Monday, April 21, 2014

Time for your Check-up



Blake's 2 year check-up time! Blake came in weighing a small 21lbs 9 ounces...we are getting there we've been stuck in the lower 20's for quite a long time now. Still not making it on the growth charts....his height however he is in the 10th percentile for his actual age at 33inches!



Blake will be meeting yet another new doctor at the end of this month, a Pulmonoglist from Riley. Blake has had an area under his right chest that concaves in for what seems like forever. So for our peace of mind we are having it looked at, hoping it is nothing! Prayers would be appreciated!!



You can see the area slightly below his armpit.


We have also over the past few month been taking Valuim for his cerebral palsy for muscle tone. It has been a GREAT help. Zach and I were very hesitate at first to start the medication worried it would hinder his progress by Over relaxing his muscles. However, after many discussions weighing pros and cons we decided it best to try it....and if we didn't like the effects we could stop the medication! However, since starting it, Blake uses his left hand much more, he is able to pull up on his toys, not perfectly mind you, but pretty darn good! And hopefully now that we have mastered hands and knees we are hoping to start gait training with a Walker this week!!














2nd Birthday

A few weekends ago we celebrated Blake's 2nd Farm Birthday! It was a complete success with beautiful weather and despite missing a special little boy we felt an overwhelming sense of love all day!!! Happy birthday sweet boys!

















































Tuesday, April 8, 2014

Forever changed.

1 year 11 months and 26 days, 727 days ago.
That's how many days I've lived without you.
That's how many days it has been since I held you in my arms.
That's how many days it's been since I felt the absolute worst pain in my life. It was a deep, sharp pulling tearing, in my heart.
You would be turning two on Friday.
I am usually strong. Forgive me, but today I can not be. It came to me out of no where. It crept up without warning. Without prompting. That ache....that pain. It's back. That excruciating tear, this deep hole literally dead center of my chest. It's like you see in movies, when peoples lives flash before their eyes. All I see when I close my eyes is you. You in my arms as I pleaded to God to not take you. Your Daddy holding us both. I bargained. I begged anything...I would have done anything to not have to let you go. I close my eyes and see that monitor. Your heart rate slowing. I remember that numbness that followed. That deep sense of losing myself. I was no longer me. I would never be the same. That bright eyed, super talkative, maybe a little too hyper self that was always smiling. I was sure I would never be that girl anymore. She was gone. Forever changed.
But....surprisingly. With time....
I laugh. I smile. I still say super silly jokes. I'm still really talkative, and maybe a little too hyper. Most importantly I genuinely feel happy. I am however, forever changed. Forever a different person. I will forever ache for you. I will forever wish I could celebrate every birthday with you. I will forever have this pain in my chest. It's been there for 1 year 11 months and 26 days. It's been there every one of those 727 days. That pain is a part of me. A constant reminder, that I loved someone so much, that my heart aches for him everyday. Permanently a part of me. You are mine. My very own, and I miss you so much! Happy early birthday my dear. Your mommy loves you.




Tuesday, March 4, 2014

Marching on.











It's that time of the year again. The time we put on our tennis shoes, our team Hargis shirts and walk rain or shine in memory of our sweet Conor, and for all the other special babies we know out there who also sport wings. It's the one time of the year I can join my friends, my family and be surrounded by people who care and understand. They understand the NICU roller coaster, the ups the very tragic downs, and even the whiplash you have for years later. We join together to raise awareness and share our own experiences with one another to help fight prematurity!

To help support the foundation please purchase a tshirt for the Hargis Team. They are $20 and proceeds go to march of dimes. https://www.booster.com/teamhargis?share=6341393994768355


If you do not want a shirt please still donate to the foundation itself at http://www.marchforbabies.org/team/t2085021

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.
PLEASE HELP BY DONATING...EVERY DOLLAR COUNTS.
Its not about which team your on, or which team raises the most money. What it is about it helping!













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!!

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.

Sunday, February 9, 2014

Congenital Heart Disease awareness week






This week is CHD awareness week. Congenital Heart Disease is the most common birth defect in preemies, AND full term babies alike. It leads to more deaths of newborns than all other birth defects combined!

Though Blake went through a multitude of problems and obstacles I am one of the lucky ones whose child had a very minor and usually treatable CHD! He did however require surgery and it was one of the most terrifying surgeries he had. He was so small weighing only a little over 2 pounds when he had the surgery. The type of CHD that Blake suffered from made it where his heart could not regulate the blood flow between his pulmonary artery and aorta in his heart. Usually this can improve and close with time or can be present through your lifetime and not cause problems. However Blake's PDA was causing extreme problems, worsening his respiratory and cardiac status every day. The surgery that he had required the surgeon to enter through his back left side and deflate his left lung to suture close the open vessel between the two. Thankfully it was successful and he went on to improve tremendously after the surgery...actually being able to come off the breathing machine only a little over a week later. (That may seem long, but for those that know our story he had already been on the ventilator for over a month and they believed he would never being able to.)

We were on the lucky side of things. We witnessed a child in the NICU have the same surgery Blake did, and unfortunately he did not respond well. We witnessed multiple children's parents go through surgery after surgery. I have very close friend whose child had a more severe case of CHD requiring open heart shortly after birth. Unfortunately, despite the best care, their daughter became a very special angel. (A very special angel indeed...I can only hope she and Conor are playing, laughing and are the best of friends in Heaven)

CHD affects 1.8 million families in the U.S. Every1 in 100 children in the unites states are born with a type of CHD . There are a variety of different types. Although it affects so many individuals in the US there is very little resource out their for the families they affect!

The mended little hearts organization however continues to grow and provides so much information, they state "we hope to raise public awareness about conditions that affect babies. It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults."

So let's remember those very special angels, the children/adults still struggling in the NICU, PICU, and in hospitals across the United States. Support and become knowledgable!!

I love someone with CHD and he wears the scars to prove it!












We couldn't be prouder to have this little man covered in scars! Each scar reminds us how big of a blessing our little miracle baby is!









Thursday, January 30, 2014

Determination.




Blake has more struggles than I would like my almost two year old to have. A toddler should be running around, throwing toys, laughing, playing and making a mess. My toddler however is in a constant fight with his body. His brain tells him what he should be able to do, and his body unfortunately does not always cooperate. It takes Blake a little longer than most children to reach developmental milestones. Blake started crawling when he was 18 months old. He can not walk, or stand unassisted but as of this past month Blake has become more expressive, more curious and has been constantly wanting to pull up on things. Unfortunately Blake has a hard time with his left arm and it's tight muscles tend to make it very difficult and he will usually throw himself back out of frustration and give up. Which is maybe one of the most heartbreaking and hard things Zach and I have witnessed lately. The pure frustration alone can make us feel so bad and wish the hurt away. However after a lot of frustration, determination and persistent practice through repetition, we are ALMOST there!!!


This video is from today's therapy session you can see how hard he works! Such a trooper!

YouTube Video










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