Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011 1 Clomid/Ovidrel BFN May 2011 Natural cycle Aug 2011 BFP M/C 4 Weeks 1 IUI Sept 2011 BFP M/c 7 weeks Provera Dec 2011 BFP M/C 3 Weeks
DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011 IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone) IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone) Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) Went to Beer Center- high tnf, low lad, implantation failure
Nov/Dec 2012 LIT Treatment
Dec 12 Humira Jan 2013 BFP Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin Miracle Born August 2013 Premature
At every meal she either chokes or sucks back rolls her eyes and then has a Brady. She always gets the hiccups after eating and yesterday started coughing after eating. She also just doesn't seem like the bright vibrant girl she was last week. Also she is sleeping for 4.5 hours at a time and the nurses don't like that but I rather she sleep if she's exhausted. Also after she has a Brady her color just doesn't look good for an hour or so. She was supposed to go home 2 x and got postponed. My famy has a huge history if stomach issues as babies including reflux,lactose intolerance etc. my sister had Brady's until her reflux was treated. She also is constantly trying to push out gas.
Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011 1 Clomid/Ovidrel BFN May 2011 Natural cycle Aug 2011 BFP M/C 4 Weeks 1 IUI Sept 2011 BFP M/c 7 weeks Provera Dec 2011 BFP M/C 3 Weeks
DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011 IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone) IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone) Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) Went to Beer Center- high tnf, low lad, implantation failure
Nov/Dec 2012 LIT Treatment
Dec 12 Humira Jan 2013 BFP Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin Miracle Born August 2013 Premature
Is she eating from a bottle yet? Did she just start on tye bottle? Maybe try a different nipple, like an orthodontic nipple. What are they doing for her? is she on any meds? Have they tried any cereal in the milk? Our nicu made our baby eat every three hours. They need that for brain development. We used rice cereal for awhile and it really helped the reflux. But they had to cut the nipple and if it weren't perfect, he'd choke and even had a Brady once. We ended up having the best luck (and still do) with the orthodontic nipple. They took his feeding tube out once and he got too tired with all the feedings and went downhill. They put it back in as a backup and it was back out in 3 days for good. It's a dance, one step forward, three steps back. But when your baby is ready, she will make great strides. Hope that helps!!
Pregnancy #1 EDD 1/20/13, D&C for unexplained miscarriage at 12w
Pregnancy #2 EDD 8/28/2013, Carson was born on 6/28/2013 at 31w - spent 37 days in the NICU
She ripped the tube out last week and has been exclusively bottle feeding we have tried 4 different nipples and bottles. She is only on vit d and iron.
Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011 1 Clomid/Ovidrel BFN May 2011 Natural cycle Aug 2011 BFP M/C 4 Weeks 1 IUI Sept 2011 BFP M/c 7 weeks Provera Dec 2011 BFP M/C 3 Weeks
DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011 IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone) IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone) Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) Went to Beer Center- high tnf, low lad, implantation failure
Nov/Dec 2012 LIT Treatment
Dec 12 Humira Jan 2013 BFP Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin Miracle Born August 2013 Premature
Everything you're saying sounds familiar. I think most of us experienced the same things in the nicu. Our neonatologist and pediatrician both told us all babies have reflux, just some worse than others. I guess I would try to have a chat with yours and see what their plans are and see if you can have any input. We had amazing luck in being able to talk with them anytime we needed and get answers. I really have to wonder if your LO is just super tired from eating from the bottle. It takes a lot out of them when they're so tiny. Our LO ripped it out numerous times but they'd just put another in until 2 days before discharge. Don't give up hope. It will get better. Keep the communication open.
Pregnancy #1 EDD 1/20/13, D&C for unexplained miscarriage at 12w
Pregnancy #2 EDD 8/28/2013, Carson was born on 6/28/2013 at 31w - spent 37 days in the NICU
Oh I meant to add that the rice cereal ended up making him constipated after a few weeks. We tried the oatmeal too, same thing. He was super fussy so we stopped giving it about a week or so after discharge. But it worked and helped there for a few weeks while he was in the nicu. It served its purpose.
Pregnancy #1 EDD 1/20/13, D&C for unexplained miscarriage at 12w
Pregnancy #2 EDD 8/28/2013, Carson was born on 6/28/2013 at 31w - spent 37 days in the NICU
If you think its reflux, you can ask when/if they will do a swallow study or ph probe to see what is going on.
If you think its a dairy issue (for most babies the issue isn't lactose but casein, the dairy protein) then you can request she is put on elemental formula or if you are pumping, cut dairy from your diet and see how that goes. Cutting dairy can take a few weeks before you see results though.
It could also be that she has a weak suck-swallow-breath reflex. You can ask to have her evaluated by an OT for feeding issues to see if they can find some methods of helping her eat without bradies.
I would definitely ask for an evaluation from the speech therapist immediately. It's not a big deal, they should just come and give her a bottle and give a recommendation to the neo.
I would totally ask for a consult. Our pedi came in and discussed the care of our twins from week one in their stay at the NICU. He would come in and talk to the neonatologists, and nurses them come talk to us. He would also help with the specialists. It was really nice to have everything phrased a little different, most of the time he agreed with the other dr.s but he had his own expertise that helped the other Drs.
Re: Consult
What's going on with your little one?
Our precious girl, born at 27 weeks.
Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
1 Clomid/Ovidrel BFN May 2011
Natural cycle Aug 2011 BFP M/C 4 Weeks
1 IUI Sept 2011 BFP M/c 7 weeks
Provera Dec 2011 BFP M/C 3 Weeks
IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone)
Went to Beer Center- high tnf, low lad, implantation failure
Jan 2013 BFP
Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
Miracle Born August 2013 Premature
Yours doesn't have to be a sad story
Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
1 Clomid/Ovidrel BFN May 2011
Natural cycle Aug 2011 BFP M/C 4 Weeks
1 IUI Sept 2011 BFP M/c 7 weeks
Provera Dec 2011 BFP M/C 3 Weeks
IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone)
Went to Beer Center- high tnf, low lad, implantation failure
Jan 2013 BFP
Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
Miracle Born August 2013 Premature
Yours doesn't have to be a sad story
If you think its a dairy issue (for most babies the issue isn't lactose but casein, the dairy protein) then you can request she is put on elemental formula or if you are pumping, cut dairy from your diet and see how that goes. Cutting dairy can take a few weeks before you see results though.
It could also be that she has a weak suck-swallow-breath reflex. You can ask to have her evaluated by an OT for feeding issues to see if they can find some methods of helping her eat without bradies.
Our precious girl, born at 27 weeks.