Tuesday, January 27, 2009


I am sure most of you have heard about the Octuplets that were recently born in California. If not, you can read about them here.

There are so many emotionally charged questions running through my mind.

Is the human body really supposed to carry 8 babies?

Is this responsible?

Is this fair to the babies?

What about the cost to society?

To be honest, I have not heard if this was a result of artificial reproductive technology. Is it even possible for a pregnancy resulting in this many babies to have happened naturally?

Sunday, January 18, 2009

CAM Series

In the past month I have received 3 emails asking me about the CAM (complimentary and alternative medicine) series I had talked about doing way back in 2007. You can find my original post here.

First let me apologize for not answering your emails. Honestly I have been trying to figure out how I want to handle it.

As I mentioned in my original post, I wanted to start the series so parents can hear what has worked or not worked for others. But, what I did not want to happen was to give the impression that I personally approve of any type CAM. Since I never could figure out how to make sure of this, I have decided to hold off on starting posting about it.

I am a skeptic, one of "those people" who need proof for everything. Solid proof. After Paige was born I choose to stuff a sock in the skeptic side of my thought process and followed with my heart instead of my brain. It's easy to do when you have a child who needs help yet no one has the answers. But, after awhile I was no longer able to quiet the skeptic and she now rules my head again.

Do I believe that all CAM is fake? Absolutely not. I think that some forms of CAM are now widely accepted as part of regular medical care. But, I don't want to use this blog to mislead anyone into thinking that some forms of CAM are worth shelling out tons of cash, simply because it has appears to have worked for a few.

What also makes this topic very hard for me is that some of the people in my life, that I admire and love deeply, are very much in favor of CAM. I cannot find a way to discuss it without feeling as if I am dismissing their experiences.

On a side note... My blog anniversary (it's been 2 years since the first post.) has come and gone and I never realized it (I blame it on my addiction to facebook-hehe). I want to thank all who have been a part of our discussions. Talking openly and honestly is not always easy to do, so please know that I am forever grateful for those who share their stories and thoughts here.

Sunday, January 11, 2009

The Importance of Statistics

We've discussed statistics and research on this blog in the past. (If I was better at labeling my posts you'd be able to quickly access said discussions. :) I'll fix that soon.)

When we've had these discussions we end up talking about how the statistics are needed in order to discuss NICU care and decisions. Today I want to talk about how parents, who are raising preemies, need the research and statistics.

In the past I've talked about having a name for all of the conditions that seem to be common in children born premature. Recently Liz tackled this topic on her blog. As you can see from the beginning comments, people cannot handle when a preemie parent is honest about their feelings and struggles.

Statistics are not only important when talking about NICU decisions and care but they are also needed post NICU.

The reality is that there are preemie parents out there who have had their children removed (or threatened to be) due to failure to thrive. To the opposite, other parents have gotten great care from doctors who explain to them that the failure to thrive label is not their fault and occurs in some preemies.

Parents who bring their preemies to many doctors, begging for help for all of the issues that are not explained to the them in the NICU or by their pediatrician, run the risk of looking like a Munchhausen's case. Yes, it happens. To the opposite, there are the doctors who have read the research and statistics and know that there are many issues that preemie face and realize that it is not uncommon to have multiple specialists involved in caring for a preemie.

What about family/friends/neighbors who think you are simply not raising your child the right way and that is why he/she acts so different than peers?

In the January 1st edition of the Journal of the American Academy of Pediatrics an article was posted... Psychiatric Morbidity in Adolescents and Young Adults Born Preterm.

I was immediately saddened yet happy at the same time. Saddened that our kiddos deal with so much yet happy that other parents may not have to go through the disbelief on the part of the medical system, as we did. Paige is not the only preemie who has dealt with mental health issues. We have a good team in place now. They don't judge us, as parents, or say that we simply weren't raising her correctly. They know that prematurity can play a role in the mental health of a child.

Now, I am not saying that prematurity can be blamed for every ailment/condition that a former preemie may acquire. But, when you have a group of conditions that *seem* (that one is for you Clay) to be common, it needs to be looked into. So, to those who are compiling the statistics and writing the research... please keep it coming!

I want to add one more personal comment... I am not, by any means, saying that prematurity needs to define you into your adulthood. It was brought to my attention that some adult preemies who have escaped some of the long term issues feel uneasy about how they are doing. I have never heard this personally. To the opposite, I have gotten emails from adult preemies who have thanked me, and the others on the blog, for discussing the issues. It allowed them to no longer question what was going on in their bodies and minds.

I can assure you, Paige's prematurity does not define her. She does not walk up to strangers and introduce herself as a former preemie. But, the long term issues that her body endures, secondary to prematurity, does dictate how she feels every day.

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?