Thursday, June 28, 2012

Dear Owen

By Mark Brislin

Dear Owen,
First of all, I am sorry. I know this is probably scary and painful for you. Your little arms are tied to the bed to keep you from removing the tubes. Those tubes are your life line, but I know they must make you uncomfortable. The one in your mouth is feeding you; the one in your nose is called an endotracheal tube and that is helping you breathe. There are little monitors on your chest that are keeping track of your heart rate and that little glow on your foot is called a pulse ox monitor, it’s keeping track of how much oxygen is in your blood. The little heart on your stomach is tracking your temperature and the tube near your stomach is called an umbilical arterial catheter. That tube will keep you from having to be continuously stuck for blood draws. I am sad to say that your first haircut was done by the doctor, they had to run what’s called a PICC line; this will give you those antibiotics that will help you get better. He did give us the hair that was cut off.
The wash cloth on your head is keeping the light out of your eyes; it seems to keep you calmer. Those machines all around you are telling us how comfortable you are. Your cries are silent, but when we are standing next to your isolette, any time a tear builds up in your eyes, we know that the alarms are soon to follow and we react to make you more comfortable. We stand here looking at you, marveling at how beautiful you are despite all of the tubes and machines.

This is not the way it was supposed to be, but we are thankful that you are here, since we know that it could have gone differently. See when you were born, everyone in the room was supposed to celebrate. I should have cut the cord, and given you your own life, to breathe the fresh air. When the doctor handed me the scissors, I didn’t want to take your life line away. I knew that with Mommy you were safe, without her you would struggle to survive. I had to cut it because you couldn’t stay in there forever.   You made a small sound, which sounded like a cry, and the doctor said that was a good sign.
Next, you should have been placed on mommy’s chest, so you could bond with her, right away understanding that she was Mom and the crazy one taking videos and pictures was Dad. But they took you away, and said we would be able to see you in about an hour. They brought you to a room and placed all of these tubes and wires on you, the ones you see right now. It wasn’t a surprise, but no one could emotionally prepare for this.

There is chaos in your NICU pod. Many people are coming and going. The people in the scrubs with the yellow gowns and masks are your nurses. They are taking care of you, suctioning out the fluid, keeping your temperature normal and keeping an eye on your monitors. The people in white coats are your doctors; you’ll see a lot of them because CDH is so complex. There’s the Neonatologist with her resident and fellow, she is in charge of the NICU. Standing next to her is the doctor that’s monitoring your CDH care; he’s one of the best in the world. Over the course of the night, other doctors will come by.  Your surgeon will stop in to get a progress report. He will be the one to fix your birth defect and get you on a road to recovery. The infectious disease doctor just stopped in- we call him doctor doom and want him to go away. The cardiology team thinks your heart is working fine but, like the rest of them, they are only cautiously optimistic.
A social worker and psychologist also stopped by to see us, but we told them we don’t really need them, we have this under control. There will be a man in a black uniform later. He will come to introduce you to God. He will baptize you and bless you in case Jesus decides he needs another angel. But we’re not going to talk about that.

So that just leaves “us”.  The two people by your side not wearing scrubs, or white coats, or face masks. Although your doctors and nurses change, we do not work on shifts. We are here around the clock. We do wear a uniform, it’s called the NICU parents outfit. We wear wrinkled cloths that have been sitting in a suitcase or stuffed in a tiny locker. Around our eyes there is a constant ring of redness.  When we stand at your bedside, there is a slouch in our backs, mine from sleeping on a chair for 4 days, and Mom from the pain of birth and that same chair. We are optimistic with your prognosis, but we also understand that it could change minute by minute.  We won’t leave.

We are different from the doctors and nurses, and right now that might not make sense to you Owen, but soon you will understand.

That person standing there next to you is Mom; she is the one who holds your little foot. She touches you so you can feel her warmth and comfort. She talks to you, and when other babies cry, she lets you know that it’s alright. She takes pictures of you, because despite your wires and tubes, she knows underneath it all you’re a beautiful and strong little boy. She wants to hold you so bad, to make all of your pain go away, but she just can’t right now. When she is standing in front of you she will not cry, she will not let you see the pain she endured to have you. I can see how much joy you bring her.

I am Dad. I’m the one who puts my finger in your little hand. I love the way you squeeze it. Your strength keeps me going. It helps me believe that this will all be okay someday soon.  I try to sing to you at night. My singing is a little pitchy.  My voice cracks as I sing, “Bedtimes here, it’s time to rest, good night my sleepy friend.” I try to mimic the toy we used to play on mommy’s belly. The books said it would give you a sense of comfort and familiarity while you’re in the NICU. I never believed it, but you seem to calm down when we play it.  

Your Mom and Dad want you to know who we are. We’ve already decided that if we only get to be your parent for 1 minute, 1 hour, or 100 years, that we were going to enjoy it and no matter how many people come in and out of your life, we will always be Mom and Dad.

Owen, you are now 4 days from your 10 month birthday. In everyone’s eyes you are a healthy, growing little boy. They see pictures of you eating, and playing, videos of you crawling around the house and screaming Mama and Dada. We know that doctors and clinics and studies will be a part of your life. And that you’ll have to face a minor surgery and some testing. We’ll face every challenge together as a family.
I can’t always predict your future, but the one thing that I can promise you is that your mother and I will be there for you. We’ll make sure you understand what you’ve gone through and how lucky you are. We’ll tell you stories about those other little ones who fought with you, but lost the battle with CDH.
As I reflect back on those days in the NICU I am inspired by your strength, awe struck by your resilience and so very thankful for having the chance to be your Dad. I would go through it all again. The day I first saw you in that Trans NICU, I asked the nurse if I can hold your hand. They said it was okay, that they encouraged me to do so. I put my little finger in your hand and you held on, you squeezed tight. I’ll remember that day for the rest of my life. Its’ the day I knew this would all be okay.

Monday, June 25, 2012

Learning to let go

Learning to fly (photo credit: Creative Candids)
By Joel Brens

When my wife and I were thrust into uncharted waters, as first time parents of a preemie, I undoubtedly felt the need to be protective of everything relating to my son's well being. We took a very active role in his first days as a preemie. We spoke to him softly, held him as much as the nurses allowed us to, and probably asked the same 10-15 questions about a million times. We were fortunate to have a great team of nurses and doctors working with Jayden. While I do think that our gratitude for all the work they do helped forge strong relationships, I'm fairly positive that most NICU nurses and doctors are willing to explain everything they are doing and want you to be informed if taking an active role.

When we brought our son home 25 days later, my level of protectiveness grew tenfold. We were adamant about avoiding germs and keeping Jayden from public places, outside of scheduled doctors visits. I remember on a couple of occasions having to cancel plans for visitors because a small sniffle was a deal breaker for us. While I think it bummed people out, there was a understanding that we would just not budge on that risk, especially over the course of the first winter.

To be fair to this story, we placed Jayden in daycare a lot earlier than we wanted to. (about 6 months) Faced with the reality that we would not be able to sustain a living on one income, my wife resumed a working career.  I was terrified about my sons health, about him sharing germs with other babies. But knowing how hard this transition was for my wife, I decided to play it cool and not show concern, instead letting the stress eat at me from the inside.

It's funny how you adjust to the life of a parent. Everything becomes so second nature. You feel like you have a million things to do over the course of a day/week and before you know it a month has passed by. Outside of one really rough patch Jayden's health has been relatively good. He certainly doesn't look the part of a former preemie. (He weighed a whopping 34lbs 5oz and was 35.5" tall at his two year checkup) but all the same he still has some lingering issues. He has speech delays, it would be fair to think that asthma may be a concern in the future. Otherwise he looks and acts like a regular toddler. Which leads me to ask: When do you learn to just let go?

Making the transition from an overly  protective preemie parent to a parent of an everyday, risk-taking, fearless, limit-pushing boy was a tougher transition than I had expected. Here's the flat out truth: My son is going to get bumps, bruises, scratches and scrapes. I'm okay with that...almost. I swear every time my son has a blotch on his face, arm, or legs my wife asks "How did he get that?!?" Well, honey... Probably when he ran full speed into the couch and used his face as a grip on the cushion to pull himself up. I would never in a million years want Jayden to hurt himself, but I'm to the point where I think getting a bit spooked by being too adventurous wouldn't be the worst thing. I want my son to explore and be active. I also want him to understand that with all choice comes consequence, whether positive or negative.

Another thing we have "transitioned" to is discipline. Jayden needs to know that repeated disregard for instructions will lead to a "time out". He's not a fan. We will put him in his crib and walk away for two minutes. Afterwords we will explain why he was put in time out. We are so early in this phase I can't confidently endorse its effectiveness. But with all things we have done as parents, trail and error will helps us find something that works.

I hope this perspective will help another parent get over the hurdle of knowing how, or when, or for that matter, how much you are willing to let go. Every story is different, so listen to your heart and forge ahead when you feel it's time. You are, after all, the best caretaker and advocate your child will ever have.

Where has the time gone? (photo credit: Creative Candids)

Friday, June 22, 2012


By Jon Bennion

I don’t view myself as an emotional person overall, but the NICU brought out feelings I thought I didn’t have. In my previous post, I described the paralyzing fear that came to me as I watch both my wife and 23-week, micro-preemie struggle for their lives. Another feeling that would often surface in those early, whirlwind days of the NICU was anger. It’s hard to explain, but when things go wrong, I felt like someone needed to be blamed for my latest stoke of incredibly bad luck.
I was first angry with myself for not being more diligent about the pregnancy. Did I act too nonchalantly when my wife was sick? Should I have insisted that she find a more competent OB? Surely I could have done something to avoid such a disastrous outcome, I thought.
I would feel anger towards our hometown medical professionals who didn’t catch my wife’s preeclampsia before it necessitated the premature delivery of our son, Jack. Surely this wasn’t the first case of preeclampsia they had come across, and yet it seemed to take forever just to have a doctor come and see her. Looking back, I believe there were early signs during the pregnancy that would lead most OBs to monitor Jessi more closely. But they didn’t.
Every now and then, I would get secretly angry at NICU nurses for being either seemingly pessimistic or overly optimistic. If they seemed too nonchalant in their work, it ticked me off. If they treated our NICU situation too casually with jokes or bubbliness, it irked me. I must have been one, easily-offended jerk. NICU nurses thankfully have a lot of patience.
I could have inexplicable contempt for those parents we passed as we made our way in and out of the NICU who had normal, healthy babies. I was jealous. I was angry they were experiencing the normal parenting moments I thought I would have. They didn’t know how good they had it.
Sometimes, my resentment would focus on complete strangers. I often felt this way whenever I arrived or departed the hospital. Near the front entrance of the hospital, a small enclosed structure was set up for hospital employees to smoke on their breaks. We dubbed this location the “butt hut,” which was a comical way of expressing our disdain for these otherwise healthy adults who were slowly killing themselves with each inhalation of burning tobacco fumes into their functioning lungs. While my son struggled for just a chance at life and to breathe his own breaths of room air with workable lungs, I would feel no small amount of contempt for these healthcare professionals lighting up cigarettes outside of the hospital. Immature, I know.
Early on, I also directed a great deal of my anger towards God, who had been in a position to prevent this turmoil and give us a baby without the slightest hiccup in the process. I believed we would be model parents – enthusiastic to love and provide for our first child. I felt like God robbed me of something I deserved.
I believe that while all of these feelings of anger were completely irrational, they are a typical reaction for many new fathers in the NICU experience. Parents, especially new dads, may be looking for explanations outside of the obvious ones. Anger is a way of pointing the finger at someone or something, when usually the only real blame rests on the fact that life is full of unexpected twists and turns. The sooner someone can accept that fact, the earlier they can shift their focus away from finding fault in others.
Next post regarding feelings in the NICU is about something I never expected to feel as a new father of a fragile micro-preemie: guilt

Wednesday, June 20, 2012

Scars and Memories

By Rob Berry

Every once in a while I am taken back to the time our daughter Hazel spent in the NICU. Being born at 24 weeks she certainly spent a fair amount of it there.

    What takes me back? Sometimes it is just a moment of quiet reflection. Sometimes it is a picture I stumble across on my iPhone or a conversation with a friend or family member I haven't seen for a while.

    Recently it has been the physical scars left on our daughter's body that take me back. They are a very real reminder of just how perilous and uncertain her early days were.

     There is the obvious scar from her PDA ligation which immediately jumps out. The surgeons did a great job, it is just obviously a rather large mark on a still rather small body.

    As our daughter has grown, we have noticed new scars appearing on her hands, feet, forearms and legs from IV's, blood gases and PICC lines among other things. They aren't new really, they've just become apparent as her little body has grown more ample.

    I can't help but think about some conversations that we had with a few doctors right around Hazel's birth. These chats irreversibly altered what my wife and I would consider to be normal talk about babies.

    Our first such conversation was with a doctor who joined our ultrasound tech in the hospital to deliver some somber news. It could be worse but our situation was not enviable.

     He estimated that our daughter was around 1 pound 6 ounces and told us babies that size and gestation usually have a hard time making a go of it.

    Numbers like 50-60% chance of survival and possibly 80% chance of moderate to severe long lasting issues still echo in my head.

     The look on his face was telling; we were up against it. Finally he wished us luck and left us with the thought that every day Hazel stayed inside, she would have a 2% better chance of surviving.

     Well maybe that extra 2% was all she needed. Fast forward to the delivery room a day later. One of the Fellows from the NICU joined my wife and I to tell us a bit about the NICU and what we would be in store for.

    Again, the message was honest. There was no sugar coating the fact our daughter was in for a long, hard go of it if she survived. We had no idea at the time what that meant but did we ever find out.

    I think back to the second time I saw our daughter about half an hour after she was born. Her body was purple from being so early and also as a result of delayed cord clamping.

    We were informed that this was normal and that it was a good way to help with iron stores as well as reducing the risk of Intraventricular  Hemorrhage  (brain bleed) and Late Onset Sepsis (infection).

    Those words should have freaked me out but at that moment they didn't. I heard the words but at that moment all I remember is thinking how beautiful Hazel was and how much I loved my wife.

    About a half hour after Hazel was born, I joined the Neonatal Transport Team in a side room where she had been stabilized. She was intubated minutes after birth and was packed up in blankets. I was told I that if I scrubbed up well I could touch her.

 Naturally I was ready to go quickly and returned to Hazel's side. I was told babies this size have extremely underdeveloped nervous systems and so you can't caress or stroke their bodies like you might a 'regular' newborn. Firm hands and containment were the way to go.

    Hazel grabbing the tip of my index finger at that moment is an image that is burned deeply in my brain. Her whole hand and all her fingers wrapped around the tip of my finger with some room to spare.

The best way I could describe how she looked in that moment to someone who has never witnessed a micro preemie at birth is to say she looked like a newborn baby bird without a beak. Crazy right? But how else would you describe it? There is no frame of reference that would even come close. She was perfect. She was beautiful. Looking back it all still boggles my mind.

    There were many more lessons about preemies over the following days, weeks and months. One such lesson was the meaning of a 'honeymoon phase'. This is where even micro preemies often appear to do well for the first 48-72 hours and then may start down a different road.

     We were graced by God and a bit of luck that our little one pulled through that critical time but we also saw others that weren't so lucky. I never thought I'd feel guilty (yet grateful ) that my child survived her birth but it is something my wife and I grappled with a lot early on. This feeling has lessened over time but it will never leave me completely.

    Being through all of this has done many things. I know for a fact that there is not a moment in our daughter's life we will take for granted and believe it or not for that I am grateful.

    The NICU has left many scars on my young family, some which will never heal and some that over time will slowly fade. Our daughter's 107 days took me to some really dark places and pushed me way beyond what I thought I could handle. Endless days and nights in a Level 3 nursery will get to even the strongest of people.

    It also left our little family with some amazing memories and many firsts most people never experience.

    I will never forget seeing Hazel's eyes open for the first time. It was approximately three weeks after she was born as her eyes were still fused at birth. When they finally struggled open, it was a breath taking.

    Hearing her cry for the first time after two months of being on the vent will always stay with me. The sweet sound of her little lungs doing what nature intended gave me goose bumps.

    Putting her first preemie onesie on her after 2 months and seeing it actually ALMOST fit her, wow.

    Finally, my wife and I met some amazing people in the NICU. Doctors nurses, respiratory techs, unit clerks and social workers became friends.

     We met a couple that took us under their wing while they were still going through their own NICU journey. We remain in touch and recently both families were together to celebrate our children's first birthdays.

   As we neared the end of our NICU stay we looked for ways to pay forward the kindness bestowed upon us and tried to reach out to other parents through a support group.

    I think very few people know how close we came to losing Hazel. It is because of this fact I cherish every moment I get to be with her and my wife.

    As I continue to write, I hope my words may offer insight and a sense of normalcy to people as they go through a very abnormal experience.

Sunday, June 17, 2012

A tiny blessing- A story about dads, sons, and faith

Happy Fathers Day Dad! (Photo Credit: Trademan Photography)

There are periods of my life that are so vivid and clear in my mind I will never forget them. I have always been a man of faith, but an eight-month stretch a couple of years ago changed my faith forever.

October 25th will always stick with me. I remember quietly rocking as Gena and I anxiously awaited the results of an E.P.T. The hour glass seemed to turn for what felt like an hour. Then, suddenly, we gazed open mouthed as it read its result: Pregnant. We laughed and cried tears of joy a bit to ourselves at the notion that we would someday have a family. In so many ways it was greatest moment of my life at that time. But it was also very bittersweet, as my father Jack was battling Multiple Myeloma for a second time. We were uneasy about sharing the news with my parents as they were dealing with overwhelming circumstances. We decided some good news would probably help. They were thrilled. My father was giddy, and I’ll never forget his smile that day.

Three weeks later my father’s health took a serious turn for the worse. He was admitted to a hospital and on two occasions in the first week we thought he might not survive the day. After four weeks in the hospital he was transferred to Northwestern in Chicago in a last ditch effort to see if doctors could help turn it around. After a couple of days it was becoming clear that my father wouldn’t survive. He wouldn’t be there for my child’s birth. I was heartbroken. I felt completely helpless, and I had to turn to my faith for answers. I asked God for understanding and mercy on my father. Then, on the evening of December 18th, 2009, God brought my father home. He was at peace, and to some degree that brought me comfort.

As one life was ending, another had just begun. I lost my father as I was becoming one. I prayed every night for the health of my wife and child. I was terrified about the pregnancy. It weighed on my mind more than I could explain to anyone. Luckily we heard a heart beat quickly during Gena’s 8-week ultrasound. I shed tears. Life did exist. The pure awe of it was almost mind-boggling. We agreed to find out the sex of the baby at our 20-week checkup. By no surprise to me it was a boy, Jayden Jack Brens!  

As we got into the third trimester we were informed that we might be having our son early. Gena was dealing with early signs of preeclampsia and high blood pressure issues. She was hospitalized after she developed diastolic umbilical artery flow. On the morning of May 11th, 2010, our son Jayden was born at just under 33 weeks. He was 3 lbs. 6 oz. and 17.5 inches long. While he was tiny and frail, he was also the most beautiful thing I’d ever seen. Once again, feeling overwhelmed and helpless I looked to God for guidance. After a couple of hours of feeling numb and somewhat angry, I choose to put it in His hands. With the help of amazing doctors and nurses Jayden did remarkably well, and 25 days later he was sent home.

A couple a weeks passed and in a moment of sadness, I confessed to Gena how much I yearned for my father to hold Jayden, even if it was just one time. Without hesitation she said “But honey, he DID hold him. He held him for 25 days while he got strong in the NICU.” I cried tears of sadness and joy. Because she was right. I don’t think there’s any coincidence in God’s timing.

My love, my life, my son

Friday, June 15, 2012

Featured Father - Ryan Anderson

By Ryan Anderson

On the evening of Monday March 5th my wife who was 25 weeks pregnant started feeling pains in her abdomen and lower back.  It became painful enough that we decided to head to Sparrow Hospital to get it checked out. We figured they would run a few tests, give her some meds and we would be on our way.  We entered the doors at around 6:30pm and by 8:30pm they had done enough tests that they were able to find out that there was an infection somewhere in her body. They then sent us to a room in the hospital and we sat there waiting to find out what the next step was. We were definitely getting a little nervous by this time.  They returned to the room sometime close to midnight to extract some of the amniotic fluid from my wife to see if the infection was near our unborn child.  It was extremely scary to watch the Doctor’s cart in a mini ultrasound machine and a huge needle to pull some fluid.  I remember watching my baby move on the ultra sound screen and then watching them strategically place the syringe away from his body to extract some fluid.

At 5:00am the doctor’s came in with the results from the fluid sample. There was an infection in the amniotic fluid and the doctors tossed me some scrubs and said you need to get changed, we are going to be performing an emergency c-section very soon.  Our little miracle, Reed was born that morning at 6:23am on March 6, 2012.  He weighed in at 2lbs and was 13 inches long. The doctor’s forewarned us to not be surprised if we didn’t hear him cry out loud because his lungs would be very premature just like the rest of his body. Well, when he was born we could hear him crying out loud and that made us proud.  They immediately placed him in a plastic bag to help keep moisture in his body because his skin was so thin that it couldn’t manage to do that on its own.

I remember that first day in the NICU my wife and I were so scared that we didn’t even want to put our hands inside of his incubator.  We didn’t want to do anything to harm or disturb him because of how fragile he looked.  Almost 14 weeks later our son Reed Thomas Anderson is no longer on any oxygen support, is taking all of his feedings from a nipple, lives in a crib, we get to give him baths, and we can take him out of his crib and unplug his leads and hold him just like a term baby.  Last Saturday he was even a featured baby on the Children’s Miracle Network telethon at Sparrow Hospital.

Reed currently weights 5lbs 8 ounces and is 19 inches long.  We have begun having talks with his Neonatologist and nurses about a plan for sending him home.  This has been a long process but wouldn’t have it any other way. I feel like a “veteran” NICU dad based on how long we have been driving up to visit our son daily.  I would like to leave any new or future NICU dad’s with some tips that really helped my wife and I to stay positive through these 14 weeks.

1) If you can be with your child during “rounds” do so and listen closely to what the doctor’s say and ask ANY AND ALL questions you have. If you are fortunate enough to get time off work like my wife did to be with our son every day; you end up knowing your child better than anyone and your input and advice is very valuable.

2) Get to know the nurses and be their best friend! They are with your child more than anyone else up there.  Bring snacks for the whole crew if you can. When you find nurses you really like there is a good chance they will “follow” your baby and having nurses you trust makes it much easier for the parent when you have to go home or back to work.

3) Be involved in every thing you can. Whether it is kangaroo care, changing diapers, bathing, feedings, etc. It allows you to not feel “helpless” and as though you are really helping your son/daughter grow.

4) Read them books.

5) Keep a journal. My wife and I (mostly her) have written in his journal every single day of his life beginning with day 1. Sometimes it is nice to read through his old ones and really see how much your child has improved.

Ryan doing kangaroo care with his son Reed

Thursday, June 14, 2012

Featured Father- Brad Kamps

By Brad Kamps

From early on in our pregnancy, we knew we were about to begin an extraordinary journey. After struggling to get pregnant, we were shocked by what we were seeing on the ultrasound screen; three heartbeats. I remember asking the ultrasound tech “What is that?” as I pointed at the screen. She chuckled and said, “That’s not another baby, that’s her bladder.” Immediately, thoughts started racing through my head. Is our house big enough? How are we going to afford three of everything? Am I going to have to buy a minivan?

The pregnancy was physically difficult on my wife, but there was nothing of particular concern until her water broke unexpectedly while she was at work at 25 weeks gestation. We rushed to the hospital and were admitted for what we thought was going to be three or four weeks of strict bed rest before she would deliver. After 12 hours of monitoring, her labor was unable to be stopped, and on September 1, 2010, our three little girls were born. Annaliese Hope, Brenna Renee and Lucy Jane entered this world each weighing 1 pound, 8 ounces and were 12 inches long, roughly the size of a Beanie Baby.

We were amazed at how very perfect they were, tiny, but absolutely perfect.  Our sweet little babies, while so very beautiful were also very frail and sick.  Each was in a fight for their life.  In total, the girls had seven surgeries, multiple infections, and too many blood transfusions to even count during their stay in the NICU.  We had numerous nights where it wasn’t clear they would see the next morning, but they continued to fight. Annaliese, Lucy and Brenna were able to come home after 77, 79 and 152 days respectively.

While we still deal with some issues from their prematurity, the girls are thriving at home, and are very active toddlers. Despite our troubles, we are very blessed to have brought all three girls home. The odds were not in our favor, and we are continually amazed by them every day. 

Brad, his wife, and triplets Annaliese, Lucy and Brenna

Wednesday, June 13, 2012

Featured Father- John Carden

By John Carden

It all started on Dec 20th a day I will never forget as long as I live. My wife Tracey and I woke up around 8 am or so and started our normal routine. I was sitting on the couch watching Sportscenter and eating Fruity Peebles (it’s funny what you remember). At the time Tracey was 30 weeks pregnant. Around 9 am Tracey went to use the bathroom and came out with the most horrified look on her face and said "We have to go the hospital NOW". No packing, no picking up, no taking care of the dogs and out the door we went. On the way to the hospital I finally got her to tell me what was going on. She was bleeding and had no clue why but it was enough to warrant a trip to the hospital. Once we arrived at the hospital, they took her L&D and started running tests, doing ultrasounds etc. etc. After an hour or so and who knows how many tests they told us they were admitting her and would put her in a room shortly and have a doctor come by and talk to us. Finally we got into a room that would become our home for the next week. Shortly after that the doctor came around and said to us " Your baby is small and we saw some things on the ultrasound that concerned us. We are having a specialist come by to do more test and more ultrasounds to confirm what we saw. He will see you in the morning".

The next morning we meet another doctor and his nurse. They came in do an ultrasound and just left the room without saying much. About an hour later the doctor came back in and explained to us that while the placenta was forming it formed wrong and is cutting off the supply of the umbilical cord and right now our baby weighed somewhere around 2lbs. He said they would do two ultrasounds a day and if things started to look bad they would take the baby via emergency c-section. That day we met a lot of people including the person that would become our best friend Dr. Aggie. She was our Neonatologist and she explained everything that would happen if they had to take him via c section. Over the next several days they did two ultrasounds and never said a word except “Well it looks like it wont be today.” All that changed on Dec 25th. They came in to do the morning ultrasound which normally takes about 15 minutes but this day they started and two minutes later the tech was gone. A few minutes after that another tech comes in with Dr. Aggie and says "We can't let him stay in there anymore he will thrive more out than in at this point at noon we are taking you back for surgery.” Then Dr. Aggie told us the process and what to expect him to look like and he may not breathe. She was awesome there was no question left unanswered or no stone left unturned.

At 12:31 pm Dec 25, 2009 Tristan was born weighing in at 2 lbs 5 oz. It seemed like forever waiting for him to cry that first cry. Then when he did we knew we had a fighter on our hands because not only did he cry he yelled. One picture of him and he was off to NICU. At first he did really well. So well that even the doctors and nurses were surprised. We knew not too get excited because of the conversations we had leading up to this. So it is a good thing we didn’t because at nine days old Tristan took a turn for the worse. He became very ill after many tests over 24 hours the doctor sat us down and said words I still hear: "You will need to stay at the hospital tonight. He has a very small chance of making it through the night, and if he does and we can get him stable we are flying him to Children’s Hospital" At that time we found out Tristan had Necrotizing enterocolitis (NEC) and Disseminated intravascular coagulation (DIC). Well he did make it through the night and they did fly him to children’s hospital where they did surgery to remove part of his intestine and get him back on track and growing. That is what he did. Two weeks after surgery they sent him back to his original hospital to finish growing. Then the happy ending 72 days after all this started it ended. They took Tristan off his monitors and we stayed in a room with him that night so we could take him home the next day. Now Tristan is a very happy and healthy 2 yr old that loves his older brother and fire trucks.

John's son Tristan

Monday, June 11, 2012

Featured Father- Jeromy Guthrie

By Jeromy Guthrie

Once when my son was 4, I remember taking him to get a hair cut. While he was sitting in the chair we kept looking at each other in the mirror. He was being his typical self while enduring the scissors and clippers. He was being quiet… a little shy. As his eyes caught mine in the mirror he would give me this shy little smile that I have seen 100 times now. It was like this unspoken heart language we have.  “I love you dad, I love you son.”  Being a dad is an amazing thing. In fact, a regular thanksgiving prayer of mine is, “Lord, thank you for letting me be Reagan and Eli’s dad, help me to…..” I think that one of the most important things any parent will ever do for his child is pray and intercede for them constantly. If there is any hope of me preparing my children for life, I cannot do it without prayer. In fact, prayer was the very foundation of my son’s life.

I never will forget what I learned about prayer the day he was born. The night before, my wife and I were resting at home. We had just put our daughter to bed and were just enjoying some quiet time alone. It was late. Then it happened. My wife started bleeding very badly. We would come to find out later that her placenta had detached, and this caused her water to break. The only problem was that it was 10 weeks early. I admit that I was scared, but under God’s grace I was able to remain focused enough to call 911. Once the paramedics came, my immediate reaction then was to call a couple of people who I knew would absolutely drop everything they were doing and start praying for us immediately. We would come to find out later that my wife lost so much blood that she was just a fraction away from a transfusion. That was almost 5 years ago. My wife and Eli are fine now and I am grateful for it.

The first 24 hrs of Eli’s life were uncertain, and the doctors could not give us 100% guarantee that he would live. Several things were wrong; the most crucial one was that his lungs had not had time to fully develop. They were giving him all kinds of medicine, asking my permission, explaining things to me…but it was all numbing. Within 24 hours things changed so much and kept changing. Perhaps the hardest decision I had to make was when we found out that the hospital’s NICU was not able to give Eli the care he needed. He needed to be transported to Children’s Hospital in Colorado Springs. Now, on top of everything else, my wife was going to be in one hospital and my son in another across town.

How could I be there for both of them?

How could I leave my wife behind?

But at the same time, we did not want Eli to be alone his first night, especially given all the circumstances and uncertainty. So I painfully left my wife in the hands of the nurses and we both agreed that it was best for me to be with Eli. But it did not seem right for Eli to be all alone.

My wife was allowed to hold Eli for about 60 seconds before they took him away in an ambulance to the other hospital. It would be days before I, or anyone else, would be able to hold him. I was barely allowed to touch him. I will never forget going to the hospital and walking in the unit after they had transported him and got him settled in. There was so much pain and discomfort in his face. There were so many tubes and IV’s in him. If he could have made any noise you could not have heard him

I stood there quietly praying over my son, trying to be respectful of the noise limits in the room. When Eli’s nurse walked up she interrupted me and said, “You don’t have to pray so quietly.” And then she led us both in this intercession for my son, you would have had to have been completely deaf not to hear her.

Even the next nurse on night shift turned out to be a fellow sister in Christ. She also prayed with me and for me and Eli. I would come to find out later her story and how she and the other nurses would daily walk over and pray for every child there. It was their mission… their calling.

There is a lot I could talk about my own experience of being he NICU, but I am grateful that God provided such love and care for my son through all the nurses, doctors etc... I am grateful for the care that goes beyond medicine and into something greater then all of us. My faith in God helped me. I believe it helped my son. Thank you God for letting me be a dad today.

Jeromy and his son Eli

Wednesday, June 6, 2012

Dear Hazel...

By Rob Berry

 April 14/ 2011
-5 days old

Dear Hazel-
Today was a good day for mommy and daddy. We were able to hold on to you for three and a half hours, Hazel.

Well let me correct that and say that mommy was able to hold you for three and a half hours. Let me just tell you my dear, seeing the two of you together like that absolutely warms my heart.

I really enjoy watching as the nurses place you on mommy's chest. You make the transition from your isolette to mommy almost immediately.

 What is so cool to see is that as you lay there on your tiny little tummy, I can see your breathing really smooth out, your tiny little body relaxes and your barely move for hours. It sort of reminds me of how I feel when mommy and I get to sleep in after a crazy week of work.

The other thing that brings joy to me right now is seeing how happy mommy is when you two get your cuddles in.

 I can see the excitement building in mom's eyes as we drive to the hospital. Ya, I should probably watch the road a bit closer but don't worry, daddy is a great driver. Your mommy loves you so much it is beyond comprehension.

 I feel the same way. Hazel we both know you are special and that you are a gift from heaven above. You have an ability to inspire people which is out of this world. In five short days you have already touched the lives of so many.

We thank god for you everyday and I know that your Baba (Grandma) is watching over you very closely. She was a nurse, a really good one, and well she loved her family more than anything else. I know that she loves you just as much and that makes me smile. I promise you that I will teach you all about her as you get older.

Yesterday was a big day for me and you. I got to cuddle with you in kangaroo care. Your poor little face was pressed against daddy's hairy chest for two hours. Sorry!

 It took you a little longer to settle in with me but once you did it was awesome. Your tiny head, your little fingers, your cute little bum and your perfect feet,  I could go on forever.

 I have felt a bond with you since the first time I felt you move inside mommy. When I read to you each night we felt you kick and jump. You were most active when you heard Curious George. Hearing that I was going to be a daddy was music to my ears. I couldn't wait to meet you.

 Holding you close to me today was a whole new level of connection. I didn't want to let you go. I am the luckiest man in the world because I have two amazing girls in my life, you and mommy.

You and I had our first daddy daughter talk and it was daddy trying to convince you of the joys of pooping (you haven't done that since Saturday when you were born).

We also set you up with your first hockey crush. It is tough trying to find a hockey crush for your daughter but mommy and I picked Jordan Eberle. He is talented but not too flash and well he is little like you.

 Your Uncle Doug said you are also tougher than him and he is probably right. We put a big Eberle window cling on the wall so the nurses and the family across from us that likes the Calgary Flames can see what's what.

It is getting late so I will end this letter. Your are strong my little Hazelnut. I love you with all my heart. I will write again soon. Til then goodnight and I Iove you. I can't wait to see you tomorrow morning.


Tuesday, June 5, 2012

Homeward Bound- A Preemie Comes Home

By Joel Brens

NICU Graduation Day!!
Two years ago today was one of the best days of my life. After having our son Jayden a little over 7 weeks early, our 25 day journey in the NICU had come to a close. We had experienced more joy, fear, pride, and uncertainty in a three week period then I expected to deal with over a lifetime. The night before he was to be sent home, I raced to the hospital after work in the middle of the night, eager to hear the news first hand. As I walked into the nursery the nurse stood by him, with a smile on her face, and said "Looks like your going to be taking him home tomorrow." I shed tears. Relief, excitement, and a substantial amount of fear set in. Whether I was ready or not, full-time dad was a new responsibility. While having a child in NICU gives you the chance to learn diaper changes and bottle feedings, the idea that a still fragile being is your full responsibility is a daunting proposal.

I probably slept a total of 5-6 hours over the first two nights Jayden was home. It wasn't quality sleep, either. It was more like resting my eyes. After 4 days home with my wife and son, I had to go back to work. I had a tough time adjusting to a work/family schedule but my amazing wife Gena took a bulk of the baby responsibilities the first week so I could adjust. Looking back on the experience I would like to lend this advice:

For moms:
Who looks more exhausted?
  • When the baby sleeps, you sleep. Just do it. Mornings, afternoons, evenings. Infants are very dependent on you and sometimes they don't sleep when you hope/expect them to. Sometimes you just need to say "forget the to-do list" and let your body re-coup. I'm begging you, for your health and sanity. Take a nap.
  • At wits end? Put the baby gently in the crib/bassinet and walk away. Give yourself 5 minutes to decompress. A crying baby will be okay. When I was on my own with Jayden, it saved me from losing it a few times.
  • Don't pack away your feelings. Try to communicate with your husband/significant other about how your are doing mentally, physically and emotionally. Ignoring fear, anger, and stress leads to much bigger issues down the road.
For dads:
  • Be a team player. Take turns with overnight duties. Regularly clean bottle parts. Offer to take the child for a walk when you think she is staring to go crazy. Anything to ease the workload for mama. As a father, you played a large part in the creation of life. Own the responsibility.
  • Emotion does not equal weakness. I spent the better part of a decade packing away sadness, guilt, and anger about a million different things. When I "grew up" I realized how much better I felt sometimes after a good cry. These days I talk a lot about my emotions. From joy to depression and everything in between. It's helped my relationship with my wife significantly. Try it out for size. It may  just help you out too.
  • Be active in your child's development. Go to doctor visits. Ask questions. Shower your child with love and attention. Read, sing, talk. As much as possible. I wholeheartedly believe Jayden is such a happy child because we put the time in to remind him he is the world to us.   
Where did my preemie go?
Some days last FOR-EV-VER. Then three weeks fly by and you're caught thinking "How did I get here?" Looking back I'm glad I took time to appreciate the little things. It moves by so fast. Too fast. As the parent of a preemie I was consumed about his development. So much so there are times I miss just watching him lay there, taking the world in one astonished gaze at a time. I don't sleep like I used to, but I think that's likely the case with most new parents. Having a routine benefited Jayden as well as Gena and I.  In no time he was six months. One year. 18 months. Just this May he turned two. What a trip.

Today I will celebrate so many things. Being a dad. Being a husband. Embracing vulnerability and letting it help me grow as a person. Jayden's smile, his laugh, his earth shattering blue eyes, his mom's stubbornness, his dad's clumsiness, his uncanny ability to be adorable after pushing our limits to the brink. But most important of all, I will celebrate it for all the dads who are waiting for their turn to bring their treasure home. For that life changing moment is one I will never forget, and one I pray all NICU dads will see.

Daddy loves you Jayden

Monday, June 4, 2012

Mark Brislin- My NICU Story

Mark and his son Owen
By Mark Brislin

It was around day 16 of my son’s 52 day stay in the Morgan Stanley Children’s Hospital in New York City. He was recovering from his Congenital Diaphragmatic Hernia (CDH) surgery. CDH is a life threatening birth defect that occurs in 1-2500 live births. It is a condition that occurs during pregnancy when a hole in the diaphragm allows abdominal organs to move into the chest and restrict lung growth.  As a result, the developing lungs are compressed, the heart is displaced, blood flow is restricted and pulmonary hypertension can occur. Some research suggests that CDH has a 50% survival rate, and most doctors will tell you that each case is different and the severity cannot be determined until the child is born.

It was a dark time in the NICU for me.  Although my son’s case was no longer grave, my emotions were starting to get the best of me.  I had compartmentalized the first 14 days after delivery, the first sight of him with tubes in and out of every orifice in his body, finding out he had a severe infection and clot in his heart, surgery day, Hurricane Irene and just being a first time Dad. Two days earlier we had the euphoric moment of holding him for the first time abruptly interrupted by his Pod mate and fellow CDH baby D-stating. His monitors went to all 0’s and a team of 20-30 doctors and nurses rushed to his bed side. We were kindly asked to leave to allow for the privacy of the other family.

The NICU is an open wound; the curtains don’t hide the trauma that goes on in each Pod.  Yes, babies go home every day. The celebration lasts for about a minute as the baby is paraded up and down the hallway, with nurses and doctors joyfully remembering that child’s journey. The other parents look on- there’s no jealousy or resentment just the hope that they will get to take that walk one day soon. But then the security door clicks closed, the elevator pings faintly in the distance and the family heads down to the main floor and out into their new world. The NICU sighs for a moment then comes back to life, monitors beep because medication needs to be changed out, alarm bells ring and the teams head in again.

Some days you return to the NICU from lunch and the cleaning crew in the Pod next to you is mopping the floor, the isolet is empty. You’d ask the nurse if the child was moved to another area, but their reaction doesn’t warrant an answer.  Many people try to understand what’s it’s like to be a NICU parent, but you can’t explain to them how your life changes when you hear that mortal cry of a mother who has just lost their child.

So it was that kind of day for me. I had been asked to leave and I removed myself to a quiet, parent’s only waiting area. It was late at night; the regular visiting hours were over.  Although my wife had recently begun attending the parents’ support group, I had refused to go. I didn’t need it. I had it all under control. So I thought. Until I hit that waiting area and my legs started to give out from under me. The hallway, although just ten yards from the nearest couch, looked a million miles away. I hit the soft leather and the emotion poured out. Not just the 16 days in the past, but the past year, the uncertainty of the pregnancy, the CDH diagnosis, the thought of having to return to work on Monday.

My wife found me in a puddle, and immediately thought something had happened to Owen. I explained what happened with our Pod mate. We sat in that area holding each other and just quietly sobbing and praying.  All of the support staff had gone home, just doctors and nurses remained. They walked by but didn’t intervene. They saw this daily and knew to just give a quick smile, they understood.

As we left the NICU that evening, my wife pointed to a sign posted next to the elevator door. On it was a date and time for a Dad’s only support group. I looked at her, and before I could protest, she said, “You’re going, they might have strategies to make Owen more comfortable.”

So that Wednesday night I reluctantly went to the room where Dad’s group was being held. I stood in the hallway checking on the current Pennant Race, for my team the news was all bad. A woman came out of the room stating she was Lizzie from Child Life and asked if I was there for the Dad’s Group. I, in my most sarcastic and unwilling voice, told her I wasn’t sure. In her bubbly and optimistic tone, she told me that I could sit out there all night, or I could come in and just listen and enjoy some of the snacks that a great deli in New York City had provided. I went in. During that meeting I learned a lot about Child Life and NICU life. I learned about the nursing process, how we could pick our primary nurses and recommend to the charge nurse those that we didn’t want to be with our son.

 Then a guest speaker arrived.  It wasn’t so much his large stature that occupied the room but just his presence. He walked in and introduced himself as Ranford to the dads in attendance. And then he asked us to tell our stories. Both of us did, he thanked us for sharing then proceeded to tell his own. He was the father of two preemies, a boy and a girl. They struggled for months to survive, and like many preemies rode the roller coaster of medical conditions. Just a few days before they were to come home, with both of them thriving, they received a call from the hospital stating their son’s condition had become grave and they needed to get to the hospital right away because doctors weren’t sure how much longer they could keep him alive. When they arrived at the hospital the doctors explained to them that they could try many invasive procedures to save their son, but the odds were stacked against him. So, that night with their daughter set to come home in just a few short days, they held their boy until he passed away. This large man stood before us and cried for his son. But then he said something that I will never forget. He said that, “After your journey in the NICU ends, once the Post- Traumatic Stress Disorder has passed and you’re ready, keep the Dad’s Group alive. Whether it’s through coming back to the hospital or sharing your story online, help another Dad cope with their own emotions.”

So today I move on.  Although I will never forget, the nightmares are fading. The constant ringing and beeping of monitors is passing. Now I get to control what I remember. And as my wife told me, you can choose to focus on the negative or the positive- it’s up to me and no one can tell me what to feel. As I entered the hospital again on Tuesday for another surgery for Owen, there was no panic. Now returning to the scene, I felt safe, almost at home.  As we were leaving that day, the NICU was buzzing, new cases, new babies. But what I saw were new Dads with that look in their eyes- the one only a NICU Dad can really understand.  This blog post is for them. You may never feel comfortable asking, you may never think anyone understands, but know that it’s okay to feel, it’s okay to hurt and it’s okay, in your own way and at your own time, to allow the emotions to fly. No one will ever know if you read this but I hope if you do, you find comfort.

I dedicate this post to my son Owen and wife Maria, whose strength and resilience amazes me every day. They inspire me to be a better dad and better man and to now try to help those that walk in my shoes.

To Lizzie and Ranford, two angels that I hoped I would never have to meet, I am a better person because I did. It’s time and I am ready to accept the responsibility.

And to Papas of Preemies for giving me the platform to educate people on CDH and being open to accept all NICU Dads no matter their diagnosis. I look forward to sharing more of Owen’s story in future posts.

Friday, June 1, 2012

Jonah - My Birth Story

Jonah and his son Nash
By Jonah Rhodes

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand."   - Isaiah 41:10

February 28th was shaping up to be “just another day” for me and my wife Melissa who was 24 weeks pregnant. She told me about a what we thought was a minor little issue that is common with pregnancy, and Me being the extra cautious, soon-to-be Dad I insisted she call her Dr to get some advice. They said it was probably nothing, but if it got worse come in to the ER and let them check it out, and more than likely she would go back home. Well, that night around 1am, we decided to take a trip to get checked out expecting to come right back home to bed. After a day in the hospital on February 29th, Melissa’s water broke. The look on the nurse's face in the room was the telling sign. It was a look of sadness and almost not wanting to admit that it just happened hoping it would change the outcome. The doctor came in and briefed us on the this is what could happen and this may or may not happen super stuff. He told us if my wife didn’t have this baby tonight it would be a miracle. Well, we believe in miracles, and Nash wasn’t born that night. The next day we were transferred to the hospital across town that had a NICU. This is where Melissa would remain on bed rest till our son Nash was ready to be born.

Fast forward two and half weeks, at 3:44 a.m., I received the call that would forever change my life. My wife called crying saying I think I’m in labor. I rushed to the hospital; the feeling was very bittersweet. I thought I should be making this drive with my wife and we shouldn’t be burdened with fear and the unknown. After a labor that went really quickly, at 1:10 p.m., on March the 4, 2012, weighing 1 pound and 14 ounces, the most handsome, wonderful little boy the world has ever known made his appearance. It was a proud moment for me as a Dad, yet a very scared moment as the thoughts of all the what-if’s or could - be’s ran through my head. A couple hours later I was allowed back to the NICU to see him. I remember the helpless feeling I had as I saw my son who shouldn’t be in this world yet fight for life with every little ounce of his being. I stood there racked with fear and guilt that I couldn’t do one thing to help him. This was the first of many times I would feel these feelings. He had tubes coming out of just about every hole, this awful blue light on him, a machine that sounded like a helicopter was helping him breathe. I learned that it's ok to be afraid, and I learned to lean on God more than I’d ever had to in my whole life. I prayed over my son and I gave him back to the One who created him. As I looked at that frail little body, I knew everything would be ok. I knew we had some tough hills to climb but, I had faith that God was in total control of this and His word will not return unto Him void. We have seen many miracles along this journey and I look forward to sharing those with you.