From Clinical to Cute

Thanks to a fellow tubie mom, I was turned on to something that not only is functional, has a medical purpose, but also adorable!

I’m going to out right advertise for First off I have to thank my bestie Becky, who gifted us a week’s worth of these to River! These make a difference in River’s stoma leakage, I am also hoping to get improvement with her granulation. Right now I have to apply a steroid cream twice a day to keep it at bay.

But more important: they make me smile.

And one day River will be old enough to be attracted to their cuteness and get to even pick them out herself!

I don’t struggle to stay positive, but it’s far from easy. Staying positive and believing that there is an end to this is the only way to be as far as I am concerned. It wasn’t easy to keep my chin up during some of our hardest moments as a family. I was always aware that I was just barely keeping my fear quelled by truly believing that River was going to survive. That she would come home from the hospital one day. That she would smile one day. That we would all be together one day. It was all the “little” things that fueled my faith in the positive. Visiting the ICN and taking her tempature, and it being normal. Or getting to change her tiny preemie clothes into something that came from home. Looking down at my sleepy girl all wrapped up and living in a busy nursery and seeing how calm and pain free she was. It was just the little things that got me through the day. And so when I say things like “staying positive”, “believing” and “faith”. It was hard work to do so, and I needed help. I had my husband, and my son, the amazing support of my family(and when I say family, I mean every close friend is a part of that) and not to mention an anti-depressant. And seeing these little fleecy circles cut from bright playful fabric that embrace my daughter’s tiny little tube, it’s one of those “little” things that keep me believing that everything will continue to work out and get better, and that River will grow and thrive and survive to be a healthy happy girl! And that one day, we will be able to glue one of these little button buddies into her scrapbook as a reminder of when she use to have a g-tube.

I see an end to this, the tube feeding, but I also have to trust that it will happen when it’s ready to happen, when she’s ready, and that there is no due date, or time stamp, on when that will occur.

Faith, Trust, Belief, Positivity, and CUTENESS!


The new g-tube

River had her g-tube surgery on Monday. Everything went as expected and no problems! Best we could hope for in our daughter’s third surgery.

She is back at home after a 3 day stay in the hospital, which is what they told us would happen. They had to wait til she was up to full feeds (which for her at this weight was 34 ml/hr, 24 hours/day). Her three days at the hospital were like this: Monday, surgery was at 2:30, and she was back in her room with us at 4:30. She slept most of that evening, but was alert on and off and comfortable. By that night she was experiencing lots of discomfort and crying. She was having an itchy reaction to the morphine she had received in epidural form. Her face was driving her nuts. By the middle of the night they had finally given her some benadryl which really helped her calm down, plus demerol for more pain control. The rest of the night was rough for both of us. Tuesday she was much more calm and her pain was well controlled with demerol and tylenol. Daddy spent that night with her and it went great. They started her on a slow drip of pedialite by then, and slowly increased the rate every 4 hours. By 4 pm on Wednesday they started her on formula, Elecare is what she takes, and the drip was started at 10 ml/hr, increased 5 ml every 4 hours until the goal of 34 ml/hr was reached by noon on Thursday. We were out of the hospital by 3pm on Thursday! Her pain is now controlled with just a little bit of tylenol and she is back to her cheerful self and seems to be even happier than before! Probably loving not having the NG tube anymore, as we all are!

She is currently on full vent and continuous feeds all day. We have to vent her and feed her this way for two weeks at least, and slowly compress the feeds over time hoping to get up to bolus feedings again.


Hopefully when we see the doctor for her follow up in 2 weeks, we will have compressed her back to bolus feedings, and one continuous feed at night while she sleeps (over around 6 hours). And hopefully she will be able to tolerate less venting in a day. The venting helps gas escape from her stomach and keeps her from retching or vomiting and experiencing pain due to the fresh wound in her abdomen. Here is a picture of her insertion site. The dressing next to it is where a small incision is made so the surgeon can reach the stomach wall, then a needle is used to make the initial hole and then a dilator is used to widen the hole made by the needle, which is the track where the g-tube is placed.

Here is our venting set up for when she is hanging out on the couch with us