Thursday, May 20, 2010

June 9

Dave and I have made a very big decision for Lily, and June 9 happens to be the day. Lily is getting a g-tube. This has been a difficult decision, but we've come to peace with it for a few reasons. First and foremost, for Lily herself. Since she's still not taking solids or a bottle very well, nursing just doesn't seem enough. There are times when I'm feeding her every two hours. We want the best for her developmentally, and we're concerned especially about how just nursing affects her neurologically.

There's another reason we're choosing the g-tube, though. Nursing every two to four hours is very draining, especially when you've done it for a full year. Since Lily won't take a bottle, I can't be away from her for more than three hours. I've gone to concerts and a movie or two and school productions of Autumn's with Lily. Any time she gets fussy, I nurse. It usually works, but it's not always comfortable nursing in public places. I'm probably going to have to take her to Autumn's graduation, which she isn't very happy about, but I can't be gone from Lily for more than three hours, and I'm afraid that is going to last longer than the amount of time I can be gone. So Dave and I are looking at the bigger picture--the whole family--and seeing how it will be a positive for us all.

I'm a little afraid of this surgery. I know other babies with Trisomy 18 have had it at younger ages, but I bet it was a nerve-wracking experience for their parents. It just didn't sound good when the cardiologist said, "You just have to worry about her breathing. She might not remember how to do it." Scary.

But I'm hoping. I'm not just hoping that the surgery goes well, but I'm hoping that Lily will be less fussy (she's really getting better, but she's still fussy at night) and that she's sleeps better throughout the night because her belly will be full.

I have the utmost confidence in the doctor who will be doing the placement. He, too, was amazed at how well Lily is doing.

If you are a mother of a child with Trisomy 18, and you've been through this procedure with your child, please, if you have any information, email me and share. I've heard of the bolus feeds and the continuous feeds. Which is best? (Lily will continue going to a feeding specialist to work on her eating issues, so we will continue feeding her by mouth as well.) Do you use a pump? Is it portable? What problems have you run into? Is this easy to care for? I know nothing! I know that I should also be doing some research in the meantime, but where is the time? I'm stealing a few minutes just to type this post. Then it's off to the garage to get things in order for our move.


  1. Jill you can read all about Vera's g tube surgery and our experience here.

    best thing we've ever done for her growth and development.

    only thing is to know the pros and cons of the mickey or bard button. we prefer bard cos it's flat and doesn't interfere with physiotherapy. Doesn't have risk of popping out too.

    you can read about button care too.

    hope this helps.


  2. We'll be covering her in prayer...and all of you too! Big decision, but, I believe, a wise one. We call on God's faithfulness and mercy once consider this Lily.

  3. You are right. The surgery itself isn't the risk, fairly easy surgery. It is the sedation which will always be a risk.. Annabel has been put to sleep at least 6 times I remember and does better than expected. They are just very careful in recovery. We had the bard and I do like this button. It is very flat,the downside is that the tubing doesn't lock into the button and several times we had a carseat full of pediasure or at home just would come out and spill before we knew it. We have never had the mickey, it doesn't stick out more and is easily pulled out. But this is the only one you can put back yourself and you must do it very quickly. Yuck! I am just fearful but know plenty of moms that have no issue with putting it back in. Annabel now has the mini-one. It is a cross between the bard and the mickey. It is not quite as flat as the bard but flatter than the mickey. It does lock in place like the mickey but not the bard. It has to be replaced by the dr. (which is ok with me). Ours has never come out at all. One time it seemed that the valve in the top split and so we just had the dr. replace it (no sedation).
    We tried the bolus but I felt all day I was sitting there holding the syringe while it slowly went in. I opted for the ZEVEX pump. Very tiny and portable. In the beginning Annabel was eating by mouth so we supplemented her feeds with liquids through her g-tube. AS of Jan of this year they placed her on g-tube feeds only. She gets 4-4oz. feeds daily and then continuous feeds of 43 ml. per hour during sleep. Annabel has so many tummy issues I am not sure if they are attributed to her feedings or severe constipation. Our goal as far as calories should be around 900-975 daily. This doesn't mean this is the best for everyone, just letting you know how we do it and what is our preference. We are a very busy family with older children and we take Annabel everywhere and the pump makes things easier for us. But of course Lily is one, and Annabel is 5. Please if you need to ask me any questions I wouldn't mind at all. In the very beginning if you don't feel it is easier, just give it some time. I remember thinking right after the surgery what have I done. But I think most everyone I know believes it is the best thing they have ever done. Is Lily having a fundo. Annabel didn't and I am wondering now if she needs one. Going to GI this week.

  4. The G-tube was a blessing to Brianna. There were no complications whatsoever and immediately we began to see results in that she started sleeping longer (do I hear an Amen?) and also gaining weight.