New here with 34 day old preemie

[PenelopesMom]

Hi. I'm new here. My daughter Penelope was born at 35 weeks 1 day and she is still in the nicu. Her due date was today. She is having a lot of trouble eating and the drs don't know why. She can suck and swallow, but she can't take the whole bottle. She still has a feeding tube because when they took it out last week, she lost a lot of weight so they had to put it back in. We're really frustrated.
Just wanted to say hi

[sparklett]

Welcome to MDC!

I'm sorry you are going through this... sometimes the NICU is motto is "two steps forward, one step back". I'm sorry she's back on the feeding tube and I hope she starts doing better soon. You've met a great group of moms here- maybe there's someone who had a similar issue. Is she on the 2-hour feeding schedule? I can't help but wonder what would happen if they fed her more often, in smaller doses. Lots of moms find that sometimes once the due date passes, things seem to brighten up. We dealt with some apnea issues that started to resolve right around the due date.

[BookGoddess]

Hello and welcome to the NICU & Preemie Parenting forum.

[SilverFish]

Welcome! I am the mom of a 2 month old preemie who was born at 35+3days. We were in the NICU for about 10 days? Not nearly as long as you, but I feel your frustration on the feeding issues! Like a PP said, we definitely noticed a change around her due date. Even though she was home with us, things were pretty tough with feeding until after that week.

How are you feeding her? Pumped milk in a bottle? Are you able to breastfeed at all? I got really annoyed with the hospital's insistence on schedules and amounts... they wanted me to basically force her to finish a bottle when I could tell she was done. It's so stressful when you have a 1/2 full bottle and a nurse breathing down your neck! Once I was breastfeeding on demand, I could tell that she was much more content... sometimes she'd eat several times within 2 hours, sometimes she's go a lot longer.

Good luck! Keep us updated on her progress!

[MJ13]

My son was like that with my pumped milk. Absolutely refused it in a bottle.
They switched him to Alimentum and almost immediately he started drinking it all

He is dairy allergic/extremely sensitive to all dairy still.

Not here to push formula! But has anyone in your NICU considered allergy? It was our speech therapist that actually figured our little mystery out...just a thought? And since it takes 3-6 weeks for dairy to get out of your system it might be an easy check while you're still there.

[PenelopesMom]

MJ- I will ask about formula.
Right now I am using pumped breastmilk in bottles. She can take about half most times, sometimes she takes more and she's taken a whole bottle a handful of times. The scheduled feedings and pre-determined amounts are starting to get annoying. I yelled at the dr today and told him that he needed to force her to eat. He told me that what is happening with her is unusual and they just aren't sure what to do. The nice dr will be in tomorrow and I'll be talking to her. We'll be sending her to kindegarten in her isolette

[justKate]

Originally Posted by PenelopesMom

She is having a lot of trouble eating and the drs don't know why. She can suck and swallow, but she can't take the whole bottle. She still has a feeding tube because when they took it out last week, she lost a lot of weight so they had to put it back in. We're really frustrated.

It is so hard, what you're going through. My heart breaks for families in this situation. I had a similar situation with DD (now 14 mos) after she was born. Long story short, she was full term but tranferred to the NICU for a suspected infection and refusal to eat, which turned out to be nothing. At 6 lb. 13 oz., she was the biggest baby there and they wanted her to eat 60 ml per feed, which she couldn't do. So she started vomiting, refusing to eat, reflux, suspected NEC, the whole gammut. So my questions are, what does your LO weigh? What volume are they trying to get her to eat? 2 or 3 hour feeding sked?

Originally Posted by PenelopesMom

MJ- I will ask about formula.
Right now I am using pumped breastmilk in bottles. She can take about half most times, sometimes she takes more and she's taken a whole bottle a handful of times. The scheduled feedings and pre-determined amounts are starting to get annoying. I yelled at the dr today and told him that he needed to force her to eat. He told me that what is happening with her is unusual and they just aren't sure what to do. The nice dr will be in tomorrow and I'll be talking to her. We'll be sending her to kindegarten in her isolette

More hugs. I hate the way they "force" them to be able to eat a certain amount before they can be released, rather than trusting that the baby will eat what s/he needs. We found that the easiest way to get out of there was to do everything they said (even gave DD formula while I was pumping and saving), just praying that she wouldn't throw up again....

Basically DD would eat 30 ml, then they'd put the other 30 ml down the NG tube and she'd vomit. Over and over. Then they'd put her NPO for days to do "tests." :cry

My best advice is to make friends with the experienced nurses, and try to get them to advocate for you. Sometimes they can suggest a course of action to the residents to help move things along. Talk to them about your concerns and get feedback so that you can make good arguments to the docs. Above all, get your rest and keep your head up.

Oh, I just read that she's 34 days old. Is transferring to another NICU a possibility? I know it would be a logistical nightmare, but if after a month they are still finding it "unusual" it might be time to see someone else. Has she seen a pediatric gastro?

Please keep us posted.