Wednesday, March 30, 2011

Synagis

We got our last Synagis injection of the season today!  Poor Judith had to have 2 separate shots because she's over the limit for the amount allowed per leg.  A fact I didn't know is they base the Synagis dose on weight, and apparently they can only inject so much into each leg.  So 2 separate shots it was!  She's been eating well, but has been sleepy most of the day, and I'm hoping this means she'll sleep well tonight.  Currently she's zonked in the Moby.

The dogs have been very excited the last 24 hours, and it will continue into tomorrow.  They had visitors last night (our pastor came for our pre-baptism meeting), a visitor today (my dad came up to help out so I could get some work done without having to worry about holding Judith all.the.time.), and will have 3 visitors tomorrow.  I'm excited - my aunt, uncle, and cousin's son are coming for a visit!  My aunt will finally get to see the house, and all 3 will finally get to meet Judith!  I'm curious to see how my cousin's baby (well, more like toddler!) will react to small dogs - they have a rottie, so he's used to a very big dog roaming around.  Anyway, you would think that the dogs are neglected daily or something the way they act when company comes.  Granted they don't get 100% of the attention 24/7 like they used to, but they still get a fair chunk of my time on any given day.

And on a completely random note, I'm glad the weather's finally going to warm up over the weekend into next week.  Keep going, weather - I'm ready for flip flops and putting Judith in rompers/sunsuits!

Tuesday, March 29, 2011

Appointments

I never expected that having a preemie means so many appointments!

Last Friday, we made the trek to Hershey, this time for the next phase of the study.  The nurses loved being able to see Judith, and they were very impressed at how she's grown since she was born.  Her weight was 8 lbs 2 oz, and she's 21 inches long!  We have officially outgrown any Gerber newborn clothing because she's getting so big, and the others will only be a few weeks behind.  I started putting her in some of the 0-3 month size sleepers at night, and they're huge on her...but not for long!  Just like with her preemie clothes, we're outgrowing most of them in length long before we are for weight.  But I'm rambling - back to Hershey!  The pediatric specialist that they bring in to examine the babies was very impressed with Judith.  He knew right away from looking at her that she's a preemie, but her exam couldn't have gone better if we had asked.  He told us that she's fine and that we have a perfectly healthy baby!  He couldn't detect the heart murmur, so I'm guessing that if it's still there, it's very, very small.  We'll find out next week when we see the pediatric cardiologist for her NICU follow-up.

Judith's last Synagis shot for the season is this week, and she has her 4 month shots and well-baby visit next week.  After that, we have the clear to go out!

I'm getting extremely anxious to take her out into public, and an event from Friday did not help.  On our way back from Hershey, my mom, John, Judith, & I stopped at a local Vietnamese restaurant to pick up lunch.  I stayed in the car with Judith, and everyone else went in to pick up the food.  I was sitting in the front seat, and looked back to check on Judith.  Next thing I know, there's some random old lady looking inside the car, literally plastering her face up to the window, staring at my baby.  I'm glad I had locked the doors, because I didn't know what she was up to, and I was getting nervous.  Then she starts tapping on the windows, and I gave her a dirty look.  Then she sees me in the front seat (it's not like I was hard to miss - I had on my bright lavender winter coat), and starts banging on the windows, saying something about how she didn't think anyone was in the car, blah, blah, blah.  I yelled, "Well I'm obviously in here!"  She stopped banging on the windows, but continued to stare at Judith while she was getting into her car.  It was beyond creepy, and I swear the old coot was ready to bash in the windows the second she saw Judith sitting in the car seat.  She's darn lucky that my mom's car alarm didn't start going off from her banging on the windows.  Now that I think back on it, I should've blown the horn or something to scare her off.  The whole thing was beyond weird, and now I'm worrying about what people will do to Judith when they see her out in public.

Wednesday, March 23, 2011

Wow!

Judith was at the pediatrician yesterday for a reflux follow-up/weigh in.  She's now a whopping 7 lbs 13 oz!  Holy weight gain Batman!  No wonder some of her newborn stuff has been getting snug!  I knew she was gaining, but I thought she would be closer to 7.5, not 3 oz shy of 8.  She did this in 3.5 weeks too!

I cleaned up her dresser drawers the other day, moving her preemie clothes and any small newborn ones into a storage tote.  I honestly have no intentions of ever selling her preemie stuff - let's face it: the odds of the right person coming to a yard sale to buy it is low.  But it'll make good doll clothing for her once she's a bit older.  I did that with my old clothes, and loved having so many little outfits to put my dolls in.

The other great news is the end is near.  No, I'm not referring to the Second Coming, a meteor strike, or a zombie invasion.  I'm talking about the end of RSV season!  We're going for her final Synagis shot of the season next week, and once she gets her 4 month shots a week and a half later we're in the clear to go out in public.  We have a partial clear, more or less, to visit with family/friends at small gatherings.  John & I fully intend to keep precautionary measures for a while: once she's allowed to go to church, it's going to be a strict "look but don't touch" policy with the only exception being her baptismal sponsors (we want her to get used to them before the big day).  After her baptism in May, we'll shift more toward a "sanitize your hands before touching" mode.  It's going to be hard for people to not touch, but since stuff is still lingering - and lingering late - we want to make sure that she's protected as much as possible for as long as possible.

So for all my "church readers," Judith will be making an appearance in a couple weeks.  Have patience - you'll get to meet her soon!

Monday, March 14, 2011

Weekend

Judith had lots of visitors this past weekend!  My parents came like normal, but Judith also got to spend time with all 3 of her great-grandparents: Saturday with Great-Grandma & Great-Grandpa M., Sunday with Great Nana.  They love getting to see her, and I can't wait for RSV season to be over, because I can then take day trips (with doggies in tow, of course!) to visit everyone.  It'll give me something different to do as well.

I went to Babies R Us on Saturday to pick up a few things that we needed (and some that we didn't), and came home with 6 infant gowns for Judith to wear at night, a huge box of size 1 diapers (hooray coupons!), and 3 new spring/summer outfits.  What can I say - I'm a sucker for all that cute clothing!  I know we're going to have to do some re-stocking of her clothes though.  Originally I was figuring that she might be in newborn sizes for a week or 2, then move into 0-3 for a bit.  Wrong!  We've been in newborn sizes now for about 2 months, and Judith isn't showing signs of outgrowing a lot of things anytime soon.  So it's looking more and more likely that she'll be in 0-3's for the spring and at least part of the summer.  Problem is, about half of what I have for her in 0-3's is geared towards fall and winter.  Moral of the story: it goes to show that no one really expects and plans to have a preemie, particularly one as small as Judith (or smaller for some people), and stocking up too much on clothing before birth may not be the wisest maneuver.  I have so many cute outfits that Judith might be able to wear once, and that makes me very sad for some strange reason.  I like to get a lot of mileage out of her clothing, since I know she'll grow out of it soon, and we may not have another baby.  And the fact is looming that all of those cute outfits I bought in advance will have to be put in storage.  Boo!  :-(

Now that I have you feeling all sad and stuff, let's talk about groceries.  Oh.my.goodness.  The prices are RIDICULOUS.  Mom & I went to the store briefly Sunday afternoon to get milk and cereal.  I did pretty good on impulse purchases, and only added a pack of white American cheese to the list (yum yum!).  1 gallon of milk, 1 block of cheese, and 7 boxes of cereal later, we spent over $30.  The gallon of milk alone was almost $4!  Now I'm all for dairy farmers getting a fair cut of the profit, but the fact that we had to pay that much money for so few items is certifiably insane.  And I would say at least half of the boxes of cereal were pathetically small and seriously overpriced for what you get.  They were on special too!  Ugh!  Oh, and the kicker: that will last us *maybe* 2 weeks.  John has a serious addiction to cereal and eats it constantly.  We should buy stock in Kellogs and General Mills, because I swear what we spend on cereal alone in a year sends the cost of said stocks soaring.

I don't think I mentioned this before: we had our meeting with Early Intervention (EI) on Friday.  We have the information on EI itself, but basically at this point, Judith is a little too young to test accurately, so we're doing a program that's a step before EI services.  They're going to monitor Judith for developmental delays through a series of questionnaires that we fill out bi-monthly.  If there is something that turns up as a concern, then we move into EI services.  This will go on for the next 3 years - after that, if she needs further intervention (which I'm hoping is not the case), we go through the IU until services are no longer needed.  One thing they will do, however, is test her in a couple of months to see where we're at.  So we'll see how that goes.

Friday, March 11, 2011

Please Help!

I am copying and pasting this post made by a fellow Preemie mom on The Bump.  It is in regards to the new P17 shot (soon to be known as Makena).  For those that do not know what this is (or why I'm so adamant about it), it is a progesterone shot given to women who experienced pre-term labor and a subsequent premature birth during a pregnancy.  The mother is given the injection starting sometime in the second trimester, and continues the weekly injections to the end of her pregnancy, ideally at 38-40 weeks (or full term).  At the very least, it can help the mother reach a gestational goal as close to the term mark as she can, and can help prevent the birth of preemies before 32 weeks.  I know many women on the Preemie board on The Bump are receiving the shots, and I also met a lot of moms from our NICU that are and will be eligible for the shots in future pregnancies.  For me, it has no benefit because Judith's premature birth was because of my severe preeclampsia and IUGR (I never went into labor).

I'm asking that you contact as many of the organizations outlined as possible to help all of the families that are eligible for the P17 shots.  The new cost (now $1,500.00 a shot, up from about $10 a shot) will more than likely cause more premature births, rather than prevent them, because families will no longer be able to afford the shots.  Here is the post:


In reference to the insane news of the tremendous increase in the preemie preventative progesterone drug outlined herehttp://www.npr.org/templates/story/story.php?storyId=134400038&sc=tw, here is a response from a fairly well-known high-risk doctor regarding this.
Written by Dr Davis (www.abbyloopers.org):

"As many of you have become aware, KV Pharmaceuticals has received FDA approval to be the exclusive distributor for P17. They are planning to charge $1500 per injection for a total cost, per pregnancy, of $30,000!!!!
Pharmaceuticals has received FDA approval to be the exclusive distributor for P17. They are planning to charge $1500 per injection for a total cost, per pregnancy, of $30,000!!!!

The current cost is $10 per injection, or $200 per pregnancy.

There are several points that I would like to emphasize.

The rationale for a commercial maufacturer is to ensure a standard concentration. In theory, this can be a problem with compounding pharmacies although the vast majority of the compounding pharmacies producing this product tat present have extremly exacting standard. The March of Dimes has, unfortunately, bought into this rationale with absolutely no proof that a variation in strength is of any clinical significance. By law, once a drug is commercially available, compounding pharmacies must stop production of that drug.

We have been using P17 for the past ten years from these compounding pharmacies with obvious beneficial effect. So where is the rationale for this change?

March of Dimes receives several million dollars a year in support from KV Pharmaceuticals - I wonder why! This suggests to me that March of Dimes can be bought. I, personally, have informed the March of Dimes that I am ceasing all support of their organization, financial and otherwise, until they divorce themselves from KV Pharmaceuticals and support for Makena. They do not realize that they are going to cause an increase in the preterm birth rate, not a decrease. At best, there will be no change other that a massive over-expenditure of health-care dollars.

You have seen the propaganda stating that no-one will be denied the medication because of ability to pay. However, what they don't tell you is that they are going to use very strict criteria. In essence, the only women who will qualify is those who have had a prior preterm birth before 32 weeks secondary to preterm labor. To illustrate this more fully, Aetna/US Health care (one of the largest insurers in the country) covers this therapy when patients meet their strict criteria. Currently, they are paying for P17 for only 1,000 women nationwide per year! There are 4.2 million births in the US annually. 10 - 15%, or 420,000 to 610,000 are premature. And Aetna is only going to cover 1,000 of these women.

30% of all prenatal care is covered by Medicaid. An additional 10% is covered by charity care. KV is going to insist that since this care is not coming out of the patient's pocket, the cost should be borne by Medicaid and charity care. Currently, we can provide good prental care for about $2,000 per pregnancy. So for every patient placed on P17, we have to somehow find away to cover an additonal 15 pregnant patient. And who pays the medicaid and charity care bill? We all do through higher taxes and higher healthcare premiums!

Studies show that approximately 30 women need to be treated with P17 to prevent one preterm birth. At $200 per patient, this is very cost effective. That is an expendure of $6,0000 to save the average of $51,000 per preterm delivery. With current pricing, we will have to spend $9 million dollars in P17 therapy to save $51,000. Does this make sense? And people want to know why health care costs so much.

Most of you (greater than 90%) who will be on P17 now will be faced with doing without or paying $1500 per injection out-of-pocket. If you are currently on this medication, make sure that your doctors order enough for you right away to cover the enitre pregnancy. You could have as little as one week. If you are early in pregnancy or planning a pregnancy soon, talk to your doctors about getting this now to have on hand. Most suppliers warrant the drug to be effective for one year.

So, what can you do?

Firstly, 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/contac...nators_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. Let's make this issue go viral!

If we can get enough of a protest mounted, we stand a chance of averting this "rape" of the healthcare system that is motivated almost entirely by a profit motive. Even if KV decides to not manufacture the drug for fear of losing money, we will be better off than with what they are currently planning.

Thank you.

Dr. D

Saturday, March 5, 2011

Weekend!

Judith, John, & I all had a busy week, and I'm so glad it's the weekend!  I felt so accomplished Wednesday and Thursday, but after the appointments on Thursday  I wanted to do nothing except veg out and care for Judith.  Friday was a nice, quiet day at home, and today John's parents and our niece came over for a visit!

I received a phone call from our pediatrician yesterday - she had the results of Judith's head ultrasound.  Everything is... *insert drum roll*







...normal!  No IVHs (brain bleeds) developed since her last head scan when she was about a week old.  I was a bit concerned about one developing later since they never did a repeat scan (her first one came back completely clean as well), but I honestly forgot about it as we continued on our NICU journey and our time at home.  Part of the reason for this scan, though, was because of the meningitis - they have to keep an eye on how Judith is developing, because meningitis in an infant can cause developmental delays (like we don't have enough of those to worry about) and other issues.  It's a good thing that we have the developmental clinic as well, but our pediatrician is awesome and really on top of things!  We also got the next Synagis shot, and will receive the last dose for the season at the end of the month.  We need to stay isolated for the rest of this month, but by April we should be able to go out - right now, there's an unusually late surge in RSV cases when the season would typically be winding down.  So for Judith's safety, her doctor recommends waiting.  This means that Judith will be able to go with me to my cousin's State Police graduation, and she can go to church for the remainder of Lent!

We're going to try something new tomorrow: my dad is going to be here in the morning to watch Judith (my mom's got a nasty cold, so she's banned from the house temporarily haha!) while I go to church.  John has the bell choir scheduled to ring, and needs me there to help even though I'm technically on "maternity leave" until Judith is allowed to go out.  I'm not sure how I really like this.  I know it's not going to kill Judith to be with someone else, but this is the first time I'll be away from her for an extended time (like more than 2 hours).  We'll see how it goes - I know my dad will do just fine, and I have to get over my anxiety and stop worrying about how she'll be.

Totally random: here's a cute picture of Judith with her buddies!

Thursday, March 3, 2011

3 Months Old

I'm going to do something I haven't done before, and address today's post to Judith.

To Mommy's little Peanut:
I hope that one day, when you're old enough to understand things, you'll read this and realize that you truly are a miracle and a blessing!

You are 3 months old today (March 3, 2011)!  I never would have thought that you would be the 6 lb. 13 oz. baby that you have grown to be.  3 months ago, I was worried about all of the complications we would be facing with you.  While we don't know the future and what ramifications we might be facing from the meningitis and your prematurity, I have to say that you are one lucky little girl because you did not have any prolonged complications while in the NICU and you did not have to come home on any monitors.  Go Judith!

I can't believe how fast you're growing, even though you're still tiny for your age!  Your preemie sized outfits have long been put away because you outgrew them so fast.  You're wearing newborn sized clothing, and probably will be for at least another month (unless you surprise us!).  But just like your preemie outfits, the newborn ones will quickly be outgrown and will have to go into storage.  It's not something I like to think about - in some ways, I want you to stay tiny forever!  However, I know that you will grow and change rapidly, and I'm treasuring all of the moments we have together.

I want you to always remember that Mommy and Daddy love you very, very much!  It took us so long to finally get you, and even though you had a rough start (and Mommy is still so sorry that I couldn't keep you where you should have been for a longer time) you are doing very well and surprise us daily with the progress you're making.  You are our precious little Sweet Pea, and we will always love you no matter what!