Monday, February 02, 2009

The Battle Against Reflux

We are still in the hospital as of Monday. I had thought we'd be discharged with NG tubes and go home trying to convince the boys to eat the nasty Elecare but Evan has thrown up every feed since the Endoscopy and Erythromicin on Thursday. His body is not digesting the Elecare and the Specialists have no idea why. We are doubling is Erythromicin and adding feeds every three hours and have added an IV to hydrate him because his urine output dipped quite low this weekend. Cameron is also having similar issues but not to the same dire degree as his brother and so doesn't have the IV. We just got back from xray to see if the NG tubes are placed correctly and are waiting on the formula room to mix a 30 calorie Similac formula, even though the GI docs think that there is a milk protein allergy. The boys do not demonstrate any of the symptoms of milk protein allergy but even on the continuous pumped 30 calorie Elecare they have reflux and aren't gaining weight. The only reason I was able to get them to give us something other than Elecare (trust me, I've begged, pleaded and threatened) was that the Dietitian also agrees with me and has backed me up on my plea to try other formulas. I have requested Neocate but they don't carry it at this hospital and will order it if we can't get them to eat the Similac and don't grow on the Similac bolas feedings. This means we will be here for a couple more days at least.

We are still of the mind set that we can get these kids to eat by mouth if only they'd find a formula that doesn't taste like the bottom of a sixth grader's gym locker with orange and vanilla powdered flavoring. We know that if we take them home on NG tubes this time will be limited, maybe only three to six weeks before the boys experience too much damage and then we will have to go to the G tube. But first we have to get them to eat by mouth, second we have to get them to stop vomiting. Everyone agrees they are suffering from severe reflux,and in all other ways and instances they are very happy babies who don't look sick. Yet. It's a matter of time until they do start to look sick and I don't want to wait until they are so sick that they are in serious danger.

Evan is just 12lbs and is now losing weight, and Cameron is under 14lbs and holding steady at 10 months old.

We are all exhausted. The internet is spotty at best and just to log on to make this post took me half an hour of trying. We wash and re-wash our clothes and borrow toy after toy from Child Life Services as the kids get bored and fussy easily. But they are sleeping through the night, with the exception of the during-continuous pump feeding vomit sessions. Evan vomits every four hours at the end of the feed or just before the end, and Cameron vomits after feedings. It means that Drew and I sleep light as feathers on the narrow hard drafty benches so we can hear them when they start to gag and cough in their sleep. Also the feeding pumps are always beeping with errors and that requires a trip to the nurses station. Our room stinks of vomit and Elecare. Yum!

And on another sad note, there are babies in rooms all around us that don't have parents to stay with them. Little teeny tiny babies that still sound like kittens mewing for love and attention. I was told 90% of the babies on our floor are left alone here during the day because their parents can't take leave. It just breaks my heart to hear them crying all day and all night. I know I can't, but I keep wishing that while my guys are sleeping that I could just go and pick one up to make it feel a little loved. I thank all the powers that be and my wonderful husband that I am able to be here with my boys 24/7. Even my husband can't bear to leave. So sad.

I will post more when I can. Thanks ladies!


ivory and jamie said...

Laura, I am sorry things aren't getting any better :( You guys are continually in our prayers!

Kim said...

I have been thinking some big thoughts for you and your adorable little boys.

M is now on Neocate. She switched due to a suspected allergy (no symptoms other than a significant amount of mucous in her stool). The Neocate (which smells absolutely disgusting) did fix the mucous problem. Does that prove she does indeed have an allergy? No. My philosophy is trial and error and stick with whatever works, even if it doesn't make sense.

M is also headed toward a G-Tube. She is 13 pounds even now at almost 7 months and has only grown 3/4 inch in 3 months. I'm curious as to how your boys are growing in stature. We have done repeat Upper GI/Swallow Studies, a Pneumogram w/ pH tube (did they do this for your boys?), tons of chest x-rays to check for aspiration, and the list goes on. Even with months of feeding therapy, I can't say things have substantially improved. They're better than they were, but not close to normal or great by any means. She's back to choking, back to not being able to pace herself, still not really growing, and so on. You just can't make a baby eat when they don't want to eat or grow when they don't seem to be able. It's awful :O(.

Mia is also on a 30 calorie Neocate/Duocal mix + thickener. She was in the NICU at birth even though she was 37 weeks because she had Cyanotic episodes while eating, lots of choking, and couldn't coordinate suck/swallow/breathe, tons of pacing issues, etc. We finally switched to a funny bottle (Medela Haberman) which helped her go from 2 ounces to 4 ounces per feeding. Now, 4 months later, we're at 4 ounces per feeding and stuck there. She is only willing to eat 16 ounces a day on average (20 at best) and rarely wakes up on her own to eat, even now.

I'm throwing all of this useless information your way just to express that I really do understand what you're going through. Feel free to message me anytime if you need to vent. I wish that there was something I can do. I know how much it sucks to be stuck in those four walls all day and night long, day after day.

Kelly, Louis, and Ruby said...

I'm so sorry you are stuck there. I can only hope and pray you leave with answers soon. That is so sad about the babies that alone all day. I would have to refrain myself from going to visit them all...

Thinking of you... Kelly and Ruby

MrsKatieH said...

I am so sorry things are at a standstill ....hoping they improve soon!

Preemie Parenting said...

I was thinking about you guys last night hoping you were home after a weekend of feeding success. Bummer.

Hopefully they can get the Neocate in for you guys to try. My mom pulled out her formula list the other night and these are the suggestions she gave Tricia - if Neocate doesn't work you could always ask for Peptamen Junior or Vivonex Pediatric (apparently Vivonex is about as broken down as you can get).

If the eyrthromacin doesn't work have you asked about Reglan? Our GI doctor said that eyrthromacin only works on some kids - not all.

Also, with the vomit - does it seem like there is a lot of phylem (no idea on spelling) too? I know a couple of kids who take medicine for that and it did wonders for stopping the vomiting.

I really hope they come up with something. Especially for the reflux because having the tube in the stomach vs. the NG tube isn't going to stop the vomiting after feeds.

Good luck and take care (as best you can). said...

I am so sorry that you are still in the hospital and that the boys are still struggling. I think about you guys everyday. I will continue to keep you in my thoughts and prayers.

Annie and Jason said...

Hey girl - your story sounds JUST like ours. We as you know do have the G-tube and no it doesn't STOP the reflux, it lets you vent their tummy to prevent them from losing their vomit orally. We save Jax from losing his food 80% of the time (you've seen his weight gain).

I know this is all so frustrating, your post is really taking me back. The NG tubes can't stay in too's not great for their throats and does keep that flap in their stomach's open.

(sigh) I hope you can find the formula that works or at least helps - thinking of you!! Page me if you have any questions or throw me an email! annie_marie20 at hotmail dot com

Sara said...

I've been thinking about you and your guys. I'm so sorry to hear things have been stressful and lacking in progress. I hope that they are able to find some solutions for you soon!

And thinking about all those little ones who are missing their mommies and daddies breaks my heart. I'm so glad you're able to love on yours. We'll be thinking good thoughts for you!

lutzcowgirlie from the bump

Jennifer said...

Hang in there, you have to believe it will get better at some point. It has to. When Evan was in the hospital, there were babies all around me who had open heart surgeries and no one there with them. How horrible. It just adds to the misery. I'm going to buy you a drink someday. A huge drink, like those giant margaritas at Chevy's.

n. said...

just sending lots and lots of love and hugs your way. pass some along to the neighboring babies as well.

kozer1 said...

I've been thinking about you guys a lot! This post certainly brings back memories for me and my twins, ugh. Everything to a T. I also hated to see other babies alone all day/night :( I rarely left mine alone. Only when Leah was in the hospital for a short time and Evan was home...I had to leave at night twice to care for him at home. I hated leaving her!!

Anyway, I hope you guys get home SOON! Even on NG tubes. We were home on NG for 2 months before we took the plunge to g-tubes. Best decision ever.

Good luck! Your sweeties will be home before you know it!

Shana said...

I feel so awful for you hoping and praying things will get better.


Stefanie said...

Wow. A) I can't believe those babies are alone!! I never left Sadie's side for a minute when she was in the hospital (except to grab a sandwich and coffee). B) One reason they could be vomiting so much is they can't take the continuous feeds. To go from small volumes not so often to that much food in their belly is too fast and too much for kids and causes them to puke it back up. Tell them you want to try to give just two ounces at a time slowly and see if it makes a difference. Also, there's no reason you can't go back to Good Starts beefed up to 30 cal/ounce if they were eating it before! Sadie had a terrible time with even a 4 ounce feed at once. It wasn't until I backed off of that completely that she started keeping everything down. Also, make sure the pump rate is sloooow. Like 30 ml./hour to start. Sadie couldn't tolerate more than that and a lot of babies can't at first. Even now we only do 60 ml/hour and she's had the pump for almost 2 months!