Monday, June 30, 2014

Doctor Mom. Doctor Faith. Doctor Love. Dr. Sue

I know that with every dressing change, every appointment and every bath I give Harlow with a watertight bag on her leg, that time is slowly passing and with that, the memories of April1st through May 8th, will eventually become blurry. There are parts of that hospital stay that I will happily wave goodbye to, but there are other aspects and certainly people, who I want to embed in my memory for life.
When you're pregnant you spend so much time trying to play by the rules. Eat healthy and well balanced meals.  Take your prenatal vitamins. Don't kill yourself with strenuous exercise. Go to all of your doctor appointments.  And the list goes on and on.  You do the best you can to create a safe environment for your future child.
Then when that precious baby finally arrives, you spend so much time trying to play by a whole new set of rules. You over analyze the smallest details and aim to be that "perfect" parent daily. Make sure the baby gets the best nutrition possible (except for those exhausting days where you pop mac and cheese in the microwave and hope no one finds out).  Make sure the baby is in line with his or her milestones and that you are providing enough stimulation for them. Make sure they feel loved. Every. Single. Day. And of course there is that pesky task of keeping them safe from harm and sickness. And when something does go wrong or should I say when life happens and your baby does get a sniffle or an ear ache, who you choose to take over for you is so very important. When mommy's kisses won't make it all better, you need a pediatrician to come in and make everything okay again.
There have been so many days when I feel I have failed Harlow at keeping her safe and healthy.  You see, my daughter Harlow, who was merely 15 months old at the time, became very ill, very quickly. And my living nightmare rapidly followed.
I believe in vaccinating my children. Whether you do or not isn't the point of this story.  The reason I say this is because I feel I did everything the correct way, regarding Harlow's health. She received the Flu vaccine and was an extremely vivacious and healthy baby.  Until she wasn't.  Long story short...my daughter contracted the Flu A and then a secondary opportunist infection jumped on board too.  There was nothing I could have done to prevent this.  I'm slowly making myself accept and believe that.  You can't wrap your kids up in a bubble. They have to get out and get dirty and scrap their knees.  Of course I would be right there to kiss those knees, wash them off and apply Hello Kitty bandaids to them, but again, I'm getting off track.
The night my daughter was rushed into the Pediatric Intensive Care Unit, I watched as my whole world slowly turned to black. In the first several hours Harlow's mortality expectancy was 85%. Eighty Five Percent!! Family and friends fled to the hospital to be by our side and cover us in love and support.  Many of those faces bring me joy and instant comfort, but none of them could answer my questions or relieve my heart from breaking. 
In the hours that continued, I felt like I was in a horrific movie.  This couldn't be my life.  The baby I wanted for years and was finally given through IVF, wasn't being taken from me. It was as if I was frozen and the world was still going on without me. I couldn't comprehend half of what the specialists were telling me.  I would catch words here and there, but as soon as they would say "it's minute to minute on whether she survives" I blocked them out. My ears couldn't take tht kind of information. My heart wouldn't. 
Dr Sue Hubbard called my husband and I as soon as she caught word of Harlow's situation. It's amazing that feeling you have when you know someone is concerned for your child and wants to personally get in touch with you.  Unfortunately the last thing on my mind was my phone, so her calls went unanswered. The next thing I know,  in walks my pediatrician.  I assumed she was making rounds.  She wasn't. She wasn't even working that day. She came up to the hospital to check on her patient. And to check on us. 
I could feel the air rip from her chest when she laid eyes on my baby girl. Harlow had gone into septic shock. She was swollen from head to toe, covered in a rash and had every tube and iv imaginable attached to her frail body. Although Dr Sue is a professional and has to emotionally stay strong during these times, I could see her eyes glaze over. When she looked at me, her gaze was water filled and I knew she knew how bad it truly was. She hugged me and my husband and instantly became our support system. 
From that moment on, she became a face I needed to see, so that I could allow myself one second to take a break from my grief. 
Whether it was after workouts on her days off or making a pit stop in to visit us after a grueling workday; she was there. Keeping our faith when we were letting it go.  Hugging me when I thought I couldn't stand the thought of being touched; but so needed to be. In those weeks of horror, my daughter's pediatrician became my everything. 
She became a mother to me. (Even though we all know she's far too young for that role). She picked me up when I was down. She constantly got onto me when I wasn't eating or sleeping. She shared in my pure amazement and joy as Harlow miraculously began to improve. She was there for Harlow. And me. 
Pediatricians don't have to do all of that. Her role is to care for my child and this wasn't her specialty, dealing with life threatening septic shock. She didn't have to visit us almost daily. She didn't have to call us from her cell phone, while out of town at a wedding. She didn't have to bring us snacks and goodies. She didn't have to believe that Harlow would get better. She didn't have to wrap us up in her own prayers. She didn't have to. But she did. 
I love her for that.

Thursday, June 19, 2014

Shedding The Excess



It's been 41 days since we brought Harlow back home from the hospital. It's odd to think that I used to love the month of April. Not just because it's my birthday month, but it means spring is here. Everything is colorful and blooming.  The weather is patio worthy and slowly all the heavy winter apparel is packed away. A fresh start. Strangely April has come to resemble something different all together for me. It's the start of a nightmare. The beginning of an undesired journey. A membership opening to a club that I never wished to be a part of. 
I spent the entire month of April watching my daughter's petals turn brown and fall off. I watched her once sparkly aura turn to black. I watched my entire meaning for living, fading away.  
Please don't think I'm not aware that April is also the month that Harlow slowly began to improve.  I know that her health began rebuilding in this month as well, but April still has a dark shadow hovering over it, in my mind.
 But now, she's home. 
Yesterday we had another follow up appointment with her surgeon to see how her heel was doing.  To see if that 6th procedure could finally be her last for many years to come. 
And it was. All of it.  The heel, graft and skin flap all looked healthy, pink and healing. As the doctor removed her wound vac, I nearly choked up.  For what seems like forever, she has had one or two cords attached to her legs.  I've had the luxury of lugging around the satchel and machine, all the while becoming an expert on how not to trip over the cords, close them in car doors, make sure the machine is always charged etc.  As the doc packed it all away...I felt a sense of relief release. Harlow felt it too.  One less accessory. We usually LOVE adding a ton of accessories, but after this whole ordeal, we also appreciate the minimalist approach. 
She began with so many cords, tubes, machines and ivs hanging from her frail body.  I loved the nurses who knew how much it meant to me to see another machine taken away. Another tube disconnected.  Clearing the way to my beautiful baby girl.  
Harlow went from being the sickest baby in the PICU to being the happiest baby everywhere.  She knows that she is no longer tied down with a wound vac. She knows she is free to crawl all over this world.  We still have the back of a cast and ace bandage on her right foot, so she's not able to walk yet.  But what a relieving process to slowly shed the excess. To slowly get back to where we were supposed to already be. 
I'm thankful for her life. I'm thankful for all the machines, tubes and cords. They helped save her precious life.  But...I'm so happy to leave them behind...
April Showers Bring May Flowers.  I believe that. Those horrible April storms, allowed my daughter to reblossom in May.