feelings aside about me, i'm scared

some of you know the struggles i have had with feeding my boys and we finally decided to go ahead with the 24 hour ph probe/dye/swallow study and endoscope. i find out tomorrow what time we need to be up there (the hospital is an hour north) and i am praying that it's just going to be for one night and one night only and then come home friday as planned BUT i'm packing more than one outfit just incase. i'm worried they'll find something. nothing about their feeding style has been normal since birth so i could use a few words of encouragement, a pick me up if you will. forget about how much you dislike me, my boys' have never posted here so encourage them if you can't me.

i'll know on friday what is going on but i'm super stressed about it.

they've not allowed any prevacid 3 days leading up to the study as to not compromise it so today was the first day and it was horrible. not looking forward to tomorrow.

just need a little pick me up if that's ok.

 

Many :hug:'s Momma. I will be thinking of you and your boys during the next few days. My ds (who had the horrible reflux) did not go through this testing, so I have no words of advice... but I hope you get some answers on how to fix the issue. :grouphug:

 

:hug: Sean had it done when he was first born, I'm sure it's much harder with an older child, but it wasn't too bad when he was little!

I hope they can at least give you some answers and hopefully some solutions! :hug:

 

Lots & lots of :hug: for u and your boys! Hope all goes well for you & them. I will be thinking about you guys and hopefully after the tests you will know what is going on and exactly what you can do to make it better for you & for them! :youcandoit:

 

like within his first few days? i know a pediatric nurse and she's seen the endoscopes done a couple dozen times but they put the kids under....that's what i'm scared about. and walking in their rooms to hold their little hands only to see a tube in their throats and possible tears in their eyes....oh i'm crying just thinking about it.

thanks for the support. i hope we get some answers too.

 

krisdeb04 i see your in tampa? we're going to the renovated all children's hospital in st. pete and all of their rooms are now private so they are separating the boys . we're staying at the also renovated ronald mcdonald house...supposed to be some of the best doctors in the US. i love our new GI so i hope he gives us good news!

 

Good luck! I can't imagine how you must feel :hug:

 

I wish you lots of luck and I hope you get answers. :hug:

 

You've been trying to get these boys to eat properly for a long time & hopefully after this test is done, the docs will have the answers you need. Focus on the outcomes- answers, help & resolution to these issues. Imagine a future of babies who smile, laugh & don't cry when it's time to eat. Also, as 'big' as they are right now, they will not remember the procedure. They will not feel it or remember to be afraid. I'm sorry they are in different rooms (that isn't very helpful for you, is it???) but in a week, it'll be a memory.


Good luck & I hope these issues are resolved for your family for once and for all.
:youcandoit:

 

thanks everyone...i'm fighting back the tears thinking about the procedures but i appreciate all of your support, it helps. i sooooo hope they find out what's wrong b/c once this feeding thing gets figured out things will get so so so much easier!

 

I wish you the best of luck with the procedures. My Mom actually had the ph probe/endoscope thing last week. She was able to get it placed in the hospital and wear it home and return the next day. I know how miserable she was not being able to be on her meds for 7 days prior, so I can understand how concerned you must be. Too bad they can't room them together, that's just so silly. My DS did only the endoscope around the 10/11 month mark. The put him under and I got to walk back with him and hold him until the gas put him out and that made me feel so much better. I was in the room waiting for him before he even woke up from anestesia. Good luck with everything. I think any Mama would be stressing and worried. I'm glad your DH can go to help out.

 

I wish you luck. :hug: I know it's not easy thinking about your babies having these procedures done. :hug: I hope you get some answers from them.

 

I'll be thinking about you guys this week! :hug: That is terrible that they can't be in the same room together. That will make it very hard on you trying to spend time with both. I imagine your DH will be going with you? I hope so because I can't imagine doing this alone! At least with 2 of you you can take turns visiting with each boy. And that really stinks you can't give them prevacid for 3 days, though I know it is for a good reason and will make their tests even more accurate. Many of us here will be anxiously awaiting to hear how your little men are doing, so keep us posted when you get a chance! Hang in there!! And good luck to River and Alexander!

 

Best of Luck to you and your boys! :hug: I hope all goes well!

 

Good luck. I hope you get answers and everything goes well. :youcandoit:

 

I do hope the test goes well and you get some answers. I know what it is like to fear the worst and know all of the worst case possibilities. Hang in there. It will be done soon and you'll hopefully have a better idea what the problem is.

 

I hope you get the answers you need. Good luck, I'll be thinking of your boys

 

I'll be thinking of you and your family this week. I hope everything goes well and you get some answers. That's too bad that they won't let them room together. :-( Please keep us posted.

 

I can't even imagine!!! :cry: Try to focus on the fact that you're getting them the help their little bellies desperately need. I know that's no consolation though. I wish they could room together, maybe a doctor or nurse will take pity and let them be together once you're there. Will definitely be thinking of you and hubby and your precious little men!!! :grouphug:

 

Good luck, I hope you get some answers! :hug:

 

Best of luck to you all! I hope after this you'll get the answers you need.

 

:hug: I'd have a hard time with it too. I hope it goes easily and quickly and you get answers once and for all. Keep us posted!

 

Good Luck! I hope you will get some answers. Will be thinking of you and your boys, keep us posted!

 

All the best to you and your boys :hug: - I can only imagine what you are feeling right now but hang in there and hopefully these tests will shed some light on what has been going on. :youcandoit:

 

Sending you lots of :hug: your way, Kristine. I couldn't imagine what you're going through as my LO's have no feeding issues, but just know that you've got lots of support on here and we're here for you anytime. :hug:

 

thanks everyone. we're still trying to find out what time we need to be there and won't know where we will be sleeping until we get there...which just adds to the frustration. the sooner i know what time in the am we need to get up there (it's an hour north) the sooner i know what time i need to go to bed so i can get up way early to get everyone up and ready and out the door...i'm hoping it's something reasonable like 8-9am, not 6am!

 

My daughter had a ph probe for 24 hours it was a little rough. She had the tube in her nose for 24hrs It gave us a lot of information. She was 7 weeks old. We also had the suck swallow/dye test it was easy. They just mixed a little dye with some breast milk She didn't seem to mind. I Hope things move quickly for you I can imagine how stressed you are. The ronald mcdonald house is amazing!!! I can't say enough about it.

 

:hug: You can do it! I know these next few days without meds can get hard, but it's going to be worth it if you can get some answers. My kids all had eating/reflux/allergy issues, so I know how difficult it can get. :hug: :hug: Hang in there!

 

:hug: Good luck, I hope you get some answers.

 

thinking of you

 

Good luck!

 

thanks everyone...no updates yet. they've had 2 feeds with the probes in place. the endoscopes were clean but they did do a biopsy on each boy and we haven't gotten the results. we have 1 more feed in the morning on the probe and then a feeding therapist study.

will keep you updated!

 

Good luck, I Hope all is going well and you get some solutions for your little guys! Keep strong :clapping:

 

both boys' did very well with the endoscope which took about an hour for both of them. both came up clean as a whistle. they took some cultures though. then we went into the recovery area where the nurses waited until they woke up and put the ph probe in and they got their first feed around 11am-12pm. DH would hit the "fuss" button everytime they arched or screamed and the "stop", "start" button everytime the boys' would stop eating and then pick up again. the probe stayed in for 2 feeds and came out before their 7am feed which they happened to arch and scream the most...go figure. we won't know the results of the probe test or the cultures until about wednesday.

they did order a feeding study and the woman came around 1pm friday. she brought with her two bottles w/o thickener to which i promptly (and probably rudely - not intentionally but i was terribly sleep deprived and sore from sleeping on a rock roll out bed) told her that during the study all feeds monitored were thickened and that they will not eat a bottle or accept any formula without thickener. she insisted on trying and wouldn't you know, no go. so the nurse brought me in tons and tons and tons of packets to thicken it up and i changed everything back over into their dr. brown's bottles (you see for all of the previous feeds i brought everything, the formula, rice, nipples, bottles...b/c i know what they eat from and what they won't). i told her that the boys' never woke up hungry and that i had to get them a little worn out before each feed in order for them to accept it and that they had absolutely no desire in eating whatsoever.

she put the bottle in their mouth (the thickened one) holding river in her arms in her usual hold and sure enough that nipple did not want to go in, she knew immediately that they just didn't want it and wanted to play. while i was thickening another bottle she tried different posture techniques and that did not work. DH suggested that we go 24 hours and let them "readjust" their feeding habbits and schedules to which FINALLY someone agreed with me that that simply wasn't an option because these boys' clearly did not care about food and would end up in the hospital for another reason, dehydration.

while she tried to get river to eat i made suggestions on what i did to make him eat by restraining him a little bit to control the arching and flexing and raising his left hand up and curved around his head so that he couldn't turn it from side to side and sure enough he started to eat for her but stopped. she had me take over and once he started eating again she listened to his swallowing and found nothing wrong, everything was going in the right place.

her thought was is that with reflux babies and their tendency to arch they don't get proper posturing (or something to that effect i'm not 100% clear) and that is why they hyper extend during feeds. her recommendations were physical therapy and feeding therapy. and while DH suggested that i loosen up on my grip and stop restraining them during feeds because he thinks that's the reason for the tears she firmly said no, she has to restrain them, it's either she does or they don't eat. it's not a bottle aversion, they take the nipple, it's not an association with pain. so she basically just said to continue doing what i was, give them their medicine and go to these therapists.

i should mention that both boys' did throw up while on the probe which is good.

we've been home since friday night and they have thrown up at least once, not projectile but ounces of throw up, each.

one of the nurses asked us why they've never been on reglan before and i said "no one will let us b/c of the seizure side effects" to which they replied in a shocked way that and that was nothing to concerned about.

basically we have no conclusions or resolutions at all.

i hate to say it but i wish they had found something so we had a "smoking gun".

i'm not going to restart the solids until after i get the lab results back just to make sure nothing is going on in that department. they've waited this long a couple more days won't hurt.

so that's that.

thank you everyone for wishing us well.

 

I'm sorry you didn't get any conclusive answers yet - but you are doing a great job with your boys and hopefully things will get better soon! I can't imagine how frustrating it must be for you, however despite the feeding problems your boys appear to be thriving. Keep up the great work momma and try not to get discouraged! Wishing you and your family all the best.