Monday, February 25, 2013

March of Dimes

Today my husband and I are writing to inform you not of Blake's progress or his daily doings but rather are writing to ask for you help and bring light to a foundation very close to our hearts. The March of Dimes is a charity/foundation that help with research to help improve the health of babies. One of the biggest contributions they have done that directly effected the path that Blake went down in the NICU was their research done on surfactant therapy. Surfactant is a chemical found in all newborns that allow the babies aveoli to stay open and promotes gas exchange. However, babies born prematurely do not produce enough surfactant on their own that the lungs stiffen, and aveoli are unable to stay open causing lungs to collapse, gas exchange to stop, and eventually leading to death. After over 12 million dollars provided by the March of Dimes Surfactant therapy was approved and is now used on all premature babies to help provide the chemical that their lungs are just too small to produce. Blake received several doses in the first week of his life and is a big part of why he was able to make it through the first few crucial weeks. The March of Dimes has also helped to fund many of the therapies used today on mothers during their pregnancy to help get them to full term, as well as other well known medical procedures, medicines that help lengthen a babies life. 

1970s—Indomethacin Therapy. March of Dimes grantees Abraham M. Rudolph and Michael A. Heyman at the University of California at San Francisco discovered that administering the drug indomethacin could be used to correct patent ductus arteriosus, a heart condition common in premature infants. This discovery has saved many babies the risks and pain of heart surgery.

1980s—Prevention of Newborn Jaundice. Basic research by March of Dimes grantees Attallah Kapas, MD, and George Drummond, PhD, led to the development of a drug to help prevent newborn jaundice. If left untreated, newborn jaundice can damage the brain and central nervous system.

1980s and 1990s—Surfactant Therapy. The March of Dimes has a long history of funding research on newborn lung development and has invested over $12.5 million in researchers studying this important issue. One of the most important breakthroughs in this field was the work of T. Allen Merritt, MD, at the University of California San Diego Medical Center. His research showing the effectiveness of surfactant therapy for premature babies with respiratory distress syndrome (RDS) helped convince the Food and Drug Administration (FDA) to approve surfactant therapy to prevent and treat RDS. Surfactant is a detergent-like substance produced in the lungs that aids in breathing. Since surfactant therapy became widespread, infant deaths due to RDS have dropped by over two-thirds. The March of Dimes continues to support research to develop new and more effective surfactant therapies.

1990s—Nitric Oxide Therapy. March of Dimes grantees John P. Kinsella, MD, and Steven Abman, MD, of Children's Hospital at the University of Colorado studied the role of nitric oxide in the regulation of blood flow to the lungs. Their work led to the approval of nitric oxide to treat newborns with persistent pulmonary hypertension (PPHN), life-threatening high blood pressure in the baby's lungs that often interferes with breathing.

1990s—Fish Oil Therapy to Prevent Preterm Delivery. March of Dimes grantee Dr. Sjudur F. Olsen of the Danish Epidemiology Science Center of Copenhagen, Denmark, analyzed the results of six research studies and found that fish oil capsules may help prevent preterm delivery. Since 1996 the March of Dimes has invested over $300,000 to support this and related research.

1998—Perinatal Epidemiological Research Initiative (PERI). A multi-year, $7 million investment to support the investigation of social and biological conditions associated with preterm labor and birth. PERI has produced new understanding related to the development of preterm labor as well as important genetic, nutritional, stress, psychosocial and clinical factors.

2000s—Therapy for Anemia of Prematurity. March of Dimes grantee John A. Widness at the University of Iowa is studying intravenous iron therapy that could be used in conjunction with other treatment options to treat anemia in premature babies. This would reduce the need for babies to receive blood transfusions.

This foundation is such a big help in fighting for the small babies that just don't have the strength to do it themselves. Our team "Team Hargis" will be raising money in memory of our son Conor and in honor of our little fighter Blake.
Its not about which team your on, or which team raises the most money. What it is about it helping! 
  We have several friends,who themselves, are raising money for their families. Please take the time today and donate every dollar counts. For every dollar raised 76 cents is given directly to programs and research that help a babies brain, spine, lungs, heart and eyes. Please visit our site for Team Hargis as well as our friends fighting for the same cause and DONATE!!

If you would like to walk in the march for babies our team is walking April 27th in the Evansville walk! Hope to see you their showing your support!!

Sunday, February 17, 2013


Blake is actually 10 months old, however Blake has an adjusted age (how old he should be) on 6 months 3 weeks. Based on that we try and judge and expect milestones based on his adjusted age rather than his actual...confused yet? So going off his adjusted age we then must give and take due to his bilateral (meaning both sides) brain bleed. So though Blake should "technically" be sitting, rolling over from tummy to back and back to tummy Blake is not. With Blake it is hard to say when or how he will do things as those of you who have followed his story know he likes to do things his own way! So let's start with what Blake is doing!!

Blake babbles...still no distinct words like "mama" or "dada" but I think Blake thinks he is speaking full sentences!

Blake can roll from side to side and has just started rolling back to tummy. However he is still struggling with belly to back, although he does succeed sometimes it takes a lot if work for him. (again usually the easier of the two but Blake had to do the opposite!) we work weekly with physical therapy to get him to roll consistently.

Blake loves to "find" (or in other words eat) his hands and feet. However it is more difficult for him to get his feet all the time due to his lack of flexibility because of his tighter muscles. Again this is why we stretch daily, and have therapy so often.

Blake does grasp toys and plays with them though this is a newer skill and still does not want to use his left hand as frequently as his right. And he likes to "eat" all of his toys and if there are not toys...don't worry your hand will do! As long as he can chew on something he has no complaints!

Blake is still teething...but no teeth have popped though.

Blake's social skills are right at where they should be.
Blake's laughs...giggles and smiles all the time.
He turns to his name.
He knows his mommy and his daddy.
He even knows our dog Aussie.

His head control is actual at his actual age rather than adjusted.

With help in therapy he makes the movements indicating the want to crawl...and can actually scoot across the floor when prompted with minimal help.

Blake sleeps through the night from 8:30pm to around 8am give or take! ( YES we know we are lucky...YES we know it won't last! And YES we are definitely taking advantage and enjoying it now!)

Blake does eat solids but only takes first foods, and still does not finish a whole jar in a day unless its apples or bananas then the little guy will down them!

We aren't crawling, or walking, he is only 15 pounds, and no he hasn't said mama or dada...but we are just not there yet! As a preemie parent, sometimes it is hard to hear some of the frequently asked questions about Blake. Not that we ever get mad or upset it is just a long story we have relive over and over. And our story is definitely not all hearts and butterflies. Then having to explain that no my son isn't a "normal" (I use this term loosely) almost one year old.Some people just don't know... and its okay...why would they know? It's just...well i don't know a good adjective for that feeling I get-the easiest way to describe it- hard.

It's just hard. It is hard when I see babies way younger than Blake doing things he isn't yet. I've written a blog before of our "normal" and the toll it takes. I'm not perfect...I get disheartened and upset sometimes. I've even been in an argument with a random lady in Walmart that " son is really 9 months I'm not fibbin!" I loose my cool sometimes, I get upset, I even get mad. Not that I wish for Blake to be different I just sometimes wish for anything to be easy. Normal. But then again I stop- take a deep breath and am reminded that everything he does do- is one thing no one thought he would be able to ever do. I thank the Lord that he is alive and he moves, and laughs, and smiles! That no he is not a vegetable. That no he is not on a ventilator.

I'm thankful for every milestone met, and every good morning smile I see. (Those good morning smiles are the best!) I'm sure there is a lot I have missed that Blake does... And we have every bit of faith that he will do everything he is suppose to....just in his time.

Saturday, February 16, 2013

10 months

I can not believe this week our lil' man turned 10 months. It's hard to believe and honestly has hit me pretty hard. Monday after work when I got home I held our little boy and stared in awe. Involuntarily tears began to fall, I'm not sure even I knew why. While staring at this perfect child I began to reflect. The visions of the NICU, his incubator, the ventilators, the machines, the first time he opened his eyes, the trip to Riley's, the Ronald McDonald house, the surgeries....after surgeries.....after surgeries!

The waiting, the worrying, the fear, the joy, more fear and more waiting. I remember the days slowly passing, minutes felt like hours. Hours felt like days.

We missed our family. We missed our friends. We missed the happy care free parents-to-be we had once been- we hated being the constant worriers we had become. We feared for our sons life, and we mourned for our gone angel all at the same time.
Reflections.....of the past make me hopeful for our future! Our son turns one in just a few short months, and what a year it has been!! Here is a look at some of Blake's first...compared to now!!

Blake's first hat... Then vs now!

This band used to slide on and off his leg....

Blake's very first outfit!

His first outfit compared to an outfit he wears now!

Blake and his first teddy!

Always LOVED his thumb! Even on the ventilator!

Blake at 1lb 1oz vs. Blake at 15lb

Blake at 3months vs 10 months

Blake's first "documented" smile.

Blake's now beautiful always on his face smile!! Such a happy baby!

Our first ever holding of Blake... Note Zach's fingers beside his head. It's hard to remember him being this small!

Thursday, February 14, 2013


Happy Valentine's Day everyone!!
This year I get the two best valentines anyone could ever ask for! Lucky Me!

What a lucky girl I am!!!!

Location:Posey Ball Rd,Henderson,United States

Friday, February 8, 2013

Comedic Relief

Sometimes all you need is a good laugh.... For those of you that have me on Facebook you may have seen this video but its just to good not to share with my blog friends too! Enjoy the rare capture of Mr. Blakers giggles!

YouTube Video

Preemie Parenthood

Life as a preemie's Mom constitutes for unexpected doctors office visits, trips to hospitals hours away, and the occasional overwhelming feeling of worry and fear. This week has included all these jammed packed into 3 days.
Zach, myself, and Blake packed up Wednesday and headed to Indianapolis for our last appointment with Dr. O'Neil, his developmental pediatrician. We have since been switched to a new doctor that travels from Indy to Evansville for appointments, which will mean a lot easier travel for our family! However, we could not get in with the new doctor until June, so to Indy we went! We were able to stay with friends up there and we were so glad to get to visit! Even if Blake zonked soon after we got there!

Blake's appointment was bright and early that next morning at 8:40. I have dreaded this appointment, it is my least favorite, since the last visit did not go very well. (The post after our last visit with the developmental peds doctor.) Surprisingly, and thankfully this was was a completely different outcome. This time Blake was seen and negativity was not thrown around, comments of what Blake wouldn't ever do were not used every five seconds. Instead we made sure the conversation focused on what Blake WAS doing, and we pointed out all the great things he will do! We controlled this appointment and did not allow any negative, and the things that were pointed out were not new to us. We know Blake's left arm is tighter than all other extremities and we know he needs lots of stretching to help rewire the right side of Blake's brain. Dr. O'Neil thinks it will be good for Blake to increase his therapy to weekly, rather than bi-weekly, so we will be changing that but otherwise we are to continue what we are doing and he thought Blake looked great! Blake is now 6 months adjusted, almost 10 months actual and at his last check he is weighing 15 pounds even and was 26 1/2 inches long. He of course is still small but is following a growth curve the way he should. We will continue with Blake's 24 calorie formula, and continue to feed him first foods.

After Blake's appointment we headed upstairs to the NICU for a visit. Blake got to visit with nurse and doctors and then... All the way from "down the road" Henderson Mindy and Curt just happened to be in for an appointment too so we got to visit with their baby Grace!
Only born a week apart, both at Deaconess and then sent to Riley's and both are such fighters it was about time they met!

On our way home Zach and I made a stop at the Women's Hospital after being told Conor's memorial stone had been laid in the peace garden there where Zach and I sat many days waiting for a miracle and grieving for our son. It means more than anyone knows to have walked up and saw his brick laying beside the others that we read over and over again. That garden was special to us while stuck at the hospital and now has an even bigger importance to us.

As you know Blake had been wearing his cranial helmet now for over a few weeks! We have already seen some improvement but BOY is it tough! Not only did our insurance not cover stating it was a "cosmetic" procedure, but now we might have to have another one down the line! Not exactly what we were expecting or wanting! But it's just money and we always knew he was gonna be an expensive baby...both total worth every penny! We have had some difficulty with Blake's helmet leading to frequent visits to the Orthotics office for grinding down and padding the band. This week lead to TWO visits due to Blake waking up with severely red spot on his face caused by the helmet. Hopefully this new set up with the pads located in the helmet will fix it and allow us a few days without a visit to the Evansville office.

This week has been super busy and jammed packed so we are setting up for a relaxing night and Mr. Blakers for only the second time gets a night away from his crazy parents! It's grandmo's turn and Blake is excited to go stay the night with his grandmo and grandpa Hargis! And not gonna lie after this week mommy and daddy are looking forward to some much needed sleep!

Now for some pictures of our little man over the past few weeks.

Our little greaser in his car...
And then Blake ready for the Super Bowl... Our team lost! BOO.

And then Blake during bath time.

He is so cute I can't hardly stand it!

Blake and Aussie spending quality time together.

Here is Blake on the move at Riley. I can't let him out of my site! Thank goodness it was to the wall and not toward the floor!

And here Blake is being gangsta!
And last but not least my boys...
Snuggling all the time!

How could I get so lucky to have this man and that sweet miracle baby to call my very own!

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