Since Braxton’s 2nd birthday I’ve been reflecting back on the past 2 years and the journey thus far. Part of me is re-living every single day all over again and the other (larger) part of me is celebrating every day and the wonder that Braxton is. It’s all very bittersweet. I was also asked to write a guest blog post for another site about our story thus far and I thought it would be a great opportunity to write through many of the emotions I’ve been having lately. However, when I went to submit my piece I found that the limit was 3 paragraphs and I had written well over 6 pages about the last 2 years. I’ve been thinking about sharing the piece I wrote here instead, but then I thought instead of sharing it in it’s entirety, I will share it in pieces as I go through each of those early days again. I didn’t start this blog until Braxton was about 13 months old, so there is a lot about his early days that I barely touch on in most of the posts. While it will be good therapy for me, it will also be a good opportunity for you to see just how far Braxton has come and get to know him even better.
Logically, I’d start from day 1, but today, I’m remembering the day Braxton had his very first surgery at just 2 weeks old.
2 years ago today Braxton had surgery to have his G-Tube inserted. I vividly remember everything about that experience.
Braxton had failed several trials with a feeding team who reported his poor oral tone made him difficult to feed. A swallow study was also done and the test revealed that Braxton was aspirating everything he was drinking. Each time he swallowed, the liquid filled his lungs instead of his stomach. As this was very dangerous to his health, Braxton was being fed through a naso-gastric (NG) tube, which is a tube that goes from his nose straight to his stomach. This of course made sure his food was going where it was supposed to. Within his first week Braxton was able to regulate his blood sugars since he was getting his nutrition through the NG Tube. He was also gaining weight since he was actually getting everything he needed, and he was regulating his body temperature on his own as well. Each of these a critical step in Braxton being allowed to go home.
One morning, we walked in to see Braxton and the nurse stopped us almost immediately and told us the doctor needed to speak with us. She paged him and we visited with Braxton as we waited. When he arrived, I remember the doctor explaining to us that Braxton had reached 3 key goals that had to be met before his release. The final piece was feeding. Due to his failed feeding trials and the aspiration revealed on the swallow study, the doctor sat us down and discussed our options about feeding so that we could finally take our son home. The first option was sending him home with the NG-Tube and bringing Braxton back to work with the feeding team. He went on to say that he really didn’t think this was ideal because an NG-tube was only meant to be temporary and based on reports from the feeding trials, Braxton was really going to need a lot of work.
Then, he told us about the Gastrostomy Tube (G-Tube). He drew a picture to explain it to us and told us this would be the best option so that Braxton could get the nutrition he needed and be released to work on feeding at home. If the NG-Tube was temporary, in my mind, the G-Tube meant permanent. I remember the fear we both had thinking Braxton was going to need this forever. It was also the first instance of realizing that Braxton would be different forever.
We went home that day and I researched G-Tubes and tried to wrap my head around it all. I could not grasp the idea of a feeding tube. What would it really look like? How exactly would we feed him? I felt it would all be so cumbersome and we’d never be able to go anywhere and if we did, everyone would see his tube. I was mortified. Would we look like failed parents? What would people think? What would they say? How would he be treated? I think those thoughts scared me more than the thought of the tube itself. I could not find a single reason NOT to have the tube placed, and if it was really what would be best for him, it felt like it was the only thing to do.
The next day, we returned to the NICU and spoke to the doctor and had him explain everything again. One of the nurses also called someone to come and give us more of a hands on demonstration. I remember the nurse bringing in “G-Tube Gina.” It was a doll they put a feeding tube on. The nurse showed us exactly what the G-button was and the extensions and explained the procedure. We felt a little more at ease about moving forward with the procedure, but still we were scared about having to handle it all. Within a few days, everything was set with the pediatric surgeon to come in and do the surgery.
Monday, July 11, 2011 we arrived at the NICU to see Braxton before his surgery. We met with the pediatric surgeon and he again took the time to explain the procedure. He would make a small incision below Braxton’s belly button and insert a small camera to guide him. He would then have to cut through his belly to his stomach and insert the button. It was a relatively simple procedure, but to a frightened mom and first time dad they may as well have been cutting off a limb. I remember sitting with Braxton after he received the anesthesia and not being able to hold him. The nurse told us he needed to be relaxed and that we could only hold his hand and no soft strokes or gentle touches. We sat with him until it was time to go. I wasn’t able to go with him. He was again wheeled off away from me and I just had to sit and wait.
The surgery really didn’t take very long at all. The doctor came back up and reported that Braxton had done well with the procedure and the team was brining him back up and we’d be able to see him in just a bit. I remember going back to the NICU room and seeing Braxton just waking up from the anesthesia. The nurse showed us the button and went over some instructions on how to use it and how to clean and care for the button. We were handed a folder with pictures, information and instructions. Braxton’s feeds had been slowed down and with the new placement of the button we had to work our way back up to full feeds. He was only given a very little amount every couple of hours to make sure he was able to tolerate the food plus the balloon taking up space in his tummy. The recovery time was 2 weeks. However, instead of keeping Braxton the whole time, they told us they would keep him for the first week and then let us finally take him home. The first week was critical in the healing of his stoma (the hole in his stomach around the tube) and it was very important the tube did NOT move at all or be wet. The nurses were able to keep an eye on him and keep him from getting infected and the surgeon was easily able to come over and check him out each day.
Every day we visited they should us how to set up the feeding pump and how surprisingly simple it would be to feed Braxton. A few days after surgery a representative from a medical supply company came to the hospital to actually give us the equipment we would take home and show us how to use it. I was so nervous and scared learning about everything. Joseph had already gone back to work so I really had to pay attention because I was going to have to teach him too! The learning curve was steep, but fortunately I did learn what I needed in that first week to be able to take Braxton home finally.
Looking back as my present self I can’t help but chuckle a little bit. If I could go back to that time knowing what I know now I would laugh at myself and all the worry and stress that I had during those first couple of weeks. Yes, it’s very scary when people start throwing terms around that you don’t understand, but it is really all going to be ok. If I had told myself then that in no time you will be an expert I would have never believed it.
Braxton’s tube is now such a NORMAL part of our life I don’t even give it a second thought. When I run down the list of medical symptoms and equipment I often forget to mention his feeding tube because his tube is as much a part of him as his arm or his leg. It’s funny when we see a different doctor at the pediatrician’s office and I have to run down a quick summary for them and then they lift his shirt to listen to his chest and say, “Oh, he has a feeding tube?” And I’m like “Ohhhh yea I forgot to mention that…oops” I forget that it’s different. As worried as I was about Braxton being different forever, I’ve now come to see absolutely no difference it all. It’s just the way life is. It’s our normal. His feedings have become second nature to us now and I never would have thought that sitting there in that chair 2 years ago as the doctor told us Braxton needed a G-Tube.
2 years later, we are pretty much experts with using his G-tube, caring for it and troubleshooting when necessary. We’ve come a long way as parents since then and Braxton…well, Braxton is a completely different child than that little boy I held in the NICU.
Braxton began to really thrive after having his G-tube placed. He gained weight a little too well and there were lots of adjustments in the beginning trying to find the right amount to feed him. It was a little different trying to get the right sense of what he needed. Typical kids will tell you when they are hungry and they eat until they are full. A tube fed child doesn’t really know what it means to be hungry because they are kept on such a schedule. There were days we had many appointments and we were an hour or two late with his feed and Braxton was just content. No crying or fussing from being hungry or anything.
I didn’t realize it then, but his tube saved his life. Without a feeding tube we would have taken Braxton home and continued trying to bottle feed him without success. He wouldn’t have gained any weight. Worse, he probably would have swallowed so much in to his lungs that we would have lost him. I know now, his tube saved his life then and continues to help him live every day. We are working very diligently with a speech therapist to get Braxton eat or drink anything by mouth, but having little success. If he didn’t have his tube he would be completely malnourished and who knows what would happen. The alternative is definitely not something I like to think about. Instead, I see a happy little boy who is indeed superhero like in every way since his first day in this world. Braxton is a Super Tubie. A term coined by the Feeding Tube Awareness Foundation for all tubie children surviving and thriving thanks to their feeding tube.
Happy Tubie-versary, little man!