Thursday, March 21, 2013

No Sleep Till Synagis!​

By Jacob Hedgespeth

As we all know Conor was a preemie and with that comes the fear of RSV. Conor was at all high risk levels etc… What’s that Mr. Insurance man? Conor turned 3 months old before RSV season starts? Yeah, you’re right 72HRS BEFORE! This was mind blowing to me. My little guy was on lockdown, we went nowhere, and I mean nowhere. But according to my insurance company 72hrs made Conor’s immune system full term and no worries.

So the second biggest battle I have faced as a preemie dad begins, I have lowered the cannons, and hoisted the flag. I declared war on Express Scripts, and I would not give up. I got the first denial on October 9th of 2012 and sent my appeal letter on October 15th 2012. My letter was stern and very matter of fact. My son was a preemie, he was at risk just due to his weight, and gestational age bottom line any human being would notice this and approve is. As most preemie parents know insurance companies don’t have heartbeat, mindless drones work for them. They see black and white and don’t see outside the lines. I let Express Scripts know that if I didn’t have a response within 5 days the Kentucky Insurance Commissioner’s Office would get involved, and I don’t make false promises when it comes to my son.

​Days came and passed and no response, so as stated I contacted the Insurance Commissioner and let them know what was going on, In the end we were assigned 2 investigators and 1 secretary due to the nature of the problem and the risk factors Conor faced. I thought to myself if they see the importance of this, why can’t my insurance company, who I pay money to every single month, see this!? I was told by Express Scripts who finally decided to contact me that I needed a Doctors statement that Conor needed Synagis and its medical necessity. Awesome, no big deal, Conor’s pediatrician was upset he wasn’t approved so she will help. WRONG! Her office told me he didn’t meet the guidelines. All because of 72 hours everyone felt Conor would be okay through RSV season.

​I contacted Neonatal follow up to get help on the letter, in the mean time I faxed Express Scripts all of Conor’s hospital information including his admit summary, and discharge summary along with his $107k hospital bill. I did that because this is what they faced paying out again if Conor was admitted back to Kosair Hospital. Back to my phone call with Neonatal, I spoke to a nurse who handled Synagis injections, Her words “Well, if they have denied you an appeal will be a waste of time” my response “Excuse me? Nothing to do with my son is a waste of time let’s get that straight.”

​So there I am, with no help from my son’s doctors I am in this fight alone. I turn to social media, I burned Express Scripts up on twitter. First tweet “@ExpressScripts My preemie was denied synagis becuase he turned 3 months 72hrs before RSV season. Do you guys have no hearts? #MadDad” I was in form to send a tweet every hour on the hour to make a point. Second tweet went out with a picture of Conor in his incubator. I got a response. But no victory, I talked to someone who really couldn’t do anything.

​Conor’s Day of victory came on December 12th 2012. My HR department at the Commonwealth of Kentucky called me. They had been made aware of the problem I was having and wanted to help. I was contacted by the HR manager of my cabinet. She told me “Oh honey, this is wrong very wrong. We will override this today and get your son the shot he needs.” I broke down in tears. I had won, I faced a giant and brought him to his knees. Be it only one 100mL vial of synagis that wasn’t cheap I got it, My son would have a little protection from RSV.

​The main point here is if you are having trouble getting approved for this very much needed shot for a preemie DO NOT give up. That is what they plan for you do; you owe it to your child to fight, and fight hard. I would be willing to give advice or help to anyone who needs it on this topic. As now I am a pro in this field and never wanted to be!

Below is my last tweet sent to Express Scripts.

“@ExpressScripts since my employer is self insured the denial for #Synagis was overridden. After a 2 month battle, Conor 1 Express Scripts 0”



Thursday, March 7, 2013

1,000 Reasons To Say Thanks

By Joel Brens-

Today I am humbled by the sheer power of community. While this community is so much more to me than a number, the magnitude of reaching 1k followers on a platform such as advocacy for fathers in the NICU, I know in my heart and mind we are making a positive impact. We have had quite a ride here at Papas, as we are just a little over a month from our first birthday.

I wanted to take a quick moment to say a few thank you's.

To begin, thank you to everyone who is part of this community. Whether Prematurity/NICU affects you directly, you are related to someone or know someone who is, or you one of the many friends who follows us, I appreciate you lending an ear to learn more. The tide is changing in the NICU/Prematurity world and we are most excited about being part of it.

I want to take a moment to recognize a couple of parent pages who have helped me along the way:
Ain't No Roller Coaster
Life With Jack
Reagen's Place
Jaxies Journey
The Mighty River Ryan
Nash News
Urban Flowerpot

I'd like to thank the Preemie Parent Alliance for all their support and unique opportunities they have provided me, including all the organizations that are members, notably:
It's A Preemie Thing
Eli's Hope
Preemie World
Zoe Rose Memorial Foundation
Hand To Hold
Graham's Foundation

I want to thank the professionals who have contributed to our page:
Jodi of Peek-a-boo ICU
April of Lily's Amazing Grace
Dr. Sue Hall

To all the dads who are part of our contributing team:
Mark, Jon, Rob, Jonah, Tom, Jacob, Joe, and Brandon

To my mentors in the preemie support community, who truly do not understand the level of gratitude and regard I have for them:
Aimee Sprik of Life After NICU (support group)
Erika Goyer and Kelli Kelly of Hand To Hold
Keira Sorrells of Zoe Rose Memorial Foundation and the Preemie Parent Alliance

Most of all, I owe my biggest thanks to my biggest fan, my beautiful wife Gena. Without her unwavering support Papas wouldn't exist. Her desire to help support others as well is a driving force for me.

I am so excited for what the future holds, we are just at the beginning of making a real impact for fathers and families of babies in the NICU. Thank you, thank you, thank you a thousand times over.

Joel Brens
Founder, Papas Of Preemies

Wednesday, March 6, 2013

Jacob Hedgespeth- My Birth Story

Connor's first pic
By Jacob Hedgespeth-

Friday July 27th 2012 started like any other day, my wife and I got up, got ready and we headed off to work.  I work in Marion county Kentucky and my wife was working in Washington county Kentucky, so she would drop me off at my office and she would continue on to her office, it was on the way anyway so we thought why not save the gas money. Taryn called me during the day to the to let me know she was just feeling off. She told me she was really tired, couldn’t say seated, and was just uncomfortable. I was worried to say the least and as a rookie mistake I googled the problems. It pointed to preeclampsia.

We had been going to an OBGYN in Elizabethtown, KY and the pregnancy so far had been a very healthy one. My wife was and is a very healthy person; she took every step to ensure that Conor would show up on time and be a healthy baby. On the 27th I told Taryn to contact our OB office and speak to a nurse. The nurse told my wife that everything would be fine, it was normal to have these feelings at this point in her pregnancy. WOW! Was she ever wrong!

At 4:45pm on the 27th Taryn picked me up from work and told me she couldn’t drive home, I would have to do it. Okay no biggie, I’ll drive home. We arrived home and I worked out in my in home CrossFit gym. After that I came back in to the living room and Taryn was just restless. We made the joint decision to go to our local emergency room. The plan was to go to the ER, get treated, get something to eat, and come home and watch the opening ceremonies of the 2012 Olympics. Little did we know that we wouldn’t be returning home that night, or that week, heck that month!

The feeling the whole time we were in the ER was a little off. I felt like someone wasn’t telling us something, I just had that feeling. At this point neither Taryn or I had contacted our parents to tell them what we were doing or what was going on. Finally the ER doctor came in and sat down, it was time it was zero hour and the truth was about to come out, she told us that my wife was suffering from severe preeclampsia and we were being transferred out of Taylor Regional Hospital to our OB’s hospital Hardin Memorial in Elizabethtown.

Okay, slow down here we are going to be admitted to the hospital!? Yep, that’s the story. But wait there’s a catch. They have talked to the on call OB at HMH and they won’t take us because Taryn is only 32 weeks pregnant. So this is how we make the trip to Norton’s Hospital in Louisville, KY right next door the Kosair Children’s Hospital. Oh, the hour and a half trip to Louisville was to be made by ambulance.

After the doctor leaves it is mine and Taryn’s first moment alone. She looks up at me in tears “Jake, I’m not ready for this, I’m not ready to be a mom just yet.” Fellas, let me tell you something, you have never felt so powerless in all your life than to hear the woman you love tell you something like that. I reverted back to training I had as a 911 dispatcher I went emotionless, calm, and faced the problem. I assured my wife everything was going to be fine. I told Taryn I needed to call our parents. I called my dad. To this day I haven’t had a conversation this tough. After explaining to Dad what was going on I finished with four words “I’m really scared Dad” and I stayed that way for the next 27 days.

The ER staff called in the OB group from Taylor Regional in so we could have an OB nurse make the trip to Louisville with us, I knew at this point things were getting real, and moving at the speed of light.

​The whole family was at Norton’s Hospital when we arrived. It was around 1:10 a.m. when we finally got to our room. Taryn and Conor were under constant monitoring, dings and alarms went off all night. I slept about a total of 15-20 minutes that night. So morning came and this whole time Taryn wasn’t able to eat, so me being the genius I am I decided I’m not going to eat until my wife can. Fun fact: IV’s provide fluids and necessities your body needs, which Taryn was on an IV drip the whole time and I was not, I really did think that out!

​The most two vivid conversations with doctors I can remember would be with our new High Risk OB doctor, Dr.How and Dr. Joan Stapp from Neonatal. Dr.How started off with telling us what my wife was suffering from. “Well, you have preeclampsia and only about 3% of women will suffer from HELLP syndrome, and you are in that 3%” I was positive she was going to say she wasn’t in that 3%. She then went through everything that was going to happen with us, she explained the best she could what was going to happen and we would look to deliver around 4:00p.m. Then Dr. Stapp went through everything, how they would help him breathe if he needed it, what we could expect with a NICU stay and she closed with a powerful statement , “With a facility like Kosairs right across the street Conor has a 99% chance of survival.” Those words still ring in my head daily.

​The time has come, it was time to have Conor Wayne Hedgespeth make is entrance into this world. They prepped my wife for surgery and I was left to wait outside the OR. A million thoughts running though my head, my son is about to be born, 2 months ahead of time. How? How is this possible? The whole time I am alone waiting, I don’t have my Dad to give me the advice I need to hear, I don’t have my wife and best friend to talk to so I can calm down. It’s just me and God. So I prayed, and I prayed hard. At the time I said “Amen” if felt like a weight was taken off me I literally felt lighter, now I know that was God’s hand resting on my shoulder, assuring me that all was going to be fine.

​While waiting I met the NICU team. There were about 5 nurses and 2 Neonatal Doctors; they are the best people in the world. They let me know how everything was going to go, what steps were going to be made and how Conor was going to be treated once out. We walked in and I saw my beautiful wife, I could see the fear in her eyes. I grabbed her hand, kissed her on the forehead, and told her everything was going to be fine. All the sudden there was a rush of commotion, then I heard Dr. How say 16:55. I knew my son was out; Conor was born at 4:55pm July 28th 2012. Taryn looking right at me said “Where is his cry!? I don’t hear him crying!” I can see the shear panic on her face. Then I hear my sons faint cry, I have yet to lay eyes on him but I can tell he sounds tiny. The NICU team gets him breathing his o2 sats were at 90% at room air so they ran oxygen to get him at 100% Then Dr. Karen Bibb who was stepping in for Dr. Stapp told me I could come see him.

​I walked the 10 feet which was a mile in my mind. I could see him, I could see my tough little man! I reached out my finger to his hand and said with eyes full of tears “It’s ok buddy, Daddy’s here.” Those little eyes shot open and his cries stopped as to say “Hey! I know that voice! That’s my Daddy!” After that; one of the most awesome yet terrifying hours in my life my Son was whisked away to the Level IV NICU at Kosair Children’s Hospital and would start a journey that would forever change my life.

Monday, March 4, 2013

Celebrating Parents Of Preemies Day

By Joel Brens-

There has been such an incredible surge of support, resources, and community over the course of the last few years in the preemie world. As a community group founder, it is so exciting to connect with people from all across the country. Those who seek support and those who provide it, alike.

One of the best parts of connecting with others is through local events, making face to face connections with parents who understand and can relate to the journey that the NICU brings. This upcoming Sunday is the 2nd annual Parents Of Preemies Day, a nationwide event with multiple cities holding events. Parents Of Preemies Day was created by national Non-Profit Graham's Foundation to recognize the difficulties we face as parents of premature babies. Understanding the desperate need for preemie parents to have a sense of  community, this event allows people to connect on local and national level.

On a personal level, Parents Of Preemies Day means so much to me. As a parent, I understood how important it was to have someone to talk to while we were in the NICU. As a father, I understand the desperate need to let dads know there are others like them who have battled the darkness, the uncertainty, and the emotional toll the NICU brings. But I also want dads to know of perseverance, hope, and love. More important than anything, moms and dads need to know they are not alone on the journey.

Below is a handful of links to Parents Of Preemies Day. For those of you who live in the greater Chicagoland area, we hope to see you!

Facebook Page

Chicago Event

Great Event Pages
Parents Of Preemies Day Milestones: First Diaper Change
Parents Of Preemies Day Milestones: Meeting Grandparents
Parents Of Preemies Day Milestones: First Feeding