Monday, February 18, 2013

A New Chapter- Back to the NICU

Hoping I can provide support for new families.

Social media has been such a blessing for me as we have navigated life after the NICU. It wasn't until we were home with Jayden that I sought out support from fellow NICU parents, perhaps because I had such a singular focus in the NICU: Do everything in your power to get Jayden healthy and strong enough to come home. But once we were home, I had a lot more time to think about everything. Jayden's health, his progress, my ability to care for a medically fragile baby. Papas was created as an platform to share our story. The connections we have made, and hopefully others have made through the community, have been immeasurable.

However, providing support on a personal, face to face level is something I have always held dearest. When we were in in the NICU we had a chance to meet a NICU parent and their graduate at a "Pizza Huddle" at our hospital. Needing to speak to someone who gets it, we had a chance to meet Aimee Sprik, (co-founder of the online support group Life After NICU (support group)) and after our first conversation I felt we could tackle being preemie parents.

We have been working for a while now to begin a program with our hospital for a volunteer program that gives us the opportunity to speak with parents in the NICU, at their bedside, where they feel most comfortable. There was a time I thought it would never happen, but more recently the program was approved! Two moms have already had the chance to go speak to parents, and tonight, for the first time, I will spend a couple of hours back in the NICU. Not for a tour or to drop off gifts, but as a volunteer for NICU parent support. I am equal parts humbled by the trust the hospital has put on our team, excited to try and make a serious local impact on NICU families, and nervous about managing my emotions. We have been waiting for this opportunity for almost a year, and to think I am hours from making the connections I hold most dear is hard to wrap my head around.

For obvious reasons there won't be much I can discuss about this program, but for what is shareable I will be sure to do a follow up post.

I can't believe today is here!

Monday, February 11, 2013

Mom's Say Thanks- Jessi Bennion

By Jessi Bennion

My guy? 

-         - Held my hand as the doctor told us our baby boy wasn’t viable.
-         - Rushed to be by my side for my emergency C-section.
-         - Listened to the doctor give us the grim statistics of our 23 weeker.
-         - Chose HOPE.
-         - Comforted me when I walked out of the hospital doors with no baby in my arms.
-         - Learned the ins and outs of the medical world of the NICU.
-         - Asked the questions and demanded the answers.
-         - Cried with me through every set back, every difficult decision.
-         - Went back and forth between his job and the hospital, two hours apart, each and every week.
-         - Held me when we were told our boy would not make it through the night.
-         - Rejoiced with me when he did.
-         - Never lost his sense of humor or his positive attitude.
-         - Waited and prayed with me through our son’s 7 NICU surgeries.
-         - Kangaroo’d every chance he got.
-         - Got the nursery furniture assembled and the house ready for our homecoming.
-         - Still managed to take me out on dates, to love on me, in spite of our journey, our heartache.
-         - Wrote beautiful words about our son, sharing with friends and family far and wide.
-         - And when that glorious day came, my guy walked us all out of the hospital, carrying our son in his car seat, after four long months in the NICU.

My guy?
-         - Is the best husband and father I could have ever hoped for.

It’s been almost four years since our parenting journey began and Jon continues to be my rock, my partner, and my best friend. He has the most special relationship with our son, Jack. Oh to see the way his eyes light up when daddy comes in the room! No matter how busy we get, with jobs and with this life, through each setback or goal attained, Jon continues to makes our little family his first priority.

When we got married almost 9 years ago, I never could have imagined our life looking like this. Caring for our micro preemie son and all that entails, has been the single hardest and simultaneously rewarding experience. And Jon, I am so thankful we get to travel this road together. There’s no one I’d rather be with. A few paragraphs won’t do it justice, but thanks, babe, for your selfless love.

(Photo Credit: Lisa Kunkel Photography)

Follow Jessi's blog on Facebook and on their website: Life with Jack

Thursday, February 7, 2013

I Choose Hope- Jessica Guthrie

By Jessica Guthrie-

Where does my help [hope] come from?  My help [hope] comes from the Lord, the maker of Heaven and earth.  (Psalm 121:1-2)

When my son came into the world very suddenly at 30 weeks gestation, my whole world was rocked.  I had always considered myself to be someone with a strong faith and conviction – someone who wouldn’t waiver when times got tough.  Boy, was I wrong!  Throughout our NICU journey, hope seemed to continually slip in and out of my grasp.  Hope itself was a journey for me.

As I lay bleeding on my bathroom floor after my water had broken due to placental abruption, I clung tightly to hope.  My heart and mind were consumed . . . I just wanted my baby to be all right.  But the ambulance ride to the hospital was long.  When they couldn’t find my baby’s heartbeat, my hope faded into numbness and shock.  I couldn’t bring myself to speak or even cry.

We arrived at the hospital and the nurses immediately hooked me up to a fetal monitor.  Within seconds the room was filled with the sound of my son’s heartbeat, and I quickly reached for hope again, gripping it almost violently as I was still so full of fear.

Within hours it became clear that my baby needed to be delivered immediately.  The labor was progressing rapidly despite the medicines they had given me to try to slow it down.  And because he was in a breech position, a c-section had to be performed.  Throughout the surgery I felt like I was fighting to stay conscious.  My body wanted to give in to the stress and just pass out.  But my heart was still desperately clinging to hope – the hope that I would soon hear my son’s cries.  When he was born, though, I don’t remember hearing anything except the sound of nurses whisking him away to the NICU.  Hope had slipped from my grasp once again.

After the delivery, my son actually helped me to finally CHOOSE hope.  As I had just come out of the recovery room, the nurses said they would wheel my bed into the NICU so I could actually see my baby for the first time.  And although I don’t even remember the ride there, or anything they said to me, I can recall every precious second that I was first at my son’s side.

We weren’t allowed to touch him at all, and he was lying on a warmer bed.  He looked so peaceful, like he was sleeping.  I asked the nurse if he had opened his eyes yet, and she said no.  She said sometimes preemies don’t open their eyes for a long time.  After we had sat and stared at him for a few moments, trying to soak up every detail of his face before they wheeled me away, my husband told me he thought we should name him Eli.  I wholeheartedly agreed, as Eli was a name we had always liked.  Then, I looked at my precious baby and said, “I love you, Eli.”  Amazingly, Eli immediately opened his eyes!  It was like he was saying, “I heard you, Mom!  Where are you?  I love you too, and everything’s going to be okay.”  I was ecstatic!  I believe that experience was a gift from God, a message from Him as well that everything would turn out all right.  And from that moment on, hope was my constant companion.

Eli spent 5 weeks in the NICU, and throughout that time I definitely had my ups and downs with hope.  But I never truly lost sight of it again.  With each milestone he reached, I knew Eli was telling us over and over again that he was going to be just fine.

Today, Eli is almost 8 years old and in 2nd grade.  He graduated from the NICU with flying colors, and is a very healthy, energetic little boy – which is everything I hoped for, and more. 

Wednesday, February 6, 2013

The Three S's

By Joel Brens-

The Preemie Parent Alliance is a good place to start when seeking support

The three S's

I am constantly reminded of how close knit this community (as in the NICU) can be. When I take few minutes to connect the dots it's exciting to see how many people who mean so much to me have connected through social media. While I put most of my blood, sweat, and tears into Papas Of Preemies, this is merely one hub among countless amounts of support groups. The best part? There is so much support for each other it's humbling. Here are three S's you can utilize to make the biggest impact possible:

Seek- as in seek out others throughout the community. We may not all have similar stories, but chances are someone has been through and felt a lot of the same things you have. The only way you can discover this is by seeking it out.

Share- if you see a blog, an article, a picture, or a quote you like, share it! You never know if it will strike a cord with someone you know.

Support- one another. Every journey is different. But we are all here for the same reason: Because community gives us a sense of sanity, togetherness, and purpose. 

Please be sure to visit our Resources Page for a list of great Non- Profits, Support Groups and Community Groups. 

Tuesday, February 5, 2013

I Choose Hope- Jon Bennion

By Jon Bennion-

Editors note: The following blog is an small excerpt, used with permission of the author, from Jon's Bennion's book "You Don't Know Jack: A Micro-Preemie Story"

The clock on the wall said it was two o'clock in the morning, which meant I hadn’t been sleeping long. Despite the sheer exhaustion from the most horrific day in my life, I couldn't drift into sleep easily knowing that a nurse could appear at any moment and tell me my son had stopped breathing or had no pulse. The medical staff told me earlier I could go back and see him at any time, so I got up quietly, walked past a group of nurses playing cards, and found the NICU entrance.
“How is he doing?” I sheepishly asked his nurse.
“He’s doing well. He is not requiring much oxygen right now.” The ventilator was pumping each breath in and out of his underdeveloped lungs, but the amount of extra oxygen needed was quite low.
“Oh, okay,” I responded with a certain level of surprise. I was expecting an answer like, “he could slip away at any moment.”
I was still struggling with the notion that I was now officially a father and how I should act and feel in this crisis. If I chose to believe Jessi’s OB-GYN regarding Jack’s viability, I would have to hope for my son to pass on with as little suffering as possible. I would need to brace myself for death. That meant I needed to prepare myself and protect myself from the inevitable catastrophe.
If I chose to believe the more optimistic views of the other two doctors, I could expect Jack to survive and possibly make it out of the NICU in the coming months with few complications. 

Do I choose hope, which also opens me up to the greatest disappointment of my life? Or do I believe statistics and accept an outcome that is very likely?

It was during that night when I learned my first lesson as a father. My role in life had changed substantially – more than when I started kindergarten, learned to drive, graduated from college and law school, and even more than when I got married.  There was a miniature human being with my genes that was now totally dependent on me and others for his very life. Bone of my bone, flesh of my flesh.
At some point, it became clear to me that I needed to be a father by choosing hope. My son needed a cheering section with me leading the charge, not a scared, despondent dad bent on protecting his own feelings. If Jack ended up succumbing to the complications of his extreme prematurity, I would be crushed. But my own feelings were not important enough to withhold my faith in my son. I would survive somehow. If I couldn’t be my son’s biggest fan, who would be?
Despite feelings of denial, fear, anger, and desperation, I made the choice that hope would overcome any negative feelings about the situation we now faced. Jack needed me – he needed his dad.
I’m here for you, buddy. I will do anything for you. I believe in you.

Monday, February 4, 2013

Moms Say Thanks- Heather Lesoine

By Heather Lesoine-

I have been putting off writing this post, because I feel guilty for not saying these things sooner…for assuming that he already knows how much I appreciate him.  I do remember while I was still pregnant, I was lamenting with a friend about how I figured I’d miss my husband once the baby was born.   While I may miss my husband, I am sure glad to be spending time with the father of my little man.  Jeff is a quiet guy, for the most part.  I worried about that when we met, because I’m a talker and I come from a family of talkers…loud talkers.  We were married for over 3 years when we got pregnant.  Jeff was still quiet, but I learned pretty quickly how important that quiet would be.   For all this time, talking about what has happened to our family is often too difficult to express, and the quiet was exactly what I needed and often still do.  So, during the last 2 years of this journey, Jeff has taken on my heartache and pain, quietly, of course.  And he may not have always said the things I’d like to hear, he DID things that are so much more important.  He was there for me and for our son, and has never made me doubt that he will continue to be. 

When I entered the hospital with severe preeclampsia, Jeff wasn’t there…at first.  He was on a well-deserved guy’s trip, but returned home just a few hours after he left.  In the 4 days before Jack was born, I don’t remember Jeff not being there with me.  I’m sure he took a break or two, but my memory is of him always there.  He wore a hooded sweatshirt most of the time, despite the August heat, because I was “on fire” from the magnesium sulfate and had the AC turned up as high as it could go.  He made an attempt at keeping things quiet for me, to keep my blood pressure under control.  He was there in the operating room, even though he’s the type who needs to lie down after giving blood.  He slept on a cot beside my hospital bed, from admission to my discharge.  Once Jack was born, Jeff managed to be there for both of us.  I always felt so heartbroken, for myself, that I wasn’t able to see Jack for over 24 hours.  But I felt great comfort that Jeff was there to assure Jack that he was loved.  He went to rounds in the morning, to check on Jack and speak with the doctors, and he came back to encourage me to keep pumping for our little guy.  It wasn’t something we ever discussed, but it was obvious that Jeff cared as much about Jack’s health as I did.  Jack spent 112 days in the NICU and if Jeff missed a day visiting, I sure don’t remember it (and I’m sure Jack didn’t either).  He would go straight from work, stay for 3-4 hours and come home to dinner after 9pm most nights.  Once Jack came home, I was full of anxiety and overwhelmed.  Jeff was there.  He stayed home the first week so that we could get a routine and figure out how to navigate life with a medically fragile newborn…multiple meds, doctors’ appointments, oxygen concentrator, feeding pump, NG tube, breathing treatments, and therapies…along with the usual baby stuff, like diapers and formula.  The night before Jeff was to return to work, I broke down and threatened to run away.  It was too much.  He didn’t say much, but he stayed home one more day, which was just what I needed to feel comfortable with taking care of Jack on my own.  And every day, as soon as he got home and showered, he took over Jack “duty” so that I could take a short nap before my next shift.  (Jack had to be fed every 3 hours for many months after he came home to help him gain weight, so we had to take shifts for each of us to get enough sleep.  We never did get enough, though, and Jeff often took naps in his car during his lunch break at work.)  He was supportive of my choice to stay home with Jack and was more sure about that decision than I ever was.  Because of Jack’s fragile lungs, we spent a lot of quiet time together at home.  While I continue to enjoy the boisterous family get-togethers, I’m now just as appreciative of the quiet time at home with Jeff and Jack.  Here we are, two years later and with a much less fragile little one, and Jeff is always there to put Jack to bed, change his diaper, take him for walks, play and to care for him while I get out of the house.  I still have no doubts that he will always be here for our family, and now Jack knows it too!

Soon after Jack was born, we had both heard the statistics about marriages that typically end in divorce because of trauma or kids with special needs.  We didn’t say more than was necessary, just:  “Thank God we’re not normal.”  We both know that this journey has been and may continue to be difficult at times and aren’t putting too much pressure on ourselves to be perfect or have a perfect marriage.  What’s important right now is that we are both there for each other and for Jack.  We don’t talk about it much, because we both know we are on the same page when it comes to protecting Jack.  I feel like this post could go on and on about how Jeff has been there for me and Jack.  But I have to be honest and say that I feel awfully guilty, because I can say for certain that my focus the last two years has been on our little guy and I may not be there for Jeff like he is for me.  Jeff and I don’t talk much about how he felt during the NICU stay or since.  He’s been quiet on that subject and I’ve let him stay that way; because as much as I’ve healed, I’m still not ready to take on someone else’s heartache and fear.  Knowing that his pain is as deep as my own, or even deeper because he faced the possible loss of his wife and his son, may be too much to deal with for me at this point. (I’m tearing up as I type this).  Knowing that this wonderful husband and father, who has been quietly strong all this time…may have felt more pain than I did is almost too much for me to handle.  And that’s a post for another day, I suppose. 

Heather Lesoine