Sunday, January 4, 2009

Returning To Work After Having a Preemie

Back in mid November Stephanie (23wktwinsmommy) wrote to me with a possible topic for the blog. The topic is one that many parents of preemies can relate to in their own lives. My comments will be at the conclusion.

Stephanie (23wktwinsmommy) writes:

"Edwin and Serena received home care nursing in our home because they needed oxygen....24/7 at first, and gradually have managed sleeping without it two years later. Nursing allowed me to work, which is how we have health insurance and money to pay our bills.

But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.

1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need prednisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to over stuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?

I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.

We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.

So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.

What are these parents suppose to do?

As for me...it makes sense to not get married, quit my job, get free health care and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)"


At the beginning of December Serena was hospitalized for an upper respiratory infection (Stephanie, please correct me if I am wrong). After she was released Stephanie sent me the following update.

"The only *good* thing that came with Serena's illness and hospitalization is it fell in the same month we are getting reviewed by the case manager regarding our nursing hours. We went from having her only on a multi vitamin and off O2 completely, to being in the PICU for a week, on neb treatments every 4 hours, to 2 puffs BID of Flovent, to an oral steroid for the next 2 weeks.

This will certainly allow us to keep nursing, but at what cost?

It goes to show that my kids, and many other extremely premature TODDLERS are not equipped to go to daycare, and around other sick kids. A runny nose for a healthy kid is respiratory distress for ours.

People talk about hiring a nanny. This may be an option for some, but the idea of paying a lot for a nanny so I can work 30 hours a week, doesn't make much sense. I think I'd rather stay home and collect SSI.

I hope half day special ed preschool goes ok in September! Maybe their lungs will be healthier by then!"
I was working full time when I became pregnant with Paige in a career that required school and licensing. When my water broke (at 23.0) weeks I still thought that I would be returning to work. Paige was born at 25.5 weeks and during the time she was in the NICU hubby and I started wondering how it was going to be possible to return to work.

After she came home (we did not have nursing care) it was clear that I was going to be a stay at home mom, indefinitely. Early intervention was in our home 4 days a week. For the first 2 years of her life we never went more than a week (give or take a few days) without a doctors appointment. We knew that daycare was out of the question because of her fragile health.

Financially we drowned. The NICU bills, doc bills (copays and meds that weren't covered) and our private insurance (over $1,000 per month) cost more than hubby made. We now had only one car (I had a company car that I had to give up since I was not returning to work) and relied on family members to take us to doc visits. We did not qualify for SSI any longer either. We ended up filing bancruptcy.

I think that the issues that Stephanie raises are not uncommon to preemie parents. I am interested in hearing what others have done.

If you have been successful in returning to work, what type of child care do you use?

If you haven't been able to return to work, how do you make ends meet?

35 comments:

Sarah said...

I have "successfuly" returned to work. Before Emery was born, I worked in my home as a medical trascriptionist. I worked first shift and so does my husband. When Emery came home, not only was daycare not an option, but we were put on strict quarantine. We were not allowed to take him out, and family members could only visit if they were perfectly healthy. With Emery, not only are respiratory issues a problem, but a GI illness landed him in the hospital for 8 days last summer. Rotavirus for one child is a hospital stay for mine.

Anyway, I went back to work second shift IN MY HOME. My husban works first shift, I work second. This is the only way this works, and even this has its ups and downs. I start work at 2:30 but my husband comes home at 4 p.m. so we need a sitter every day for nearly 2 hours.

There is a high chance that my job will start requiring me to go back into work. This is not really an option. I cannot possibly be to work by 2:30 and stay there until 11 p.m, getting home at midnight and then being up with Emery at 5 or 6 a.m. when he wakes. (Yes, I'm cursed with an early riser.) I will either have to go part time or quit my job. This poses many problems, like trying to sell our home in this market. We cannot afford the mortage with only DH's income.

I feel that the only option that works for me is working in my home at night. Obviously not everyone can do this.

We do have nursing that has helped a great deal. It allows me to go grocery shopping, whereas before we had it delivered at cost to us.

It allows me to get to my own doctor's appointments as well as my husband, who has a disease that needs regular medical intervention.

Our co-pays are $2500 per person in the household. Yep. $7500 that I am somehow supposed to come up with. That means I'm supposed to come up with nearly $800 a month to pay for bills, which doesn't include our medications.

We are supposed to lose nursing in March. The work thing is a huge stressor for us. No daycare will take Emery with a feeding tube, 24/7 oxygen, 5 medications, and his regular feeding therapy as he does not eat like a regular child.

There needs to be daycare provided for these kids, and if not, then there needs to be subsidy for the parents who have to lose or quit their jobs in order to care for their children. I work in healthcare, and my boss suggested I quit because I wasn't 'of benefit' to her team. Funny, shouldn't the healthcare industry be sympathetic to my situation? After all, they created the situation. They know that saving these kids lives poses life-long complications and medical need.

Probably time to lobby our broke congress.

Sarah M. said...

I quit my job the day Sydney was born. It was obvious that we had no other choice.

We've made it work by severely cutting down our COL. After about a year of wracking up debt, we found Dave Ramsey and have been using his plan to get out of debt. We found cheap housing - we currently live in a (nice but small - under 1000 square feet) two bedroom apartment. We sold our car with a payment. My husband's car is now a '93. Mine is an '02 minivan but we went months with just one car. We live on a strict budget. We definitely don't live a flashy lifestyle. I spend a lot of time reading on Hot Coupon World and using the tips there to cut down our food budget. We don't do much that costs money. It isn't horribly enjoyable, but it means I can stay home with our kids, so we've made it work for us.

About the only other thing we've done is that in September/October '07 Sydney qualified for SSI again and that has helped a bit - the money is negligible (although since having Levi it has become a bit better) but the Medicaid benefits are supremely helpful. We have good insurance but at this point, with oxygen, feeding tube, elemental formula, and prescriptions, and therapy - Sydney's expensive! We only recently paid off the account that had bills from '07 that we'd racked up before we got SSI. That is one other thing I've learned - negotiate, negotiate, negotiate. I've never had a doctor's office yet tell me that they can't do some sort of payment plan. Unfortunately that means you owe a ridiculous amount of money, but at least it is (barely) manageable. There was one month last year though that we literally ate beans and rice to pay off an account so it is only so manageable but so far, we've been OK...

I don't know if this is at all helpful to anyone - we started this before the economy crashed, so we were able to do things like get out from under our car without too much repercussion - but I figured I'd share, in case it does...

tbonegrl said...

I have returned to work successfully. While my boys don't require the care some of the other parents who read the blog struggle with, here's what worked for us:

The first year they were watched exclusively by a mom who had 4 year old former-preemie twins herself. Jack's feeding and reflux issues alone led to 1 1/2 hour feedings and so I was very thankful to have someone willing to give them essentially one on one attention. (Her children were at preschool 1/2 time)

Therapy came at 4:30 in home so I would careen home from school and have therapy from 4:3-5:30.

It wore me out.

This year we mainstreamed the boys into a daycare situation. They also qualified for the MRDD daycare/school which would have bussed them, had nursing/therapists on staff, and a very low class ratio. The daycare we chose is run by a retired teacher and LPN. The class ratio is small, and our therapists go there to work with them. They have special accommodations such as a large muscle room which has really been helpful for the boys. In August when they started, Sumner wasn't walking. They were OK with that, and we set a plan to re-evaluate that if he wasn't walking by October, we'd meet, and they'd hire an "aide" to follow him daily in the classroom.

I feel like in both situations we have really lucked out. Our current daycare can administer meds if given consent (we do them at home currently) and the teachers have worked the therapists' recommendations into classroom daily time.

tbonegrl said...

I should add...they are currently having Synagis shots (2nd year) but have been fairly ill since starting daycare.

23wktwinsmommy said...

Thank you Stacy for posting this.
When we were reviewed after Serena's PICU stay I was given two options 1.) Our evaluator could come to our home in Jan and assess them that day and had to base the decision of continuing nursing on her evaluation from that particular day. NOT an option because if they happened to be healthy that day they would look 100% different than if they were sick. Option 2, get 20 hours a week taken away, which left us with some, and keep these reduced nursing hours until March, when we will most likely lose nursing all together!
So my daughter almost coding in December from a cold virus earned us 3 more months of nursing. ugh...
We have just made an offer on our first home which makes me nervous about what we'll do for nursing, but we need more space and the market is so great for buyers now we couldn't pass it up.
SO I can't quit my job because we'll need my income and Edwin's income from part time work and pay from boxing, and not to mention I carry the health insurance. SO Edwin will probably pick up some weekend shifts at the juvenile detention center and we'll try and find someone qualified to care for the kids at home for a few hours a day.
It's going to be scary not to have a nurse, especially if they need oxygen while napping like they do now with the smallest cold, but maybe I'll be lucky enough to find someone who has health care experience...

Emily said...

I did go back to work after my first preemie was born but we were blessed to have my MIL to keep the baby so he never had to be placed in daycare. With Dakota I quit my job which was difficult. We had to move to a more affordable place (next to my parents...) so that we could continue to live without my income. We made a multitude of budget changes to scrape by. We are very lucky to have Dakota in a medicaid waiver program that provides her nursing hours as well as medicaid, regardless of my husband's income.

Several of my friends have gone through the same difficulty of what to do about working and caring for a micro preemie. Most of them if they haven't quit work and cut their cost of living, have had a relative (mother, MIL, cousing) move in for the first winter to care for the child. The second winter they've done daycare not willingly but out of necessity. EI here comes to the child whether that's home, daycare or another location. Many of the day cares here will administer breathing treatments and medications. Oxygen is obviously a different situation and requires a special needs day care which we have one of but there's a waiting list. Maybe we just have different day cares here but even with moderate physical delays including feeding problems my friends haven't seemed to have a problem. It's not ideal by any means but that's what many of my friends have had to do and by the second winter our doctors haven't had a major issue with it.

Nancy said...

After Caitlyn was born, my job did not require that I take my maternity leave until she came home from the hospital. So for those 3 1/2 months, we basically cut out every frivolous spending we could think of and stashed away every penny that wasn't spent on bills.

When she did come home from the hospital, I took maternity leave, but the money saved still wasn't enough to cover all of our costs. Luckily, my mom agreed to help us financially for those few months. Which helped tremendously.

After my 3 months of maternity leave, we were blessed with having my mother in law care for Caitlyn in our house. So we didn't have to worry about day care. She had recently been caring for my nephew who was diagnosed with biliary atresia, so she was very confident in herself in terms of taking care of a medically needy infant. Therapy also came into my house and she could take Caitlyn to the doctor if I needed her to.

At 18 months old, Caitlyn started daycare because my MIL had to help her son and his wife who ended up having preemie twins (33 weekers). Cate also required therapy at a rehab center because of the need for some of their gross motor equipment. I found a lady that did daycare in her home and only had 4 other children there. So exposure to germs was "limited." In order to take her to the rehab center, I had to adjust my schedule with my boss who allowed me to work two 10 hour days to account for the time missed.

This routine ran us ragged and we decided we needed to be closer to family to help us out a little more. Which we did. We moved within 3 blocks from my mom when Caitlyn was almost 3.

Prior to moving, we knew that we were going to end up having to pay more in mortgage because of the area we were moving to as well as being in a house versus a condo. So we again pocketed all of the money we could and got rid of pretty much all of our debt (credit card wise).

Overall, we have been pretty lucky. We have always had fantastic insurance that has had minimal copays, but Caitlyn also hasn't required a whole lot of medical intervention since being released from that hospital. And eliminating that debt prior to moving has really helped us to prepare for the economic situation these days. So I can't even imagine being in the situation that many are in who read here. The stress that it puts on the family structure has certainly got to be devastating to say the least.

I do have a question though, once a child hit 3, if they are medically fragile or developmentally delayed, they qualify for special education. Even if the requirement is a nurse in the classroom with them. Is this not happening in other states? If it is a federal law, which I was under the impression it was, then the school district must provide these things (dealing with the feeding tubes, administering meds, handling O2, etc). I know this doesn't solve the issue of what to do prior to the child turning three, but at three, these services must be provided for them.

Tamara said...

I'm blessed to work from home, my son has been through 6 surgeries this year and literally has 5-7 visits a month with surgeons, doctors, therapists, specialists, clinics, etc. Working out of the home is out of the question because I would have to take weeks at a time off every other month. I also have 2 other young children.

Add the fact that my husband has lost his job and we are facing $800 a month COBRA payments for Health Insurance. I have all ready paid out over $10,000 out-of-pocket this year for medical expenses since my husband's company did an insurance carrier change mid-year. I have no idea what I'm going to do. Medicaid would be awesome, expect here in my state of Utah they have declared that any "optional" services including Occupational Therapy, Physical Therapy, Vision, Dental, Hearing, Nutritional based therapy and others are no longer covered. Which my son has every one of.

I don't qualify for any in-home help with my son, I haven't been out with my husband one-on-one for months. I'm not complaining despite all this because it's become normal. I view it as just a couple of years that yes, aren't comfortable, aren't glamorous and certainly aren't preferable but are just necessary. We've cut back on everything we can, but it's the medical costs that still drown us. We may have to file for bankruptcy... I'm not as adverse to the idea as I was a few years ago but that too shall be a few years of hardship. I have to be an eternal optimist here, otherwise focusing on the here and now is crushing.

Anne, Eliza Grace's mom said...

As a single parent, not returning to work was not an option for me. I initally returned to work 6 hours a day about 3 weeks after Eliza's birth and saved my maternity leave for when she was discharged. I own a small business with a friend so "maternity leave" meant working from home about 4 hours a day.

When I returned to work, after Eliza had been home for three months, I initally hired my 27 year old nephew to care for Eliza three days a week. I worked 3 ten hour days and worked from home 4 hours a day on my two days at home. Peter was paid the full going rate as a nanny but I had the comfort of knowing that he would throw himself under a bus before he let anything happen to Eliza. Peter was also extremely good about working with Eliza's therapists and meeting me at Eliza's various doctor appointments. Since Peter has moved on to other things I have continued to have a nanny for Eliza and have not put Eliza in daycare. Eliza has 15 therapy sessions a week, 9 of which are in-home sessions and 6 of which are at a pediatric rehab clinic, 3 hours a day, two days a week. Being in a traditional daycare cetner would not have allowed for the therapy sessions at the rehab clinic.

The cost of Eliza's healthcare (our monthly premium is $1100), nanny, deductibles ($2500 per year), copays ($30 per visit; $25 per prescription), and uncovered medical costs (like formula which runs about $600 a month) consume every spare dime and have eaten up any savings I had set aside in the pre-Eliza days. I have "saved" money by not moving out of my very small one bedroom apartment and eliminating almost all discretionary spending. Even living on a very tight budget though means I have had to incur debt when there are the unexpected things like when the medical supply company decided to charge about $100 a month in shipping charges to deliver the formula when the shipping used to be free. Eliza does not qualify for SSI or Medicaid because of my income and there is a three year waiting list in our state for a Medicaid waiver. Most months I just cross my fingers and hope that there is nothing unexpected and that ends can meet.

There is clearly a need for some type of specialized daycare, whether it be privately run or subsidized by the government. I have often thought that a "preemies only" daycare center could be a successful business.

Anonymous said...

Please, everyone, send your posts to change.gov as well as to this blog.

The Obama transition team says they want to hear people's personal stories of medical care problems so that the new administration can try to address them.

Helen

Sheila said...

Though I am thankfully long out of the need for childcare, I think it is something which affects the medically fragile child population in a way that is clearly different than healthy and/or FT kids (but doesn't remove the emotional/psychological burdens that *any* parent has in putting their very young children in care other than their own. It sucks, its heartbreaking and unless you put yourself in a zen state can cause anxiety, jealousy, obsessiveness and even hostility toward the person(s) who DO get to spend every day with your child. After doing a lot of research, I never intended for my children to be in center based care (not knocking this for those who choose it) but I wanted a more normal/organic family situation for my kids. I found a family daycare run on the RIE philosophy of Magda Gerber http://www.rie.org/

My daycare provider became a trusted and depended on partner for me and a beloved family member for my girls over the next 15 years or so (between both my kids).

My provider took kids with all different types of abilities/issues, welcomed everyone's EI providers into the daycare if needed and was an amazing source of good observations and assistance with their development. My provider was the first one to suggest that perhaps Katie had CAPD issues. Parents in general don't get enough support in making the daycare decisions. Many parents wait till they are a few weeks from work and then "look around" ... without having really internalized that you will be adding a whole person (or in the case of a center several people) into your family. I think medically fragile kids are probably NOT the best fit for center care, but over the past 15 years I've read of many parents who make it work... but they do have a high level of hypervigilence that they must live with.

Good luck with finding the best solution !

sheila

Anonymous said...

I ran my own business until problems with my pregnancy forced me to close it. My son was on oxygen for a year at home and had over 40 doctor visits (most 4 hours round trip away) in the first 8 months he was home, plus countless therapy visits. While he was on oxygen, we qualified for 1 hour of nursing care per week. Our state EI program alloted funding for respite care, but I had to find my own provider. Two people responded to the ad--one went pale when she looked at him and practically backpedaled out the door when she heard his medication/feeding schedule. The other "skipped town" according to the person who answered the phone when I tried to schedule an interview.

After he had been home a month, I tried to do some contract work from home for other companies. One
day I took him with me to a meeting after an ROP appointment and he got so overstimulated that he aspirated badly--it was terrifying. I found it impossible to work and deal with his escalating reflux problems and all of the various appointments and home therapy work.

That first year home, my credit rating tanked and my marriage went up in flames. Now, I am a single parent with a graduate degree living in my mother's basement and "on the dole." I thought my personal schedule would open up enough to work when my son entered preschool, but the reality is he's only there for 12 hours a week and we still have 2-3 private therapy appointments to travel to each week, 1-2 doctors appointments per month and frequent illnesses that throw the whole schedule out of whack. We have been supremely fortunate to only have 1 hospitalization per year since he left the NICU.

It would be unthinkable to try to work in my old profession with the conflicting demands it would place on my time, plus I could never find private health coverage for my precious little medical trainwreck. I can't imagine what other job I might find that would allow me the necessary time flexibility and have good enough benefits that I don't go broke paying deductibles/copays/medications. Due to sensory issues and low tone/endurance problems, he is tapped out with the stimulation he gets in preschool. I can't imagine what a mess he would be if he had to deal with a daycare setting besides. So, I live in fear of losing his SSI/Medicaid.
There are probably several other aids that we qualify for, but it is emotionally very difficult for me to "work the system". I shop ebay and garage sales (goodwill's prices are too high), eat out only when my son's therapy schedule keeps us out over a meal time and buy nothing for myself. We were living the minimalist lifestyle way before it became trendy.

Kassie

Susie Korbel said...

I work in early childhood education and have previously worked as a nanny, and to be perfectly honest I would not send a fragile/special needs child to a daycare center even if the centre would accept him/her. There are just too many variables... and with toddlers a legal ratio is 10:1- how can your child get the attention they clearly need?

Unfortunately my thought was also towards hiring a nanny but I can see that it may not be feasible for many families. I live in a fairly urban area of Ontario and as a qualified Early Childhood Educator my rates start at $15/hour for two children under five. Some parents may not be earning much more than that after taxes and deductions, and of course they'd rather be home with their children if they could.

It's a terrible situation.

Anonymous said...

Our preemie twins are now grown, but one has severe disabilities and attends a special needs class in public school twice a week. He could attend full time, but frankly he is just too fragile...even for multi-handicapped class. In the five hours he is there twice a week, he perspires so much that his clothes must be changed at least three times, and he must receive extra fluids just to get through the day without dehydrating. This is a phenomenon that doesn't happen at home, and doctors don't know what is causing it. He is not tube fed, but his feeding often takes longer than aides really have time for although they are very patient and kind. Years ago, we tried placing him in kindergarten half a day with a full-time aide, but he caught every illness that went around, and he missed more than half the semester. That year included two surgeries as well.
He had been doing well healthwise this year until Thanksgiving when he ended up with a mild case of pneumonia, and I could not take him back to school prior to Christmas for fear of him catching something else.
Needless to say, there is no way I could work outside the home fulltime although I have thought about it often. I just don't know how we would handle his care. Even if we could hire someone to come into our home, we would need a dependable backup, and the thought of having to juggle a job plus dependable care for him just stresses me out. I have been fortunate that my husband has a good job with catastropic health insurance, plus our son qualified for Medicaid at 18 months due to his acceptance on a Medicaid Waiver program, which also provides 12 hours per week respite care.
Several years ago, I turned my former news editing job into very limited, part-time freelance writing, which I do from home. However, while that gives us a little breathing room financially, it severely limits my time with our son, who needs 24/7 care. There is little time to work with him on the therapies he needs or to even take him out for a stroll on a nice day. But, we have two other children in college, and right now, their futures are priority. Oh, and my husband also works another job after he gets off work in the afternoon as well as all day Saturdays and Sunday afternoons. So, our family time is limited to nights.
Like many of you, we have had no family who could help with babysitting, although we had wonderful neighbors who filled in when needed when they were younger. Now, our disabled child also qualifies for SSI, and that helps cover many of his personal expenses.
However, I can say that without the Medicaid Waiver at a young age, we very possibly would have gone bankrupt or into longterm debt just paying medical co-payments for the many, many doctor visits and surgeries...about 20 so far.

Cora said...

In our house "daycare" is a swear word, haha. (my 2.5 year old was a 23 wker)

What has worked for our family is me working odd hours. I'm lucky (as a nurse) that these types of shifts are available to me. I work part time (2 12 hour nights a week). Most of these shifts are on Fridays and weekends so that DH is home during the night while I work, and also during the next morning/day while I sleep. This has put quite the kabosh on our social life, but has been so worth it in relation to our daughters health.

I'd try to find a very small in home type setting with someone willing to learn your childs specific needs. I have a friend that does in home child care, and currently has a 2 yr old that is g tube fed with downs. She's learned sign in order to communicate with her, and is willing to have the therapists come to her home if needed. I'm sure that someone like this is really hard to find, but these types of wonderful people do exist!

The other thing I would maybe do is post something at a local college. Especially one with a nursing and special ed program. Maybe you could get a poor college kid to become a quasi-nanny? This could be a great resume builder and hands on experience for someone going into that type of field.

Good luck, I can only imagine the stress you're under Stephanie.

Future of Hope said...

I have run a home childcare for the last 17 years - first by choice, and for the last 11 years because that is ALL that I could do. Luckily, I do still love what I do, and don't feel trapped doing it. When my second son was born at 26 weeks, and came home 2 months later at 4 pounds, I didn't have the option of total quarantine. As I told my Pediatrician - I understand what is best, but it is healthier for him to live in a house that has small children in it, than in a car or a cardboard box under a bridge! IT worked for us because I became a germaphobe, had stock in Isogel, and most importantly had parents (daycare kids) that understood I meant business when I said 100% healthy. I also cut way back on the number of kids, from a large family care with an assistant to 4 kids max and just me. It brings in enough to keep food on the table, and still gives me the flexability that I need to handle the still numerous Doctor and School appointments. I think it also helped my Sons mental and emotional development, because he has always been raised around a houseful of "neurotypicals" . Now that my son is older and medically stable, I often take in preemies and medically fragile kiddos. I agree that in the general childcare world, there just aren't that many places for our kids.

Anonymous said...

TPD. I have continued to work part time since having kids. We could have sold the house and lived with much less so I could stay home. But we decided that because I do freelance work at home, it made sense to try to stick it out and keep the kids at home. I am in patent law. It is not easy to get back into that field after leaving, so I probably would keep working p/t even if we didn't need the money...if my husband lost his job tomorrow, I could take on extra work, or go out and get a fulltime job and we would be OK. Plus I spent a lot of time and money on my education, and worked hard at my craft for 10 years prior to having kids. It seems like a waste to throw that away...although I have been tempted because trying to keep the kids and home and pay the nanny 10 hours a week and get my work done is a constant, often exhausting, juggle.

The first 2 years I worked at night and on weekends when my husband was home, so we didn't use any paid care. The past 3 years I have had a babysitter/nanny for about 10 hours a week. My oldest is in school all day now and my youngest is in preschool 12 hours per week. What I can't do during those times I do at odd hours or on the weekend.

I am not sure how we did it in the early years, but I think knowing it was only for a couple of years got us through.

Re: the cost of the nanny, it is very expensive but sometimes necessary as a bridge measure. Whether it makes sense for you depends on the type of job you have and whether the job will ultimately benefit your family more than it will cost in terms of $, time together, etc. I actually like my job, it is nice to know I could support our family temporarily if I had to, and I will like it even more when I can get all of my work done while the kids are in school, instead of having to stay up and night or work on weekends.

terri w/2 said...

This is a topic that is really revelant in the saving of micropreemies, the passage of the Baby Doe Laws, which provided no safety net to families of the survivors. Yes, there are programs out there that were implemented and currently are in effect as a result of Baby Doe monies, but really no meaningful support to families struggling with these daily issues.

This is a huge issue for women! I had done extensive research on this when I went through my divorce awhile back. My ex-husband was trying to force a "back to work order" on me, as well as stopping all support once the girls turned 18. My attorney hired a "career counselor" to come to my home and observe the level of care going on in my home. At the time, both girls were in wheelchairs, one of them just having had a hamstring surgery and was set up in my living room with a hospital bed, the other playing on the floor next to her with her beloved "baby toys." The career counselor was completely floored. Her first words were "what the hell do they WANT from you?" What was already happening was full time plus care. Being in a rural area, there really is no substantial care, help, nursing programs of any kind that would have allowed me to be employed. In addition, even if there WOULD have been this care in the home, these people would not have been able to transport to the massive amounts of medical, therapy, etc appointments. .

Needless to say, my husband lost his battle, I did receive spousal maintenance, child support, etc., but it was an uphill climb. The court systems do not know about us out here providing acute, chronic and sometimes emergency care within our homes. Continuously.

Through research at that time, I ran across a number of articles discussing caregiving mothers and their difficulties in finding meaningful employment. In 1996, the welfare to work programs were initiated, and what was found, is that while they were trying to force everyone to work, there were people who simply could not be employed - mothers of children with disabilities among them. Lack of supports, child care, etc. I would have to add - energy. Caregiving is consuming- emotionally, psychologically - we only have so many energy reserves, and caregiving most definitely depletes the reserves. How on earth can one be both a substantial 24/7 caregiver AND be employed full-time?

Anyway, yes, this is a huge issue - impactful not only on the current family, but the future of the caregiving family (moms in particular) as they are unable to save for retirement, have high outputs of money for things like wheelchair accessible housing, vans with lifts, medical expenses - couple that with loss of income - disaster.

Yes, Helen, I hope that the new administration can address this.

Here is a link to one article that I had researched - a tad old, but relevant none-the-less.
http://www-cpr.maxwell.syr.edu/incomsec/pdf/pp16.pdf

23wktwinsmommy said...

Another issue I just want to vent about here and get some feedback.
I was accepted to law school before the birth of my twins. I deferred, believing I would have no problem doing 3 nights a week school with twins the following fall. However, they were born at 23 weeks and of course I didn't go the next fall.
August 2009 is the last opportunity for me to begin law school without having to retake the LSAT (something I DO NOT want to do.) People are telling me I'm crazy to attempt law school, keep working at least 22.5 hours a week to keep some income and health insurance, and care for the twins. However, law school is my dream and it will mean MUCH better job opportunities (even part time work if need be with way better pay.)
My dad is the one person who really wants me to go and has offered to help in any way possible (watch the kids) since he'd be out of work by then. I know my mom would too and she woudl be out of work by then as well. I would have to drive 1 hour to school 3 nights a week (classes begin at 6 and run until 9), meaning I would leave around 4:45 and not be home until after 10pm 3 nights out of the week. I really want to do it and I think it will make life much easier in the long run, but I'm so nervous about being away from the kids that long, and being over an hours drive away.
My idea is to cut back on hours at work and try and get SSI money to "replace" what I would be making if working. I don't know how that will work because Edwin is technically self employed as a pro athlete and his income defers month to month. But we're not married and he could "move out" right?
Am I crazy to go? (I resent my application yesterday...I had already been accepted but needed to reapply since you can only defer for 1 year.)

Nancy said...

Stephanie, I do not think you are crazy at all. The fact that you have 2 parents who are willing to step up to the plate and do what they need to in order to help you fulfill your dream is amazing. And it is not an opportunity that you should pass up. I think the only thing I would hesitate about is the part about being an hours drive away. But if that were the only negative??? I have to say it wouldn't be enough to keep me out of law school.

Not to mention the fact that going to school is going to give you some "away" time that you probably need. You are with babies 24/7 for the most part. There is nothing wrong with being just a little bit selfish and saying I want a little more for myself. And technically, it's not really selfish since it is something that will eventually be of benefit to your children.

I know that this is not going to be an easy decision to make, but I am sure that you will make one that you are completely comfortable with. Good luck!

terri w/2 said...

Stephanie - go for it! As Nancy said, you need time away, and this will eventually be a benefit to your children. You have the support of your parents right now, which may not be the case 15 years down the road.

An analogy I try to live by is the one about the airplane airmasks - you put the mask on yourself first and THEN assist your children. We have to nurture ourselves in order to nurture others - this is a small way in which you are carving out time for yourself to do something you have always dreamed of doing. We put so many of our dreams on hold when we have children with significant special needs.

23wktwinsmommy said...

Thanks guys! I'm going for it. Just need to remind my well meaning mom to stop giving me the guilt trip. I deserve this and it will mean a much brighter future for all of us!
Thanks for the support.

Nancy, I know I wish I wasn't an hour away!!! They need to build a law school in my city, afterall it is the second largest in New England with 10 colleges, 1 medical school, and ZERO law schools!!!

Anonymous said...

Anytime you have someone who has extra care needs at home, it is a problem. Getting competent, trust worthy, affordable help has been a constant issue in our lives.

If there are no childcare places that can handle your children's issues, you need to find a "nanny" to do the job. I say "nanny" in quotes because what is affordable is not a trained nanny most of the time, but someone who needs extra money and is able and willing to take care of your children's needs for a price you can afford. Sometimes other parents of kids who have disabilities are a good source of childcare as there are many who need extra income and cannot go back to work.

terri w/2 said...

Anonymous said:

"Sometimes other parents of kids who have disabilities are a good source of childcare as there are many who need extra income and cannot go back to work"

I would argue this - other parents of kids with disabilities are good sources of "respite care" but not really on-going every-day care. Kids with disabilities or medically fragile issues get sick -theirs, ours and then there are the appointments, the ER, hospitalizations, the educational meetings, therapies, no one can replace the parent in these situations.

Being meaningfully employed is nearly impossible with our more medically involved children.

Kyrsten said...

The *only* way we've kept our head above water is through my advanced degree (so I would absolutely encourage you to try and finish school- just be very careful you don't burn out!!!) and the generosity of family.

The very day my 28 weeker, 3 day old son died was the day my hubby --in the process of switching to a better job-- was told the company had expanded too soon and they were renegging on their job offer. In that situation, he didn't qualify for unemployment, and I went back to work while my surviving son struggled for life in the hospital.

I quit when he came home, only to return to a part-time job six months later.

It's been 2 years of financial hell- running up credit cards and "robbing Peter to pay Paul" on suck-y COBRA insurance that ran out (conveniently) just as I found out I was pregnant this year, and just as Joshua needed eye surgery.

Somehow, miraculously, DH finished an online degree and found a fantastic job with a small company. Decent pay and *medical insurance*!

Now, though, we're digging out of this hole-- and here I am with two children: my "surprise package" infant (the baby I was told I had less than a 10% chance of conceiving...) and a 3-year old doing-well-so-we-refuse-to-jynx-it former preemie.

We live in Northern NJ, one of the most expensive areas to live in; 'can't really move, because (a) jobs are here, (b) we're currently living in a family-owned home, paying only $600. in rent (unheard of around here, even for a studio).

We've already done everything the money gurus say to cut corners: we own our older cars; we don't have cable TV; blah, blah, blah. We're desperate to simply pay the bills, adding on the reisdual medical costs(thank God for charity care!), and paying back the SSI the gov't said we shouldn't have received due to a processing error...

I feel guilty because a close family friend has been helping us out for more than a year now: she babysits, at no charge, two days a week so that I can teach part-time at the local college. She can't afford to do it for free any more than we can afford childcare-- and yet, it takes every cent of what we both make to just get by.

I don't know what the answer is!!
--at least I feel a little better, knowing I'm not alone... Maybe one solution would be to create a local preemie-link/organization, so that we can help each other out!

Anonymous said...

I work. I did not before our daughter was born almost ten years ago. I went to school, got a second BS, and now work full time. Our daughter came home on oxygen at 3 lbs 10 oz. She had many meds and was not stable. We had two or three home health visits by nurses who had never cared for pediatric patients and that was it. Hubby and I took turns at going to church for the first five years or so. I stayed up nights so that I could nurse her and give medications every three hours for the first year. After that I could sleep abotu six hours at night. She was in and out of the hospital for the first 2+ years.

Hubby's business went downhill so I went to school. Completed my BSN and am now a nurse. Chose this because I knew I could always get a job and would have some flexibility.

I work full time at home. Daughter is now almost 11 and is homeschooled due to health issues. Easy? No. Could we both work? No. Hubby's parents are deceased. My mom was a nurse but has watched our daughter less than a half dozen times. She makes my mom, the former ER nurse, nervous. She does say that my daughter is a joy (I have to agree with this!).

I was very blessed to find a job at home. I work on phone and computer in the sunroom. It's been the solution we needed. I make more at home than I did when I went out to work.

We have a high deductible insurance policy. It does not cover in home nursing at all. IL Meidicaid only covers nursing for children with trachs and/or vents. There are still too many times when I don't get to sleep and still have to work the next day. My hubby, who has been self employed for many years, now also works at home. He has mostly retired at this point.

Laura

future of hope said...

Anonymous said:

"Sometimes other parents of kids who have disabilities are a good source of childcare as there are many who need extra income and cannot go back to work"

terri W/2 said:

"Being meaningfully employed is nearly impossible with our more medically involved children."

Both of these are good points. I have already mentioned my "solution" (such as it is) to the issue. By caring for the children of others, I am able to provide the care that MY child needs - plus I am much more capable than the average provider of working with other parents of high needs kids. Also, because I have networked with several SAHM's in my area, I am able to provide back-up care to cover medical appointments and school meetings. For therapy and other types of appointments that I would just be waiting, everyone packs up and goes with me. ( And OH BOY was that fun during the year of 5 day a week PT - NOT!) I have lucked out in the fact that, although my child is very medically involved, he is also very healthy.

There is a big difference between a medically complicated/involved child and a medically fragile one. With the former, I think it is possible to find a solution that will work - even if you need to get very creative. With the latter I think that Terri w/2 is right, you just have to tie a knot in the end of the rope and hold on.

abby said...

We were 'lucky' that the girls' birth coincided with my being on leave for the summer (I teach college) and even more so that my employer literally had just (within weeks) instituted a two-course reduction for those with 'family events' (even though we are a same-sex couple, the College at which I worked, which was battling a reputation of being unfriendly to gay and lesbian couples, bent over backwards to correct this reputation. Thus, we have domestic partner benefits and any time a child is born to one half of a GLBT couple, either half gets to avail themselves of this leave policy even if adoption isn't yet formalized. They also extend this to adoptive parents. It's a very great thing). So, no salary reduction for me, and I had some cushion. I was able to teach a one:one courseload the first year Hallie was home (she came home in early October, so at the beginning of the fall semester). I commute 2.5 hours to work, each direction, but it made this worthwhile. That meant that I could do childcare for three full days. Sharon decided to go back to work three days a week after her Short Term Disability ran out (she worked in PA but was covered under NJ policies granting paid leave for childbirth) and to work 10 hour days each day and take a 30% pay cut. Sounds great, right? Well, the pay cut hurt, especially since she had been out of work and the disability payments were only 60% of salary, since June (it was now going on October) and we had run down a lot of our meager savings between hospital copays, parking at the hospital, etc before Hallie even got home. But the worst thing is that Hallie was SO sick when she got home. She was on oxygen 24/7, was vomiting constantly, had 20 medical visits during the first month alone and an average of one a week for 12 months on end. She wouldn't eat, so Sharon and I were feeding her in the middle of the night. This took a toll on both of our work productivity, but at least I have tenure and had a pretty reduced set of obligations. Sharon's boss resented all of this, and so she ended up being fired 9 months later with no severance pay (they even tried to deny her unemployment compensation, which we appealed and won).

Luckily, the economy was still strong and Sharon landed a job pretty quickly and began working at the new job--where folks do seem much more understanding and the pay is better--within two months. But those two months of no job, and then another 3 months of waiting for her new insurance to kick in, really took a toll on us. I was able to pick up Sharon and Hallie on my medical insurance (at a far increased cost, and I pay taxes on the portion my employer pays for Sharon because we are not legally married---not by choice). But we ran through the rest of our savings.

Sharon's new job was 40 hours a week, 5 days a week, so we needed childcare. We had begun interviewing nannies before she lost her old job (no daycare would take Hallie because of her feeding issues...daycares don't seem very tolerant of chronic vomiters and at that point Hallie vomited pretty much after every meal, and no one was willing to accept the idea of bottle feeding her by rocking her to sleep, either). We found that most nannies weren't eager to take Hallie on, either. We finally did find one intrepid soul, and we pay Ami 2/3rds of Sharon's salary every month. This exceeds our mortgage payment (which is over $1600 a month). Between this, the cost of Hallie's odd diet (goat milk is A LOT more expensive than cow's milk, but worth every penny of it), and the various meds that have high copays, we're just eking out a paycheck-to-paycheck sort of existence, with a lot of debt still accumulating. Nevertheless, we are grateful that we are able to 'afford' this. We are very worried about the economic downturn and would probably end up in a very dire situation within weeks of Sharon losing her job, god forbid this should happen. So we are hoping that Hallie's health stays good and improves to the point where some day we can imagine sending the little-one-on-her-way to daycare and Hallie to school with an after hours program and contemplate an existence where we can begin to pay off the debt we have run up and maybe get some savings again.

23wktwinsmommy said...

In dealing with all this, I have decided that we are going to try daycare for the kids when nursing runs out (we have it until March at least which brings us to the spring...thank goodness.)
Of course them being medically fragile was a main reason not to go the daycare route, but they will be in special ed preK in Sept anyway, and the germs aren't going anywhere. I can't isolate them forever.
And if God forbid they get sick repeatedly, we can petition for homecare nursing again.
But, I was very worried about Edwin's special needs with respect to daycare, but found that legally it would be tough for a daycare to deny him care because of the Americans with Disability Act. He is entitled to child care and they need to make reasonable accomodations for him.
Abby, I know with the difficulties Hallie has with eating this could be challenging, but daycare shouldn't just deny child care to Hallie. They need to at least try to accomodate her.
I know this isn't a complete answer, but it does make me feel better that there is a law protecting my right to have child care for my children in spite of their special needs so that I can work and we don't have to live in poverty.
There is also a lot of free legal help for those with disabilities, so if your child was denied child care because of a disability, you would have someone you could explain your case to.
I spent all day on the phone figuring out our "rights" and got some great info, if anyone else is thinking about the transition to day care and/or upcoming special ed PreK.

future of hope said...

23wktwinsmommy wrote: "I was very worried about Edwin's special needs with respect to daycare, but found that legally it would be tough for a daycare to deny him care because of the Americans with Disability Act. He is entitled to child care and they need to make reasonable accomodations for him.
I know this isn't a complete answer, but it does make me feel better that there is a law protecting my right to have child care for my children in spite of their special needs so that I can work and we don't have to live in poverty."

If only it actually worked that way..... Most daycares can and will refuse services to children that require extraordinary care. Under ADA most ( but not all, there are SO many loopholes) can be forced to be physically accessible, but they can't be forced to provide the extra staff or one-to-one care. They can be forced to accept any child, as long as that child can be accomodated by the program that they currently have in place. They are under no obligation to provide *any* extras.

Nancy said...

Unfortunately, future of hope is correct. A building constructed prior to a certain date (which eludes me right now) needs to do certain things in order to make the building accessible to everyone. But as far as programs go, yes they have to accept your child. But they do not have to provide one on one services, nor do they have to modify their current program. Basically, ADA gets them in the door. What happens after they are in is a completely different set of rules. And part of the reason for that is because daycare and preschool are "optional" in that your child is not required to be in a structured school setting. That doesn't happen until they are 6 years old. Once they are 6 years old, that is when accommodations and modifications to curricular programs are required to be made.

Despite how terrible of a situation that is, I also have to think that you aren't going to want Edwin in a setting where people are uncomfortable tending to his needs. I have seen it before, a child with significant needs goes into a program run by people who are not equipped to meet those needs. They then basically leave the kid in a corner because they feel as though they were forced or pressured into having the child there and are resentful in a big way. Eventually, the parents just pull the kid out for a whole host of reasons and the daycare employees can get back to life as usual.

I'm not saying this is what would happen with Edwin, but it can be the response that you get from people who don't feel they have the training to work with him.

If, however, you have found a daycare center in your area that is more than willing to work with you and provide Edwin with what he needs, then I couldn't be happier for you. I do hope that is the situation!

BusyLizzyMom said...

I am in Canada so things have been easier for me to be home for a longer period of time. On top of the year of maternity leave we recieve I was able to recieve a paid leave while my daughter was in the hospital. In total I was off 15 1/2 months paid. Our unemployment pay is much less than an average paycheck but it allowed me to be home until Elizabeth was a year corrected. Once I got back to work full-time I realized there was no way to keep up with all her appointments and health changes so I am only 2 1/2 days a week. I am very lucky I have a very flexible employer so I can make my own schedule around Elizabeth's needs. I am also very thankful to have my mother look after her the days I am at work. Only at the age of 2 1/2 did I have her in a pre-school with 5 other kids and she missed half a year due to illness.
I really do not know how other mothers are able to go back to work so early and when their children are still in the hospital it must be agonizing to leave them.
Our kids are very fragile when they are younger and there are no options available that do not place a serious finacial hardship on a family. Finally at 4 Elizabeth is coming out of the woods in terms of illness and her abilty to recover. Four years is a long time to keep a child sheltered and healthy.

Anonymous said...

TPD. 23wkstwinsmommy, I say go for it if you would go to law school whether or not it results in gainful employment. If you are looking for a career that offers flexibility and decent pay for actual hours worked, law is not generally a field that provides those things. Exceptions would be if you have certain relatively uncommon (at least in lawyers) skills that you leverage after law school, such as being a CPA and becomming a tax attorney, or being an engineer and becomming a patent attorney.

If you have a BA your options after a difficult 3 years and taking one or more bar exams are basically get a government job or a firm job. You could make as much now in government with a BA as you would post-law-school, and have regular hours. As an associate at a general practice firm you are going to work 80 hours a week and you will make about $30 an hour. Firm life in general stinks, and in 7-10 years if you manage to make partner, it gets worse. There are few if any in-house positions (ie, corporate) to be had without first being an associate for a few years at a top-tier firm. To get to a top-tier firm you have to go to a top-tier law school (or have the aforementioned relatively rare skills)...

Last but not least, law is not a family (woman) -friendly field. Probably the worst.

I put these things out there for your consideration, not to discourage you, but to make sure the realities are clear. Law schools graduate HUGE number of attorneys per year, a HUGE percentage of which remain un- or under-employed and of the percentage that get jobs, there is a mass exodus of women out of the field as they start families.

If you love the law and it is your passion in life and you are SUPER competitive and are going to a first-tier school near a major metropolitan area, your odds are not great but decent to get a decent-paying firm job.

Taking the LSAT again really is not a big issue compared to the much larger hurdles you will face during and after law school.

I am not just being a downer, one thing about the law is that analysis trump emotion most every time, and every decision is made in a very reasoned manner with attention to every angle.

Anonymous said...

TPD again. Another thing to consider is that once you start law school, in most (if not all?) states, you must complete within X number of years (5 comes to mind) or be forever ineligible to take the bar exam.

I know a few women who went to law school when their children were adults.

If you know any female attorneys, I would encourage you to speak with them!

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