Its hard to believe that it has already been a whole year since our Gtube journey began- but I guess it’s been almost a whole year and a half since my boy has been primarily tube-fed!
A few days after Judah was born, he was able to take a very (VERY) small amount of my breast milk, via an ‘NG’ (Nasogastric) Tube- a small tube that was inserted through his nose, into his belly for feeding purposes.
After Judah’s breathing tube was removed at 50 days of life, he then switched to an ‘OG’ Tube (Orogastric)- a small tube through his mouth.
Judah has always had a strong suck, which we discovered just days after his birth- even though he was intubated, the NICU has a way with figuring out how to squeeze a soother in there too, and he loved it.
Since we knew he loved his soother, and even took it while on his long course with CPAP, we knew that wouldn’t be an issue for him.
However, since babies like Judah are at high-risk for aspirating their foods, we needed to conduct a ‘Swallow Study’ to make sure everything was functioning properly before we could try bottles on Judah. Since he was already getting so big though, and we couldn’t wait to see how he would do on a bottle or even give him to time to learn, the more serious discussions began for Judah to receive a ‘Gtube’ (gastrostomy tube) for long-term feeding needs.
So on December 29th 2016, Judah was prepped for surgery with mama by his side. To be honest, I hated that he had to get this thing. And I was so scared of it too. I will never forget kissing him goodbye in the hallway as they wheeled him into the OR- after 166 days of fighting for his life, I was trusting yet again that this was the right step for our boy.
I waited as close to that OR as I physically could and when the Dr’s came out, I jumped to my feet to have them tell me that my boy did ‘exceptionally well’ in surgery and was well on his way to recovery. When I got to see him back in his room in the NICU, it was hard to see him intubated again (3rd time’s a charm?) but he was already waking up so the RT took it out within minutes of Judah being back in his room. #champ
Koby and I had to receive official training on how to use his Gtube- how to clean it, set up a feed, and change it out in an emergency situation.
About a week after receiving his Gtube, it was time for the Swallow Study which took place in Radiology where they placed a taste-less ink in some formula, and had Judah drink it, all while taking a continuous x-ray image of his swallow. He passed with flying colours- the radiologist actually said in all her years of practice, she had never seen a 25-weeker do THAT well. #champAGAIN
We were discharged shortly after that, and so our Gtube journey continued at home. Throughout this almost-year of being home with Judah, we have only had one ’emergent’ situation where Koby accidentally pulled it out- I nearly passed out, but we got it back in with no troubles.
Judah has had 90% of his nutrition come via his Gtube… I don’t know where he would be without it. This thing that I was so scared of having- this thing that I thought we would have for maybe 3 months (HA!), has been so beneficial to Judah’s growth and overall health.
Within the past few months, we have been able to transition Judah to being fed by bottle during the day, and so we are only using his Gtube at night. Its been a BIG step, that we weren’t sure we would ever accomplish, but dude LOVES his bottles now! He has had trouble in the past with reflux, so that caused him to not like the taste of formula so much!
We recently also started to ‘amp-up’ Judah’s calorie intake at night, by adding some ‘real’ food to his tube feeds. Basically, I have been blending up avocados, coconut milk, chia seeds, apples and cinnamon and adding it to his formula. If you’ve got a high-powered blender, then its awesome to have your Gtube baby experience some real food in his gut! Thankfully he has tolerated this so well.
Its amazing how something that can seem so daunting, turns out to be something you are so thankful for- its actually life-changing!
We expect Judah to have his Gtube for quite some time still. Its always a good back-up to get fluids in him if he were to get sick. And it has also been the way we administered all his meds since he has many oral-aversions. My goal now is to have it gone by the time he turns 5, but we will have to see how he continues with solids since thats been a SLOW-go 🙂
All in all, we are so grateful for this little hopefully-temporary button on our boy’s belly! If you’re a ‘tubbie-mama’, let me know if you have questions, or perhaps some fun recipes for your blenderized feeds!