Multiple complications

[SashaBreeze]

My twins are still in the NICU but I want to get my head around this BEFORE they get home and besides I will be having to buy some stuff before hand so it is best for me to go ahead and get a plan so I can make my purchases.

1. The twins have an adrenal condition that will require medication to be given with a bottle of breast milk several (at least 3) times a day. I have spoken with their endocrinologist and this is the ONLY way to administer the medication. They will be on this medication for at least the first several years of their lives.

2. I have one twin that is super into nursing, although a little weak still yet to make much out of feeding time, and does not seem very interested in a bottle nipple. My other twin is doing the opposite. When I present my breast to him he will actually clamp down his mouth and suck in his lower lip. Makes me think of trying to get an older kid to take medicine. Cute looking little face when he does it but not very conducive to him learning to nurse.

So any ideas on how I should proceed? Thankfully I am not having an supply issues, I was for a few days but I talked with the hospital lactation consultant and got that worked out.
I would LOVE for my guys to come home to nursing full time (well except for their medication bottles obviously) but I am fine with the high probability that they will be coming home on bottles of expressed milk. What ever gets my guys home faster I am for. So how do I get them to eventually make the switch to breast over bottle, but still give several feedings a day with a bottle???

Bottle recommendations? I dont even own a single bottle. So really I can buy anything that would work the best as I would be building my supply from scratch. Should I go with nipples most like mine, or most like the nipples the hospital uses?

Pump recommendations? Pump schedule recommendations once they come home?

Hopefully what I am asking and what my situation is came across clear, it has been a collection of looong days lately and sometimes I get a little muddled sounding.

[AislinCarys]

I really don't know anything about this medication, but I would ask why it can't be fed in breastmilk in an SNS/lactaid or cup?

Is the LC being helpful? If so, ask her to support you. Of not, I'd suggest finding a good IBLCE, and work with her.

Also, contact LLL and get some support there, there might be mums there with some experience too, I know there is in my group.

[SashaBreeze]

Originally Posted by AislinCarys

I really don't know anything about this medication, but I would ask why it can't be fed in breastmilk in an SNS/lactaid or cup?

Is the LC being helpful? If so, ask her to support you. Of not, I'd suggest finding a good IBLCE, and work with her.

Also, contact LLL and get some support there, there might be mums there with some experience too, I know there is in my group.

Thank you for the response. You know... I had never thought about the sippy cup idea, just knew that the meds would have to be mixed with something and then taken orally. I wonder though if a sippy would have to fast of a flow for my little guys??? Hmmm will be asking about that tomorrow, thank you.

We dont have a LLL around here. There is one 2 hours from my house, but they only meet once a month.

The lactation consultant is actually being VERY helpful, I had not really had a chance to really sit down for a long time with her when I first posted. She is helping me a LOT with some preemie specific problems and we made some pretty good progress, I will be working some more with her tomorrow. She also told me that my local WIC office might be able to help me with long term pumping needs, I am still waiting to hear back about that.

Has anyone else had a similar situation and btdt? Would love to hear some stories of inspiration that this really will turn out ok in the end.

[AislinCarys]

Talk to the LC, she should know this and be able to guide you! If the medication just has to be mixed and taken orally, I would prefer the SNS/lactaid (lactaid is easier to deal with), and if the baby can't suck well enough to cope on even the biggest tubes, I'd go with a cup. Not a sippy cup, a cup for feeding newborns specifically, Medela makes one for example. But the LC should know all this! The cup can be useful in the meantime, until a baby is able to feed well at the breast, or to supplement small amounts in.

The SNS or lactaid on the other hand is a bottle with a tube attached to your breast, so baby can get everything from the breast. We supplemented this way.

And call an LLL leader, or e-mail them, they can be really, really supportive. This is what the leaders are for, so you can contact them. (I'm just starting training to become one).

I know one of my friends had a very little preemie, and he was fed only pumped breastmilk (from milkbank first, and with the stuff they add, then her milk), and before they left the NICU she was breastfeeding exclusively, and did until he started self-feeding around 8 or 9 months, I think.

A mum in my ante-natal group had twins nearly two months too early, and weighing around 1 kg each. The were fed formula in NICU (no milk bank were we live ), but by the time they left NICU she was breastfeeding mostly, and by the time her babies were 3 months old she was breastfeeding exclusively.

So I'm sure it can be done, working around the issues. Make sure your LC knows what your goal is, and is on board.

Tell her that your goal is breastfeeding exclusively (if it is), or as close to breastfeeding exclusively as is possible, with regards to medication (although if possible, your pumped milk in a supplemental nursing system (SNS/lactaid) or possibly a cup, when necessary. Tel her that it is important to you. Don't assume you're on the same page. She may assume that you'd like to try breastfeeding, pump so you've still got some milk when the babies can feed or even that it is all a bit hard on you, so you're looking for "permission" to give up on breastfeeding or give formula.

[SashaBreeze]

Originally Posted by AislinCarys

Talk to the LC, she should know this and be able to guide you! If the medication just has to be mixed and taken orally, I would prefer the SNS/lactaid (lactaid is easier to deal with), and if the baby can't suck well enough to cope on even the biggest tubes, I'd go with a cup. Not a sippy cup, a cup for feeding newborns specifically, Medela makes one for example. But the LC should know all this! The cup can be useful in the meantime, until a baby is able to feed well at the breast, or to supplement small amounts in.

Oh, wait... what is that hanging down from beneath my skirt... oh yes... that would be my ignorance showing.



Seriously I am so embarrassed, I didn't know any of the things you posted above. I even had to do a goggle search to figure out what a SNS is. I have nursed my other 5 children but must confess it had always been effortless with the others so this is whole new territory for me. I will be meeting again with her tomorrow so I will talk with her about all of that and also make sure she KNOWS that I am dedicated to nursing my boys, it never even occurred to me that she wouldn't just assume I was planning on nursing no matter what.

Thanks.

[AislinCarys]

Don't be embarassed. I didn't know about it either until my LC brought out an SNS and asked if I wanted to borrow it and try it out. It is the sort of thing you're unlikely to come across unless you need it!

How did it go at the LC's today?