From a PPROM survivor

As I lay in a hospital bed for 62 days, praying and hoping that my baby would survive in my womb without adequate levels of amniotic fluid, due to premature rupture of membranes (PPROM) at 23 weeks and 1 day pregnant, I was barely able to grasp the magnitude of the situation for her health. While we were extremely fortunate that Rachael survived (and is now thriving), there are many families who face great loss because of PPROM. For a woman who goes through a pregnancy marked with PPROM, the prospect of another pregnancy is freightening, as PPROM does recur.
After the initial shock of our current pregnancy subsided, the real questions began: what if IT (PPROM) happens again? What if we lose this baby? What if we aren't so fortunate the second time around? (Fortunate, to deliver  3lb, 6oz baby who spent 51 days in a NICU).
I was thankful to my medical team at Duke to agree that the use of P17 (a weekly injection, taken in weeks 16-26 of pregnancy) which has been shown to reduce the recurrence of PPROM by 30% was a good treatment option for me. I was given a script and paid $90 for the entire 10 weeks of the medication.

Well, now the production of this medication (which was compounded in individual pharmacies) has now been approved through the FDA to one drug maker, who is charging obscene amounts of money for this treatment. See the link below for more details as well as the steps below that you can take to stand up against this process which will keep MANY (most) families from having access to this vital drug for pregnancy survival.

The logic doesn't work out -- if PPROM prone women do NOT get this drug, the alternative is a marked increase in NICU stays. Rachael's 51 day stay was billed to our insurance at almost $500,000  --- so, taking AWAY a drug that would cost the patient $90-100 and insure the longevity of her pregnancy is ABSURD!

http://www.msnbc.msn.com/id/41994697/

First, contact KV Pharmaceutical and voice your displeasure:

KV Pharmaceuticals Contact Information: investorrelations@kvpharmaceutical.com
Second, notify your local media outlets about this issue.
Third, write or email your congressman and senator:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
https://writerep.house.gov/writerep/welcome.shtml
Fourth, contact the FDA and find out why they elected to give KV exclusivity for this product. Competition will bring down the price dramatically.
http://www.fda.gov/AboutFDA/ContactFDA/default.htm
Fifth, write to the president:
http://www.whitehouse.gov/contact
Sixth, contact your state Medicaid offices and your insurance carriers. Get them involved
Seventh, get as many of your friends, family members, co-workers, etc. as possible to do the above.
Eighth, feel free to cut/paste/email the above to as many contacts as you can.

Coming Home Day -- 1 year later

One year ago today, we brought Rachael home from the hospital! We closed the chapter on my 65 day stay and her 51 day stay at Duke University Hospital. We began the chapter of living with her each day...every day...all. day. long. She was ours. No more nurses. No more beeping monitors. No more gowns or scrubbing in. No more phone calls to check-in during the 10 hours between visits. I remember staring at her in the car seat in our car and praising God that we were bringing home a healthy little girl. The sigh of relief we breathed as we settled in to our life in our home was huge. A weight had been lifted.

She is now thriving and acting every bit (and then some) of her 13.5 months! She weighed 5lbs, 10oz and 18 inches when we brought her home. She's now 18lbs, 6oz and 29 inches long. According to her developmental check-up, she's demonstrating the cognitive/language/problem solving skills of a 15 month old and her gross and fine motor skills are right on for 11.5-12 months -so on track with her "adjusted" age. Most importantly, to me, the psychologist reported that Rachael was flexible and if an activity was too challenging for her, she would just do what she knew how to do with what was available, rather than getting frustrated and giving up. She made it through the 60 minute evaluation without fussing, but, as soon as it was over, she was tired and hungry, for sure!

Rachael....you have changed our lives forever. It is an honor and a priviledge to be your Mommy and I hope that you'll learn as much from me as I have from you. I love you with my whole heart, little girl!

Full Term!

From BabyCenter.com:
Your baby is now considered "full term," even though your due date is three weeks away. If you go into labor now, his lungs will likely be mature enough to fully adjust to life outside the womb. 


This is a significant milestone for the mom (and dad) of a preemie! After watching our little girl struggle with basic life functions, like breathing and maintaining her heart rate, the idea that the little baby boy growing inside me *might* not have to struggle with these things is overwhelming. enormous. downright miraculous! I say *might* because I know well enough that not every "full term" baby is strong enough, but, I can keep saying my prayers that he will be and that we'll go to the hospital sometime between now and March 23 and deliver a baby and bring him home a few days later. 
This will mean, we'll have had a baby in all 4 nurseries at Duke -- the NICU, the Transitional Care Nursery (where R spent her last week in the hospital), the Special Care Nursery (where she spent 24 hours) and baby brother will hopefully go to the full-term nursery.
I'm hoping he's just packing on the pounds and enjoying his last little bit in the land of easy feeding and sleeping! 


We can't wait to meet you, little man! To cuddle you and love you and watch you grow every day of your life.

Houston: We have first steps!

That's right...at 11.5 months (adjusted age), 13.5 months (calendar age), we witnessed the first FIVE steps for Rachael. She stood up from a sitting position, balanced herself and took 5 steps towards Daddy while we both looked on. She's been taking 1-2 steps for the last week or so, if we get her up to her feet. It was amazing to see this happen right before our eyes.
Pictures/video to come....this momma is not so good at routinely downloading the camera.
She's getting to be a big girl...we're so excited to watch her grow.

Customer Service...can I get some good service, please?

OK...I'm interrupting my normal flow of chattering about the craziness in our house, to something that gets under my skin like nothing else can: POOR customer service.
I work in a customer-facing job; I KNOW how difficult the general public can be. For goodness sake, I work with 18-22 year olds...they can sometimes be worse than the general public. (Said with love, of course. :) )
Today....JUST today....within the span of less than two hours, we encountered 2 instances poor customer service.
We took Rachael for some new kicks...some big girl shoes for walking. Well, we travel 20 minutes to the closest Stride Rite store. As we arrive at the store, the two families who were already there were leaving. So, we're on our own in the store -- not a salesperson in sight.
I look around for the sign-in sheet. I do see a clipboard, but, it's labeled "district newsletter" -- well, not going to sign up for that, thanks.
So, we approach the shoe display and we're looking at the shoes trying to figure out which pair we like. Approximately 5 minutes had lapsed between our entry to the store and this point of looking at shoes on our own.
Well, just as the two - YES- two associates emerge from the back, another family is walking in the door. BOTH associates make a beeline for this family. NEITHER one acknowledges us, at all. WHAT?????? So, Mike gets assertive with the one sales lady and asks her to come help us....being that we were there first. When she approaches, I mention that I didn't see a clipboard for sign-in. She points to the one labeled, "district newsletter" and says, oh, it's right over there. I make sure to point out that it is not well marked.
Then, the woman spends the rest of our 10 minute visit with her making us feel like we're inconveniencing her. Ummmm....we're paying customers. We're the reason you have a job, lady!
So....we do, in fact, get shoes and go on our way.
I brush it off and move on.
Then, we pick up a few more things and get to dinner. We go inside the restaurant and ask for a table for two adults and a highchair. 1) She doesn't ask if we need a kids menu....OK...I blow this off....Rachael is little and might not look like she can eat a plate of chicken tenders! :) 2) We get to the table and the hostess leaves the highchair in the middle of the aisle and walks off, after tossing our menus on the table. She doesn't even wait for us to be seated or mention that she hopes we'll enjoy our meal.
Luckily, it wasn't very crowded at the time, so, we could rearrange the furniture to suit our needs, but, geesh....could you help a customer out?
I don't know folks. I worked in the restaurant biz for 5.5 years...perhaps that has made me a stickler for customer service, but, what about simple human decency??? What about doing more than is required? Going "above and beyond the call of duty"? This seems to be lost in the service industry landscape these days and nothing is more aggravating to me.
Thanks for letting me vent. I hope to teach my children to give better service than they will likely receive.

Transition...

I know everyone faces transition in life....from one thing to another and growing and changing is what keeps life interesting, isn't it?
Well, Rachael is going to transition this week...from the infant room at daycare to the toddler room. This may not sound like a big deal, but, believe me it is! She'll be fine....I, on the other hand, am nervous for her!
What does this transition mean for her?
~ no more bottles at school...period. All milk (yes, I said MILK -- not formula) will come from a sippy cup. We tested this out this past week and she did fine, but, is waking up overnight again for a bottle because she's not quite getting enough fluid during the day.
~ one nap -- and it's on a cot -- no more crib! She's typically taking only one nap a day, these days, but, it's still in a crib. I can't wait to see how she does with the cot.
~ almost everyone in the new class is walking....Rachael is close, but, still working on walking while holding hands or on to the furniture.
~ no more Miss Nicole and Miss Jessica. She's really attached to these two teachers, especially Miss Nicole (pictured below in her birthday pictures). We're hopeful that she'll like Ms. Linda and Ms. Janis just as much.

We'll keep you up-to-date on how it goes....I bet she'll do better than I will!
Vocabulary update:
shoes, fish, uh-oh, Lacey (sounds more like shay-she), hi, "hey", and apparently at school she was looking around from her crib saying "cole" -- perhaps for Miss Nicole!

The First Birthday: A Recap

Oh my....what a weekend it was for Rachael's first birthday! We celebrated on her actual birthday by going to have 1 year portraits taken. It was a special day for our family and I wanted to have it documented with some professional photos. Rachael was in a really happy mood all day that day and even smiled for the camera!

I was fortunate to have the day off from work to do party-prep and get my hair done. I think it might be a tradition to take the day off and as the kiddos get older,  do something special with Mommy and baby/child that day. Birthdays were always a big deal in my house growing up and I want to continue that. 

The pictures from her party are below...they are all out of order, but, I trust that you are smart enough to figure out which ones went first. :) Hint: The one with Mimi and Rachael is the "morning after". Rachael enjoyed being with some friends -- Ruby, Evan, Claire & Kate (we missed you Samantha & Emma!) and the big people, too! Mommy and Daddy really enjoyed time with the big people (and little ones) and are so thankful to Mimi and Papa for coming all this way to celebrate and help us do everything! 

Year In Review

What a year it has been! We love you, Rachael!

Welcome, Rachael Lenore! January 14, 2010
3 pounds, 6 ounces    15 inches

ONE MONTH

COMING HOME DAY ~ March 8, 2010

TWO MONTHS OLD

THREE MONTHS OLD

FOUR MONTHS OLD

FIVE MONTHS OLD

SIX MONTHS OLD

SEVEN MONTHS OLD

EIGHT MONTHS OLD

NINE MONTHS OLD

TEN MONTHS OLD

ELEVEN MONTHS OLD

Baby Boy update

Contrary to popular belief, I have not forgotten about baby brother!
I am thrilled to report that the pregnancy is going very well! At 29 weeks, we were tested for gestational diabetes (negative!) and at the regular OB check up (did I just use the word "regular" in relation to pregnancy????), my blood pressure and weight were all within normal limits. BP of 105/64 - rock star!
Baby brother is kicking very powerfully so and my belly measured 32 weeks, even though we are 29! Wonder if that's his position or if he's going to be a big little brother?
Our next ultrasound will be at 32 weeks (January 31) where we will get another look at the kidneys (possible bladder reflux, like his sister) and also get a good measurement and projection on his weight.
I will post a belly picture or two as it's much different this time than with Rachael, thanks to having fluid!
We are thankful for your continued prayers that this leads us right down to the 39-40 week mark; we're still thinking about/praying about VBAC v. repeat c-section....our 32 week appointment might help us make that decision, especially if he's breech.
We are decorating the nursery in a choo-choo train theme, as Mike's favorite childhood book is the "Little Engine That Could"...and it would be either that or the Hokies! Hope to have pictures of the nursery up when it's all ready to go.

30 Days of Rachael: Day 1

Our biggest wish for you, Rachael, is that you may grow strong in your faith in God. We will teach you and guide you and demonstrate our faith for you, but, it will be up to you and we pray, that you will find strength and comfort in Him. You are a child of God and with Him, all things are possible.
We love you, little girl!