Saturday, March 19, 2011

Last week, I emailed our local news stations about the P17/Makena drug.  This is an injection that helps women who have had preterm labor carry another pregnancy to term.  Many of my micro-preemie mom friends have used this with subsequent pregnancies.  For those who haven’t read my previous post, this drug is now FDA approved and the price went from $10-$15 per shot to $1500 per shot!  The problem that I have is this:  Even if you have insurance, the insurance companies are now going to be really strict about who qualifies for this drug.  This could leave thousands of women at risk for another premature birth.  If I were to get pregnant again, I now may not qualify since I went into premature labor with more than one baby.  This is a huge step backwards in the fight against prematurity.

Anyway, one of the local news stations responded to my email because they are doing a story on this very subject.  They were looking for a family to help personalize this issue.   They are coming to our house on April 4th to do an interview!  Honestly, I’m terrified because I’m not an “in front of the camera” type of person.  But, this issue is very near and dear to my  heart and if I could help educate people on this subject. . .that would mean so much to me.  I think many people still have a biased opinion about those who give birth so prematurely by believing they must not have had prenatal care or they used drugs, etc.  That just doesn’t include the vast number of amazing women I know who did everything right and still couldn’t carry to term.  So, I think our voices are being heard and hopefully this news story will help educate others on the importance of this issue!  I’ll know next month whether or not we’ll be on the news and I’ll be sure to let you know when it will air.  I’ll try to post a link to it on the blog as well. 

Friday, March 18, 2011

Olivia and Izzy

Wednesday, March 16, 2011

Most little girls carry around their dolls. . .Olivia carries around her trains.  She keeps them in her purse.  I cracked up today when I saw them all sitting around the table in her dollhouse.  I went upstairs to grab my camera to take a picture of the three trains comically sitting around the table and found they had all been put to bed.

Poor James had to sleep on a table without a blanket.  That would never happen to Percy.

KV Pharmaceuticals

I have been very disheartened by recent news regarding the prevention of premature birth.   If I were to ever get pregnant again, there are a few things that would need to be put into place.  One is the placement of a cerclage.  The other is the possible use of a terbutaline pump, which the FDA has recently declared unsafe for pregnant women.  The other is the use of a weekly progesterone shot, P17. This week, KV Pharmaceuticals won FDA approval to be the exclusive manufacturer of this drug, now called Makena.  What once was a compounded, widely available drug that cost $10-$20 per injection will now soar to a cost of $1500 per injection!  That’s a total cost of $30,000 per pregnancy.   I just wonder how many babies will be born premature because of this company’s greed.  This is terrifying to me and completely unacceptable.   I know many micro-preemie moms who have gone on to have full term babies with the help of this drug.  The March of Dimes, who I have whole-heartedly supported, were in favor of this FDA approval, although they say they had no knowledge of the price increase that would transpire.  I think, however, that if the March of Dimes truly cares about saving babies. . .they need to take action and try to make this right.  You cannot be in support of KV Pharmaceuticals and preventing premature birth.  Many fellow micro-preemie moms are boycotting the walk for this reason.  To be honest. I haven’t decided whether we are or not.  I still believe in the goodness of the organization and what they have done for babies.  But, it literally makes me sick because I have this belief that if I do ever become pregnant again, I would never have to go through what I went through again.  Nobody else should either.   We are talking about women who have been through premature birth once before and deserve a chance at a full term pregnancy.  Babies deserve to have a fighting chance!  Maybe this doesn’t affect you personally, but it will definitely affect your health care rates.   I will, however, be writing to the March of Dimes, KV Pharmaceuticals and to my congressmen.  I hope some of you will as well.  The following blog post by Eliza Grace’s mom gives you the contact information that you will need.

Blog Post about KV Pharma/MOD
http://eliza-grace-micro-preemie.blogspot.com/2011/03/march-of-dimes-and-kv-pharmacueticals.html?spref=fb

http://delangefamilytx.blogspot.com/2011/03/march-of-dimes.html

http://ok-corral.blogspot.com/2011/03/march-of-dimes-and-kv-pharmaceuticals.html

If anyone has anything they would like to add, please feel free to leave a comment.  Many of you are more familiar with this drug and can provide additional information. 

Tuesday, March 15, 2011

Olivia had a dentist appointment today (she had her first one six months ago.)  She did really really well.  She cried just a bit, but they are really good with kids at this pediatric dentist office.  Olivia got a good report, which I was very grateful for.  Because she had rickets while in the NICU, I have worried about what that might do to her teeth.  Dental caries and misshapen teeth can be linked to rickets.  She also drinks Pediasure, which is really high in sugar, for weight gain.  And, she has these perfect, white, straight, beautiful teeth.  The dentist could not believe how white and straight they are and that they had no plaque on them.  We have a hard time brushing her teeth as well as I’d like since she has some oral aversions. . .so, I consider it quite miraculous.  Seriously, it is just a miracle that leaves me in awe of God’s power.  He continues to take care of my beautiful, little girl.