Sunday, September 9, 2007

Tiny Babies, Fragile Families

About a month ago I wrote about a writer, Andrea Ball, who was asking for input from preemie parents.

Andrea, a preemie parent herself, writes about a Texas family who have 3 preemies. This is not a piece glorifying prematurity but rather an honest account of life after the birth of a preemie (or 3).

Sending a HUGE thank you to the Nash family for being so open with their struggles. It is your honesty that will help others to know they are not alone.

Gratitude also goes to the families who sent their stories to Andrea. You can read about them on the right side bar in each story.

And, thank you to Andrea for being brave within her profession. If more people in the media could step out side of the box, like Andrea chose to do, the misconceptions of life with a preemie would start to change.

Part one
http://www.statesman.com/news/content/news/stories/local/archive/0908preemies.html

Part two
http://www.statesman.com/news/content/news/stories/local/archive/0909preemies.html

26 comments:

Anonymous said...

Thank you so much for posting this Stacy --

I have a question for you and your fabulous readers.

One of the things I really discovered through this process is the lack of at-home help for parents.

So Adrienne Nash and I are talking about trying to help families with respite or a weeks worth of frozen meals or something.

The thing is, I REALLY don't want to get hung up with the health department or junk like that.

Does anyone have any ideas of how we could do something very informal, but very helpful to parents without having to jump through 1000 hoops?

Andrea

twinsx2 said...

Providing meals is fairly easy. I know of no state that would deem it a health violation to simply have various people taking meals to other families. If you could tap into a church group or a denomination, if would be helpful. In many cases, it’s the church that brings meals when someone is ill, has a death in the family or has a baby. If you could find a group that was willing to do it for anyone, not just members, that would be a good jumping off point.

Respite is a problem. You are arranging for people to come in and care for children. You need to be concerned about molesters and abusers. In my state, everyone who is employed or even volunteers at a school must be fingerprinted and checked. So, using those people would help immensely. I’d also suggest trying Special Olympics. They usually have rigorous standards for their volunteers. The added benefit is that you would be getting volunteers who are already used to dealing with special needs. As many of us know, the general public is usually frightened of sick or disabled persons. Remember, we are “special”; they can’t “handle” it. (Generally their words, not mine.) I find that if you can get with people who have a disabled child or family member, it’s easier. I know it seems terribly unfair that those of us who live with it 24/7 are also the ones who provide the respite, but that seems to be the way it is.

In any event, someone would have to keep a list, be the contact, volunteer substantial amounts of time.

Anonymous said...

Thanks Twinsx2--

I think I'd like to start with the meals. Respite is complicated, just like you said, and would take more time. But meals are something that everyone needs.

My friend belongs to a church -- maybe she could talk to them about the issue. Like the church could be in contact with the NICU and we could make and deliver the meals...

And then, who knows? Maybe as people get to know the volunteers, parents would be comfortable with us just "babysitting" or providing housecleaning or whatever for a few hours if they needed it.

If we don't say we're "providing respite" does it make a difference? Because I'm think that part of it might evolve organically...

Andrea

twinsx2 said...

I have to tell you, the best thing that ever happened to me was that my cousins got together and hired someone to mow my lawn. They’ve been doing it now for 3 years! It’s fabulous. DH can’t do it because he’s disabled. I usually have to do the first mow in April and the last in October, but the rest of the spring and summer; it’s done for me. I don’t have to buy gas, pay to have the clippings taken away, trim, etc. They wanted to help but due to their own circumstances didn’t have the time, but had the money.

Anonymous said...

That is really cool -- I love those kinds of things. That's the kind of stuff I want to do for preemie families -- just help them take care of the chores that are too impossible for them right now.

Nothing fancy or too complicated.

Andrea

Long Time Listener said...

Great question Andrea:

1. Coming to clinics with parents - we have our hands full and an extra pair of hands is often helpful - whether to take notes or to sit with the other children, or to feed the parking meter when clinic is late and our parking runs out etc.

2. Ironing - washing we can do- but for someone to grab a bag of ironing would be lovely.

3. Helping with the garden is a good one as someone else suggested.

In reality - each family will be different - they will all have a wish list and perhaps the secret lies in asking them what they need?

I can only too clearly recall someone 'offering' to help me. They wanted to take my child out for a walk. He had been in hospital for 6 months and was on oxygen and there was no way that I wanted that child out of my sight. I was too busy making up for lost time. I asked them to do my supermarket shopping. They did it with SUCH bad grace it was unreal and handed over the shopping with a "I will never do that again". Nor have they.

If you get my drift - let's help families where they want to be helped. Some people clearly have their own agendas!! :-)

Anonymous said...

Totally agree, long-time listener. I'd be happy to do someone's chores. And I actually love grocery shopping :)

I've got two kids of my own and have no great desire to provide "babysitting"-style respite if that's not what the parents need.

Now if only I could weed my OWN garden. I love lawn work.

Any other ideas?

Andrea

twinsx2 said...

This really ended up touching a nerve for me. So many ways I could have used help, didn’t get it and don’t ask any more. Especially the shopping thing. I hear from my MIL that so many people want to help. But, they want to drop off groceries because I can’t be trusted to spend “their” money wisely. With 4 children with autism and one of those with renal failure, we can’t just buy anything. So, if I handed them a list with “Jiff smooth peanut butter” on it, I probably get the store brand. Because beggars can’t be choosers. Which won’t get eaten in my house. Even if I scraped it out and put it in a Jiff jar. Those auties know their food! Same thing with diapers. Only one brand will hold the urine of the kidney kid. But, they’d buy the store brand and I’d be washing sheets everyday. It’s not that I wouldn’t be grateful but if you make more work for me, that’s not helping. And preemies who have oral issues won’t “learn to like it.” While both boys are on the charts for weight, one is at 3%. He can ill afford to miss any meals. Am I the only one who shops reading labels looking for MORE fat and calories?

A couple of years ago, I really needed help. DH was going to have both legs operated on, 3 weeks apart. My son was going to camp, we bought a wooden pay set that was to be delivered and I needed to be in Beatrice, NE at 1:30 pm. DH’s sister asked if she could help me. So, I told her that I really needed someone to take the oldest to camp. The babysitter offered but I really thought it would be better for family to do it. He needed to be there between 8:30 and 9:00 am. My plane left at 7:30 am. DH was having surgery the next week. He response was that “ She hadn’t intended to come into town until her 10:00 am Bible Study.” She really didn’t have “that” in mind when she offered to help. I know you must be thinking that I’m lying but I’m not. She really said those things. Dh gave up his job at a Fortune 500 company any years ago when his dad had a heart attack so that he could save the family business. His sister was a senior in high school at the time. DH move out from his apartment and into the basement and lived on $3,600 a year so that she could go to college. If “the family” does one thing for us, we hear about it for years. No one has ever told DH that they appreciated what he did. As for the play set, our pastor emailed me that he would have a “crew” out to install it while I was gone. The “crew” never showed.

There are so many other examples. But I just don’t ask any more. So, my suggestion is not really to ask but to tell. Just tell them that meals will be delivered on such and such a date. Or that I’m coming over to fold laundry. Or have you older son or daughter show up with the lawn mower to mow the lawn.

Anonymous said...

That really stinks, Twinsx2. I hate when people do that. They offer help because it makes themn feel generous, but they don't actually want to have to do work.

Lame.

Andrea

Anonymous said...

How to help? Oh boy, we had a lot of help when our preemie twins were small. We also had a toddler, so a neighbor came over every afternoon after school to play with them while I started dinner. Another neighbor occasionally went to doctors' appts. with me, because when one had to go, all of them went, and I needed help with two infant carriers as well as opening doors. A church couple who gardened and my mother-in-law filled our freezers with summer vegetables, and other people sent us cash to help pay for gas to all those doctor appts. out of town. A former co-worker, her husband and kids came over one time and babysat all three so my husband and I could go out to eat. Another friend paid for a babysitter so we could go to a banquet. Later, a local private preschool allowed my severely disabled twin to attend a couple times a week for free (I attended with him), just to be around normal 3 year olds, and the teacher voluntarily followed his IEP and learned how to work with a visually impaired child through his vision specialist. Our church women voluntarily kept our disabled twin during church so we could take our other two children to big church. While there was a nursery, this child had outgrown it and didn't need to be around babies and toddlers with runny noses. His immunity wasn't great.
Now that he's a teenager, he can usually stay quiet through church services and participates in a regular Sunday School class and has had great teachers who learned his signals and tended him while we went to adult classes.
Now, our biggest problem is lifting him for things like tub baths (no room to build a roll-in shower) or off the floor, where he has to roll and push up to get some exercise. While we have part-time respite care, we can't get help with bathing in a tub. Apparently, the home care agency doesn't want to risk their caregivers' backs, and my husband's back has gone out! So, while summer is still around, I put him in his old wheelchair with its plastic seat cushions, put his swim trunks on, wheel him to the back yard and give him a bath and hair washing with the hose. Not sure what we'll do in another month when the weather is cooler.
Long-term respite is another issue that we need to address, because we really don't know who would take care of him if one of us had to be hospitalized, and we are getting to that age. If an emergency occurred, I don't know what we would do.
There are no temporary respite facilities around here.
I suppose he would have to go to the hospital with us, and they would just have to fix him a bed in the room or admit him too!

Anonymous said...

when I was helping out a friend with kids with a variety of "issues" including multiple food allergies (this kid can't have dairy, this one is gluten intolerant, etc) I gave up with meals and just gave them grocery store gift cards, and a couple of times, just showed up and took all the kids to a buffet. My friend could have the groceries delivered, if she chose.

I think another thing that would be helpful would be something like paying for a week for summer camp for a sibling. It's stuff like that that gets missed out on while parents are trying to provide medical care and the basics.

alison said...

I forwarded Andrea's article to my nurse and doctor friends at the NICU where my daughter, 24 weeker, spent 4 months. I suggested that they read it and pass it on as I felt it was an accurate picture of what parenting a preemie is like..specifically the emotional, physical, psychological and financial struggles. One nurse, we were particularly close with, wrote me back and said it was "too harsh." I was so disappointed! Too harsh..well, guess what, that's the reality of it, at least in the micro preemie world. I thought the article would be a great way for the staff to learn about what happens after discharge, a way for them to empathize with the families. Too harsh...I'm insulted. I guess to some our lives are just too much to handle. UGH!..Frustrating.
Will things ever change?

Chris and Vic said...

I have a charter from a startup respite home in my files. It is from 2000, here in the midwest. If anyone is entrepreneurial, I will write to the founder and ask if I can pass her charter on to you. Or put you in touch with the founder directly--if she is still in business, and providing the contact info is current.

It is true that respite care is the great unmet need, anywhere you go. In my area, United Cerebral Palsy provides respite care to families with kids with disabilities. Private home care agencies can be contacted . . . to see if they would be willing to provide care. The private agencies can be pricey--$12-$20/hr. when I used one 2 years ago.

I agree that churches could be called upon. Maybe Eagle scouts or Girl scouts, earning more advanced merit badges, could also be called upon. Occupational and physical therapy students at local colleges are more qualified for the more complex kids.

We have a summer camp, sponsored by "Team Up," which is a group of parents of kids who attend the same physical therapy gym. At camp, every child has a one-on-one volunteer with him/her for the entire week: 100 kids, 100 volunteers. It is pretty amazing, here in rural WI. This pgm has stood the test of time, going on for years and years (one of the parents has a hobby farm that she volunteers for the week).

It can be done.
Chris and Vic

twinsx2 said...

Great idea Chris. And, if there are any colleges near by, check for students who want to be special education teachers. They would be great for respite or any type of "helping hands" . And they might learn something.

I'd also try to get a core group of coordinators who could divy up the work among churches or organizations. That way no one goup would be overwhelmed.

I need to finish planning a Hannah Montana birthday party for my NT daughter. I know you all jealous that I get to spend an evening with a gaggle of 3rd grade girls listening to Hannah's latest CD and doing the Limbo!!

Anonymous said...

Thanks so much to the Nash family for agreeing to be featured for these stories!! As has been stated here on numerous occasions, people should hear more than just the "miracle" preemie stories. Of course, if Alison's experience is typical of the reaction of NICU staff, there is a lot of educating still to be done. How are people who are not in the field supposed to understand, when the people taking care of the babies can't (won't)? :(

Paula

The Preemie Experiment said...

Thanks to everyone for giving such great suggestions to Andrea!

TwinsX2, I can totally relate. When anyone came over to help they always chose what they wanted to do. I know it sounds ungreatful but I wish someone had come over to do my dishes or clean a little intead of just wanting to come over to hold Paige. Crap, *I* wanted to be able to just sit and hold Paige without thinking about all the other crap I had to do.

But, in all fairness, I started to say "no" when anyone asked to do something for me. I think I started to feel like I was failing because I couldn't manage to keep the house clean, cook dinner, do the shopping and take care of Paige. I had unrealistic expectations because I assumed it would be like taking a full term baby home. And, a few of my neighbors had kids (full term) at the same time. At Christmas they were baking cookies when I was just trying to survive. I honestly thought there was something wrong with me because I couldn't accomplish all of the things they were doing and felt inferior. I wish someone would have smacked me and reminded me that there weren't enough hours in a day for all of the doc visits, therapy visits, feedings, weighing diapers, changing diapers, cleaning vomit and making cookies!

Anonymous said...

Ewwww... Vomit Cookies!!!

I think you're right, though, Stacy. People should ask to come over and do the best stuff while you slave away doing grunt work.

I would happily do someone's dishes for them.

I was really pissed when I saw Alison's post about the nurse calling the story "too harsh." To me, that just shows how these medical folks are so disconnected from what is really happening in our lives.

Or, even worse?, completely underestimating what parents need and want.

True, those stories could scare the hell out of a new parent. But most parents I know are so desperate for information, they'll take it gladly.

Andrea

terri w/2 said...

It doesn't surprise me at all about the "too harsh" comment from the NICU nurse. .and compared with some of the scenarios among our group of families here, the Nash's were severe, but not as severe as some. .

Anyway, yes, it does represent an incredible disconnect. It tells me that the NICU people don't want to hear it unless it is a rosey miracle story. Grateful parents taking home a baby who grows up to be a normal survivor.

Anonymous said...

So true, Terriw/2. The Nashes had it bad, but they are also in a very good place right now. No major disabilities as yet.

Thanks to the comments left on the Preemie-L board, I'm thinking about doing a story on older preemies with severe disabilities.How that affects the special education system, how parents feel about their lives and their children's lives.

It all goes back to that debate about resusciation, Because while some babies are so disabled, others are pretty healthy. So how do you make those choices without knowing what will happen??

Helen Harrison said...

To Andrea,

In your articles you mentioned the precentage of children born prematurely which you then contrasted with the percentage of children (in the general population) diagnosed with autism.

I think it is now safe to say there is a *huge *overlap between those with autism and those born prematurely, and that prematurity (and/or NICU treatments)can lead to autism.

Many children born prematurely suffer varying degrees of cerebellar hemorrhage and/or damage. This sort of damage was rarely looked for in the past but is now recognized as fairly common among preemies.

Cerebellar damage is *highly* associated with autism -- in that over 90% of children with autism have cerebellar damage.

Anyone interested should check out a study in the most recent _Pediatrics_ entitled: "Does Cerebellar Damage in Premature Infants Contibute to the High Prevalence of Long-term Cognitive, Learning, and Behavioral Disability in Survivors?" Limperopoulos et al._Pediatrics_2007;120:584-593.

Anyone who can't access the study, in full, but would like further information should email me at Helen1144@aol.com.

I urge you to continue your series, focusing on the later years, keeping in mind that "minor problems" and "delays" of prematurity in the first year or two all too often become autism diagnoses in early childhood or beyond.

alison said...

Maybe a diamond in the ruff. I finally found a doctor in the NICU who seems to understand the need for holistic care before and after discharge, and care not just for the baby. See his comments:

"Hi, Alison

Thanks for the note and the article. It was a very gripping piece; as you said, seemed to portray a more dramatically realistic picture of NICU parent experiences than most similar pieces.

I thought the part about the family issues AFTER discharge was
particularly striking, especially the psychological stressors to the
marriage and their own happiness. Although we're told many times in
training and in practice that the emotional and physical stresses of
taking care of a preemie extend well beyond the hospital, I guess I
never really had as vivid of a description of them as this piece.

Where did the article come from, can I ask? I'll talk about it with
Jane, but perhaps it's worth circulating among some of the staff here.

I know I was struck by it."

Good work Andrea, please, please keep it up!!! Some are getting it!

Alison
mom of 24 weeker

Anonymous said...

YAYYYYYYYYYY Alison! That's really cool.

And Helen -- absolutely. AS soon as I get myself together, I plan on other preemie stories. Just need some time to recover...

Andrea

terri w/2 said...

Andrea;

Don't go stay away for too long! You're on a roll. .

I just walked in the door from wearing my "other" nursing hat - that of home-health care RN, today doing a supervisory visit, observing care of a college-aged former 32 week preemie who is cognitively normal, however, has spastic quadriplegia CP and cannot perform even the most basic personal cares independently. It is heart-breaking to see that someone so bright has to rely every single day on care from strangers to get through the day. Our agency is having a tremendously difficult time finding enough staff to cover the client's needs for toileting, feeding, transfers throughout the day at home and at school. Mom is cracking mentally and physically from 2 decades of caregiving. The client is seeing what his/her disabilities are doing to the family and is becoming more depressed as the stress levels surrounding care continues. . .

I spoke with mom at length today, and she vented so much about the impact of prematurity on all of their lives, how much they've had to do and give up and fight and fight for the most basic needs. Perhaps she was more open with me being that she knew I was in a similar situation, however, it just shows the need, the HUGE need to discuss - that the impact of prematurity reaches it's ugly tentacles into the decades following birth and how impactful it is on all the family members.

We need to you to tell that story too when you're ready, Andrea. I hope that you will.

The Preemie Experiment said...

I just put up an interesting study (abstract) from a recent article in Pediatrics.

As soon as I can locate the abstract that Helen is talking about, I will put it up as a separate post.

Anonymous said...

Terriw/2 ---

Yes yes yes. Totally agree.

I'm away next week to present the project to the Carter Center in Atlanta (did I say this already?), then back to work.

Good momentum around here. People want to help the Nashes. Several are talking about creating a Baby Think Tank, if you will, to come up with some solutions for families...

Andrea

terri w/2 said...

Re: helping families in crisis mode - we had a family in our area recently who was affected by pancreatic cancer. .the daughter ended up taking a leave of absence from her job to care for her mom as she was failing - ended up being several months of care. The daughter and husband are parents of two kiddos 1 and 3 years old, so you can imagine the juggling that went on in that household too - daycare without 2 incomes, travelling expenses to the mom's house, etc etc. People got together and pooled money and went and bought gift certificates for them to local gas stations, grocery stores, paid for day care for a couple of months to help them through the crisis so the daughter could spend that hospice time with her mother. They were so appreciative of the gesture.