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. 

Saturday, March 12, 2011

I had a fabulous day today.  As some of you know, I’m not the only one who has struggled with depression.  My husband has had his fair share of struggles as well over the past few years.  He has finally found a regimen that has lifted his spirits and has been doing quite a bit better.  We had such a great day today. . .just the two of us.  We went shopping and Ryan actually let me pick out some of his clothes!  I got him some of those cute plaid shorts. . .I’m sure he’ll appreciate me calling them “cute.” We even got new iPhone 4’s.  For the first time in years, it felt like we were out on a date.  It was wonderful!  Olivia has been an angel this weekend and has continued to delight us by singing almost all the words to her Veggie Tale songs.  Someday, I’ll have to get her singing on video.  Hopefully, our amazing weekend continues tomorrow and we can always remember how great it feels to be happy again. 

Thursday, March 10, 2011

Some days I am just overwhelmed with gratefulness.  Olivia continues to amaze me and I’m reminded what a miracle she is.  Thank you, God, for constantly reminding me of the blessings in my life and allowing me to “see the stars” instead of the mud.   

Wednesday, March 9, 2011

Olivia and I got haircuts today.  She does fabulous now with getting her hair trimmed.   I’m so proud of the big girl she is becoming.  And, she looks adorable with her new short style. 

Monday, March 8, 2011

Olivia has always had trouble with getting her hands messy.  She usually asks for her hands to be wiped after 10 seconds or so.  This is something we have been working on for some time.  Well, today we finger painted for a long time and she had NO problem getting her hands messy.

[Caught red handed.]

Nor did she have any problem getting her arms messy. . .

or her face messy. . .

or her neck or her hair, etc.

We made such a mess, in fact, that we went straight to the bathtub.

Olivia got such a kick out of the fact that the water turned pink.  LOL.  We had a great afternoon!

Monday, March 7, 2011

I got 70 pages into  my book and I had to stop.  I realized that I can’t continue it. . .at least not right now.  Some days I am no more over my grief than I was three years ago.  I have no revelations to share nor anything to make myself or others feel better.  Losing a child leaves you with a sense of uneasiness that makes complete trust in God difficult sometimes.  It makes you question everything that you ever believed.  A trust in God does not mean trusting that everything will turn out the way you pray for it to.  It means trusting that His plan is what is best. . .even if that means losing your child.  That is hard to do.  So, I walk around every day with huge burdens on my shoulders and completely filled with anxiety.  I worry about Olivia all the time. . .I look for the worst possible scenario in every situation.  I think it’s my futile attempt at protecting myself and my daughter.  I know that I am to cast all of my cares upon the Lord, but every time I attempt to do so. . .it’s as if I say, “But please don’t take away anyone else that I love.”   I’m really struggling with this right now.  But, I’m searching and praying and reading and praying some more in hopes to find peace about it all.

Two men looked out from prison bars, one saw the mud, the other saw the stars."  -Frederick Langbridge

Lately, I’ve been seeing a lot of mud.  I’m reading a book called Calm My Anxious Heart: A Woman’s Guide to Finding Contentment by Linda Dillow.  I want to be content.  I want to come to terms with the fact that I gave birth at 23 weeks.  I want to be okay with the fact that my body can’t become pregnant easily or stay pregnant.   I lost my son and my daughter was robbed of her time in the womb and I want to be content just the same.  Regardless of my circumstances. . .I want to feel God’s peace.  I’m learning that contentment has nothing to do with your circumstances, but with your way of thinking. 

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy, think about such things.   Philippians 4:8

So, that is what I’m trying hard to do.  It’s difficult to write posts such as these. . .it makes me feel uncomfortably vulnerable.  I know, however, that some of the blogs I appreciate the most are the ones that exude honesty and vulnerability.  And, this is what my life is like. . .at least for now.

Serenity Prayer

God grant me the serenity to accept that which I cannot change, courage to change the things I can, and wisdom to know the difference, living one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace, taking, as Jesus did, this sinful world as it is, not as I would have it; trusting that You will make all things right if I surrender to Your will, so that I may be reasonably happy in this life and supremely happy with You forever in the next.  Amen.

-Reinhold Niebuhr

*This is something that I’ve really needed this week.  Maybe someone else needs to hear it too. 

A Girl and her Kitty

First Annual Playdate-Palooza

This morning, Olivia and I had some friends over for a playdate.  There were 6 mommies, 7 children and my wonderful husband who was off work today and helped out immensely.  I think everyone had a great time.  Do you remember that feeling of anticipation you had as a child when you were waiting for your friends to come over for your birthday party?  That was such a wonderful memory for me and the closest way I can describe my excitement for today.  The kids were all amazing and played together so well.  I was so proud of how well Olivia shared all of her toys.  It’s definitely something I will have to do again in the future.  You are all invited back anytime!

Izzy

Baby Sara

McKenna

Stacie and Madison

Kerrick

Robby

Shawna helping out with the slide.

All of the kids (minus Sara who had already left.)

The mommies (Stacie, Shawna, Me, Jenifer and Shelley)

Oh, and another great thing about today?  This afternoon Ryan, Olivia and I curled up in bed and took a nap all together for the first time ever!  You know how most parents can’t keep their kids OUT of their bed?  Well, we can’t get Olivia into ours as she loves to sleep in her room.  So, it was very special that Olivia was actually willing to sleep with us. It’s not too often that you get to take a nap as a family. . .especially on a Monday.

Sunday, February 27, 2011

Olivia had a blast playing at Grandma and Grandpa Sailing’s house today.  She is still talking about all of the fun things that they did.

She colored and drew pretty pictures.

She played with my old dollhouse.

She had great conversations with grandpa.

She enjoyed all of the stuffed animals. . .

. . . and played a great game of hide and seek.  What an amazing day!  And, what did mama do today?  Well, besides running errands, I worked on my book.  Book Update:  70 pages written and I’m well into chapter six.  And, it’s almost 2 am. . .I’d better get to sleep.

Saturday, February 26, 2011

So, I’ve finally decided to write a book about my experiences over the last 3.5 years.  What I’m going to do with the book. . .I don’t know.  It’s mainly a way for me to remember how I got to where I am today and why I’m the way that I am.  Losing a child changes you in ways that I’m only beginning to see.  Maybe it will also help others who are going through similar hardships.  That is my prayer. 

I have a title and am already well into chapter three and have been writing for over 4 hours tonight.  I’m using excerpts from my blog which has made me dive back into the fall of 2007.  That was such a difficult time.  It’s amazing the things that you remember and the things that you forget.  I’m so grateful to have so many things written down.  I (thankfully)remember little about vent settings and oxygen requirements and the day to day NICU life.  I am currently in the middle of writing about the night Logan died and am flooded with emotion.  Please don’t ever forget about my son.  Hopefully, this book will be a way to remember him as well.  Let’s just hope that for the first time in my adult life, I actually finish writing a book. 

School Picture

Not only did she smile, but she posed as well! 

Her conferences tonight went well. . .Olivia is doing very well with school.  We received an interesting tidbit of information that we were unaware of.  She can go to preschool anywhere on this side of town and her therapists will go there to work with her.  Currently, she is in the special education preschool in our school district.  I am happy with her progress so far this year.  I think we will probably go ahead and keep her there, although if any of you know of a great west side preschool, I’d love to hear from you.  I’m concerned that many have already had fall enrollment.  Anyway, she’s doing great and has definitely learned the ropes of preschool.  So proud! 

Trip to Arkansas

Katie, Olivia and Kaleb

Katie and Olivia

Katie

Aidan

Kaleb

The Snyders

Alex

Katie and Aidan

Alex and Olivia

Olivia and Katie

Riding on the trolley

She didn’t have quite enough weight on her to ring the trolley bell. LOL.

*Many thanks to Kim for providing these pictures.