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Managing older sibling w/special needs and infant?

603 views 8 replies 7 participants last post by  crazycat 
#1 ·
Hi everyone,

I have a 3-yo son who was a micropreemie (26 weeks, 1.7 pounds) and am currently almost 32 weeks pregnant with our second child. Our 3-yo has many special needs - he has a lot of respiratory trouble (chronic lung disease, reactive airway disease, frequent pneumonias), as well as being developmentally delayed, non-verbal and entirely G-tube fed with severe reflux. (He's had two Nissen procedures in the past to try to help with this but still has a lot of trouble). He is currently in preschool four mornings a week and loves it. He just started walking this summer after recovering from a major airway surgery earlier in the spring when he was able to have his tracheostomy tube removed, and he finally is able to have enough freedom (from oxygen tubing and all that goes with a tracheostomy) to actually move around freely and play.

My question is, I also work at home and my income covers a good 50% or more of our family bills, so it is definitely needed income. However, it is a struggle already to balance work, the many needs of our 3-yo (which of course I feel like I'm never doing quite enough with him as it is), along with the day-to-day household necessities and I am more than a little concerned over how to fit in the inevitable needs of a newborn. My husband works long hours so really isn't here most of the time to help with kids and household stuff. I guess I'm wondering how anyone has dealt with this in the past? I am also very worried about our son's health this winter, as he has yet to get a cold that hasn't turned into pneumonia, and this is his first winter in preschool (we always hibernated the winters away in the past to try to avoid infections, but ended up with many hospitalizations anyway from people coming into the home.) I know we'll just deal with whatever comes our way and we will get through it, I was just looking maybe for bits of wisdom that anyone might have. I have considered hiring an in-home part-time sitter, but I've had some homehealth care workers in the past come in and maybe it was just the ones I had, but I actually didn't feel like it was worth it. If we can't keep our 3-yo in preschool due to health reasons he would qualify for homebased therapy services, which I have mixed feelings about going back to. Any insight? Thanks a bunch! Maybe after the baby comes these pregnancy hormones will settle down and I will feel better about it all anyway? I am very happy to have another child, so that isn't the issue at all, just how to make it all work together so that everyone's needs get met? Thanks again!
 
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#2 ·
Hi! I don't have any advice for you but I wanted to say I have the same exact problem and I am having all the same worries. I have a 15mo with multiple special needs (Gtube fed 90%, cerebral palsy, seizures, just learning to sit up) and I am 20 weeks pregnant. I am also trying to finish my PhD dissertation, deadline May 2005.

Well, if nobody has any advice for us, at least we can commiserate!!!
 
#3 ·
It's going to be tough!

I don't think there's any way around that.

I have never cared for a child who needed tube feeding and other mechanical assistance like that, so I don't really have any idea what the workload is like there. I've stayed with a family whose daughter had just gotten a g-tube, so I'm not *totally* ignorant... it looks like one hell of a lot of work!

My eldest is 4, and she was a different sort of "special needs". She needed a padded cell <LOL!> I'm mostly joking, but seriously, she was 100% on the go all the time, and usually angry/upset/hostile to boot. She's getting a *little* bit better now, but it was absolutely nerve-wracking for the first few months. I'd lock myself in a stripped-down room with both kids while my husband was away and forget about getting any work done... I didn't even dare take a potty break until he got home, or the eldest would destroy something.

fortunately for everyone, he wasn't out of the house much :p

If I may make one *VERY* strong suggestion, it would be www.flylady.com
you may well be the world's most organized mom (you'd probably have to be to deal with tube-feedings! My gosh, I'm glad we've never had to deal with that!) but I can almost guarantee that you will pick up some ideas that will help you keep the household maintenance tasks to a bare minimum.

The flylady system also helps you *document* your household routines so that if you *do* decide to get household help, it will be a breeze to get them started and not have them be more disruptive than helpful. (It's also very helpful for showing the hubby *exactly* what you do around the house all day, if that's ever an issue)

There's also www.savingdinner.com. You sign up for a mailing list that sends you a pre-planned menu and shopping list every week. You don't have to *think* about feeding the family anymore, you just let the menu-mailer do it. I'm saving my pennies for that one ;-> But I'll be doing it soon. I'm already doing a partial version of it on my own.

I just want to spend the minimum possible time on household maintenance, and the maximum possible time on things that I *want* to be doing. These tools have seriously helped me do that :) I hope I'm not sounding too pushy!

On the household help issue, I'd personally opt for outside help with everything *BUT* the actual child-care as much as possible. It drives me nuts that most assistance programs provide funding for someone to take care of the kid.
*I* want someone to do the housekeeping, so *I* can spend intensive-time with the family! But no one funds housekeepers, do they?

Ah well.

Good luck and congratulations on your son's progress and your new baby-to-be!
 
#4 ·
no tube feedings here.

i have 5 kids. my oldest has special needs and is 9 years old. my youngest two are 15 months. i also bring in a good portion of our income working from home.

it is tough. lists help, but are discouraging and depressing. if i look at how much needs to be done i just want to cry. in a way it is easier to just plug away at one task after another. i know what needs to be done so i try to reserve lists for things that may otherwise be forgotten.

the only other bit of help i can give you is so small i feel silly even offering it--buy the new baby a bunch of footed sleepers. this will save you from trying to match up tiny socks and keeping parts of tiny outfits together. when you are this busy every minute counts.

will the state provide respite care for your 3yo? if you can get that at least you will have an extra pair of adult hands part of some days.
 
#5 ·
and one more thing...if you find now is not the time to live up to flylady's standards i certainly won't think less of you
.

i cracked up when i read her shoes thing...yeah, in theory i should get up, get completely dressed, and put my shoes on. in reality i may have had 90 minutes of sleep the night before and i will be d--ned if i am going to give up a possible 30 minute snooze with two nurslings (who won't snooze at all if i move them) so i can wipe down all the counters while wearing my shoes.

flylady is cool, but certainly not for when you are in survival mode.
 
#6 ·
No tube feedings here, but I have three children (ages 5, 3, and 2) with special needs (autism, SID, anxiety, etc, etc, etc). Everyone else has offered good practical advice, so there's only one thing I'm going to offer -- basically, the mantra that has kept me calm and mobile during the frequent storms: I am a mother. I can do anything, and I will do everything. But I can only do one thing at a time.

That "one thing at a time" part is important. Trying to do more than one thing at a time rarely works (you know I'm not talking about chatting on the phone while ironing). Reminding myself of my strength and my limitations has kept me grounded and (mostly) calm. For what it's worth . . .

All the best,

Tara
 
#7 ·
I have BTDT! My ds is 2 yrs old and has severe breathing difficulties (although we did avoid the trach). He was on o2, has "asthma like" characteristics, is curently on an oral steroid for a cough that won't go away, etc and he was NG tube fed (we also, barely, avoided the g-tube). My dc are 18 months apart and dd was born smack dab in the middle of flu season! Ds also has several food alergies that send him into respiratory distress.

What helped/helps us...

We have a mini-hospital in our home. We have oxygen tanks for when he gets a cold, a stethoscope, a pulse oximeter, a nebulizer, etc. so we self treat. We call our doctor and let him know what is happening and he prescribes any meds. We also have three months supply of his "typical drugs" (albuterol, pulmicort, orapred) so we don't have to run out and get them. (Its amazing how sleep deprivation can make you forget its time for a refill). We avoided hospitals (except for baby's birth) that way last winter.

Hibernate! Noone comes over without washing their hands. If anyone thinks they have a cold, don't come over! I am the work outside the home parent and I wash my hands when I get home. If I had contact with a sick child, I immediately go upstairs, shower and change, before touching children.

DH works at home and we have set up a schedule where he works certain hours while I am home so I spend time with kiddos. With a newborn and toddler in school, you could probably get much done while baby sleeps.

Get someone to come in during the first three months! You need someone to entertain the toddler while you are establishing the nursing relationship! This is very important...whether its outside help or granma.

I think if you can choose your own nurse/respite worker, go for it! Sometimes you have to interview several but I wish we had this. They can become somewhat like a nanny with nursing skills! You don't have the mental capicity (with all the sleep deprivation) to see if your toddler is having breathing problems early. Especially with chronic breathing problems, I think this is very important. You need someone who knows your child and can tell the early signs that he's having trouble. You may think you can but I know with my sleep deprivation, there were a couple of times with ds we probably should have put him on the o2 a bit earlier than we did.

Avoid doctor's visits when you can and if you can't, make sure they usher you into a room immediately when you get there. Wipe the room down with clorox wipes so baby can play. Our doctor balked at this but we told him that ds caught something every time we went to see him and we thought it was in his best interest to avoid him during flu season. We didn't see a doc from October to April last year! Then all his doc appointments are arranged between April through October. (We seen several different specialists but they rearrange their schedule at least once a year to see us when we need to see them).

HTH! Feel free to contact me with any questions, etc. We are getting nervous about this winter again and we see his ped for the last time this year on Nov.4th if all goes well. (later than I would have liked but its been a light fall so far).

Simplify your life as much as possible before baby gets here. Flylady is a good idea...specifically throwing out all the extra stuff you have lying around that really isn't necessary. Then make one room a play room that has a cozy corner for you for your most stressful times. A room that when you are fried, your toddler can play in safely while you nurse the baby or the baby can sit or lie on the floor while you cuddler your toddler.

Oh, and we have also found it helpful to keep all the equipment that isn't used regularly, in one easy accessible space. That way in an emergency, you don't have to go searching for it. And organize the stuff you do use regularly into a conveniet place for quick access and clean-up.
 
#8 ·
I hear you, except I don't have to work. My dh is looking for a second job though, because I'm better at caring for our tube-fed little one. My baby is the special needs one, and my older dd is 3 and has suspected SID so she's also a handful. Whew!

It's very hard some days. I struggle with depression but I have to be somewhat functional in order to care for them. They keep me going, and force me to leave the house so they can get some fresh air.

As far as how to manage everything-- take the easiest path. Right now we do very simple menus and I make enough to last through lunch the next day. My baby is in disposables right now because the cloth ones interfere with her tube. However I'm finding it a lot easier to not have to deal with cloth right now, as much as I miss those soft fluffy dipes.

Once a week the bathrooms get cleaned. I do most of my housework either with baby in the backpack, or I wait until they go to sleep.

We have a 3 bedroom house. 3yo has her room (they will share someday), and the office has been converted to a toy room. Most of the time they toys stay in that room. I also put a CD player so 3yo often turns on music and plays when I'm busy with the baby. She watches too many videos but right now I forgive myself for that because it keeps her occupied when I'm busy with baby. Anyway, back to housekeeping, the toys that migrate out of the toy room are put back there by 3yo at the end of the day. She just throws them in there and I close the door so I don't have to see the mess. It makes the rest of the house much cleaner.

Splurge on some good baby equipment if you have to. We have a nice swing that came in very handy so baby could nap while I read books and played with 3yo. I just bought a nice comfortable high chair for baby to sit in at the table while she's being fed, and I spend time with Abi at the table playing a game or something.

Lots of dates with Abi in the evenings by herself so she feels important still.

Dh puts Abi to bed and I put the baby to bed. They bathe together and then we each take our child to put to bed. Goal is to get them asleep by 8:30-9 PM so we have one hour of no-kid time each day. Also, we switch off watching the kids while the other person escapes for a couple hours to the gym or whatever.

You will need to allow yourself time to take breaks. It's very important. Your children can survive without you for an hour while you go to a coffee shop with a magazine once a week. Those late-night baths with a book are great, too. You have to also find time for your dh because he will be neglected while you put the children first.

Laundry-- I have two laundry sorters with 3 bins each. One is for dirty and is organized by color. When one is full of that color (blue-black-purple, other colors, whites) I do a load of laundry. I put it in the dryer only when I know I'll be able to pull the clothes out and hang them before they wrinkle. Sometimes that means letting it sit all day in the wash until late evening. I immediately hang clothes out of the dryer and fold them. The other laundry sorter is for clean clothes. As I fold undies and stuff, I put them in one of the bins: dh, me, Abi. I can do 2-3 loads before I put them away. I just wheel the sorter around room to room to put the laundry away.

When the sorter is empty it can also be used to clean up clutter. I throw clutter into the bins according to what room it belongs in, and then roll it around the house putting things away as I go, putting other things into it at the same time.

When you cook, make a double batch of the freezable dinners and freeze 1/2 for later. You can start making and freezing dinners now in preparation for your postpartum period. Stews freeze quite nicely.

Hope you have a wonderful birth! Susan (srmina) on this board has a tube-fed child with CP and is expecting #2, too. Maybe you two could be a mini-support system for each other.

Darshani
 
#9 ·
Thank you so much for all your responses!! And all of the great suggestions. I think I will print this page so I can remember all of them, since my memory is fairly unreliable these days, lol. I think DH and I need to have some more discussions as to what exactly I will be able to handle, where he can fill in the gaps, and then what might be a good workable option for in-home help of some sort, at least until I can get a system down anyway. And I'm giving serious thought to just pulling DS out of preschool during flu season so we don't have to spend the winter in the hospital ... Thanks again!!
 
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