Bella update and Zach pics too

First of all, thank you for all the prayers and well wishes for our little girl. She is a tough little fighter and we are very appreciative of all of the loving support that she has. Bella was released from the hospital Monday afternoon and came home on no oxygen and no breathing treatments, just an inhaler that we are instructed to use as needed. She has only needed it once since we've been home. She is also on some antibiotics to battle the pnuemonia and make sure that she fully recovers from this latest episode. You know when she has recovered when her appetite returns and boy did it ever, this morning she woke up at 530 asking for waffles. It is so cute because she wakes up and she says good morning mommy, good morning daddy as she wakes us up. Then she asks for her juice and waffle. Her vocabulary has really exploded, she is stringing together sentences and can really communicate what she wants and needs now. Here are some pics of our little princess.





Zach is just chugging along. He is growing and become so mobile so fast. He is trying to stand up already and can crawl across a room almost as fast as his sister can walk across the room. They are starting to play together and we are having to teach them to share. Zach is such a happy baby, everyone is so amazed by how much he smiles. Here are some pics of the younger big brother! I've decided that since he will likely always be bigger than her, probably by the age of 1 that he will be her younger big brother :)




One last thing to leave you with, Machel and I follow KV-Pharma stock and look for updates all the time and some interesting developments are happening. There has been a lot of pressure placed on KV-Pharma and now it looks as if the government is going to step in. The are launching several price gouging investigations but they are also apparently going to continue to allow compounding pharmacies to make similar progesterone, I assume at the previous price point of 10-20 per injection. See the following article. http://www.reuters.com/article/2011/03/30/us-kvpharma-idUSTRE72T6Q820110330?feedType=RSS&feedName=globalMarketsNews&rpc=43

Thanks for all of the love, prayers and support, may the Lord be with you all.

Hospital Stay

Goodness, where do I begin with this post...

It seems the kids have been sick, one or the other and sometimes both at the same time, since we got to Houston. With the combination of daycare, climate, and pollen the ick is an inevitable evil. Two weeks ago Isabella came down with an almost 105 fever. It was roughly 3:30am Saturday March 12 when Chris loaded her up for the ER. After a couple of hours she was released following a blood count, x-ray and nasal swab. At the ER trip, no test showed anything major so they sent her home with strict Motrin/Fluid/Rest orders. So that's precisely what we did...as always when she is the slightest bit ill. The rest of that day she seemed to be progressing to recovery. Sunday the 13th however she decided to start hacking coughing and running a fever we just couldn't break. Monday the 14th I called the pediatrician 3 times to discuss her status and finally got her in for a 2pm appointment. The pedi visit showed she had a pretty bad ear infection and bronchial restriction. They sent us home on amoxicilin and a nasal steroid to use with albuterol through the nebulizer as a breathing treatment. At 5pm that same day, her nasal swab results from the ER were sent to her pedi's office...but the wrong doctor. The bad thing was that the wrong doctor read them and forwarded them to his nurse instead of her actual pedi. The test showed she had Metapneumo Virus, which is a respiratory virus that is a cousin of RSV. No one ever called to let us know this was her diagnosis. We kept her home from school for several days and by the 18th she seemed to be doing significantly better. Her nurse that works with her pedi called that day to check on her, so Chris told her nurse that Bella appeared to be recovering well. There was still no mention of this virus being in her lungs. Sunday the 20th (the day our little man turned 7 months!) she took a turn for the worse. Her breathing became labored and rapid again. It almost seemed as though she was asthmatic. She also had several fever spikes of right at 101. This all occurred Sunday evening so we wanted to see how she did during the day Monday. School called Monday to say she was coughing horribly so Chris picked her up and I made her a doctors appointment for Tuesday morning. The pediatrician immediately said something about her being able to recover from the respiratory virus. My stunned reaction was, "what are you talking about?" She immediately started to cover her tracks about the huge error on their offices part. I asked a series of questions about doing a chest x-ray, whether allergies could be an issue, is she asthmatic, etc. Her response was that all of this is related to the virus in her lungs; let's give her an oral steroid to take on top of the breathing treatments and see how she is doing by Friday. This doctor knows Bella was a preemie, has battled with allergies on some level with a recurring cough, as well as been on breathing treatments many many times. I don't understand why you wouldn't cover all of your basis's at this visit. It was my fault to walk away from that office not demanding a further evaluation of her lungs. By the 24th her breathing and coughing was no better. I scheduled another appointment for 8am the 25th. By 9:30am Friday we were checked into the hospital. The doctors visit showed her airways were no better, her breathing was just as labored and crackly with a string of wheezing. The x-ray (that should have been done Tuesday) showed build up in several parts of her lungs that appeared to be collapsed pockets in her lungs. We got her to the new Texas Children's West Campus where they knew she was coming and wasted no time tending to her. [Awesome and very knowledgeable medical staff...I felt so comfortable having her there.] After a series of rapid breathing treatments they did another x-ray. The pediatrician on staff diagnosed her with pneumonia combined with an asthmatic reaction. After all they could do in 24 hours with loads of antibiotics, oral steroids, fluids and continuous breathing treatments (yes, this means she had a constant albuterol pump/mask hooked up to her face), they transported her to the TCH at the Medical Center (downtown Houston) for extensive medical attention. The West Campus facility has a current policy that if a child needs any kind of intensive care treatment, they must be transported to the Medical Center. Bella is currently in the low level pediatric icu (a step-down unit/transition). Her vitals were really all over the place Friday and Saturday. Through last night they were able to move her from constant breathing treatments to every 2 hours to every 3 hours and even on to every 4 hours when I spoke with Chris at 6am this morning. As I sit by her side in the hospital, she is sleeping with a resting heart rate of 138, respiratory rate of 33, and oxygen saturation of 93 on 1L of 100% O2 through a nasal cannula. She is making a slow recovery, but it is to be expected with her history. God has done amazing things with her in so many ways. Get this...on Friday afternoon, when Chris brought me food, he was entertaining her while I ate and out of no where she began singing Amazing Grace. We sing it to her every night at bedtime, and she will sing Jesus Loves Me, but she has never sang Amazing Grace for our ears. Tears started rolling down my face into my salad. God is good!!!

Each pediatrician we talked to said that this virus did a number on her lungs because of her prematurity. I even asked one doctor about the fact that she was not granted a synigis immunization this year. They felt that played a factor in her contracting the initial respiratory virus and not being able to fight off it's affects. The synigis shot is just like the stupid makena/17p issue going on right now...a super expensive drug that insurance companies will cover under a certain set of rules and extensive guidelines...when it should be available to every child that will truly benefit from its purpose. (Speaking of which, I got a phone call from the Texas Communications Director of March of Dimes on Friday while I was sitting at Isabella's bedside. She wanted to discuss the makena/17p issue and the connection between March of Dimes and the pharmaceutical company. Needless to say she called at a bad time and I went off on her. I wasn't rude, well too rude, but I let her have quite a bit of pent up frustration and the damage to children that will be done as a result of increased prematurity. My daughter being a prime example of children that suffer from long-term affects of prematurity.)

Fortunately but unfortunately, Chris' parents were in town this weekend. We had (as well as they) been looking forward to this trip for a while. We had a few plans to take the kiddos out and do some fun stuff on Friday and Saturday. Instead of making it to the Children's Museum and the Zoo, their time was spent with Bella in the hospital. But it was such a blessing that they were here to take care of Zach. I know that was great bonding time for them with him one-on-two and they enjoyed every minute of it. So thanks Nana and Papi for taking care of our little man! My mom hopped into town yesterday afternoon with Auntie Kim (my mom's best friend). They helped me take care of Zach last night so I could get some much needed sleep. It's awesome being so close to family and having a family that is so caring and loving!!!

Well, please pray for our baby girl and that she comes back strong. We will keep you updated on her progress and release from the hospital. Last we heard the game plan was for release tomorrow sometime. God willing that pans out!

Chris will be posting pictures from home, so check back...

Here are the pics
Bella in the hospital



Little man growing like a weed

Positive Steps...But a Long Way to Go

As a follow-up to our last post, March of Dimes is still on our bad side. Fortunately the entire 17P/Makena issue has exploded and so many people have voiced concerns. That is amazing and great news! Chris and I have been quite frustrated with MOD simply piddling along not making much of a controversy of this issue. On Tuesday I received an email from the Houston March of Dimes family coordinator who received our information from Midland. She wanted to thank us for being a part of MOD/March for Babies and looked forward to meeting us. I promptly sent her an email stating that she wouldn't be meeting our family any time soon unless she can provide me with evidence that the relationship between KV/Ther-Rx and MOD would change as a result of the latest greed campaign of the drug company. I guess that got me on some type of mailing list. About an hour ago I received an email from the MOD Texas Communications Director with a nicely detailed list of the actions MOD has taken over the last week and a half. To the dismay of so many, the MOD effort started out weak and with little effort. With the uproar that so many have made, it appears that MOD decided to up the anty as of yesterday. Here is the letter Dr. Howse sent to Ther-Rx:



It is sad that it took so much out cry from their supporters for them to make this plea. MOD should have come out with this statement from the get-go! Now they have lost the respect of so many. I can guarantee that we are still on the outs with this group, will not be fundraising this year (if ever again), and I still plan to actively renounce MOD through letters to any necessary party that will make their actions known and hold MOD accountable for their connection to KV/Ther-Rx. Like I have repeatedly told people, I can give that money to UVa Hospital, Texas Children's Hospital or our church instead of MOD. If this group ever wants our support again, they will have to stand by the above claims as well as pound the statistics into the medias head about what is really being done to make Makena available to all women that need and deserve it for their precious unborn children.

Thanks for letting me rant...

March of Dimes

In the last 12 hours, our family has gone from huge supporters of the March of Dimes and the work they do to being grately disgusted by their backdoor politics. As most of you know, during the last 18 weeks of my pregnancy with Zach, I received a weekly progesterone shot. Over 10 years ago research done regarding women's hormones levels during pregnancy revealed that low levels of progesterone in pregnant women sparked preterm labor. Through a certain concentration of progesterone injections, a woman with this complication can remain pregnant for the needed time to make sure her baby is not born too early. To quote an article we read, "It is a compounded drug, widely available, at a cost of about $10 to $20 per injection. In the world of pharmaceuticals this was a bit of a bargain drug. This past week a drug company, KV Pharmaceuticals won FDA approval to be the exclusive manufacturer of this drug which KV Pharma has named Makena. 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. 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 expenditure of $6,000 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. So who pays the bill for these increased costs? We all do through higher taxes and higher healthcare premiums. How much is regulatory approval worth, anyway? That seems to be what we're really arguing about. After all, patients are getting the same drug, in the same formulation, dosed the same way as before. But now it's FDA-Approved!"

It turns out that March of Dimes has been receiving funds from KV Pharma for years and is in full support of their exclusive rights to the shot. So a charitable organization dedicated to the safe keeping of inutero babies and stopping preterm births, has openly supported KV Pharma, the exclusive rights to P17, and continues to take dirty money? And you expect your dedicated fundraisers, most of who had premature babies, to be okay with this? Sorry, cannot do!!! I fully believe that my son born at 36 weeks would have been significantly early if not for those shots. MOD has lost my respect until they can redeem themselves or prove their involvement of a worthy nature in this political triangle.

As always, our family thanks you for your continued support in our fundraising efforts, but due to these recent actions we will not be walking for the MOD this year and in fact will stop our fundraising for them until a clear explanation is provided. We will also be writing letters to our congressmen, MOD, and the FDA. Knowledge and information is key to making informed decisions. We encourage you to get all the facts on this, and every political issue facing our great nation today. We have the right to know, the right to speak, and the right to make our own path. Our families path will be support an organization of honest character dedicated to the well being of the people they serve.

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

Blog Post on Forbes
http://blogs.forbes.com/davidwhelan/2011/03/11/is-kv-pharmaceutical-a-flat-out-evil-company/?partner=yahootix

HAPPY BELLA DAY!!!

Two years ago today we brought home our precious angel after 99 days in the NICU! We celebrate this day with great joy that God brought our baby girl through so much with incredile determination and fighting spirit. Here's a look back at the amazing hurdles she's surpassed with flying colors...

3 Days Old

Leaving the NICU

A Helmet and Plenty of Therapy

1 Year Old

Playing with my Bella Day Balloons


Blessings, Peace and Love to All!!!