Author Topic: Any advice? A difficult dilemma with a newborn  (Read 8293 times)

whytehare

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Any advice? A difficult dilemma with a newborn
« on: May 17, 2016, 07:51:02 AM »
Here's the TLDR version:  I'm going to be working at a job that is a 2-hr drive away from a hospital where my very sick infant son will be located for some time.  a) Should my family (wife and 3 daughters) live close to where I will be working - and then making about twice a-week visits to our son in the hospital?  Or b) should we live in between the hospital and work, making daily hospital visits possible for my wife?  Option 'a' would require less driving and would allow some semblance of permanence, but it comes at a cost of being located further from our son.  Option 'b' would allow us to have something of a consistent routine including daily hospital visits, but would require upwards of 20 hours of driving in a week between my wife and myself.

Please offer any advice, especially if you have ever been in a similar situation.  Advice such as what to drive, how to maximize time, etc... would be appreciated.  I am looking into whether I can do parts of my job remotely, but it is not likely.  For a longer version, feel free to continue reading....


-Long Version-
My son was born at 24 weeks gestation due to some complications in the pregnancy.  His road was rocky, but okay, until about 3 weeks ago when he took a strong turn for the worse and we came to understand he suffers from pulmonary hypertension.  This condition is often fatal, as it commonly leads to heart failure.  But there is still some hope of a full recovery.  Right now, everything is on edge.
I finished grad school a few years ago, accepted a teaching position at a small college in Iowa 3 years ago, and life has been good.  I never imagined myself teaching when I started school, but it has become something I'm passionate about, to my own surprise.  I've been biking to school and then work for about 10 years and can't imagine a better way to get around.  I think I love finding ways of living efficiently about as much as MMM does.  We don't make much money, but as a family of five I don't think we spend more than 30k a year - including a house mortgage payment.  And yet we have so many awesome opportunities that we feel absurdly rich.  But in the last few months, the arrival of our son has made it clear that life has a lesson or two to teach us.
A few months ago, we realized that it would be a good idea to move to a different part of the country, closer to extended family (both sets of grandparents, multiple siblings, etc..).  I found, was offered, and accepted a job at a great small college.  Our house just sold and we are planning to move in the next couple of months.  A few weeks ago, we thought our son would be home soon, and we would buy a home in the town where the college is found.  But then everything got flushed down the toilet, our son started doing very badly, and we found that he has pulmonary hypertension (high blood pressure in the lung part of the circulatory system due to resistance to flow from his crappy lungs).  This diagnosis means that he will be in a hospital 2-hr drive from where I work.
 We could live close to my sister, who is about 40 min. drive from the hospital, making a daily visit possible.  This would make a super-hellish drive for me to get to work.  And I don't really want to be apart from my three young girls for extended periods either.  Or we could live by where I work, making weekend trips to visit my son, and my wife could make another mid-week trip as well.  I can provide more details for anyone that has the time to respond.  How are we going to continue to live an efficient life with this sorts of constraints?  How will I not be driven crazy with 1000's of miles of commuting?

rubybeth

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Re: Any advice? A difficult dilemma with a newborn
« Reply #1 on: May 17, 2016, 07:57:31 AM »
I'm so sorry about your son's health issues. Would it be feasible to rent an apartment for you near work, and a place closer to the hospital for your family? Or vice versa? I realize that renting two places is probably not the best financially, but maybe in terms of frequency of driving, it could be. I have a family member who worked about 2 hours from where his family lived, and he rented a bedroom in a co-worker's place where he could crash mid-week, and then travel home for the weekends or whenever family stuff was happening (kid's piano recital, etc.). It wasn't awesome, but it worked and let him rest. Ideally, you or your wife would have a good amount of time with your son for bonding. How long will he be hospitalized? Will he always need to be near a hospital even after he's recovered? This has got to be incredibly stressful for the whole family, so as much as you can do to support each other (especially you and your wife), the better; I wish you the best.

pbkmaine

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Re: Any advice? A difficult dilemma with a newborn
« Reply #2 on: May 17, 2016, 08:03:59 AM »
First, see if the hospital has rooms available for families of sick children at low or no cost.

catccc

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Re: Any advice? A difficult dilemma with a newborn
« Reply #3 on: May 17, 2016, 08:27:41 AM »
I'm so sorry your son is having complications, I hope things look better soon.  I would consider all housing at this time on a very temporary basis- hopefully in time your son will come home, at which point you can just move closer to work.  I think whatever you decide needs to be able to accommodate your wife's daily visits to your son, since it seems he is in such need of support to get better.  Unfortunately, I think this means you need to suck it up and make the drive until he is better and out of the hospital.  Yes, commuting sucks, but it's not just time and gas on the line here, your son may be depending on your wife's presence to get better.  I don't mean to sound dramatic, but I'm a big believer in "babies need their moms big time."  Almost in a kooky crunchy kind of way...

SomedayStache

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Re: Any advice? A difficult dilemma with a newborn
« Reply #4 on: May 17, 2016, 08:34:38 AM »
I am so sorry for your difficulties.

I don't think that now is the time to be worried about living efficiently.  (Of course make efficient choices when possible - but this is an emergency situation and there are more important things happening for you)

Is this a (hopefully) temporary situation that might exist for 6 months to a year?  Or will your son always need to be at the hospital?

What does your wife want?

My gut feeling as a mom is that I would want to be close to my baby.  Since you work in a college town is it possible to pursue temporary lodging for just yourself while finding a rental apartment near the hospital for your family?  Maybe there are other professors who rent rooms to visiting professors? 

I wouldn't want to split up my family permanently, but it almost seems necessary for your (I hope its temporary) situation.

Ceridwen

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Re: Any advice? A difficult dilemma with a newborn
« Reply #5 on: May 17, 2016, 08:36:10 AM »
I'm so sorry to hear about your son.  My son was in the NICU for 3 weeks with very serious respiratory and neurological complications (made a full recovery), and I remember thinking about how much harder this would be for us if he wasn't our first child and if we lived far from the hospital.

I think you need to put aside financial worries (within reason) for the next few months while you focus on your son.  For me, the priorities would be:

1) Allowing your wife to be in the hospital as much as possible
2) Getting your older kids as much family time/least amount of disruption in their lives as possible
and a distant 3) Making your commute as reasonable as possible

Good luck.  I hope this is all very temporary and your son makes a full recovery.

little_brown_dog

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Re: Any advice? A difficult dilemma with a newborn
« Reply #6 on: May 17, 2016, 08:37:26 AM »
I am so sorry. This is a hard decision.

I used to work at a hospital and saw parents staying with their critically ill kids a lot. Many of them practically lived at the hospital, while others could only visit occasionally due to their work and family responsibilities. It is never easy, and either way you will be pulled in a million directions.

Only you can know how to weigh this decision, but I do know that many parents prefer to see their sick/dying children as much as possible. Sometimes being there and sitting next to them is all you can do, so these parents put everything on the line to do it. If you suspect that you or your wife will be seriously emotionally distressed at the thought of not seeing him as much, you should do everything in your power to do what will give you closure should the worst come to pass. I cannot know what I would do as I have never been in your shoes, but as a mom, I think I would want to see my ill baby every day if at all possible especially if the child was possibly terminal.

Given your son's condition and premature status, I wouldn't worry too much about the other kids getting less attention for the time being. They have their whole lives to get time with you. A few weeks or even a couple months of mom and dad being around less probably won't matter much to them in the long run, but your time now with your son may have lasting effects for you and your wife. Experiencing a life threatening illness or death of a child is hell on a marriage. The last thing you want while going through this is for your wife to interpret the situation as being forced to choose between seeing her sick baby and giving you a better commute. What are her feelings? What does she want?
« Last Edit: May 17, 2016, 08:52:32 AM by little_brown_dog »

I'm a red panda

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Re: Any advice? A difficult dilemma with a newborn
« Reply #7 on: May 17, 2016, 08:42:06 AM »
I'm very sorry for what your family is going through. I hope your son grows healthy and strong!

I would recommend renting an apartment near the hospital for the short term, I wouldn't make long term housing decisions based on a NICU stay.  (Or see what kind of availability Ronald McDonald house has; or ask if you can use your sister as a short-term "base").  You could even rent two low cost apartments, one near the university and one near the NICU, and use both. It might not be "mustachian"- but you have to figure out how to just make life work right now.

I would also try to see if your hospital will allow designated visitors when Mom/Dad are not there. When my sister's twins were in the NICU, she could not get permission for grandparents to visit, if she was not there- only the hospital approved rockers could kangaroo care with the babies when she wasn't there, but some hospitals let others be with the baby if they are approved. That way even if you can't be there, someone else could be.

swick

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Re: Any advice? A difficult dilemma with a newborn
« Reply #8 on: May 17, 2016, 08:44:39 AM »
I'm sorry you are going through this :(

There might be an option for temporary housing supplied by Ronald McDonald House, Shriner's, or another local charity.

Is there any chance you have flexibility at work with summer being out? Maybe take some stratigic paternity leave that would allow you to cut down on the driving?

The idea of taking two temporary living spaces is a good one. Lots of people are willing to rent a room, especially in a college town.

Do you have an external support network - church, community group, anyone else you can call upon for some help?

The expenses and drving sucks, but  being as avalible as you can for your son should be the priority, I think.

Take care

I'm a red panda

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Re: Any advice? A difficult dilemma with a newborn
« Reply #9 on: May 17, 2016, 08:50:49 AM »
Lots of people are willing to rent a room, especially in a college town.

This is a good idea.

Long term or short term.
There are lots of cheap AirBnB options near our local children's hospitals- except on game days. Then they get phenomenally expensive, because the hospital is right next to the stadium!

nobody123

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Re: Any advice? A difficult dilemma with a newborn
« Reply #10 on: May 17, 2016, 08:59:42 AM »
That's a tough hand to be dealt.  Best wishes to you and your family.

Personally, I agree with the others and do what it takes to let mom visit your baby every day and be able to get to the hospital in a few minutes if necessary.  I would consider the arrangements temporary and deal with the inconvenient commute until your son comes home from the hospital.  Maybe spend the $50 on a no-tell-motel once a week if the commute seems unbearable that day.

Are the 3 girls school aged?  I wouldn't want to yank them out of school and away from friends so close to the end of the year if it could be avoided. 

ShoulderThingThatGoesUp

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Re: Any advice? A difficult dilemma with a newborn
« Reply #11 on: May 17, 2016, 09:04:18 AM »
The NICU is a rough place and I was amazed at the fortitude of the parents whose children were in there for months. I think you don't worry about money within reason while this is going on. Do what will keep everybody going.

Can grandparents spend some time with the other kids while this is happening?

Dicey

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Re: Any advice? A difficult dilemma with a newborn
« Reply #12 on: May 17, 2016, 09:18:44 AM »
Plant family as close to the hospital as possible. You find the cheapest lodgings possible close to work. If nobody's commuting on a daily basis, it will make the back-and-forth trips easier. Seek out Ronald McDonald housing or similar through hospital.

Your son needs more contact with family than you do right now. You understandibly want it, but for him it could be vital to his very existence. His needs outweigh yours right now. Ask your wife what she wants and do that. Do everything in your power to support her needs right now. Do not make her shuttle (i.e. chose) between her sick baby and the rest of her family.

Harness the power of social media to create a support network of friends and family. It's surprising what can happen when you put the word out. Ask for help with watching the girls while mom's at the hospital. Ask, pray and breathe. You can get through this. Hopefully someday you will reflect upon this experience as nothing more than a rough patch in your happy family's life.

Noahjoe

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Re: Any advice? A difficult dilemma with a newborn
« Reply #13 on: May 17, 2016, 09:38:31 AM »
Other people have alluded to the programs like Ronald McDonald houses/shriners and such. Hospitals, particularly ones with good peds care handle situations like this all the time. Even though it may be tangential to your son's care, you could contact the hospital's charitable arm to determine what kind of programs they have.

If you wanted to share the organizations name I'm sure the Mustachian collective could pitch in and help figure this one out with you.

garion

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Re: Any advice? A difficult dilemma with a newborn
« Reply #14 on: May 17, 2016, 09:44:52 AM »
I might be missing something, but is there a reason that your girls need to stay with your wife? You and the girls could get settled into the college town while your wife stays near the hospital, giving you time with your girls, your girls a sense of permanence, and your wife more time to focus on the baby.

mm1970

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Re: Any advice? A difficult dilemma with a newborn
« Reply #15 on: May 17, 2016, 09:58:53 AM »
I would opt for whatever allows your wife to visit your son daily.  Whether that be in-between, or a combo of an apt near the hospital and you renting a room near the college. 

Wishing you the best of luck.

whytehare

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Re: Any advice? A difficult dilemma with a newborn
« Reply #16 on: May 17, 2016, 09:59:16 AM »
Thanks to those who have chimed in already - we have definitely thought about Ronald Mcdonald house as well as me sleeping close to work anywhere from 2-4 nights a week.  If the department would stand for it, I'd even see if I could put up a cot in the office and then shower at the rec center.  About 40 min. from the hospital is where 3 different siblings live, so we've thought about that in order to have consistent baby-sitting for the girls.

I realized that my first post sounded more narcissistic than I intended - much of my concern with driving a lot is not that I'm just whiny (although I can be), it is that I have always been very family-centered, and I hate to think of driving instead of doing what I love -spending awesome quality time with my wife and kids.  Of course I would drive for 18 hours each day if it meant that my family would be best-served.  Hopefully I can find a good balance where I don't inconvenience my wife, but still have some time to help the other kids through this rough patch.  I am also coming to grips with the fact that my time with my son is going to be severely limited.

In terms of our girls' long-term well-being, we think several options could work - living where I'll work, living at a rented house in between, or living with extended family somewhere close by.  It would be great to maximize time with them, but every decision comes with a cost, and we are certainly hyper-focused on our son right now.  Much of what makes this hard is we have no idea what the future holds for our son.  He could only make it a few more weeks or months, or he could live a long life.  In the best case, he is probably in a hospital for the better part of an additional year.  Beyond that, we don't really have any good guesses how much support he would need.  So plans will change.

FYI, the girls are 6, 4 and 2.  We will be figuring this out sometime between now and July, so the 6 year old will finish her first grade school year.  The hospital we will have our son at is Primary Children's Hospital in Salt Lake City Utah, and I'll be working in Ephraim Utah.  Thanks again for the kind words and helpful thoughts.

lizzzi

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Re: Any advice? A difficult dilemma with a newborn
« Reply #17 on: May 17, 2016, 10:03:13 AM »
Yes, either rent a room near the hospital so your wife can see the baby every day and you take the girls into a bare-bones, temporary rental apartment near your job; or the reverse: you get a room near your job, and the wife and girls get a no-frills temporary apartment near the baby. This is not the normal situation--it is one of those horrible, life-threatening, emergency dire situations that you wouldn't wish on anybody--and you need to be operating in crisis mode, not MMM mode. One of you must see the baby every day, it is crucial. It isn't necessarily a bad thing for your other children to see how their family steps up to the plate and functions during a catastrophic situation. Other good suggestions up above, so I won't repeat wise counsel others have given.

I'm a red panda

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Re: Any advice? A difficult dilemma with a newborn
« Reply #18 on: May 17, 2016, 10:03:48 AM »

I realized that my first post sounded more narcissistic than I intended

When you go through situations like this, this is totally allowed.

ShoulderThingThatGoesUp

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Re: Any advice? A difficult dilemma with a newborn
« Reply #19 on: May 17, 2016, 10:52:15 AM »

I realized that my first post sounded more narcissistic than I intended

When you go through situations like this, this is totally allowed.

Yes. While the doctors and nurses are doing their jobs, you have your regular adult obligations, other kids, supporting your spouse in this trying time, and connecting with your newborn. You have to think of your own mental health.

When my daughter was in the NICU my wife and I went out to dinner down the road. It got us out of the hospital. It was worth it even if it felt ridiculous.

ohana

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Re: Any advice? A difficult dilemma with a newborn
« Reply #20 on: May 17, 2016, 11:09:15 AM »
I work in academia.  Most colleges have an E-board where you can post classified or announcements.  I suggest reaching out the the college community to see if there is a room for rent by the month -- and stay near campus, just you, M-Th nights.  Then your wife and kids can be very close to the hospital and family.  It will suck being apart but will be best for the kids I bet.

Good luck.

Noodle

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Re: Any advice? A difficult dilemma with a newborn
« Reply #21 on: May 17, 2016, 11:35:01 AM »
I am sorry to hear about your son and your family's challenges.

I am going to take a little different perspective from some posters and suggest prioritizing getting your girls into a stable situation as soon as possible, that also allows a parent as much time with your son as possible. If your older children were elementary age, I would agree that learning to be flexible and how to step up for family would be appropriate expectations--but your girls are so little, especially the two younger who probably can't even articulate all their concerns and stresses except by acting out. Of course you know all the personalities involved best, but just moving would be a big change for a toddler, and you also have the extra challenges of commutes to hospital and work plus parents distracted with your unwell child. The happier and calmer the older kids are, which can only be helped by getting into a regular routine, the more brain space you both will have for the littlest. So whether that is Mom in a rented room near the hospital, and Dad in the college town with the girls and a regular sitter or a family member who drives up for daycare, or everyone near your siblings so the girls can go off to Auntie and Uncle's house every day while Mom goes to the hospital and Dad goes to work, or staying with Grandma and Grandpa for a few months, it depends on what will get you "normalized" quickest.

2bor!2b

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Re: Any advice? A difficult dilemma with a newborn
« Reply #22 on: May 17, 2016, 12:31:35 PM »
I don't have any word of advice but I pray and hope that your son gets better soon.

formerlydivorcedmom

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Re: Any advice? A difficult dilemma with a newborn
« Reply #23 on: May 17, 2016, 12:32:30 PM »
My sincere sympathies - this is an awful situation for all of you and I hope that your baby gets stronger by the day.

You need to go to work.  Your wife (or some family member) needs to see the baby every day.  The girls need some stability in routine.

My advice is to live in the middle (and hopefully this is close to your family).  An hour drive each way is not impossible.  It's not fun, but it isn't awful either.

When my baby was in the NICU, the hospital was an hour from my house.  My current job is now an hour from my house.  Not fun, but doable, and I still get family time.

Are you able to tailor your course schedule and office hours so you only have to be at the college 2 or 3 days a week?

bogart

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Re: Any advice? A difficult dilemma with a newborn
« Reply #24 on: May 17, 2016, 12:37:00 PM »
I'm so sorry to hear about your son's health problems and hope he will recover fully and that his recovery will be as speedy as possible. 

I'm with Noodle on the thought that your girls are too little to "step up" and that prioritizing stability and normalcy / smooth transitions for them is also (unfortunately) a priority.  Unfortunately because, on top of your son's challenges and your daughters', you and your wife also of course need to prioritize your own well-being so that you can effectively take care of everyone else depending on you -- and that's a lot.  So whatever resources you have access to, whether that's savings, family, other assistance (e.g. Ronald McDonald House), church community -- whatever -- use 'em.

In terms of location and commute -- do you have tenure?  I surmise from your longevity that you likely do, and particularly if so I'd advocate putting teaching on auto-pilot as much as possible.  See above re:  priorities.  And regardless -- sit down and have a frank talk with your department chair.  Teach as few preps as possible.  Could you get a TA (even an undergrad TA, if yours is a strictly undergrad institution and even if just to help with administrative tasks?)?  Etc., etc. 

We weren't parenting small kids at the time, so a very different situation and I don't mean to downplay that, but for 5 years I commuted away from my DH to 2 different teaching jobs -- one was a 2.5 hour drive away and one a 10-hour drive.  For each, my department provided me (again -- talk with your chair) with a Tu/Th teaching schedule, so I didn't always have to be on campus Mondays or Fridays (though I often was and often needed to be for committee meetings and such -- but not every single week.  It matters.).  For the closer job, I'd drive down Tuesday mornings (leaving about 5 a.m.), teach (and work) 9- whenever, work all day on campus Weds., teach until about 3 on Thursday, and drive home.  It was fine.  I listened to a lot of (fun) books on tape (yes, this was back when tapes were a thing) during the drive, and stayed in a friend's spare bedroom 2 nights/week.  And at least at the schools I've taught at, in terms of requirements/expectation that one be on-site, a teaching job is basically two 14-week commitments which, when looked at from that perspective aren't quite as overwhelming as an ordinary F/T job.

And yes, if you're comfortable doing so, I'd ask your colleagues if anyone has a spare bedroom they'd be willing to let you use.  Or if you are a member of a faith community (or any other community), I'd put out a query in that context.

Again, good luck to your son and your whole family.  And take care.

pbkmaine

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Re: Any advice? A difficult dilemma with a newborn
« Reply #25 on: May 17, 2016, 12:45:41 PM »
I would second all people have said about putting the word out in your new college community. In my experience, people tend to be wonderfully welcoming and helpful in situations like this.

Sibley

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Re: Any advice? A difficult dilemma with a newborn
« Reply #26 on: May 17, 2016, 12:52:51 PM »
Just chiming in to remind you that young children are capable of handling a lot more than people give them credit for. Explain to your girls (in age appropriate terms) what's happening, and that mommy and daddy will be doing xyz but that you love them and they will be taken care of and that it won't be this way forever. Answer their questions as best you can. Kids can get through a LOT if they know that they're safe and loved. Once life calms down and a new routine is established, they'll adjust.

Also, ask for help! People will come out of the woodwork if you ask for specific things. I got a SOS from a friend with a new baby and just needed a break. I went to her house and took the baby for 2 hours. Need a meal? Need someone to pick up a kid? Help with laundry? Ask.

SKL-HOU

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Re: Any advice? A difficult dilemma with a newborn
« Reply #27 on: May 17, 2016, 03:25:01 PM »
My son was born at 25 weeks. He was in the NICU for 98 days at St. Louis Children's Hospital. We lived 10 minutes from the hospital. When I went back to work (while he was still in the NICU), the hospital was on my way to work, so 10 mins to hospital, another 10 mins to work. Even with that I had a lot of anxiety, and it always got worse on that short drive to the hospital. Also, kangaroo care is very beneficial to the baby. I recommend as much of the family as close to the hospital as possible. Make use of Ronald McDonald house, if there is one. It is there for situations like yours.

I hope your son gets better soon. I know all too well the ups-downs of the NICU.

ekimatuan

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Re: Any advice? A difficult dilemma with a newborn
« Reply #28 on: May 17, 2016, 04:13:23 PM »
I am in Mapleton Utah, about an hour from Primary Childrens and 1.5 from Snow College. I have some property on the mountain near Snow, so I know the drive down 89 (or I-15) pretty well.

In my opinion, you should keep your wife and girls as close to the hospital as possible. There are lots of cheap places in Ephraim, Fairview, Mt. Pleasant and Manti. The college may actually be able to provide you with housing on a temporary basis. It surely wouldn't hurt to ask ad given what I know about Snow College, I don't think they'd refuse you in this scenario.

If you need a local support system, feel free to reach out, I'd be happy to help where I can.

Stashing Swiss-style

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Re: Any advice? A difficult dilemma with a newborn
« Reply #29 on: May 18, 2016, 05:17:49 AM »
Stay close to your son and your daughters' brother - you all need to be able to see him whenever you can.  I cannot imagine the horror of living through this and my heart goes out to all of you.  Your daughters should be part of their brother's life - the sibling bond is very powerful - even if this is for only very short visits.  You will get through this and I hope your son will come home soon.

muckety_muck

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Re: Any advice? A difficult dilemma with a newborn
« Reply #30 on: May 18, 2016, 05:52:47 AM »
Is there a Ronald McDonald house or something similar near the hospital? If you are semi low-income, there should be some resources through the social workers at the hospital to help you. Agreed that you need to have wife/kids near the hospital, in the grand scheme of things - you don't want them to miss something important in his development/healing. Have no regrets in this... it's a delicate medical situation and a temporary expensive lifestyle may provide extra peace of mind.  How long will the baby be in the hospital?

seathink

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Re: Any advice? A difficult dilemma with a newborn
« Reply #31 on: May 18, 2016, 04:52:39 PM »
Just chiming in to remind you that young children are capable of handling a lot more than people give them credit for. Explain to your girls (in age appropriate terms) what's happening, and that mommy and daddy will be doing xyz but that you love them and they will be taken care of and that it won't be this way forever. Answer their questions as best you can. Kids can get through a LOT if they know that they're safe and loved. Once life calms down and a new routine is established, they'll adjust.

I agree. Regarding your daughters (esp. the younger two) I will say that when I was 3 and 1/2 my mom was in really bad car rec and was hospitalized/rehabbed an hour away from our Northern Minnesota hometown for six months. Looking back now, I don't remember any pain at mom and dad being gone, only the time with the babysitter, and our first visit to my mom in the hospital. My siblings who were younger don't remember anything. So, yeah, from the perspective of a 34 year old looking back to her toddler times, I think your daughters will be able to adjust. They love you and their brother.

green daisy

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Re: Any advice? A difficult dilemma with a newborn
« Reply #32 on: May 19, 2016, 04:48:23 PM »
I haven't read the whole thread yet, but I wanted to chime in to say that my nephew was diagnosed as an infant with pulmonary hypertension.  It was a rough road with some hospitalizations, lots of ER visits, and many tests and scary moments.  They initially thought he wouldn't live through the night, once that passed, they said that the best case scenario would be living until teenage years, then they said he may possibly make it to adulthood but would probably not live to be an old man.  He is 4 years old now and has recently been taken off his medication for it.  So far, so good.  It's been about 4 months.  Only time will tell for certain, but they believe he is possibly fully cured!  It is one area of medicine where the treatment is fairly new (viagra of all things) and they don't have enough long term studies to really make accurate predictions for prognosis.  I just wanted to share with you a success story. 
« Last Edit: May 19, 2016, 05:27:19 PM by green daisy »

Zamboni

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Re: Any advice? A difficult dilemma with a newborn
« Reply #33 on: May 19, 2016, 05:54:22 PM »
My heart goes out to you.

If you haven't already done so, please tell your department chair what is happening. Are you teaching summer classes? If so, can you see what help can be offered on that? Perhaps there is a graduate student nearby who would like to team teach it and cover some days? If you are not currently teaching, then please consider taking the summer to be with your son and daughters. Research and committees and everything else will still be there come Fall. I know this must feel like an awkward communication since you just started a new job, but if I was Chair and a brand new hire came to me and told me about this, he would be on paid leave this summer at a minimum.

Colleges can handle this. I've had colleagues have massive health events like strokes, car accidents, major concussions right in the middle of the term. Their classes get covered and no one holds it against them later. You need to communicate what is happening and ask what they can do at work to allow you the time you need in the difficult situation you are facing. Please ask.

good luck!

bridget

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Re: Any advice? A difficult dilemma with a newborn
« Reply #34 on: May 19, 2016, 06:31:28 PM »
Thanks to those who have chimed in already - we have definitely thought about Ronald Mcdonald house as well as me sleeping close to work anywhere from 2-4 nights a week.  If the department would stand for it, I'd even see if I could put up a cot in the office and then shower at the rec center.  About 40 min. from the hospital is where 3 different siblings live, so we've thought about that in order to have consistent baby-sitting for the girls.

I realized that my first post sounded more narcissistic than I intended - much of my concern with driving a lot is not that I'm just whiny (although I can be), it is that I have always been very family-centered, and I hate to think of driving instead of doing what I love -spending awesome quality time with my wife and kids.  Of course I would drive for 18 hours each day if it meant that my family would be best-served.  Hopefully I can find a good balance where I don't inconvenience my wife, but still have some time to help the other kids through this rough patch.  I am also coming to grips with the fact that my time with my son is going to be severely limited.

In terms of our girls' long-term well-being, we think several options could work - living where I'll work, living at a rented house in between, or living with extended family somewhere close by.  It would be great to maximize time with them, but every decision comes with a cost, and we are certainly hyper-focused on our son right now.  Much of what makes this hard is we have no idea what the future holds for our son.  He could only make it a few more weeks or months, or he could live a long life.  In the best case, he is probably in a hospital for the better part of an additional year.  Beyond that, we don't really have any good guesses how much support he would need.  So plans will change.

FYI, the girls are 6, 4 and 2.  We will be figuring this out sometime between now and July, so the 6 year old will finish her first grade school year.  The hospital we will have our son at is Primary Children's Hospital in Salt Lake City Utah, and I'll be working in Ephraim Utah.  Thanks again for the kind words and helpful thoughts.

I'm so sorry this is happening. I don't know if I have much more advice to give on the location front, but I may have bits and pieces of location-specific advice, as I'm from Salt Lake City and spent most childhood summers in Sanpete County. 1) if this situation continues into the winter months, please don't try to commute from Ephraim on a nightly basis. The highway between Sanpete County and Spanish Fork is one of the deadliest in the country, especially when it's dark and snowy (recent construction projects have made it less dangerous, but still). I personally know more than one person who has died in that canyon in car crashes, and my sister survived a bad one. Save your commute for the weekends.

2) Having commuted from BYU to downtown SLC for three years, even that is a long drive that will get to a person. If your wife is doing this daily, this will really wear on her. The FrontRunner extension to Utah county made my life more bearable because I could work on the train (maybe your wife could sleep?), but she may prioritize her time and prefer to drive. 

3) Any chance you or your extended family are LDS? I'm assuming since they are 40 minutes from Primary's, your siblings live in Utah county. I'm not Mormon anymore, and have plenty to criticize the community about, but gosh darnit they are excellent at stepping up and providing support during times like this. If you are LDS, lean on your ward; meals, rides to the hospital for your wife, babysitting for your older kids - people will be happy to help. If you're not, the neighborly-ness extends into the broader culture; reach out to your neighbors (and have your siblings reach out to their networks). I recently moved to California, and wish I could be there to help you out.

4) From what I know about Snow (my sister went there), the best part of it is that it has a truly warm and family-like culture. Talk to your department head - I bet you will get an awful lot of accommodation. Not knowing what field you're in, could you schedule all classes for Tues/Thurs, all offices for Wednesday, and take 5-day weekends (working remotely on writing/research) in SLC?

MrsPete

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Re: Any advice? A difficult dilemma with a newborn
« Reply #35 on: May 19, 2016, 07:20:59 PM »
First, see if the hospital has rooms available for families of sick children at low or no cost.
Is a Ronald McDonald house anywhere nearby?  They provide a great service for parents of sick children. 

Goldielocks

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Re: Any advice? A difficult dilemma with a newborn
« Reply #36 on: May 19, 2016, 09:11:09 PM »
I might be missing something, but is there a reason that your girls need to stay with your wife? You and the girls could get settled into the college town while your wife stays near the hospital, giving you time with your girls, your girls a sense of permanence, and your wife more time to focus on the baby.

+1

And your girls may get help from your extended family, while mom deals with the stress / distraction of the hospital / baby.

My friend went through this for 5 months, and they lived 4 hrs from hospital.  It was not great, but she lived at the hospital (in the room sleeping on the couch), then at the Ronald MacDonald house, and home every weekend.  Dad would visit baby and mom about once a month for a day or two at the hospital.

It's a tough situation.  Good Luck.

Bimmy

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Re: Any advice? A difficult dilemma with a newborn
« Reply #37 on: May 24, 2016, 10:48:41 PM »
First of all- our prayers to you. This is a tough, tough situation. Second- I would echo the idea that perhaps you could max out your FMLA leave? I believe it was several months the last time I used it. It was unpaid, but being home with family when needed made it worth it.

Please receive this is in the way it was meant- the hospital will (eventually) send you a massive bill. It is worth every penny. That baby needs care, and the right answer is to get it for him. I worked at a hospital for quite a bit. I would encourage you to call them and let them know you cant afford it (no matter what the # is). Many, many times a hospital will drastically reduce the amount due- if you ask. Dont spend much time thinking about this now, but I just wanted to put that out there. Never pay asking price for a big hospital bill. A Catholic/Christian/non-profit hospital will also probably have a dedicated team to help you manage the bills. AGAIN- baby's needs are more important than dollars. I pray everything goes well.

Primm

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Re: Any advice? A difficult dilemma with a newborn
« Reply #38 on: May 25, 2016, 01:12:32 AM »
Find out also if the hospital has a hospital school. These aren't only for inpatients, they are for the siblings of inpatients. They tend to be very creative around programming (assuming kids will be missing regularly for example) but they usually have amazing teachers and a very good student to teacher ratio. If something like this is available it may mean your 6 year old could also stay with your wife near the baby (whether or not the rest of the family are there) and help to add some normalcy to a totally abnormal situation.

Best of luck. I work in a NICU in a tertiary hospital, but unfortunately not in the same country, and while we have amazing resources available I'm not sure how they translate to US hospitals. I see others have already mentioned Ronald McDonald house, even if there is a waiting list for accommodation (and there normally is) this is a very valid option for at least your wife.

I tend to fall on the side of doing what's best for you as parents and for your son. Your girls are small and resilient enough that they won't have long-term repercussions from being moved from pillar to post like they would if they were older. PPHN is a cruel disease, and my heartstrings wrench every time I see a mum or dad sitting and watching their child struggle to breathe. Take care of you and your wife first, and the children will be fine.

ShoulderThingThatGoesUp

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Re: Any advice? A difficult dilemma with a newborn
« Reply #39 on: May 25, 2016, 04:20:32 AM »
First of all- our prayers to you. This is a tough, tough situation. Second- I would echo the idea that perhaps you could max out your FMLA leave? I believe it was several months the last time I used it. It was unpaid, but being home with family when needed made it worth it.

Please receive this is in the way it was meant- the hospital will (eventually) send you a massive bill. It is worth every penny. That baby needs care, and the right answer is to get it for him. I worked at a hospital for quite a bit. I would encourage you to call them and let them know you cant afford it (no matter what the # is). Many, many times a hospital will drastically reduce the amount due- if you ask. Dont spend much time thinking about this now, but I just wanted to put that out there. Never pay asking price for a big hospital bill. A Catholic/Christian/non-profit hospital will also probably have a dedicated team to help you manage the bills. AGAIN- baby's needs are more important than dollars. I pray everything goes well.

The hospital my daughter was born in refuses to bill more for NICU care than insurance will reimburse. I have to admit that at one point as I was in there holding my daughter I thought "I'm gonna need to get a home equity loan." Then the bill for everything was $800. And for some reason two years later they just mailed my wife a check for $50 for overbilling.

(Abington Memorial Hospital in Montgomery County, Pennsylvania, near Philadelphia. NICU staff were fantastic and supportive - only a few were just doing their jobs.)

Primm

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Re: Any advice? A difficult dilemma with a newborn
« Reply #40 on: May 25, 2016, 05:52:03 AM »
The hospital my daughter was born in refuses to bill more for NICU care than insurance will reimburse. I have to admit that at one point as I was in there holding my daughter I thought "I'm gonna need to get a home equity loan." Then the bill for everything was $800. And for some reason two years later they just mailed my wife a check for $50 for overbilling.


The hospital I work in does the same thing. If the insurance cover has an excess or copay, it is waived, and our neonatologists bulk-bill all of their attendances.