I could go back to myself and let myself know that everything was truly going to be okay.

Anyone who meets Braxton now, would never know there was ever a time that Braxton wouldn’t or couldn’t eat. He eats about 16-20 ounces in less than 10 minutes! For comparison, it used to take 20 minutes to get him to eat 2-4 ounces. The process was v-e-r-y slow, but we stuck with it and our speech therapist helped us through it. Braxton will pretty much eat anything as long as it is pureed. Scratch that, he will eat any of the pre-packaged baby foods. I’ve offered pureed table food like beans and mashed potatoes and he is NOT a fan!

We are working on food chaining again which is how we got him to eat different baby foods. I am trying to add in a little bit of pureed table foods into his meals so that he is used to new tastes and new textures. He can always tell when there is something different about his food. His body tenses up, he shakes his arm and head, and makes a face like he’s just been betrayed. It’s actually really cute. He will get there eventually, and we will keep on working with him.

For now, we only use Braxton’s G-tube for liquids since he still cannot drink on his own. We have been successful in getting him to take a few sips from a straw and an open cup, but he’s not too consistent just yet. He get lots of water and milk via g-tube to keep him hydrated.

Sometimes it is hard for me to look back and sort through the emotions from the early days, but when it comes to his tube I laugh at myself a little because we were so scared for no reason at all. The tube was the absolute best decision we ever made. Braxton has thrived and grown so much. He is doing incredibly well now and hitting milestones left and right. Something that might not have happened if he didn’t have his G-tube.

Another year with the tube, and we aren’t a whole lot closer to having it removed. And we’re okay with that! It’s no longer scary (minus the occasional pulling out of the tube – that is still scary no matter what) or different. We use it in public without shame. We don’t try to hide it anymore. It’s just a normal part of our life. Once he starts drinking on his own and maintaining his weight, we can have that discussion, but for now it will still be a part of him.

I’m so grateful for modern medicine and Braxton’s G-tube! He wears it proudly. 🙂 Happy Tubie-versary, Braxton!!

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

Braxton, the Super tubie. Strutting his tube proudly. (Photo by Grease Man Photography)

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Feeding Tube Awareness Week

Big sister and Brax :)

Big sister and Brax 🙂

Tomorrow kicks off Feeding Tube Awareness Week! I contacted our local news about running a story, and they invited us to come in to do a live interview in studio! Many families, like us, have no idea about tube feeding until they themselves are faced with the decision.   So, I’m thrilled to have the opportunity to share our story and help raise awareness for tube feeding. In preparation, we made a short video about our G-tube experience that we are sending the news station before our visit.  I also wanted to share it with all of you who may have always wondered, but were afraid or didn’t know how to ask about how we feed Braxton.

 

 

For all our Feeding Tube Awareness posts click here!

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Something’s Gotta Give

I’m really getting tired of reporting Braxton’s tummy woes.  It’s the absolute worst to follow everything the doctor tells you do, only to find that it is still not best for your little one.  Seems like we find a solution and it works for a couple weeks and then BAM! back to square one.  I was really excited when we added corn starch to Braxton’s feeds and were able to run his feeds over 30 minutes instead of an hour, but alas, the vomiting has returned.  I’ve documented everything, but can’t pinpoint exact cycles, so I’m not sure if I’m dealing with Cyclic Vomiting or if it’s simply all part of the Dumping Syndrome.  Everything I’ve read on CV though is pretty severe and a lot of kiddos end up in the hospital for it, so probably not that.  It’s just so frustrating! Even moreso when I can’t get a doctor to return calls while I’m dealing with a child who can’t keep his food down….if that’s not an emergency or at least worthy of a call back I don’t know what is! Possibly time to find a new doctor.  Yes, I know they have other patients and are very busy, but certainly not everyone who calls is vomiting uncontrollably! I’m just at my wits end and feeling like somethings gotta give; my sanity being most likely the first thing to do so.

After a lot of research, sleepless nights, and just misery watching my poor baby, I’ve finally decided it’s time for a change.  We’ve tried several different formulas, medications, and other remedies and they have all failed.  So, I’ve decided to tackle a Blenderized Diet for Braxton.  Just doing the research and trying to wrap my head around it all has me feeling a bit overwhelmed.  Brings back NICU memories when we were being released with endless discharge instructions and appointments to be made. But, we made it through that and we’ll get through this and hopefully it finally brings relief.  All of the research shows that a Blended Diet is healthier and has several benefits, so in the end, if it’s better for Braxton, then I’m all for it.  I’ll do whatever it takes to help my little man.  Many people who have tried Blended Diets did so because their child had several GI issues which included severe vomiting. Almost all who made the switch report that the vomiting stopped within the first week of switching, and many have said their child even started tolerating oral feeding as a result. [ I sound like an infomercial! Possibly still trying to convince myself here….who knows] If we could get Braxton eating by mouth again I would be ECSTATIC!! [So would our Speech Therapist!] There are still some conversations that need to happen before we can forge ahead, but some of the important ones have already happened.  Our Speech Therapist and Occupational Therapist are on board with this decision which is a blessing.  We need to talk to our GI doctor when we see him Thursday to get him on board, and a nutritionist so that we make sure we’re still getting Braxton all the vitamins, nutrients, calories, and everything that he needs to stay healthy and continue growing.

It’s all a little bit scary and very overwhelming, but I’m confident in moving forward with this decision.  I’ll definitely be keeping detailed journals on everything that we try so that we can come back and post here what worked for us.  I can only hope any of the information I write here might help anyone out there in the same journey.  I’m open to suggestions/advice too so if you have any helpful info on getting started, things to do/not do, recipes etc. use the form on the “Contact Us” page and send it over! Thanks in advance!

/// On a brighter note! Braxton took pictures at daycare a few weeks ago and we received our prints today of our handsome man!

Sweet little boy :)

Sweet little boy 🙂

Brax's little smirk like he's too cool for the camera

Brax’s little smirk like he’s too cool for the camera

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Filed under Family, Kids and Family, Life, Special Needs Child