The Waiting Game

[Anonymous]

We are now on day 12 with Zegerid and still no improvement! I am so tired and frustrated. I am questioning everything now. I wonder, “Does she really have GERD or is it ‘colic’ or something else?”

We tried Zantac–nothing. We tried Zegerid. So far, nothing. I think that by now she should have had at least SOME improvement, even a tiny little bit to let me know we are on the right track. According to MARCIkids, she should be getting 8mg 3 times a day. She gets it twice a day but shouldn’t that help at least somewhat? I don’t want to go against the doctor’s orders without at least SOME improvement to let me know I am on the right track.

We tried probiotics. So far, nothing. We tried the chiropractor. This seemed like it was going to be a miracle and now, nothing. We tried gripe water–nothing. We tried changing to a hypo formula–nothing. Every day I search and search for something that will pull us out of this hell. So far, nothing.

I want stop thickening her feeds with cereal, but she gets worse when I stop. I want to change her formula to Alimentum RTF to see if that helps but my husband says I need to stop changing everything so she has a chance to heal. He has a good point there, but I am just so frustrated and tired.

Ugh!!! I wish I could just throw in the towel and say I give up. She is pooping multiple times a day but it seems like such a hard thing for her to do. There is always crying surrounding it, but my husband reminds me that there is crying surrounding everything she does. He said it just seems like it is centered around pooping because all she does when she is awake is eat, poop and cry. This is true. She cries before eating, she cries during feeding, she cries right after feedings, she cries a while after feedings, she cries all the time!!! I am beyond frustrated.

I have done everything in my power and now I am stretching for everything, anything that will give me hope long enough to get me through another hour, another day. Hope is all I have at this point, but I am losing it quickly.

I am also stressing out about going back to work in a week. If I can get this frustrated, what will someone who isn’t bound by maternal love do?!? Also, part of me WANTS to go back to work so I have at least 8 hours repreve. In all honesty, I don’t think I could take any more of this “full” time. What kind of a mother am I to say that?

Is there an icon for screaming and pulling your hair out with bags under your tearful eyes and spit up on your shirt? If so, <insert here>.

I just needed to vent. It feels a little better to get that out to people who don’t say, “You just have a fussy baby. Some people do.” That may be true, but those women are SAINTS. Thank you for listening.

[Anonymous]

So sorry you are going through this still. I wonder if the Zegerid just isn’t the med for her. You may want to try prevacid or Nexium just to see. I know timing around meals is a pain, but if it helps with her pain then you may just need to do that. Have you tried the Cherry Mylanta Supreme to see if that helps at all? It may help with her poops as well. It will get better but that involves the right meds/formula and until you get there it may be a tough road, but there is an end. I promise. Try to stay calm and just love her like only you can and this to shall pass.. I just can’t tell you when.

[Anonymous]

I TOTALLY know what you are feeling. It is so frustrating. Anderson my 7 week old does alot of the same things. Zantac is not helping and everytime he is awake, he fusses. I think it will get better, it has to. Just pray,pray,pray and call the doctor until you get the response you want. : )

[Anonymous]

I can relate to everything you said in your post. Sounds so much like Landen. We actually tried Neocate twice and we learned that the sodium bicarbonate in it really bothered landen and made all of his symptoms worse. Zegerid helps lots of babies, but some just can’t have it. That was the case with Landen.

Also, maybe her tummy is cramping a lot b/c of the milk proteins in Nutramigen? We had this problem with Alimentum. landen did OK on Alimentum for about 4 weeks and then went downhill fast. Blood & mucous returned in his poop, stomach cramping, increased reflux symptoms, crying & irritability. None of this improved until we switched to Neocate formula. Once we switched to Neocate and he was on it for a few weeks, I truly had a new baby (along with Prevacid, that is).

You might try zegerid for a couple of more days and see if it kicks in. If not, I’d ask for maybe prevacid or nexium (we had tons of success with Prevacid SoluTabs and also Nexium powder packets. Hopefully your doc will be willling to listen to you & make med/formula changes if that is what the baby needs.

Good luck!

[Anonymous]

oh my god you sound like me. you’ve been doing it longer though, which doesn’t give me hope, but i’m getting the “stop changing everything” speech too. people just don’t understand how hard it is to wait and watch your baby get worse in the meantime. every time i change something she has a couple good days and i think “maybe i should just change things every couple daySs! at least then we have good days!” the only time that didn’t work was when we used Nutramigen..that was just horrible.

i don’ tknow how you people are coping. i’m not. the only reason i have time to even write this is because after the last 9 hour sleepless night, my mom took the baby to give me time to get my head back on straight. i cried all day yesterday, and today i’m terrified of even visiting her for fear she’ll be in a bad state and i’ll lose it again. i am going back on anti-depressants just to cope..and i don’t even think that will help. i’m supposed to go back to school in september (university) and i think HOW THE HELL AM I SUPPOSED TO DO THAT? every time she wakes up i think “oh man, what’s this feed gonna be like? will she ever go back to sleep? will she stay asleep long enough for me to sleep? and even when she does, half the time I can’t sleep from all the anxiety. the one bonus so far is that on the new dose of zantac she hasn’t thrown up in a week..which is pretty nice.

we had one good hour during her 9 hour stint..one hour of her eating normally, playing, just chilled. i cling to that hour. i want my happy baby back. everyone says “they grow out of it”..and i know she will survive this..i just don’ tknow if I will!

[Anonymous]

I feel your pain. i havnt even gone back 2 work yet and ashtyn who is going through all of the above is 2 mo old i have totally changed my 5 and 3 yr old girls sleep schedule to sum what of the babies just so i can atempt to get sum sleep. i am sick of waiting 2 i just want to see my baby smild and coo but all i get to see is tears and screaming the docs just say try this it wil take 2 to 7 days to show improvement and if that dont work we can do this which wil take another 2 to 10 days to show improvement. if i had a dime 4 everytime i have heard that id be rich. i hope it gets better 4 every 1 i pray every nite 4 her and every baby like her to stop hurting and be the happy baby i know i gave birth to

[Anonymous]

I’m so sorry that you’re not seeing any improvement on the zegerid. I have to say that we tried many doses of med, and even on 24mg of prilosec we weren’t seeing any improvement. Marci-kids was recommending at least 30. Until we did that dose, she could not get any relief. My understanding is that if the dose isn’t high enough, the med will still leave acid production- it won’t shut off all the acid producing pumps. As a result, there will still be pain. I hope that you can find something that works. I would ask to try the higher dose, if no improvement after 2-3 weeks, then I’d wonder. Or as others have said, maybe it’s not a good med for her. It really is a guessing game. Good luck.

[Anonymous]

It is sad to hear you are hurting and it is so hard to watch it happen. We were told to try something for weeks, but the weeks drag on as he suffers more and more, while the doctors go home to happy times.

We talked to a medical person and they said there are so many combos of drugs that they are beyond comprehension, so it is finding the right one for your kid. HELLO THAT COULD TAKE FOREVER.

I see that most people have no idea what they are talking about in the medical field. I run with a doctor and he said that it is so new and unfounded that the doctors he knows say they are experts, because there is no fundamental course of action to prove them wrong.

hang tough

[Anonymous]

i’ve learned a few things in the past week (with the help of a TON of support to get me thinking more positively):

1) Take every minute for what it is..every tiny smile, every little coo, every moment that your baby is happy..ENJOY IT WHILE YOU CAN. and every bad minute..try not to think “this will never end” but instead hold on to those minutes of smiles and know there will be more.

2) ASK FOR HELP! oh my god! I am SOOO thankful to all the people who have stepped in to help. first: they begin to understand what you are coping with because they spend more time with the baby (i finally heard the words “holy cow! how have you been doing this? this baby is sick!” in place of “have you tried this? have you tried that? you just need to sleep when she sleeps” …yeah, right, when is that?). and second: THIS IS TOO MUCH for one person to cope with alone. If anyone offers to help..TAKE IT! mom can’t take care of anyone if she’s stressed out.

waiting sucks. trying new things every week sucks. hearing that you can’t see a specialist unless she loses weight or gets really sick SUCKS. watching her suffer SUCKS. But enjoying tiny minutes of smiles and laughs and coos reminds you why you are doing it all…so TAKE IT and HOLD ONTO IT and TRY DESPERATELY to remember that someday we will all have little happy kids who grew out of reflux and went on to live happy little lives.

[Anonymous]

Sorry that you are having to cope with this! We all understand your struggles and in my opinion, we are all saints! Do not feel bad about anything that you try because you have your baby’s best interest at heart. That being said, it is hard to make clear, level-headed decisions when you are tired and frustrated. I think that I have made some crazy decisions when I was going insane due to this reflux roller coaster. My son is 10 months old and even though he is still spitting a lot, it actually has gotten easier. Sometimes it is hard to see the progress until I read a post like yours and it brings me back to our early days. There were times when my son would scream for hours, would not tolerate ANY road trips and would literally choke if he was laid on his back for anything. For the most part, those days are over. He is on prevacid, which seems to be doing the trick as to the acidity. Just need to figure out the spitting thing! My point- there is light at the end of the tunnel. It may not get perfect anytime soon (but maybe it will!), but things WILL get easier. Have faith! In the mean time, hand the baby to your husband, grab a beer or glass of wine and take a bubble bath. It is much deserved.

[Author]

Posts