Feel like we'll never get out of here!

[mamamolly1]

12 days ago my twin boys were born at 35w2d. Having gone into preterm labor at 29 weeks, followed by 6 weeks of bedrest, I know how lucky we were to make it to 35 weeks. The boys were both big-- 5 pounds and 5 pounds, 7 ounces. At first we thought we'd be able to skip the NICU altogether. Their size was good, there were no breathing problems or apparent heart problems or anything else.

But quickly they displayed issues with blood sugar and were deemed poor feeders and were moved up to the NICU and they've been here ever since. They both do some feeding at breast and bottle (with pumped milk), but both are reliant on the ng tube for much of their nutrition. Both are growing, but probably might not be without the ng tube.

At first I was given the impression that this would be only a few days. Yesterday, after Max (our bigger baby, better feeder) had a really good day-- taking a full feed (no ng tube) twice in one day-- the doctor agreed that he's making huge improvements. "He might be out in two weeks!" she added? Two weeks? They've already been here about that long! And that's for the "better feeder" of the two babies. And might? That totally took the wind out of my sails and set off yet another round of crying.

I know they're getting good care here. But I'm just so sick of this place. Sick of the tubes and wires. Sick of the nurses bossing me around with contradictory information (though most are quite nice). Sick of saying goodbye to them at night.

I know that many of this thread have much sicker babies or babies who have had to stay for far, far longer due to very early births or other problems. I know it could be worse. But, still, I feel at my wits end here. This is just not how I ever imagined spending the first few precious weeks of my babies lives.

[AppleCrisp]

I know how you feel. I've been there 3 weeks now and it seems like a lifetime!! I have a 3 year old and I barely see him anymore. Its so hard to split my time between them. My daughter also is fairly stable, but isn't feeding well and can't get off the NG tube. Not to mention pumping every 3 hours has basically stolen my life away and my sleep! My son dances to the beat of the pump - its sadly entertaining!

Hang in there...it really sucks. There's no way around it. I sometimes feel like I shouldn't complain because there are parents who have been there for months with micro preemies and babies with permanent disabilities, but your feelings are important too. Good luck with feeding - I know its slow going. Why aren't they feeding well?

[Mary-Beth]

Praying for your babies to grow and thrive and be ready to go home with you VERY soon.

[~bookcase~]

oh mama - i knooooooow. it's awful. and so awful when they make a comment that is totally out of proportion to our expectations.......keep taking it one day at a time and keep pumping as if it's the key to bringing them home!

can you focus on getting much more skin to skin kangaroo care going on with your boys? that can significantly help the b'feeding process along and is YUMMY bonding time regardless of how it boosts feeding. can you and daddy both go and sit with them snuggled up? skin to skin is great with daddy too

[mamamolly1]

Thanks everyone. The boys have really started to improve and had their feeding tubes removed on Friday night. So if they keep eating and gaining they may be released soon. This is very exciting. And also a bit scary! Currently they are much better eaters on the bottle than the breast. So I still need to figure out how that's going to work. But if I can get them home it seems more doable to deal with.

[AppleCrisp]

Originally Posted by mamamolly1

Thanks everyone. The boys have really started to improve and had their feeding tubes removed on Friday night. So if they keep eating and gaining they may be released soon. This is very exciting. And also a bit scary! Currently they are much better eaters on the bottle than the breast. So I still need to figure out how that's going to work. But if I can get them home it seems more doable to deal with.

My daughter also seems much better on the bottle than the breast, and its hard work. Its weird too trying to learn her cues in the NICU....we have occasionally underfed or overfed her because she nurses, then takes as much from a bottle as she will take. The LC told me that the bottle is sink or swim...she has no choice when its in her mouth, she has to drink or drown, so it looks like she really likes it, but the breast is more natural, she can take time to rest and breathe between sucks and eat at her own pace. So it looks like she is slow on the breast (and she is), but that's ok. Good luck to you....hope you get out soon.

[yogafeet]

[SDorsey86]

With my 29 weeker last year it seemed that they caused alot of problems to justify keeping the babies there longer, IMO.
For example, my son started feeds with the NG tube...at 5ml. They then increased by 5ml every feed until they were up to 25 ml...way more than what he needed weighing only 1500grams...They have a formula of required intake to weight ratio but I dont remember it.
on the second feeding of 25ml he vomited....so they said he was not responding well and stopped the feeds for 4 days (causing him to loose 4oz)
They went through this cycle for two and a half weeks before I finally had enough and made them start bottle feeding him...were he didnt get to much. They say the suck swallow doesnt always develop that early...but they can try...and it worked with him

Then when he was 4 weeks in and weighing 4lbs( what one dr said was the goal to send him home) another said they prefered 5lbs...but couldnt give me a medical reason...just HIS feelings...I thought that if we were considering feelings and not just medical fact that MINE were more important though.

I started calling the social workers and insisting that they had no reason to keep him(other than to bill his insurance of coarse) They of coarse sided with the docs though so I started making a nuisance of myself.
I called the NICU every hour on the hour for 2 days...just to check up on his condition...They asked for it when they told me that he was still very little and that just because he was doing well and had met ALL his release goals his situation could change ANY MINUTE...After two days of this they got so sick of me they let him go!!!!

Some hospitals are much better but this one kept babies until the parents stood up and made them let go. There were 10-12 week old 12lb babies who were still there in open cribs being bottle fed with no appneas or bradies...but the parents listend to the docs when they said " well just another few weeks to be safe"

Made me so mad!