nursing a preemie...(update #15, 19)

[sariana]

I wrote my last post quickly because I had to leave. I have one more thing to add. With DS it seemed that he went from "not ready to go home" to "ready to go home" almost without any warning. He just "got it" one day. So you may not see the gradual progress you're expecting; your DD may just surprise you.

(Then again, I maintain to this day that they sent home DS because they had a set of twins and a set of triplets already, and another set of triplets was born the day they discharged DS. So maybe they just ran out of room. )

The NICU is a scary place, no matter what. You just take it one day at a time and celebrate small victories. If your DD needs a tube right now, then that's how she'll get her nutrition for now. It won't be that way forever. But it is so hard to have to see our little ones in the NICU instead of home with us.

[DrSally]

ITA with the nurse/LC that the inability to do a full feeding at the breast is energy/strength related. They just poop out after a certain amount of time. It will get better. It only took 2 weeks for my 36 week-er to be able to get everything she needed from bfing. Just hang in there!

[Rainbows&Roses]

I had a baby born at 32.5 weeks who needed breathing/oxygen for less than a week but we spent 30 days in the NICU as a feeder grower due to feeding issues. We had some apnea issues too, but the caffeine got rid of those within 2 weeks, or I guess she outgrew the episodes and stopped needing the caffeine.

Anyway, after about 25 days when all was well but she could not stay awake through some of her feeds, I had to throw a bit of a hissy fit. She would take a lot at one feed but then would sometimes need to be awakened for her next feed and just wasn't awake or hungry enough to do a whole feed. So the busy nurses didn't have time to keep trying to wake her up to complete the feed from the bottle, so back to tube feeding for the rest of that feed. And she had to be 48 hours off tube feeding to go home. So , I got VERY frustrated. I was ready to camp out there and just nurse her around the clock to get her home (though the NICU docs were not exactly supportive of BF in regards to making sure she was eating enough.)

So I had to throw a bit of a hissy fit about their system of feeding on a schedule which was obvously not working for my DD who was almost 6lbs at this point. She would eat almost a double feed at 1, but then at 4 would only do a half feed. So why not just add them all up for the whole day? I even spoke to the NICU manager and everyone kept telling me she was not ready to go home. Believe me, I was not eager to have her come home if she was not ready, but I knew at this point she was. So a lazy nurse (by her own admission...she just didn't feel like getting up to go get another nipple) used the faster nipple that was handy and the baby was able to complete feeds much faster which helped when she was tired. They also started looking at the total for the day as I requested. We were out within 48 hours.

While this doesn't totally apply to you and it is still early, I would just keep the whole schedule thing in mind for the future.

[vludmilla]

You've already received great advice but as the mother of a 32 week preemie who was exclusive fed breast milk for 15 months, I want to encourage you to get a goof LC as soon as possible. I did not do this and I ended up exclusively pumping for those 15 months which was sooo much more difficult and not nearly as rewarding as breast feeding at the breast would have been.

[♥ms.pacman♥]

ok so it's day 10 in the NICU, and DD has been improving slowly..yesterday she was able to nurse really strongly for 15-20 minutes for two out of three of the times i was there (yay ,) so she only had to be tube-fed the half a feeding those times. in the past couple days she has started getting those sucking blisters on her mouth when she nurses (i remember DS always got these) which seems like a good sign she is sucking decently well, right? this morning, though she was initially very fussy & alert, she nursed for only 5 minutes before conking out, which was very disappointing but then she was able to take ~35 ml by bottle (woo!), so she did not need to be gavaged at all (this was her first feeding in the NICU that she didn't have to be tube-fed at all, so that's progress i guess). also, her apnea/brady episodes are less frequent, i think she only had one yesterday and she self-recovered and didn't need any oxygen or stimulation to get out of it, so that's progress on that front as well.

so while she is definitely doing better, i must say, the up and downs of this whole ordeal are INSANE. never did i imagine it would be this emotionally & physically draining. being separated from my DD for so long, plus the uncertainty of when she will be well enough to go home is overwhelming as it is. it's also frustrating that I can't just be there all the time to nurse her on demand like i did with my son... as a PP mentioned, having to follow a schedule makes things sooooo much harder. sometimes when i go to nurse i swear my DD doesn't nurse as well bc she just isn't hungry yet..and other times (like this morning) we get there and she had been awake for a while fussing bc she was hungry, but by the time i get her latched on, she's tired from fussing for so long and can only nurse for a few minutes. argh. anyway, the bright side is that at least she will drink from a bottle now, so hopefully that will help in terms of weaning from tube-feedings.

[Beth24]

Hang in there. You are doing so well...I have been thinking about you every day, and I am so glad things are improving. The nursing must be so frustrating and stressful. But it sounds like that is getting better every day too. Just know how much we are all hopping DD can come home soon!!!

[DrSally]

Glad things are improving! OTOH, I totally know what you mean about the ups and downs being insane and draining. Just know that it won't last forever, and you WILL be home with her, nursing her on demand at some point in the future. Also, at this stage for a premie, all their energy should try to be conserved for eating, so as you know, the fussing "wastes" some of that energy. Knowing that, I'm sure, helps you to get less frustrated when the session doesn't go as long as you'd like. What helped me was to give DD an ounce of pumped milk or formula before trying to latch her on. This way, she wasn't so desparate/fussy, that she could latch on more calmly (and then top her off with more bottle after nursing).

[twowhat?]

Hope you have more and more good nursing days and that your DD gets to come home soon!

[♥ms.pacman♥]

ok, after 12 days i'm happy to report that we finally see the light at the end of the tunnel...since 8pm yesterday my DD has done 4 feedings without needing to be tube-fed at all! three of those times i was there to nurse her, and she was pretty alert, nursed really well for at least 15 mins, then on top of that took ~25ml of breastmilk by bottle! doesn't sound like much but this is major progress, since the vast majority of the time she's been in the NICU (up until a day or so ago) she was often pretty sleepy at feedings and also would not really take bottles (would refuse, or would be too tired) and had to take in breastmilk via gavage tube at every feeding (even when i would go in to nurse her, she would have to be tube-fed a partial feeding as well afterwards).

[egoldber]

Oh good news!!!! That is definite progress! She'll be home before you know it.