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!"
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?