Dear Zoey: A Long Overdue Letter For Your Birthday

My Darling Zoey,

This is a long overdue letter for you about the event of you turning five.  Please look past the few days that have past. You know, all too well, that things have been busy at home.

My little bit, I cannot believe that this day is here.

Time has flown faster than the speed of light since the moment you were born. There is a strangeness in this time.  For as fast as it has gone, I remember so much. Going back to the moment that you were born. Seeing you, this little, beautiful bundle of joy, and hearing your first cry. There was the long walk down to the NICU which felt like a lifetime in the moment, and a lifetime ago all at once. I often look back at this photo and feel my eyes begin to fill with tears.

Zoey in the NICU

I see you, my beautiful princess. Your smile, your little hand wrapped tightly around my finger. You had every reason to be angry in those days, hooked up to machines, getting poked, prodded, scanned and tested. Instead, you were happy. On your very first day with us you showed us how strong you are, and how joy can conquer every situation. We bonded. Instantly. Like a brilliant supernova cascading a radiant glow across the universe, you brought love forward.

Over the last five years we have sat through countless surgeries. I have seen this room more times than any should, knowing that once is more than enough for most. But each and every time, when you are done and back in my arms, you are at peace. We have laughed and watched countless movies while in in the PICU. I have told you fantastic stories to help you take your mind off the pain that you have felt.  All in some effort to cry out and take the pain from you, onto me.  You know that I would do this for you, if I could. But I know that you do not need me to. It is humbling to be your dad. To know that you can handle all that you are facing, with joyous grace.

Zoey and Jacob

As these years have passed you have become the ever doting big sister to two little brothers. The love and compassion that you have for them is visible to all who meet you. Just like the love that they have for you can be seen in their smiles.  You have loved the idea of being a big sister, and you take this title seriously. Far more so than I thought you would, and it makes me so proud.

Zoey and David

That is the thing that is the most important for you to know Zoey.

You make me so damn proud. In all that you do, with all that you have been through, and all that you are going through, you are resilient. You are one to follow your heart, but you listen to your brilliant mind along the way. You are beautiful. My sweet daughter, I will never grow tired of reminding you of how beautiful you are.

It is going to be an amazing adventure to watch you as you continue to grow, to see the woman that you will become. I do think that we get glimpses into this future you from time to time. But today, you are five. An age filled with exploration, learning, and fun. Just do not grow up so fast my little one. I will continue to do all I can to let you be a kid. To fight on your behalf. Using my deep and resounding voice to speak up for you. All while you hold onto my finger the same way you did when you were but a day old.

Zoey and her nails

Happy Birthday my sweet Zoey. May you continue to live big, love bigger and be kind, always.

Love,

Dad

Clinic Day

Monday was a big doctor appointment day through the craniofacial clinic.  I really like that they plan it so thoroughly, but it also makes for a long day.  We met with a psychologist, audiology, ENT, genetics, neurology, cranio, dental, and speech pathology.  We also have referrals for a feeding clinic and ophthalmology.  Overall, it was a positive visit.  We are moving forward with some more genetics testing, looking into the possibility of fluid build-up in Zoey’s middle ears, planning more aggressively toward tube-weaning, and generally enjoying a few more months without worrying about surgery.  Once we have some medical support behind a set plan for tube-weaning, I will probably start a venting/informational post every day to monitor how she does.  In researching my options, I have found other parenting blogs to be most helpful and hope to pass on the encouragement with our experience.  First things first…we still need to be seen by the feeding clinic.

So…..

SO, we received some news today that seemed to be a large mixture of understandable and disheartening.  After a few tests, and a lot of fear, we have been told that we are going to have to go back to using the NG Tube to feed Zoey.  For those that might not know a NG Tube is a nasogastric tube is used for feeding and administering drugs. The tube is inserted into the nostril and travels down the back of the throat, past the epiglottis and into the stomach. For continuous feeding, a gravity based system is employed, with the solution placed higher than the patient’s stomach.  We will be using an IV pole and a LARGE syringe to administer anything that is +1 ounce for EVERY feeding that Zoey has. 

It is understandable because due to the barium swallow test that was done, we could see that (when she gets tired) Zoey is aspirating.  They also noticed that her choking reflex seems to not be kicking in.  Knowing that we have Zoey’s BIG surgery pending as an imminent yet unknown date, the last thing that we want is for her to contract lentil aspiration pneumonia, aspiration bronchiolitis, obliterative bronchiolitis, or any other illness.  I am feeling such a high level of stress, worry and depression over this looming surgery that I really should vent about it, but I may have to save that for later (or never… we shall see).

I understand that this was a tough call for our amazing patient coordinator to make, as she knows how we feel about this.  We (my beautiful bride and I) realize that Zoey has worked her butt off to get to where she is now.  She is an extremely happy and social child, and (I think the blame is on me here) a stubborn and hardheaded one too boot.  We do all that we can to see, treat, and act as if there is nothing wrong.  It is important to us that this is done for Zoey’s sake above all others.  She has never given us a reason to be concerned with any part of her development (aside from the craniofacial issues and the imperforated anus, but these are things out of her control).  In fact, all things considered, she is doing extremely well.  She is barely over 5 months old and she is laughing, trying to sit up, trying to crawl, standing with support, wiping her own face, making great eye contact, trying to hold the bottle, extremely active, extremely inquisitive, she is… she is just awesome.  I know that I am her father and thus prone to bias opinions, but I would just love for anyone to come tell me (to my face) that I am wrong on her awesomeness… but these are also all the reasons for the disheartening aspect.

As her parents, way back in what seems like forever ago, my beautiful bride and I committed that we were going to do what it took to get Zoey out of the NICU and off the NG Tube.  Through much hard work from Zoey, many more hours/days/weeks/months of encouragement and countless prayers… we did just that.  Our goal was to give Zoey as ‘normal’ of a life as we could, showing her love, compassion, support, strength and did I mention love so that as she continued to grow and things started to get checked off, she would know that she can do ANYTHING that she puts her mind too.  I know, that is what all parents SHOULD aim for with their children (but this post is not about that rant… so yeah).  Going back to the NG Tube just feels like we have failed.  I am not going to take the time, or go through the depressing list, of all the ways that I feel like I have failed.  I know that many of them are unjustified… but that does not mean that I do not feel them.

I am finding it harder and harder not to regress back to the tears that I promised my daughter that I would not cry.  For she is strong, and it is through her strength that I have found my own… renewed.  Sleep has started to elude me, yet again, much to the dismay of many in my life (sorry).  Though I am fighting, there is a whirlwind that is abound… but as for now, I will pay it no mind. 

So, where do we go from here?  I do not know for sure.  One thing I know is that I will continue to fight for my darling daughter, and do all that is asked (and then some) of me to make her life as amazing as she is to me.  I will do my best to make sure that we do not (as Fitzgerald said in my favorite book) “…beat on, boats against the current, borne back ceaselessly into the past”.

What do I ask of you, my dear readers?  Pray.  Pray for my daughter to continue to make the strides that she fights so hard to gain the ground that she does.  Pray for my wife, that she can find some peace through the stressful times ahead.  For those of you don’t pray, for whatever the reason may be, consider praying for these two amazing people that I have in my life… I think that you may find them to be a worthy cause.

I AM A DAD, I am scared out of my mind, and that is all… for now.