[Khourtniey]

Forgive me if this is in the wrong place (and move as needed) but I assume this is the best spot to post this...

My website (in my signature) is dedicated to "crunchy" or natural parenting of preemies especially special needs preemies

Now..... My first child was a preemie... I was still able to do 99% of the things I wanted to do parenting wise with him (like co-sleeping, wearing him, etc)... He did not latch on so I did not breastfeed, but I pumped until my milk dried up (from pregnancy).. Which leads to me to my second kid who has the majority of the problems.. Couldnt co-sleep because he was on monitors, I EP for him, but he is fed through a tube.. couldnt wear him for a long time because his monitors and tubes.. etc, etc, etc....

So I am looking for suggestions on how you were able to continue natural or attachment parenting with your special needs children. For instance pumping to provide breastmilk... or any certain thing you did to make co-sleeping possible...

 

[MotherWhimsey]

I don't have any suggestions, cause we're in a similar spot. We tube feed and ds is attached to a few monitors (now usually at night unless he's sick or having problems that need monitoring). we coslept origionally, even with all the tubes and cords, but he needed a special bed, and I can't fit in that with him now, so it's pushed up next to our bed. But sometimes I feel like with all the medical maintenence and the pumping, that I don't have much time to cuddle and snuggle and give my kids all my attention. and I have no choice, it's stuff that must be done. But yeh, I'm feeling very guilty about that. And I can't wear him right now cause it puts pressure on him and he refluxes and aspirates that and has a lot of problems. So much for wearing him. I just feel like I'm cheating him (and dd too).

 

[snuggly mama]

When dd first came home with her feeding tube, we had a big foam wedge that she slept on, in between us in the bed. When she got big enough to roll off of it, we propped her on pillows. Shortly after that, she ended up on dialysis and we were not allowed to cosleep. Dh and I alternated nights sleeping on the recliner in her bedroom (not a set-up I would recommend, BTW).

I was occassionally able to carry her in the sling, but not very often, but since we didn't go out much, she was "in arms" quite a bit anyways.

Dd nursed well, with some supplementation, until she was about 7 months old, then required more formula and feeding tube. I pumped until she was about 11 months old, but the trauma of coping with numerous medical crises and the stress of pumping just got to be too much. After that, we just did lots of skin-to-skin cuddling. I offered the breast, but she was just too sick to even think about nursing.

Here's my opinion on this whole thing. AP is great, and there are things that can help parents be more responsive to their children -- breastfeeding, co-sleeping, babywearing, etc. But that checklist of things is NOT what makes someone an attached parent. Responding to your child's needs and respecting their thoughts, feelings and emotions is what makes an attached parent. For some kids with SN, the checklist of AP practices can do more harm than good. What they need is to know that even throught the scary medical procedures, the nights in the hospital, and the worries about what happens next, they will be comforted, supported and loved.

 

[Khourtniey]

Beth.. I know all of this.. but there are lots of people who truly feel guilty for not being able to do certain things related to AP (like breastfeeding).. So Im just looking for advice to pass along to those people..

Im assuming some kiddos will figure out "even tho my mother did not breastfeed me she still provided breastmilk so she loved me"

Its not a matter of not being loved for not doing something AP.. I just want to help others so they CAN cosleep if they want to.. or CAN babywear if they want to.. I know personally how hard it is to try and wear a child with 8 tubes attached.. There is little support out there for special needs and natural parenting so I am trying to do all I can to help get more support systems out there

 

[snuggly mama]

Dd wasn't a preemie, so I don't know if all (or any) of my suggestions will be helpful, but here's some of the things we did to support our efforts at AP:

Breastfeeding:
* Talk to the physicians, nurses, etc. and let them know how important breastfeeding is to you. Provide them with medically-based, journal-published resources if needed. (We had lots of help from LLL to find obscure articles)
* If supplementation is necessary, ask for SNS, or other methods that help maintain any breastfeeding the baby is able to do
* For babies admitted to the hospital (NICU or otherwise), make sure that all staff know you are breastfeeding so you can have access to a pump and usually meals as well.
*Talk with the docs or maybe lactation consultants about how any necessary meds for baby can be given to minimize disruption of nursing. Dd had some pretty vile medications early on, and I found that she would refuse the breast right after taking them (I think because it just made her feel really nasty, and she was so sensitive about having to forcibly open her mouth)

Co-sleeping:
*Again, lots of talking to docs, nurses, etc. about how important it was to us
so they could advise us of any particular safety concerns related to medical equipment, etc. 99% of the time, they were extremely helpful.
*If in-bed co-sleeping isn't possible, buy or borrow an arms reach or sidecar arrangement, or at least have the baby in the same bedroom if possible
*Check your hospital's policy on co-sleeping during an admit. Our Children's Hospital considers it a good idea as long as the child is stable (ie, not ICU) and will provide any needed support. If they are not co-sleeping friendly, consider advocating to change the policy.

Babywearing:
*Find out what positions are important to avoid for your child's condition. (For example, as an infant, it was critical that dd not be in a "scrunched" position, so no slings, but we could use a baby back carrier when she was a bit older)
*Experiment with different kinds of carriers to find ones that might work for your baby's needs and your comfort.
*Use a light-weight backpack (if you are wearing a front carrier) for the feeding pump, tubes, meds, etc. A fanny pack style could work well, too.

FWIW, I didn't at all mean to dismiss your desire to help families have as much of the AP experience as is important to them, and I'm sorry if I gave that impression.

 

[Khourtniey]

Thanks for those. You did not give that impression at all. I thought maybe I gave the wrong impression with my first post so I was just trying to clear some things up.

 

[MotherWhimsey]

this one might sounds dumb unless you know exactly what I'm talking about... but lead wires... those suckers get tangled up everywhere even when you're not co-sleeping, and after three months of monitors, we finally figured out a way to deal with all the wires. We put all his leads and tubes etc.. on. then we run them through the tab of his diaper (under the velcro part where the side flap attaches to the front), so that it all doesn't get pulled out if you tug on it. Then we would run them through his pants and hook them up. That way instead of dealing with wires coming out all over your baby, you just have to be careful of one large bunch of them.

 

[Khourtniey]

Quote:

Originally Posted by MotherWhimsey this one might sounds dumb unless you know exactly what I'm talking about... but lead wires... those suckers get tangled up everywhere even when you're not co-sleeping, and after three months of monitors, we finally figured out a way to deal with all the wires. We put all his leads and tubes etc.. on. then we run them through the tab of his diaper (under the velcro part where the side flap attaches to the front), so that it all doesn't get pulled out if you tug on it. Then we would run them through his pants and hook them up. That way instead of dealing with wires coming out all over your baby, you just have to be careful of one large bunch of them.

Somebody not long ago mentioned putting tape around them and a little "tab" on the tape to pin them onto things It was mentioned in regards to babywearing and pinning the tab onto the carrier but would work with pinning onto the clothes too... Ive always been worried about pee or something getting on the wires and electrocuting him so I dont do that and I actually get pretty ticked when the nurses do it... But they dont just put it under the diape tabs.. they will have the thing running right up his butt crack..

Anyway.. I *think* its neotech makes some tube holders... Just little things that will keep all of the wires together.. Ive ordered one but dont have it yet.. Im hoping it will come in handy! We have 1 oxygen tube, 1 pulseox, 1 feeding tube and 4 tubes hanging from the vent. They get tangled up quick.

I use poseys on mine.. but it doesnt work for long.. they just magically have a way of getting tanlged up