March 10, 2010 - HLHS over the year.....

How time flies…..a little over a year ago David and I were heading to Milwaukee, Wisconsin to check into Froedert Hospital (adjoined to Children’s Hospital). I remember packing my huge bag of clothes and necessities to get me through 3 weeks up in Milwaukee (the length of time we were told we would be in the hospital post Norwood heart surgery). As I reflect on so many things that transpired, I thought I would share a few I’ve been remembering as Caden approaches his big first birthday tomorrow.

I was nervous, sitting at the Bluemound Café in Milwaukee with David getting my last meal before I started the induction process the evening of March 9, 2009. As I waddled to the table and remember thinking all the things I had read and heard from doctor’s. Your son might not be crying when he is born. He might be blue in color, and you will only be able to hold him for bit before they whisk him away to start the medication to keep the PDA (Patent Ductus Arteriosus) open. Without this medication, infants enter a state of shock and pass within a few weeks of birth. As strong as I was, I was riddled with fear. Scared of the future we were about to embark on. I was worried about everything. Needless to say, David and I took our time over dinner….so much time the nurse called to ask where we were. Oppps! We arrived and checked in to find a note at the check-in desk at Froedert Hospital. It was from my old boss Greg Groth from Grayslake Central High School who hired me 12 years ago. He had been waiting, and waiting, and waiting. He actually waited for over 3 hours (if this tells you anything about what a special guy this is). Although we missed his visit, he left a folded note with a small gray rock on the top. The rock was a prayer stone. Greg carried this rock in his pocket for years and was graciously passing the rock onto us so we could hold onto hope and love for the days ahead. Greg, if your reading this – thanks.

So things didn’t go exactly like I had planned having a C-section, but that was the least of our worries at this point. Caden was beautiful, he was PINK, he was crying. Tears dripped down my face. I was so happy yet so scared. The diagnosis was correct. He was born with Hypoplastic Left Heart Syndrome (HLHS)with severe left ventricular hypoplasia, aortic valve artresia, mitral valve artresia, and mild/moderate tricuspid value insufficiency.

As I got settled into my recovery room, I rested a bit, then was anxiously excited to be reunited with Caden in the NICU. David wheeled me down, I remember the dim lights, the soft voices, the calm atmosphere. I remember wanting to stay longer but I was in so much pain. I needed to be wheeled back up for more pain meds so they could swipe my wristband ID to get what I like to call the feel good pills. I guess it takes someone to feel so helpless to really appreciate someone. This is when I realized how wonderful my husband was. He did everything for me. He was sleeping on what they called a "comfortable couch" in my room, the night before he slept on what they called a “comfortable chair” . He got up for anything I needed, supporting not only my surging hormones, my extreme pain (from c-section), but the fear in a few days the most difficult of all the sugeries for Congenital Heart Defects would be performed on Caden. He was just as exhausted as I was yet he was my rock, he was the got me through not only the next few days, but months ahead. Thanks David! I love you, and appreciate everything you did, and continue to do for our family.

Luckily, David and I had looked at pictures of other babies who had gone through the same surgery, I don’t think anything can prepare you for walking into a room with your baby hooked up to so many machines no matter how many pictures you see. I remember just staring…at everything. Listening to everything, there were so many beeping machines, alarms, how can anyone stay in a room for hours listening to that? Well, it’s funny how after time you forget all the alarms, beeps, and noises the machines make, and somehow it just fades into the normal sounds of life. Besides all the noise, Caden had two round the clock nurses at his bedside (Melissa and Suzi), and a cardiologist (Dr. Rao) sitting in a chair starring at the monitors watching for any sudden change that would warrant immediate attention. I remember David asking Dr. Rao how long he (Dr. Rao) stays and stares at the monitors and he said…..it’s a good thing when you see I’m gone.

It’s amazing how vividly I can remember specific events, days, hours, minutes of his hospital stay. I remember how many times I cried walking up and down the halls to get to the breastfeeding (pumping rooms). How I was so angry that the one thing I could provide our son, I could barely produce (milk). The stress, the hormones, the pain, was causing my breastmilk to be almost non-existant. I remember sitting in the room one evening and there are 3 other rooms (spaces)partioned off with curtains for mom’s to go and pump more privately. I could hear another mom crying next to me….I wondered….does every mom who ‘s baby is sick and unable to breastfeed go through this. It took a long time before I could wrap my head around all of those feelings too . Then, there was the rollercoaster ride. The daily grind of hospital life, the day in, day out frustrations of Caden not eating, throwing up, infections, PICC lines, new medications, dropping saturation levels, the list goes on and on. I started to count down the days until we could go home…we were told approximately 3 weeks. The days turned into weeks, which turned into months. We spent birthdays and holidays in the hospital. This was the hardest thing I've ever had to do.

Over the months what I never realized was how hard it was to care for a sick child. What so many other parents out there now were doing and I had no idea. I never understood. What a different outlook on life I have now. How I now cherish everything and never take things for granted. Walking back each night from the hospital to the RMH. We watched the snow melt, and spring flowers start to bud. I would see parents strolling their babies for a walk outside and start to tear up wondering “why me”. Why couldn’t that be us. Life seemed so unfair. My stroller wasn’t even out of the box at home and Caden was almost 3 months old. I guess it’s those things that made me appreciate everything. Just seeing a little smile, or when he squeezed my fingers. What a great feeling.

What about the familiar faces day in and day out. All the other families you saw every day, wondering what they were thinking about, and how they could do it. I knew if they could do it so could I. The families we met not only at the RMH but the families on the cardiac floor. The nurses that cared for Caden were amazing. I spent more time with them than I did my own family. How close you become with them, how truly amazing they are at not only helping Caden, but reaching out to David and I by lending an ear, a hug, or just the right words. Forever I am thankful. It’s funny how just over a year ago I didn’t know what Hypoplastic Left Heart was, I didn’t really know all that the Ronald McDonald home did for families and now it is my life. My life has changed for the better. I would never want to relive it, but I do appreciate what this experience has brought into my life. I went from having my regular ob-gyn to deliever Caden to having so many more doctors with so many specialities. The perinatologist, cardiologist, neonatologist, profussionist, cardiothorasic surgeon, intensivist, speech therapist, physical therapist, dietician, lactation consultants working with us day in and day out. At least now I know what they all do.

This experience has given me a deeper appreciation for life, people, and reaching out to others. I hope someday we can help other families who are just finding out about a similar diagnosis. The scary rollercoaster of emotions you go through, the disappointments, the frustrations of hospital life, the things you miss the most. Although each situation is different, I hope to someday be able to give back to someone like so many of you have done for us. As the days go by I am blessed to have our fighting son Caden with us today sharing life together. Although I am plagued at times with fear of his future, the meds, more surgery, and someday a new heart, and am forced to see how God has created such a gift for David and I. A gift of life, our son. Thanks God for guiding us, giving us strength, and lending a hand when we felt like we were going to fall. You never left our side.

As I reflect…on the good, bad, and disppointing..I am smiling because at 4:58 pm tomorrow 3/11/09 our son will be ONE! God is good.

Love,
Melissa