Am I crazy for not wanting a lot of nursing hours?

[Niff]

Our daughter, Mackenzie, is still in the NICU and won't be discharging for a while. She's ventilator dependent and our neonatologists want to see if they can get her safely to a trach colar before discharge. Anywho, we've started learning trach care and it seems to be a breeze. When Mackenzie comes home she'll have a gtube and the trach. I've discussed with our neonatologists what things will be like and have been told that we'll have home health nursing along with a speech therapist, physical therapist, and possibly other staff who will come to our home and work with Mackenzie. I think it's terrific that we won't have to go through the hassle of leaving the house to go to therapy appointments (aside from our development clinic and obvious pulmonary and peds appointments).... but at the same time I'm not a fan of having my home invaded by a ton of people.

Honestly, I think I'd be okay with just 10 hours or so of nursing at night so my fiance and I can sleep and get some peaceful rest and then a handful of hours throughout the week so I can run to the store or something. Aside from that I just want quality one-on-one time with our little girl! I don't want to have a nurse here at all hours of the day interrupting our lives.

How did you all manage your nursing hours?

[bryantem]

I haven't gotten my home nursing yet as we have to apply for long-term care, but I can tell you that it will be welcome when it comes.
________
Landy

[ericnrosesmom]

Honestly I don't think we could survive without our nurses. My hubby works until 4 or 5 most days (sometimes later) and on the days I don't have a nurse I feel like I'm about to lose my mind. I have to give Eric his meds and tube feeds on time, feed Rose, keep both of their diapers changed, track down hme's he's taken off and thrown (see my post on that topic) prevent either of them from getting into things they shouldn't, and have something ready for dinner when Daddy comes home. You might be able to manage for a few days or even a few weeks on your own, but you'll eventually burn out and that won't do anyone any good. My advice is take all the help you can get!!!!!!!!

[libby1205]

well we havent been home yet so its hard for me to say but what I have heard is that you dont realize how tough it may be when you get home and its hard to get more hours if you realize you need them. But its better to have and not need and then wean down. This is our first baby and I've had to share her for six months and the last thing I wanted was to have to continue to do so in my own home but I think I'd rather have someone there to help then feel overwhelmed and not truly get to enjoy this time with her. I want them to take some of the medical burden and be a qualified help so I can focus more on being a mommy. But like I said I havent been home yet and the last thing you are is crazy for wanting to be alone with your new baby! Its what us nicu moms yearn for!

[Gretchen(Celia's mom)]

Several things,
Often the amount of hours you get approved for is not the actual amount of hours that the company can staff.
It IS harder to go up in hours than to go down in hours. On paper, be approved for all the hours you can, use what you want, you can always adjust as time goes on and things change.
It does seem like you are being invaded when you first come home, BUT if you consider that it is best for the baby to have PT, OT, and ST come to them to "work" on them then it is dealable. Usually those ppl are only in your home a couple times a week for an hour or less.

[faywrayy]

I thought the same thing and I was coming home to 3 school age kids, with a trached and tube fed baby. It would have been nearly impossible if I'd done it alone. Somedays I'd think if it had only been Kate I could have done it, but I still would have burnt out eventually.

The most glaring difference between a technology dependent baby, and a typical baby (other than the obvious!) is the schedule. With a typical infant, you can kind of make your own schedule. With a trached and tube fed baby, you can't. They come with a schedule intact and though you can surely revise it, you can't let it go entirely. Kate was tube fed every 3 hours, and was on 3 reflux meds around the clock. The first few weeks at home, when our nursing agency couldn't staff us properly (Kate was approved for 16hrs/day) my dh and I would take turns overnight, and it was a constant schedule of meds, feed, meds, feed. I could sleep, but I was up and down all night long. I was exhausted beyond belief.

I very quickly realized that I would never wean our nursing hours down and I didn't. Towards the very end I was considering it (thinking Kate would stay trached longer than she actually did), but only because we'd weaned her from the tube feeding and the reflux meds and she slept through the night. And ultimately ended up as a pretty normal toddler. But for the first year or so, I would have DIED without nursing.

Good luck!

[cariaad]

I know I'm in the minority, but we did it all without home nursing. At the time Allison came home, my DH quit his job to care for her during the day while I worked (my income was better). I worked 10 hour days and probably got a total of 4 hours sleep per day, but we all survived and soon got into a routine that worked for us. About 9 months into it I needed to have a break, so DH found a job and I became the stay at home. I think we were very fortunate that Allison "cooperated" by being fairly stable and also the fact that we weren't still "kids" ourselves (I was 37 and Mike 30) so we'd had plenty of playtime and were ready for some serious family building. Her first 5 years, DH and I traded off every year or so. Not great looking on your resume, but it made it all come together for us. Whoever was the stay at home was also usually taking some classes, which helped save our sanity a bit Anyway, as everyone else has said, what you get approved and what you get staffed are probably apples and oranges anyway so take your time. Deb

[Ainsley's Mom]

I think you'll find you need more help than you thought you did. I didn't want any nursing but came home with 10 hour nights and then realized I needed a nurse at night or the lack of sleep would have made the whole situation unbearable as I got used to the demands of having a trach ng tube dependant baby. (Plus two other young children) Fast forward a year and we eliminated the night nursing. We needed some day nursing but our insurance wouldn't provide it. Then later in the year we got a day nurse for 2 10 hour day shifts though the Medicaid waiver program in our state for children with trachs and intense medical needs. That works pretty well for us.

We did all the therapy in our home too. That part is easy and feels like less of an intrusion.

I don't want to scare you, but I think you should wait and see once you are home because I think it's a whole lot harder than it seems when you are in the hospital. Like other people have said it is much easier to cut back your nursing than it is to get more.

That being said, it depends very much on the care your child needs, your family situation and your personality. It will be much easier to figure out what's right for you after you are home.

[saywhatyouwill]

okay, it IS easy for me to say (since we don't have as many thing to do perhaps as a lot of people - no vent etc) but we coped okay without nursing. i posted on here a while ago worrying that we weren't watching emily enough and wondering why people had nursing and it turns out that we should actually have got overnight nursing when she was discharged. who knew?!! (shocking really that our hospital are so useless in organising these things).

emily didn't have a gtube, only an NG. she was fed every 3 hours and vomited every feed. she was on 9 medicines. as angela says, the medical stuff imposes it's own schedule and i did find that hard because it was so limiting. a nurse to be honest wouldn't have helped that - i wanted to take emily out to the park etc but couldn't because of her hour long feeds + vomiting. yeah with a nurse i could have gone out myself but that wasn't what got me down!

i should also say that i was still on maternity leave when emily came home so i had all day to feel tired etc without external pressures of work. since i went back to work my husband and i both work 4 days per week split out so we both look after emily - the only downside is that her dad doesn't get home until 7pm 3 nights a week. she's no longer tube fed so we get okay sleep - we are up to suction minimum twice per night if all is well.

i didn't know nursing was an option and we just accepted what had to be done. like i say, we had it quite easy, but i don't think you should feel you have to take nursing because you wont' cope without it.

we also got all our therapy at home which was great.

i know this off-topic slightly but in my case i don't think a nurse at home would have done me well mentally. i was SO scared at first and because of that really needed to just get on with things myself and get my own life back.

[kshell]

There have been lots of posting about nursing lately. I would suggest taking everything you can get in the beginning and go from there. It is easier to cut back than saying I need more. Natalie is still on a vent (but starting to sprinting) Hubby works full time, I work part time, and we have a 4 year old. For us, it would be really difficult without nursing. Good luck with your decision.

Karen