Loudness Of Your Stare

As the near loss of my daughter turns another page on my calendar; life has begun to feel somewhat normal again. There are still doctor appointments to attend and although we have FINALLY shed that last cast, we have moved on to silicone therapy on her scarring. Her latest accessories come in the form of thick, knee high, athletic socks.  Blake and I laughed, as before, when people would see Harlow with her wound dressings and cast, they would instantly show us pity, or smile at us. Now, people simply think we have no style whatsoever and think it's chic or cute to clothe our baby girl in a dress and tube socks. Oh well. I'll take it any day of the week. Means we are still moving forward.  

As the dust settles on a horrific time in our lives, routines reinstate and days pass with little to no fumbles. It's funny how you naturally adjust to new schedules and additional daily tasks.  Add it on to my to do list.  It will get done. 

It's nice to have the questions, puzzled looks and obvious whispering...lessen.  It used to tear me to shreds to have strangers glare at my baby. I could feel their stares. I could sometimes feel their invisible fingers pointing at me, as if to blame me for what they imagined must have happened to my child.  It was almost like I could hear them watching and assuming I neglected my daughter and her casts were because she broke both of her legs.  That guilt that they placed upon me, cut like a knife.  

Maybe I place blame on myself, for the scars that Harlow will forever have to bare. You always want your children to have it better than you did and in that sense, maybe I have let her down.  I will never know what it's like to grow up with skin grafts on the back on my calves.  I'll never know how it feels to walk with half of a heel.  And I hate that. It makes me sick to my stomach to know that is her burden to carry. 

But I did everything I could to keep her safe and healthy.  She is my greatest joy and the best thing that I've ever had...protecting her is all I think about. Septic shock is nothing I could have prepared for.  No one could.

Scars heal and slowly fade. She won't remember any of the trauma she experienced.  I pray that walking comes easily for her and that with the help of physical therapy, she can learn to be mobile, with no pain. As those concerns ring in my head, new questions arise. 

How is this little 17 month old so strong? How will these new scars affect her?   And the most important one....how would I live my life without this precious blessing that I have been given?  

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.

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. 

Fragile Strength

Lately it seems I have been praised or applauded for my "strength" during the whole Harlow health scare.  I have never been one to take a compliment well and it seems I'm no different in this scenario. I know that everyone who has taken the time to let me know how proud they are of me, how much they admire how I have dealt with all of this, how they can't imagine how I am doing so well throughout these past 6 weeks...they all mean nothing but the kindest of words and intentions.  And I really appreciate all of them for that encouragement and support.  But it almost makes me chuckle to hear that everyone thinks I'm super strong or facing this battle head on.  The truth of the matter is...I'm not. Not at all. Someone posted on the #HealHarlow page a quote about not knowing how strong you are, until being strong is your only option.  I choose that one.  It's not that I wanted to be strong. It's that I HAD to be strong.  I tucked away every fear, every panic attack, every nightmare, every cry in the shower, every piece of bad news, those first few days, the words "we almost lost her"....I stored it all in a vault that I reserve for these situations. For about an hour or so, I allowed myself to fall apart in the beginning.  I bawled and hyperventilated and nearly passed out. I immediately went into that dark place, that I spend so much time trying to avoid.  I imagined Harlow not making it. I imagined how my life would be over. I imagined leaving the hospital without my baby girl.   I imagined walking back into our house and knowing that all the joy that once lived there, died with my angel. I went there.  For about 60 seconds and then I shut it all off.  I cannot go to that place as I fear I would never return. Some people say it's unhealthy to push feelings to the side, but it's my survival mechanism. It's the only way I could face my baby girl each day.  Visitors constantly broke down when they laid eyes on Harlow. I don't fault them in anyway. It's a natural reaction and although I comforted these people and reassured them that she was getting better...inside I feel I was desperately begging them to let it all out. Their tears could be mine for the time being.  Their sense of hopelessness could be mine as well.  Could I have broken down every single second of the 39 days we spent in the hospital? Absolutely. Would I have been entitled to that?  Of course. But thoughts become things.  I was terrified of allowing my mind to wander and so I blocked out all negativity. I blocked out those first few days and all the odds we were against.  I kept my eye on the prize. She would live. She would get better. This wasn't happening to her. Or to me.  Or to all my plans and dreams for us.  My life would be stripped of all it's purpose if she died. So there simply was no room inside of me to accept that fate.  Once Harlow was awake and slowly revealing bits and pieces of her old self and spirit, there was even less space for my weakness.  She was alert and very aware of her surroundings. She was affected when people became upset. You could read her face like a book.  So mommy only smiled at her. I only cooed and praised her and handled her with white gloves.  Perhaps that is what people were doing with me.  Building me up so I didn't crumble.  I thank them for that.  Harlow is alive. She is safe and slowly getting back into a routine. She has limitations and needs more care, but she is back in our home and our family is in tact. Have allowed myself to weep for all that almost happened?  Not quite yet.  There is still a long road ahead of us. She has more procedures and appointments and wound vac changes and months worth of medicine to endure. She knows this isn't normal. I do too.  But it's our normal for now.  And I am thankful for every bit of this time.  Thoughts become things.  I said she would live. I said she would go home.  I say now that her heel will heal. That she will recover quickly. That she will walk. That her calves and heels with keep improving and return to a somewhat normal appearance. I say it.  I believe it. I have to. Strength?  I'm not sure if that is what I'm exuding.  Hope?  Maybe. Need?  100%.  I begged for time. I was told only time would tell us if she made it. It was known that this recovery would take a long time.  I have that. Harlow has that.  When will I find the time to allow this whole experience to truly sink in?  I'm not certain. But I grew up witnessing my mom always being this pillar of positivity and happiness. She never showed weakness. I never saw her cry or appear hopeless. She always seemed like she had it all put together and didn't have the want, need or time to fall apart.   I am forever in debt to my mom for showing me this. It is the only reason I made it through 6 weeks of hell. It's the reason I refused to believe the odds. It's the reason I have that vault.   The trouble with hoarding all those emotions is that eventually, the door will open.   But it's still sealed tight today, tomorrow and every day til I feel Harlow is well enough for me to grieve for all that was almost taken from me. 

Crunching Numbers

3- number of years we tried to get pregnant
4- failed iui procedures
1- successful IVF round
9- months of pure bliss and excitement
02/05/13- the day My child was born
1 hour and 15 minutes- amount of time I pushed
5:42- when I became a mother
5:43- when I met my Daughter...we didn't find out the gender
13.5- months of perfection and adoration, watching Harlow grow and become her own person
04.01.14- beginning of my worst nightmare
85- percentage of her mortality rate for 3 days
1,000,000- tears shed
23+ - number of IVs and drips
6- blood transfusions
1 in 3- odds of recovering
0- number of limbs she was expected to have in tact
2-PICC lines
8- leeches on harlow's right hand
4- surgeries
2- joy pink casts
12- nails she may lose...toe nails and finger nails
3 1/2- weeks we were in Pediatric Intensive Care Unit
38- days that we have spent in Medical City
0- nights I've spent away from the hospital
1- day till we go home
1- wound vac we take with us
6 to 8- weeks til all the skin grafting is done and hopefully healed
1- daddy who is ever thankful for his daughter's miraculous recovery
1- mommy who has mentally blocked out the beginning of this horrific journey, to attempt to heal
Infinity- the thank you' s we owe to everyone who has sent prayers, love, support, gifts, meals, visits, and continuous hope
3- the members of our family going home tomorrow

2- hands in full recovery 

2- legs, skin grafted and recovering
1- mother who will celebrate more than usual this Mother's Day, at the amazing fact, that she, against all odds, is still a mother today

Day 25 and counting....

I remember thinking back on those three long years that we tried to get pregnant.  I remember how agonizing and difficult of a journey that time was.  How we would wish, pray, beg and plead to finally be able to conceive our baby.  I thought that was the most trying time in my life, our life; but I was so wrong. 

  

On April 1st, my father's birthday no less, my worse nightmare slowly began to unravel. Many of you already know the story and in an attempt to not make this post a novel, I will fast forward a bit.  

Three years waiting and wondering if we would ever get to become parents was nothing compared to the three days that we waited and wondered if our baby girl would live or not.  

In a nut shell...

Harlow had a fever and was vomiting

We took her to the doctor

Sent home to observe her as she had a stomach virus, most likely

She became lethargic and wouldn't drink anything and I panicked

Called doctor and was sent to the ER

Tested positive for Flu A and blood pressure, blood sugar and electrolytes were extremely low

Admitted to children's hospital

Watched for 5 hours as she slowly began  dying right in front of us 

Finally PICU doc sent to see her after I pointed out that she had a large abscess on her neck, was struggling to breath, and had a huge rash covering her entire body

Admitted to PICU where we waited for over an hour for any news

Told they almost lost her, twenty minutes after she was brought in

Blur, blur, blur

85% mortality rate for the first 3 days

Slowly began responding to meds and organs showed signs of working

Days and days passed

Almost lost her hand and two legs due to loss of blood flow

Medicinal leeches put on her hand and completely saved it

Two surgeries to remove dead tissue and skin from her legs and heel

22 days in PICU and finally sent to the normal children's hospital floor

Day 4 on the normal floor and we are thriving

Scheduled for skin grafts on Thursday, it's currently Saturday

Hoping to be sent home a day or two after the surgery

I'm leaving out millions of tears, break downs, questions and details as not only would that take forever, but at this point I have mentally begun blocking out those first few days.  It is just too difficult to try and recall or relive that terror.  We made every deal with God and promised that I would never need another child.  That I wouldn't even ask for another baby. That I would be content and wouldn't even mourn the possibility of a sibling for Harlow. But He could not take this baby from me.  I wouldn't allow it.  I wouldn't be able to handle that and would question everything if this happened.  

I know now why we were put through the test of infertility.   It was so we would cherish every single moment with our miracle baby. It was so I could gain strength and knowledge and empathy for others who struggle through the vicious cycle. It was so I could overcome my fear of needles and medications.  It was so Blake and I could grow as a couple; fall apart and come together again. It was so we would never take our child's life for granted. And we don't.  Ever. 

But this test?  I can't wrap my mind around why we would be put through this one.  We had everything in perspective. We cherished and cherish the hell out of our daughter. We know what a miracle she is, everyday. 

Maybe it was to show us how much Harlow has touched others' lives. To let us see how sharing our struggle, life and daughter with the world, has affected people.  To let us know that we are not alone. That others also know what a special child our daughter is. So that we can one day share this story with her.  To tell her she's magical and brave and a true miracle. Times two

We may never know the reason for this awful experience.  But that's not my focus. My focus is that Harlow has beaten all the odds. She continues to amaze doctors and nurses who didn't expect her to survive, let alone keep her limbs.  My focus is my child. I stare at her and can't even imagine what my life would be like without her. If the % would have proven true.  She is my heart, my reason and my world. I exist because she does. I am ever thankful for these 25 days.  We are still here. We are still fighting. We are trying to recover. We are still a family. Always. 

Black Is The New Pink

There is something so tender and whimsical about baby girls.  Their innocence and gentle nature make it easy to see why the saying goes, "Thank Heaven For Little Girls".  There is also that lil rhyme that says girls are made of, "sugar and spice and everything nice".   I'd like to emphasize the SPICE part.  

Why is it that society feels that all baby girls must be slathered in pink and ruffles?!  If you go to any baby store, it's easy as pie to find the baby girls' section. It's the one that looks like it got doused in Pepto Bismal.  Nearly every article of clothing is covered in pink (and maybe a tad bit of purple) and has a heart, kitten, flower or something else totally girly all over it.  Now, some of he boys' stuff isn't much better....dinosaurs or sports much?  But the boys also get all the cool designs. Arrows, stars, skulls and guitars.   They get cool colors like gray and black.  It's like it's never entered a baby girl clothing brand to dabble into other hues of the rainbow. (Ok, so I'm pretty sure gray and black aren't in the rainbow.....stay with me). 

I'm happy to see animal print is now available but it's never a cool print.  It's like the designer is afraid that if they just make clothes with leopard print, no one will buy them. How would anyone know the baby was a girl?  I dare say you put a bow or headband on her head. So they slap on some silly pink and now it's suitable for girls.  And just a PSA: it IS possible to dress your daughter in too much leopard.  Same with camoflague.  When was the last time you saw cool camo in the baby girls' department?  Apparently moms can't just add their own flair to a camo outfit and justify it....nope.  They have to have PINK camo pants....which totally makes sense.  Try hunting in those and let me know what you get.  

You should see the confusion on the sales clerk's face when I'm perusing the boys' section of baby gap, holding my daughter.  They assume I must be buying a gift. Nope. I just want a cool flannel shirt that isn't purple and pink. I wasn't a traditional green, blue and red plaid. Same with some jeans.  I don't want back pockets in the shape of hearts. I want normal looking jeans. Harlow wears lots of black and gray and red and she does wear a little pink.  I'm not saying that some pink isn't adorable and stylish. I just don't get why everything has to be that shade. Your newborn daughter doesn't have to be in black leather pants and a blazer, but you bet your ass if they made that, I would've bought it.