Becoming aquatinted with Riley again!

So on Thursday Zach and I took Zach to the doctor because Blake had a very large distended belly that was rock solid- it had become larger last week but really intensified on Wednesday-although he was acting normal, no fevers, eating and drinking fine I just felt in my gut something was wrong. So we had a X-ray and Ultrasound done of his stomach and from there we were told that we could take him but that we needed to go to Riley hospital as soon as possible. Blake's neurosurgeon was called and she warned us we would be here for weeks based on what the radiologist was saying at gateway. We arrived to Riley at 7 Thursday night and were prepped and taken to surgery that night. Blake's shunt had malfunctioned and was no longer draining into his stomach and what had drained had accumulated and was not absorbing but rather was just sitting in his stomach. They cut his shunt at his abdomen site and pulled the tubing out of his abdomen and hooked it to a drain outside the body. This will be there for at least a week if not a little longer allowing his belly to rest and awaiting all cultures to be finalized. They then drained the extra fluid that was sitting in his belly which was almost a liter. He went from 23 pounds 14 ounces to 21 pounds 7 ounces all within an hour.

Yesterday Blake slept most of the day, and had a PICC line placed. He was quite fussy, and lethargic throughout the day.

Blake is more awake today, decided to be more like himself at around 2 this morning...which meant not much sleep for momma and daddy! But we couldn't be happier that he is smiling again! He was allowed to get in a highchair today which he loved. He ate for the first time in two days. He still isn't drinking much still but has IV fluids going. The hardest part is that he will not be allowed to get up or move around for the next few weeks and the more he feels better the more he wants to, and the more he wants too the more frustrated he gets! The externalized ventricular drain comes out from an incision in his belly and is Hooked to a drain. So his shunt remains in his brain but the tubing has just been placed outside of his body so all CSF fluid is drained into a bag rather than into his stomach. (Clear as mud right?) That drain must be leveled at all times and he can not sit up but for thirty minute increments and when he is sitting up the drain is clamped. (Did I mention I'm a cardiac nurse and HATE all things neuro...they make my brain hurt....go figure!) luckily we don't have to understand too much of it as Blake has a sitter at his bedside at all times to protect the drain and prevent infection into the shunt tract. Thanks everyone for the thoughts and prayers we sure appreciate it!!!


Blake on the way to Riley- you'd never know that boy was sick!


You can kinda see how his shirt would not go over his big ol' belly.


As soon as we got to the hospital Blake was not a happy camper.





Blake was taken to surgery and this was post-op in the recovery room. He was extubated and doing well had some issues with his oxygen here and there but really was great!


Yesterday the bub was soooo blah and sleepy.





Until late last night when he was finally able to sit up and watch Mickey!





Today they allowed him to sit in a high chair for a little bit.





That made him very happy!!!

a STEP in the right direction.

Everyday we talk, we tell people what we need, what we want. Everyday we walk, if we want something from across the room we simply get up, move our legs one foot after the other, and we go get what we are after. These things that seem so simple, things that everyone learns at such a young age....these are the things that we take for granted. What if you were unable to tell someone you were thirsty, unable to voice that our stomach was upset. What if when you spotted your, let's say phone across the room and you wanted it- but yet you were unable to get up and get it- or even ask someone to get if for you? What would you do?

Zach and I see it everywhere. Our friends, our family, even complete strangers with their children....the kids are running, playing, wobbling here and there. They want a toy, they go get it. They want a drink, they yell and point "momma drink!". Yet here is Blake, the poor boy can't just get up and go get the ball in the corner of the living room, he can't ask for his sippy so he can take a drink. These simple tasks that are easily learned are things Blake struggles with everyday. And as his mother, his father it's something that breaks our hearts. It's so hard to see the frustration of being unable to communicate. The frustration of not being able to just simply get what he is after. These frustrations usually lead to tantrums of the umpteenth degree...throwing foods clear across the room because that's not what he wanted, or literally chucking his drink clearly at our heads because that too was not what he was requesting. It's frustrating!

We all picture this life after your first child. The life of wonder, and excitement, and play! We never picture a life of therapy, and doctors appointments, and drawing up medications three times a day. We wouldn't change our lives, for it has lead us to be thankful for things that we so normally took for granted. We take pride and get so SO excited over the little victories! It doesn't, however, change the fact that we wish things were just a little- okay ALOT easier for Blake. We wish it didn't take up so much energy to do life's most simple tasks.

We are getting much closer to independence these days though. Today was a BIG day- it didn't go quite as I had made it up in my head but it's still a "step" in the right direction! PUN completely intended.....

Today Blake was introduced to a gait trainer. It is a device to help teach Blake to walk. We have waited patiently, we have worked very hard on getting Blake to a point of independence...being able to crawl, pull up on small things, sitting, and working getting up on his hands and knees. These were all the things Blake had to master before getting to a point of even discussing teaching him to walk. These are the things we do everyday! We stretch, we stretch some more, we work therapy into play everyday! And today we finally get the big pay off!......unfortunately, we didn't take into account that Blake always....ALWAYS.....hates all things new in therapy! So we will count today as an introducing day and really if you minus the constant crying, and terrified look in his face Blake did amazing! He took steps on his own, he moved forward and he held his weight relatively well! We will take it as a win- just maybe hoping for no tears or tantrums the next go around!

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!

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.

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.