This morning, I woke up and made some coffee. Michael was helping a friend with some carpentry stuff, about an hour away from home. I was on the couch when I noticed the coffee maker was in the process of exploding all over the counter. I thought to myself today is going to be one of those days... I was cleaning up the coffee mess when I heard Davis screaming in his crib. It was a cry I hadn't heard before, which scared me. I ran into the room and found him holding his NG tube- the part that's supposed to be in his stomach- above his head, and he was just wailing. He'd pulled it out on his own, and I freaked a little.
Davis was set to eat in about five minutes, and sometimes we need to put as much as half his feed through the tube. I didn't want to put the tube back in without Michael's help, so I decided to just try the bottle and see what would happen. Well, he took THE WHOLE THING, and he proceeded to do that (without the tube) the next FIVE FEEDS!!! If you've ever dealt with the whole CDH/feeding thing, you will understand when I say that next to my wedding day and the day Davis was born, this was quite possibly one of the happiest day of my life. Of course, we may have to put the tube back in if he doesn't take a full feed, but just to know that he can do this is wonderful. It makes us feel that the discussion about another surgery for a g-tube is that much further away.
The one drawback to not having the NG tube is administering medications. We can't just "tube it", we have to give it to him by mouth, which he isn't too fond of. Anyone have any suggestions for a good way to do that?
11 comments:
That is huge! Keep up the good work Davis!
When Owain was little he hated his meds too. We would just mix his meds with a very small bottle maybe a 1/2oz. Something we new he would take and we found that was much better for all of us.
Amber
Looks like Davis is creating his own medical plans! What a smart little guy! :-)
My CDH'er isn't here yet, but Jared had reflux issues and was on all sorts of medications and formulas when he was an infant. We were told to squirt the medicine in with a syringe towards Jared's cheek, apparently this automatically makes them swallow rather than gag on it.
Good luck...
Hugs,
Sheryl
Very happy to read about Davis's success with feeding...jealous, but happy :)
Obviously, I would not put that NG back in unless you absolutely have to. Some kids just do better with PO feeds without the NG irritating the back of their throat. But I definitely understand the anxiety of putting the tube back in. Carter pulls/pukes his out fairly regularly and it is quite the ordeal to put it back in, even though we're becoming pros at it.
Re: the meds, we mix Carter's in with his bottle. That's controversial, because a lot of people say that the taste of the meds may make him aversive to milk, but we have not found that to be the case. Especially when you dilute it in the full feed, Carter doesn't even seem to notice. If you're afraid he won't take the full feed, use 2 bottles. Have one bottle with 30-50 ml's with the meds in it, then the other bottle with the rest of the feed. That way, so long as he takes the first bottle, he gets all of his meds and you won't be as anxious about him taking every drop of the full bottle. Make sense? If not, email me.
Yay Davis, this is HUGE!! Sometimes these babies just need to tell US when the time is right and once they pull their own tube, they really take off. Hope it continues! Don't get discouraged if he doesn't take a full feed one time, sometimes babies do that and it's still okay.
I second what the others said about mixing meds in a smaller bottle. We've done that w/success.
We also tried the syringe when giving a med bottle wasn't an option and had difficulty w/ it. We found that switching to a dropper rather than a syringe helped and that's how we give all of Sofie's meds now. She opens her mouth for them w/o any problems. I think seeing a syringe coming towards her face freaks her out, but the dropper wasn't associated with anything bad.
Jen
The title of today's post sums it right up... AMAZING! I'm so thankful that he is doing so well. What a big boy. So happy for y'all.
Stephanie
Kamryn's mommy
Is it the taste of the meds he doesn't like? Or just the fact that you are squirting it into his mouth? If it's just the squirting, you can always try to just put the meds into a nipple and let him suck the meds out himself. That is how we gave Bodee his diuretic at first because he wasn't taken an entire bottle and we wanted to make sure he got all of the meds. So happy to hear he is taking full feeds. The day they took the NG tube out for Bodee at the hospital was the most amazing day ever for us. I can't even imagine how uncomfortable it would be to eat with that thing in the way :(.
That little man just continues to amaze us. What a blessing! May they continue...
(Oh and the syringe thing worked for us too...unfortunately it was a battle from time to time, but he GOT them)
That's fantastic news! Way to go Davis!
The syringe worked best with Alina. We pushed it really slowly in,so she wouldn't gag. She loves to suck on it. We tried mixing the meds in the bottle but at times she wouldn't take the whole amount, so it was hard to judge how much of the meds she had taken.
That's great! I hope he keeps it up.
I was at Babies R Us today and saw a pacifier/medicine dispenser. Looks really neat and was inexpensive. I don't know if you have a Babies near you, but I'd be happy to pick one up and send it to you. Let me know! :)
-Kellie
So good to read Davis is coming along.
I did want to share our medicine-administering experiences with you, since Davis is/has been on quite a few, many with aversive tastes and he has a wonderfully refined gag reflex...
I do agree with Vierig's--I used to get a nipple/top put together (we use Dr. Brown's). I then put my finger over the nipple hole (turned upside down)--dropped the medicine liquid into the nipple's bell and then put the nipple right in Davis's mouth while holding onto the plastic top and he would immediately suck, and before he could realize it wasn't his milk/formula, it was "too late"--he had already finished/swallowed his medicine. It worked great for when he was smaller.
When he got bigger, I utilized a medicine-dispensing pacifier that I bought online. It only holds 5cc's of meds, so sometimes I had to do multiple rounds with it, but it has a familiar shaped nipple/tip to the Nuk paci's, so when I put it in Davis's mouth, he would suck on that immediately as well. Sometimes I had to bribe him a little, like dunking the nipple tip in a dab of yogurt or sugar to get him to suck on it, but that was rare. You do have to usually force the end of the liquid medicine through with the "plunger" end of this paci, but it never seemed to result in Davis "choking" like he always did with the droppers and syringes.
Finally...we are at the point where DAvis will open up wide when you bring anything remotely resembling a spoon towards his mouth, so giving meds now, is not a chore. He's turned into an eating machine.
I hope this helps.
I am so pleased to read that Davis is doing well.
Prayers,
Alison, Chris, and Davis Cieszko
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