Due to being on a diuretic Ruby has to take potassium supplements (KCl). The KCl makes her throw up. It's definitely not reflux when when she throws up a KCl feed. We are toying with asking the pulmonologist about spreading out the KCl so it's not so concentrated. Does anyone else have this problem. She gets the KCl every 6 hours, we mix it with the milk that goes down the NG tube. It pains us to see her so uncomfortable. We'll be on the KCl until she out grows the need for the diuretic.
Now for the reflux. How much and what medicines are your kids on? Just yesterday with our pediatricians blessing we doubled her dose of omeprisol (prilosec). We now give her two doses 12 hours apart. It seemed to help. She didn't wake-up retching in the middle of the night. Of course last night was the first night we gave her a second dose at 9pm. I'm also hoping doing this helps with the 9am PO feed. She has been refluxing pretty bad at 9am becasue the prilosec hadn't taken affect yet.
I feel like the reflux and the KCl problems are what are holding us back on the PO feeds. We don't have to stop the feeds becasue she's working too hard anymore. She looses interest and just stops. Sometimes she stops becasue she's refluxing, others she just shoves the bottle away and clamps her lips shut. Any tips from other CDH parents would be very helpful.
Sorry no pictures this post. We haven't taken any of her vomiting up her KCl feeds.
Hi Holly and Chris, You
Hi Holly and Chris,
You don't know me but Chris, your parents go to church with my parents in Tyler, TX (I think that is the way it is). Anyway, I have been following your journey and am thrilled that you guys are finally home. I hate that you are having such a tough time with Ruby's feedings and then her keeping down what she takes. We had reflux trouble with my daughter after her "extended hospitalization" and they ended up doing a partial fundoplication (hopefully I spelled that right). I don't know if that is something that might help Ruby if she is having a really bad time with the reflux. You guys will continue to be in our prayers. Little Miss Ruby is a special girl. Thanks for taking the time to keep us all updated.
Hey Holly-- Santiago had bad
Hey Holly--
Santiago had bad reflux --he cried so much and then we were prescribed Zegerid (prilosec + baking soda) and it worked wonders... Ask your doctor about it. I wished I had tried that earlier....
I'm so glad you're back home... Welcome!
I also found the wedge
I also found the wedge worked well for Addisen...
Don't you love being able to
Don't you love being able to ask questions via the blog? I do! :)
Carter's currently just over 20 pounds (a little over 9 kilos) and he's on 6mls of Prilosec 2x a day; 1ml of Reglan 3x a day and 1.6ml of Baclofen 3x a day -- all for his reflux. I think it helps keeps the acidity of the reflux down so that it doesn't burn, but it doesn't help with the gagging or puking at all. The one thing we've found that helps a little bit is thickening his feeds (we thicken the NG feeds with Simply Thick and the PO/bottle feeds with rice cereal). He use to take Poly-visol (the multivitamin) and it would make him puke, so we spread it out over several feeds, which seemed to help.
I agree with Carolyn about sleeping on an incline. What we did was place several towels under the head of his crib mattress (between the mattress and springs) so that the entire mattress was elevated about 30 degrees.
Carter's the same way when he's "done" -- he just clamps shut and won't let any more food in. I wish I knew the magic answer for that one. Is Ruby seeing a feeding therapist yet?
We'll say an extra prayer that you figure it out.
Hey guys, I wish I could
Hey guys,
I wish I could offer some advice about the reflux but I feel I am in the same boat.. we did increase the dose which I think helped. Gabi has screamed a lot less but time will tell. Anyway sorry to hear Ruby is having a rough time. Sometimes all u could do is hold them upright for a bit. Glad to see the pics, Ruby looks Great! Please keep in touch!
Love,
Joanna
Davis, our 6 month old LCDH,
Davis, our 6 month old LCDH, is on 3 MLs of prilosec (2 MG/ML) twice per day. He wasn't interested in feeding until we got his reflux medicine right where it needed to be. If it doesn't seem right to you, keep raising the issue with your medical team. Getting the medicine right has been critical for us. We've also found that getting a sleep wedge (it's like a foam insert for the crib that creates an incline for the baby to sleep on) has been really helpful. There are expensive ones, like the nap nanny, and cheap ones, like the $25 one we got at Babies-R-Us. Another word of advice: Davis' reflux got worth at around 4 months. The medicine keeps him from feeling the pain of refluxing, but he's vomited more. Our pediatrician said that it was due to growth/change with his esophagus, and that reflux does tend to get worse around that time. Eventually, when he's not growing quite as fast, it won't be an issue.
Hi Holly, This is Sheryl. I
Hi Holly,
This is Sheryl. I just brought Jaime home from the NICU in Cincinnati on July 17th. (He was born early on April 16th with Right-sided CDH and Hemophilia). Jaime is on NaCl, KCL, Aldactone (diuretic), Diuril (diuretic), Sildenafil (AKA, Viagra for Pulmonary Hypertension), Prevacid, along with a vitamin and hemophilia medication.
His KCL is given in conjunction with his Prevacid, both are twice a day 7:00 A.M. and 7:00 P.M.
We went back to Cincinnati for our follow up last week, I told them that Jaime was having issues with taking bottles without NaCl, as he was probably becoming accustom to the salty taste. The nutritionist told us that we could tweak any of his meds according to his "home" needs. She said that supplements were just that, supplements. As long as we didn't exceed the total 24 hour dose, we could spread them out into every bottle. We have done this with his supplements and he is now taking every bottle. (We have even started adding a little NaCl to his prune juice...he sucks it down like a champ!)
As for the Prevacid, it's 2.5mls twice a day. It was just increased on July 31st according to his weight increase. Has Ruby gained weight at all since being home? If she has, you may want to question her Prilosec dose.
Before Jaime pulled his NG (5 days after we were home), we were putting 100% of his medication in the NG. Anyways, what we used to do is give him his medicine in the middle of a feed. Then, we would "flush" the tube with the rest of his bottle. In my mind, it mixed the medicine in his tummy as opposed to giving it by itself, thus creating less of a tummy ache?!? I don't know if it was true, but it seemed to work.
Jaime used to throw up every vitamin bottle, he doesn't anymore. I end up making more than one bottle per feed when it comes to medication bottles. I'll put his medicine in 10 to 20 mls of "milk," so not to mix the bitter tastes. NaCl goes in all of his bottles, regardless of any added medication. I feed him the mixed bottles first, then the non-mixed ones. My theory is, he'll be hungry enough to suck it down and it will be gone before he knows it and he'll finish his feed with a pleasant taste. All of these CDH'ers have their own "formula" that will work for them. It's all trial and error, as we are finding out. I hope some of this helps! Feel free to email me anytime...sltrost@yahoo.com.
I wish you the best with Ruby, she is so incredibly cute! Welcome home!!!
Hi- I am mom to Dakota,
Hi-
I am mom to Dakota, R-CDH, born 12-25-2008. She was treated by Dr. Kays at Shands hospital and came home after 2 months. She had relux pretty bad right when we came home (we avoided getting the nissen surgery by the skin of our teeth!). It peaked when she was about 3-4 months and then got much much better - I heard that is typical so you may be at the peak. She is on Reglan (.32 2x per day) and Zantac (.43 2x per day). We are just letting her grow out of her doses. She went from spitting up 5 x /day to 4x to 3x to 1x to no times (*knock on wood*). We went home without a feeding tube and really stuggled to have Dakota take her full feed. She really never did and really still doesn't, but she would take enough to slowly gain weight (now we are working on solids-slowly but surely). We broke up the multi-vitamin she had to take into a drop per bottle at the suggestion of the nurses in the hospital because Dakota was spitting up the milk when we put the whole, or even a half dose in the milk. At least with the multi-vitamin, in Dr. Kays opinion, you can break it up and as long as she gets the total dose throughout the day, she is fine. She came home on the diuretic Lasix, which I do not think had the side effect of taking away potassium, so I am not sure about that supplement. With regard to her reflux medicines, we learned to shoot them directly into the corner of her mouth, little bit by little bit (it takes me about 6 tiny squirts to get in .32 ml). It seemed she really got a better effect from them that way rather than putting them in her milk. Now she is 7 months and actually reaches for the syringe and puts it in her mouth with my help (I guess she learned to like the taste of reglan and zantac-if only she liked peas and carrot so much!). Feeding is a struggle, but you just have to take it day by day-and I was told as long as they gain weight (even if it is only a little bit at a time)and aren't dehydrated, they are doing fine. I have to tell you I have followed Ruby's story from the beginning and I prayed so hard for her in the middle when she was struggling and I was so happy when she started doing so well (Miss Dakota was on ECMO too so I identified with your struggle). You were strong though it all!! Your story is my favorite story and I am so proud of you all and Ruby. Thanks for sharing her life with us!
Oh-I forgot to add about the
Oh-I forgot to add about the refusing the bottle/losing interest. I constantly come up with new positions/methods of getting Dakota to take the bottle: first I used the bobby, then it was holding her in one arm, standing and dancing, and feeding her with the other hand (takes a lot of balance but it distracted her enough that she kept going), then I fed her while she was in my baby bjorn, again walking around the house, then I started feeding her right after she woke up (which means I would have to get her to take a nap everytime I wanted her to eat), then she didn't want to eat after she woke up, she wanted to eat while going to sleep or actually sleeping, then I learned to feed her on her side, with her head resting in the palm of my left hand on a burp cloth (this still works a lot-this is how I feed her throughout the night because I can do it without waking her), finally now she is back to eating while sitting upright and wide awake. Well as she gets older, she also learns more tricks. She can now grab and hold the bottle-she uses this skill either to bring it to her mouth (yay!) or to throw it across the room (boo!). She first would go slack jawed when she didn't want to eat anymore, then she learned tight-lips (like Ruby), then she learned to cry when she didn't want to eat. It is all trial and error and takes a lot of creativity, but keep trying and you will get through it! Ruby is already doing much better than Dakota was doing at her age (Dakota was 7 weeks early as well so I think her prematurity made it even harder). It does get better eventually. Dakota is finally, in the last month, starting to enjoy eating. There is a light at the end of the tunnel!!!!!!
Hi guys. I have been
Hi guys. I have been following Ruby's journey. So hard to go through. I went through it 3.5 years ago with my daughter Kristen. She is a RCDH. Anyways, she was on Omeprazole, and Domperidone for two years. The reflux control really helped with the feeds aspect of things. We still have feeding issues and some aversions. But are thankful that we were able to avoid the G-tube. Goodluck, and I look forward to reading how Ruby is doing and growing!