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#1 of 11 Old 08-06-2008, 04:38 PM - Thread Starter
 
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Is the whole suck-swallow-breath thing the sucking reflex you associate with feeding? My ds is 34 weeks GA today and he seems to have zero sucking reflex. He was sucking on a pacifier for a few days after birth but he doesnt even want to suck on that anymore.

We have been trying both bottles and breast and regardless, he just sits there with his mouth open but wont suck. Has anyone else had their preemie do this? Any idea when it resolved? This is the only thing holding him back from coming home

TIA

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#2 of 11 Old 08-06-2008, 05:26 PM
 
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Gosh I'm so sorry! Have they tried having you use an SNS or even a syringe while your babe is on the breast? That might get things moving.

How much skin to skin have you been able to do? Sometimes that is what it takes to stimulate that rooting behavior.

This is something that might take a bit more time and will most likely improve as you get closer to your due date. Our hospital wouldn't even let us try nippling until DS was about 13 days old (he was a 33 weeker).

You may want to consider looking outside the hospital for help. Do you have a local La Leche League? If you do, there may be someone within the group who could lend you some additional advice and support.

Is he being tube fed? If so, how is that working? I mean, when does breast/bottlefeeding happen during feeding time? Do they let you try first (breast or bottle), then then tube feed? Are they trying to nipple before every feeding, or is it just occasional? Just asking becuase ya never know.....

And I think it's great that this is the only thing that's holding you back! Your babe must really be a fighter. We dealt with bradycardia, apnea, desats, etc. FOREVER! You're doing great!!! Just hang in there a bit longer, and things will start looking up.

One other thing- are you having any luck at all with the bottle? Or is pretty much zilch when it comes to breast or bottle?

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#3 of 11 Old 08-06-2008, 06:18 PM
 
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This didn't really *click* for my ds until into his 35th week, and it was like a lightbulb had turned on. Literally that quick. He wasn't doing well with it one day, and then he was. He came home at about 36.5 weeks.

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#4 of 11 Old 08-06-2008, 07:18 PM - Thread Starter
 
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When I am there, we do nothing but skin to skin. I hold him the whole time. However, I am not there much-only in the evenings, from about 5 or 6pm to 10:30 pm. I cant be there anymore than that due to dh having to work and no sitter for the other kids. During the weekend I can be there a lot more, it just sucks during the week.

He wont suck on anything-bottle, breast, pacifier. I have plenty of milk so he knows its there, it comes out when I try to put my boob in his mouth, lol.

Yeah, he is being tube fed. They try to get him to take a bottle when I'm not there and I try to breastfeed when I am. We have tried both ways-usually he gets his tube feeding while he tries to nipple. We also tried waiting but it really made no difference. He just doesnt get how to suck.

We have another LC coming in tonight to try to help, but I guess it may just be something that we have to wait for.

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#5 of 11 Old 08-07-2008, 02:04 PM - Thread Starter
 
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Nevermind! He took an entire bottle in 15 minutes yesterday AND he nursed! Now I just have to wait for him to get up to 8 feeds-which apparently is going to take over a week since they want to do it one at a time. That part sucks but at least he's eating .

Dh thinks I should push for more oral feeds, but they said they also wont let him go home until he has zero decells for 5 days. Is that standard? I mean, I dont want him decelling at home either, but he only had one very brief one yesterday and they wont count that day now. 5 days seems like its overboard to me, I dunno. But anyway, pushing for more oral feeds seems silly if I cant take him home for another week because of decells anyway. Ugh. Hopefully he wont have any at all today.

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#6 of 11 Old 08-07-2008, 06:35 PM
 
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The day requirement for no decels/apnea spells varies from hospital to hospital, I think. Ours was 7 days w/no As or Bs.

And yea on the feeding! Great news.

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#7 of 11 Old 08-08-2008, 01:52 PM
 
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How fantastic!!!!!!! Sounds like all he needed was a little extra time.

Not releasing him until he's gone five days without decels is a very good precaution. And don't forget that he has to pass the car seat test, too (but considering how well he's doing, I'm sure he'll do great!).

Towards the end of our stay, the more seasoned nurses kept telling us to watch the BABY, not the monitor during brady or desat alarms. A few of the alarms they were willing to overlook, since the monitors were going crazy, but Jack was obviously breathing and not in any sort of distress. Having that kind of outlook might allow you to get home a bit faster.

At the same time, I do have to say that I wish our hospital had the 5 day rule. Ours had a three day rule. Jack went three days without any alarms, and then the day after we brought him home (which would have been day 5with with no alarm), he developed breastfeeding apnea. In the long run, I wish they had observed him for a few extra days as he probably would have been better off in the hospital with access to oxygen instead of at home, passing out and turning purple while laying in my lap.

Just give it time! You're almost there, mama!

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#8 of 11 Old 08-08-2008, 03:19 PM - Thread Starter
 
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Thats part of what annoys me-his monitors say all sorts of stuff when hes just laying there looking and breathing like normal. I dont understand how he can be going into the 70s and still be totally normal. Last nights nurse even commented on that-she said there was no way his O2 sats were dropping, even though the monitors said otherwise, because he wouldnt be pink and breathing normally. He hasnt had any outward signs of desats since he was removed from oxygen and hadnt while he still had the canula either, but of course he was recieving extra oxygen then.

The other thing that I'm having issues with is his sleepiness. I know its normal. Thats not the issue. The issue is, the NICU nurses keep him very bundled and warm, even though his temps get rather high when he's so bundled up and of course all he wants to do is sleep. They then wont even attempt a bottle feeding because he's too sleepy-but they keep him bundled up like that. When I'm there, I strip him naked and hold him like that (well, with a diaper on, lol) and while he will still sleep for several hours at a time, I have no problem getting him to wake up and try nursing. His temp never drops below normal, even when I leave him in the crib nakey. I just dont get why they keep bundling him SOOOO much when they know his temp gets pretty high like that.

And then last night I had a total meltdown when this nurse asked me when I would be in in the morning and after I said I cant come in until the evenings, said she would hold him so he wasnt all alone all day. I know I should be happy that he isnt being left to sleep in a crib all day but it made me feel like a totally crappy mom-and I guess the idea of someone else cuddling MY baby made the mama bear come out and rawr.

Anyway, I'm going to talk to our pediatrician and see if there is any chance we can get a home apnea monitor rather than keeping him in the hospital over desats that dont even seem to be real. I'm also going to see if she will suggest they try to keep him less bundled and push for more feedings-I figure if his doc suggests it itll hold more sway than if I did. I dont want him home if the hospital is where he should be-but right now it feels like they are just hindering his progress rather than helping it.

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#9 of 11 Old 08-13-2008, 07:51 AM
 
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Quote:
Originally Posted by DocsNemesis View Post
Is the whole suck-swallow-breath thing the sucking reflex you associate with feeding? My ds is 34 weeks GA today and he seems to have zero sucking reflex. He was sucking on a pacifier for a few days after birth but he doesnt even want to suck on that anymore.

We have been trying both bottles and breast and regardless, he just sits there with his mouth open but wont suck. Has anyone else had their preemie do this? Any idea when it resolved? This is the only thing holding him back from coming home

TIA
We had the same thing going on with our 34weeker. He wouldn't really take the breast let alone a bottle (which I resented regarding nipple confusion), we decided to quit bottle-use and try a combination of life feeding attempts and spoon- and injector feeding (injector w/o needle of course, filled with breast milk, injecting from the corner of his mouth, stroking below his chin/cheek to help swallow). It was extremely time and energy consuming. e would also stimulate him physically (like tickling foot soles) for waking him up during nursing/feeding sessions (was severely jaundiced and extremely sleepy baby). We were mostly feeding him together, one holding and stimulating, one feeding. It was a success after several weeks he started to exclusively breastfeed. It was around the normal 'gestational' age (38-40w) that he started to have a strong sucking reflex. So until then, you'll have to try to find the best method to feed your baby now.

Succes, and courage. It is a hard time for your family.

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#10 of 11 Old 08-13-2008, 07:02 PM
 
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Sounds like things are progressing! And as far as breastfeeding is concerned, they will progress much more quickly at home. I found trying to nurse at the hospital horribly stressful. But now, one month after discharge, my DS is now exclusively breastfed, so it is possible.

My DS did come home with an apnea monitor, but it wasn't so much for apnea as because he was still on oxygen, and the two go together. He actually hadn't had any A's and B's in a very long time. It was just a precautionary thing. So it is possible to have them at home. Hope it happens soon for you!
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#11 of 11 Old 08-14-2008, 01:11 PM - Thread Starter
 
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Well he did 6 feeds yesterday orally-although he still falls asleep too quickly during nursing to get as much as they want him to have in a feeding. He's doing great at nursing, he just falls asleep 3 minutes in and then stops sucking, even in his sleep.

Part of the problem, besides his being preemie, is his bili levels are just hanging in there at around 7 and thats not helping with his sleepiness. They dont want to put him back under bili lights since its not going up, but its not going down either. So last night we talked about moving his crib in front of the window so he's getting sunlight during the day to help. It worries me a bit since my last was jaundice for 12 weeks and hung out around 7 the entire time as well. So anyway, hopefully moving him under the window will help!

He has been back on oxygen for the last 4 or 5 days. There is still a lot of arguing amongst the nurses as to whether he needs it or not. One says he is having desats, another says its cause he's moving around, another says its just the monitor being wonky....I have no clue who is right. He still doesnt look like he is desatting but I guess it doesnt really matter for now since he cant leave yet anyway.

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