Monday, July 29, 2013

In Hindsight: Looking Back

By Rob Berry-

It is hard to believe that July 21st will mark the two year anniversary of our daughters' release from the NICU. She came into this world on April 9th that year at a whopping 1 pound 11 ounces and changed our lives forever.

I was reading through some old notes/letters that I wrote during our daughter's (Hazel's) 107 day stay in the NICU and stumbled across one that I think captures my growth as a NICU dad.

July 2, 2011

Today marks day 84 in the NICU and although we have a ways to go yet, there is starting to be some early talks about what we can expect when we get to take you home.

Yesterday was Canada Day (July 1st) and mom and I were just blown away that the time has flown by so quickly. Don't get me wrong, it has been in many ways the longest three months of our lives BUT, they have been totally worth it.

This last week has been amazing for you. You got off your CPAP machine for good. You got out of your isolette and were put in a basinet and you were transferred from level three to level two. Level three is for the sickest of the sick babies, level two is a place for babies to grow bigger and stronger.

You are learning to feed on your own and you have made us proud. Apparently, preemies quite often have difficulties with feeding because they have had tubes and other things in their mouths for so long. You have been a rockstar, by your third try you have figured it out. Last night you took 23 mls of milk on your own, that is like half of a feed! Big girl? Yup!

I am sure that if you are reading this as an adult you are rolling your eyes or thinking, 'Dad, why did you think I would want to know all of this?' My answer to that? Too bad! I am doing the typing, I get to set the topic. Actually, I just wanted you to know how far you have come in so short a time.

One month ago you were on a ventilator and today you are at 40cc's of lowflow air breathing on your own. (That is like 27% oxygen). Almost there! Keep fighting!

Love always,

I look back at that piece of writing and it shows an amazing amount of growth as a parent. I read the words ventilator, three month hospital stay, you drank 23mL of milk, almost off your oxygen and think, wow. How would I have responded if someone had told me this would be what the first three months of parenthood would be like. To be honest I think I would have puked out of fear.

It amazes me what people can do when they are really up against it. I believe there are two choices in such situations, sit back and be passive and let the chips fall as they may, or learn, fight, grow and hang on with all your might. Those doe-eyed parents who walked into the NICU hours after their daughter was born were quickly replaced by people who asked plenty of questions and learned everything they could about extreme prematurity.

We became hardened. Like many level three parents, we witnessed things that our child and others sadly should never have to go through. Some of these experiences left deep scars on our hearts and minds. Prior to our trip to the NICU I had no clue such places exist.

Through the ups and downs we learned so much about life and the power of love and prayer. Hazel's NICU journey changed us forever.

When you are in the thick of it you sometimes think it will never end and you will be on that ward for EVER. The walls, they close in. Then talk of home filters into morning rounds and you get excited yet scared. Excited because you know that you will soon leave the intensity that is the NICU. Scared because you know, this is it, it will all be up to you. Factor in home oxygen or other treatments for you child and wow.

Our daughter is now 2 and has grown so much. She was sick with Roseola this week and when her fever was still really high on day three we took her to the paediatrician to make sure she wasn't suffering from an ear infection or something like that. It was more a precautionary trip than anything. The paediatrician is an amazing man and he has walked us through life after the NICU. He was proud we waited three days and was impressed with how we had really thought things through trying to pinpoint the source of Hazel's illness prior to coming in.

After the visit and diagnosis of Roseola, we loaded Hazel in the car and prepared to take her home for a nap. My wife made a statement at this point that sums everything up. She said to me, 'so that's what a normal trip to the paediatrician is like'.  Normal. It is such a loaded word but a word that at times neither of us felt we'd ever hear. It sounded so sweet.

Being the parent of a micro-preemie has shown me that nothing is impossible. At times it has pushed my wife and I to our physical and emotional limit. We will always be grateful for the gift that is our daughter. We both remain forever grateful to the NICU and what it has provided for our family. I think it's important now to live our lives and look forward. The NICU, as important as it was in our lives is now clearly in the rear view mirror.

Monday, July 22, 2013

Joshua King- My Birth Story: Mono/Mono a Mano

Joshua and his twin sons Aaden and Noah
By Joshua King-

Let me start by introducing myself! My name is Josh King. My wife, Michelle, and I reside in East Texas and am a preemie dad of twin boys, Aaden and Noah.  Our family’s story is unique in that we knew from the time of the first ultrasound that our boys would be born prematurely. 

Aaden and Noah are Mono/Mono twins.  This is a rare case in which both twins live in the same amniotic sac.  This causes the umbilical cords to become twisted and tied in what can only resemble a lethal ball of yarn. 1 out of every 10,000 twin births is a mono/mono.  1 out of every 50,000 twin births is a set of mono/mono boys.

At the time we were living in Texarkana and were referred to a twin specialist in Shreveport by the name of Dr. Jones.  Upon our first visit we had an ultrasound and then sat down to discuss our options.  I really wouldn’t call them options, at least they weren’t for us.  Before he could finish his thought about terminating the pregnancy, both my wife Michelle and I knew that was not an option.  We were told that mono/mono twins do not last in the womb longer than 32 weeks and would have to be delivered early.  In addition to that grim news, Michelle would have to be put on home bed rest at 20 weeks and be admitted to the hospital at 24 weeks to be actively monitored to make sure that both twins had good strong heart beats. 
The pregnancy was quite uneventful and went normally, with our whole focus being on that magic ’32 week’ delivery date.  On a positive note, we could fill up numerous scrapbooks with all the ultrasound pictures we amassed from our trips to Shreveport.   Michelle went on home rest and other than ‘cabin fever’ everything went according to plan.

At last the dreaded admittance into the hospital. Dr. Jones told use before we checked Michelle in that we should go have a ‘last meal’.  As clever as I am sure that sounded to him, we were not amused.  Michelle was admitted and we moved into our home for the next, what we thought would be two months. 
I drove the hour-and-a-half trip so much it began to feel like ten minutes.  It was at the 28-week mark.  We were halfway to the ‘magic’ date.  The evening the boys were born, I had originally decided not to go to the hospital, however ended up going anyway after Michelle asked me to.   That evening as we were preparing to get some semblance of rest Michelle’s monitor began to go off indicating that Twin A’s heart rate had dropped.  Within minutes Michelle was prepped and rolling off to deliver our boys.

I remember waiting in the hallway staring at the doors to the delivery room praying that everything would be ok.  The nurse on duty did her best to distract me with idle conversation, but I’m sure I was about as interesting as a pet rock.  In less than fifteen minutes my two boys came zipping past me in incubators being kept alive by breathing bags.  The NICU nurses smiled and congratulated me as they wheeled my newborn children off to save their lives. 

I remember the first time we entered the room.  I have never been more scared and grateful in my life.  I had no idea what to expect and felt very much like a lost soul.  They escorted us to their bed sides and we were allowed to touch them.  It was the most amazing experience!  The small, fine hairs on their back, their warm bodies from the lights, the noises of the breathing machines and heart monitors, how small they were, I remember everything.  Aaden was 2’11’’ and Noah was 3’7’’.  They told us that they were stable and were doing great and that our lives would be a roller coaster, and to be prepared.

I could never be prepared for what was to come.  The Sunday after they were born Michelle and I were coming home from an evening visit when we got a call from the NICU.  They left a message saying to turn around immediately and that Aaden was in critical condition.  I mean how could that have happened? He was fine not even an hour ago! We cried, prayed, and drove at a rate that could only be considered the speed of light. We parked and ran to the NICU and announced to the world we were there.  They opened the door and we burst through and were met one of the Neonatologists.  Quickly she said that they had saved him and he was stable.  I remember my body going limp and crying uncontrollably in this small woman’s arms.  This saint, this genius, this bringer of great news!  I remember Aaden looking up at us, sedated, and us just being so thankful he was alive.

Our boys spent three months in the NICU and arrived home shortly before their actual due date.  We made some great friends in Shreveport; the doctors, nurses, preemie parents, and the small ones fighting to survive all inspired us and helped us cope with one of the greatest uncertainties we have ever faced.  I thank God every day for those who gave us strength and for our two mono/mono miracles!