Thanksgiving

Today is Thanksgiving and typically I approach the holiday more focused on my stomach than my heart but this year is quite different. This year I'm flooded with thankfulness and my heart is shouting out songs of praise. This year brought many challenges, the toughest I've ever faced, and those challenges have brought triumph and a humbled and grateful presence to my soul. I started this Thanksgiving with hopes of bringing our Cooper home to celebrate the holiday with us under one roof, but quickly learned that today is not the day our boy will make his journey home. My heart sank a bit then I realized just because it's not today doesn't mean it's not tomorrow! As I reveled in that realization I was comforted by the words our nurse Dawn spoke on her way into our room..."Looks like tomorrow is the day!" TOMORROW! Sweet, sweet tomorrow! How appropriate that Dawn was the one to speak those lovely words. The words that brought the "dawning" of a new day, a new light, and a new hope...all beginning TOMORROW!

My emotions overflowed, just as I knew they would. I held onto my boy that almost wasn't and began my prayers of thanksgiving that my boy IS! He IS here. He IS breathing! He IS mine to keep for now...to take HOME! The thankfulness flooded my heart and shook my body with tears of joy. My mind began to wander down the road we just traveled and the tears flowed more freely. God carried us through so much and blessed us with miracle after miracle, answered prayer after answered prayer and here we are still standing by his grace. I allowed my mind to carry me through each incident, each trial, and each painful memory that these past weeks has brought to our reality. I allowed my soul to linger on the thankfulness for each one. Each obstacle representing yet another opportunity to praise the Lord. I was living my prayer of Thanksgiving to God. I had no words only lingering memories and tears. I allowed the Holy Spirit to speak the words I couldn't utter. Thank you dear Lord for all that you've done!

Not only am I thankful for Cooper's health but I'm also thankful for the impact his story has had on those around us. I know our boy is special and he was created for a unique and beautiful purpose and that purpose is already shining. All the support, kind words, food, hugs, prayers, gifts, care, and kindness we have received through this journey brings me to my knees. We are so humbled by the outpouring of love that we can't say thank you enough. We could feel the support and prayers surrounding us and carrying us through the dark times and we can see the light and joy now in the praising and healing times. We are beyond blessed to see Cooper's story affecting and touching so many and we thank you from the bottom of our hearts for sharing it with others and sharing in it with us.

I have oh so many thank yous to send and give that Cooper may be 5 before I get around to them all, but here are a few specific ones that are lingering on my heart right now.

Thank you to Dr. Johnson for being on-call and telling me to go straight to the hospital when I wasn't feeling my baby moving. He explained that typically he would advise a mother-to-be to relax, lay on her side and wait, but he heard something in my voice that made him do otherwise. I thank you for that doctor, and know that God worked through your direction.

Thank you to the triage nurses for your no-non-sense care and information. It would have been easy to sugar coat the situation but you offered advice and direct information to prepare us for what lay ahead.

To the ultrasound techs that handed me tissues when the tears began to flow at the sight of my limp and sick baby. Thank you for your kindness and promise of prayers for our situation.

Thank you to my dear mother. Your devotion, support, and love carried you out the door and down 5 hours of highway to our family's side at 1am without question. I can't thank you enough for that. You have never failed to be by my side and I know you never will. You are the rock I can always count on and your fierce love for me always comes through. I love you oh so much and always ALWAYS will!

To the many nameless faces I met on the way to and in surgery; your patient and loving words of encouragement, and soothing hugs brought as much comfort as possible as I shook with fear and confusion over what was happening.

To Dr. Gabel, thank you for getting my boy out in time. Thank you for knowing something was wrong and making the correct call to save his life. Thank you for comforting me through the stress and intensity of an emergency c-section. Thank you for allowing me to be afraid and being patient with that fear.

To the recovery nurses that first delivered the news that I was a mommy of a little boy, THANK YOU! Thank you for taking the time to talk to me about my new son. Thank you for easing my pain and filling me in on what little you could.

Thank you to Dr. Murphy, Cooper's first Neonatologist. and the entire neonatal team at Mercy. Thank you for stabilizing my son and jumping into action upon his birth. Thank you for caring for him as his symptoms changed, worsened, then improved. Thank you for your knowledge and wisdom.

To the nurses in the NICU, thank you just doesn't cut it. You have cared for my boy when I couldn't. You have taken me and my family under your wings and supported us through this challenge. I am humbled by all that you do and am in awe of your ability to do these things day in and day out for countless families.

I have a few nurses I'd like to thank specifically...Stephanie, you will always be my no-non-sense stabilizer. Your unshakable demeanor always gave me something to cling to, thank you for that. Kim, you were by my boy's side in the toughest of times and I can't thank you enough for fiercely fighting on his behalf. You bring such an air of protection and love with you as you work and I'm grateful for that. Melissa, where to begin...you have become a part of our family through these past few weeks and when I see your face I feel relief. You know our boy and he knows you. His eyes open when he hears you and I can tell he takes just as much comfort in your presence as I do. Thank you for being with him in his first minutes and for providing the most loving care I could imagine throughout his time in the NICU. You are so very special and your spirit shines light into the darkest of places. We love you and hope to see you outside of these hospital walls.

I have deeply appreciated every one of my friends through this journey. Your support has meant the world to me in ways I can't put into words. Thank you for every kind word, laugh, tear, and prayer. You are all a blessing in so many ways and this situation has just made me realize that I have the best friends in the whole world!

To our neighbor and friend Melissa for asking a simple, God-led question which has led to an eye-opening journey. It feels as if we're viewing medicine and health with new eyes and we're so grateful for that vision.

Thank you to Dr. Scott who has went above and beyond to educated, support, and bring healing and health to our family. Your kind heart and outright generosity is noticed and deeply appreciated. It's pretty astounding to see the strides both Cooper and Ellie have made since you turned their power on through your healing hands. The fact that Cooper was needing assistance to have bowel movements just a day before you got your hands on him and is now no longer needing assistance in, well...just about anything, speaks for itself. Our boy is healing the way God created him to, and your touch is allowing that!

To my dad, thank you for picking me up (literally) and giving me the strength to walk the path before me. Your gruff exterior has never been much of a front to me for I always saw the soft gentle love behind your eyes, but this situation brought that love to the forefront and I've never been prouder to be your daughter. You were there when I needed you and for that I will forever be grateful. You are so loved by me and our family. Thank you dad for holding me when I cried and telling me I could do this. Also for working so hard to keep up with our Ellie girl...she's a handful.

To Dan and Roxanne, thank you for loving and caring for our Ellie as well. She is so blessed to have grandparents that adore her and take on the challenge of keeping up with her! Your ability to be here on weekends and offer food, help, love, and support will forever be remembered and we are tremendously grateful. Cooper and Ellie are blessed to have such a loving grandpa, and gran. Love you guys.

Thank you to our entire church family. I have to say that I've never been more proud of my church home. You are truly the body of Christ and we could feel your hands lifting us up out of this darkness. Not one day passed without a visit from someone to pray with us or offer an ear to this overwhelmed mother. Every visit brought peace and joy, thank you.

Thank you to my siblings and their families. The long distances you traveled just to sit in a hospital, cook, clean, and babysit, are so greatly appreciated. You came simply to offer your shoulders to lean on and I can tell you those arms were just the crutch I needed to get through this. I think it's no coincidence that Cooper began his upswing after your visit. I am so proud to be your sister. I love you all more than I can explain. Thank you for being there when I needed you most!

To my sweet Ellie girl. Thank you for sacrificing time with mommy and daddy so your brother could feel our love. Thank you for adapting so well to the new schedule (if you can call it that) and accepting your new role as big sister to a sick baby. You have been such a bright shining spot through this darkness! God created you for something so very special and I can just see your purpose behind your eyes. You are one amazing little girl that will set this world on fire. I'm so proud to be your mommy and am honored to have your love.

Finally, to my dear husband...the one person that can understand my pain through this trial. You are my rock, my love, my friend, and my partner, I wouldn't have made it a single day without you. When we got married I was so deeply in love with you and I had no idea how much that love could grow. Today as I look back at the challenges we have faced I've never felt more strongly for you. It looks like we certainly picked the perfect song for our first dance 3 years ago at our wedding.

I adore you in every way and am so blessed to call you husband. I always knew you were kind, loving, generous, and selfless but going through Cooper's birth and struggles has given me new eyes to see you with and you astound me! You have picked me up. You have taken the steps when I couldn't, and you have carried this family through the flames. The night I arrived at the hospital God told me I was about to walk through a dark valley and I agreed to it knowing you'd be right by my side. You bring me peace and comfort in the middle of so much pain, for that I'm forever grateful. God has refined us through the flames and we are bright, shiny, and new! I am so happy to be yours for all the years to come!

***I wrote all the above yesterday morning and my hopes were so high I could almost feel my body lift off the ground, then came a rush of disappointment when Cooper struggled through a few feedings. After fighting for my boy to stay awake and keep sucking at his bottle his nurse informed me that she didn't think today should be the day any longer. She explained that if he was struggling to eat now it may get worse at home and then we worry about him dehydrating and us having to return to the hospital. I agreed with her that if he's not ready he's simply not ready but I couldn't stop the tears. I am well aware that he'll be coming home one day soon but for some reason the thought of it not being today after I had allowed that thought to sink into my heart just broke me. I spent the next hour or so holding my mini Cooper and crying until it was time for us to leave and join our dear and beloved friends for Thanksgiving.

The Mitchells opened their home, hearts, and family to us this year for the holiday and we are beyond grateful! They are the most kind, loving, and generous people I know and we are blessed beyond measure by them over and over again. How loved you are my friends! Thank you yet again for welcoming us into your arms and sharing a special time, we had so much fun! It was wonderful to have a break to smile, laugh, eat, drink, and be merry!

So today...today may be the day and it may not. Time will tell and I promise you a big picture of Cooper in his car seat will grace this page soon enough. Love and blessings to you all, we'll keep you posted!

So close...

Today is one of those sad and dreaded days in which I'm unable to see my sweet Cooper until after Neil gets home from work. The hours always tick by slowly and the only thing keeping me sane inside the walls of our home is my lovely daughter Ellie. She is such a bright light in this dark time. She is the glue that holds me together. Most of the time when I'm finally at home I want to fall apart but she keeps me going. I'm so thankful for that sweet, spunky girl. This morning she said, "Coopie come home mommy!?" I'm still not quite sure if it was a statement or a question but either way it melted my heart. She know so much yet so little. I told her he'd come home someday and that we could call his nurse and check on him. She didn't love that answer but didn't put up much of a fight so I dialed the phone. I was met by a familiar voice and name and I breathed a sigh of relief. Helen had our boy today and she knew him. She is so kind and sweet to him and I'm thankful that on a day in which I have to be absent from his side that his nurse knows him and that I know her. She began the conversation by telling me that he's doing great, she then informed me that he had eaten all of his feedings from bottles since 9pm last night!!!!! AMAZING! She also told me that the doctor gave the go ahead for Coopie to eat a set amount through the day instead of at each feeding allowing him to have a little wiggle room during each feeding. That basically means that he will most likely not be in need of gavage feedings any longer! Granted he's young and may get too tired to eat at all in the next few hours so he may need to gavage but if he keeps this up we may get home in just a few days! If he can take all his feedings from bottles and not spell for 48 hours we're looking at discharge!!!!!! We're on hour 17 right now and he's due to eat at 3pm...keep your fingers crossed! I just can't believe this is so close. I can't explain the emotions just yet (I'm sure a longer blog post will be following this one up when I have time) but I will say that the Lord is good ...OH SO GOOD!

valleys and mountaintops

Lately our path has brighten and our load has lightened. Our mornings aren't filled with fear and questions while awaiting the daily orders from the doctor. Instead our mornings now are filled with excitement. How much does our mini Cooper weigh today? Is he awake and active? Will he nurse well? So much has changed in such a short amount of time...well short relative to what I was expecting.

Tomorrow will be our miracle boy's one month birthday. One month of breathing the outside air and moving freely outside of my womb. Can this really be possible? Has a full month already come and gone? Neil and I had a talk about it last night and we both agreed...it was the longest yet fasted month we've ever experienced. Words can't describe the depth of emotion that floods us when we think back on the trials we faced and have been so blessed to say we conquered. With this one month milestone lingering over us I can't help but look back. I have been replaying events in my head and re-reading my words those very first days of our boy's journey. I can't seem to get through any of it with a dry eye. So much has built up inside of me and I have already foreseen it all flooding over when we hear the sweet words, "You're discharged. Take your baby home!" I guess I just haven't had the time to reflect and allow myself to process everything that has happened. I know I went through it and even worked through much of the emotions but unpacking it all and allowing it to sink in is a different story. I look forward to that. I look forward to this all being a distant memory. A harsh yet joyful memory because our boy made it. We survived!

I was telling a friend this morning that as much as I've hated this dark valley that God led our family through I'm also thankful for it. That may not make sense to most but I can't help but feel that way. I know God held our hands as we walked in the darkest places and carried me when I was too scared to take another step, and we made it. God has taught me so much through this walk and for that I'll be forever changed and forever grateful. Yes the valley is full of pain, tears, and outright misery but walking out of it and up onto the mountain is full of a joy that can't be expressed in words. I'll allow the pictures to speak to your own heart and I think you'll grasp what I mean.

                                                                         VALLEY

 MOUNTAIN

Our Coopie weighed in at 4lbs 10oz last night and has been cleared to eat as many bottles and nurse as often as tolerated. He's still quite young (35 weeks gestation) so he will likely not be able to handle a full day of bottle feeding/nursing but we're going to keep working at it at his pace. Cooper runs the show here and it's up to him how this goes and how long it takes. Once he's eating all his feedings from breast/bottle for at least 48 hours and having no spells (along with keeping up everything else he's being doing) we'll be released to go home! It could still be weeks so I'm trying not to get too worked up but it feels so within reach now. We're getting there.

On the agenda for the week we have an eye exam tomorrow, a follow up echo for his pulmonary valve stenosis (the nurses don't even hear the murmur anymore so that's a great sign), and a follow up head ultrasound. Busy week but all precautionary.

Feeder and Grower

The term I longed to hear associated with our boy has finally been attached to his name! Our Cooper is official "healthy" enough to be labeled as a "feeder and grower!!!" Neil quietly crept into the house last night from visiting Cooper and woke me with the news that our boy is officially just working on getting bigger and strong enough to come home with us!!!! The nurse told him last night that we need to bring our carseat in within the next 2 weeks to test it out! I can't even explain the excitement of hearing that news. I have been looking at the carseat for weeks and it always saddened me, but now, now, it brings joy and new light! My heart swelled with happiness at the great news...our boy is taking steps toward coming home and each day is a little closer to our family being together as one unit under ONE roof!

Since he's working on eating and growing I get the honor of giving weight and length updates now instead of tests and results updates. Another small yet tremendous joy of our new place in our new world. Cooper was born at 3lbs 9oz, gained a TON of water weight with all of his edema but I'm thrilled to say that is gone and his new weight gain is the good kind! The kind we long for and pray continues rapidly! Our boy is weighing in at 4lbs 8oz now and we couldn't be prouder! He gained an entire 3oz yesterday alone! He is amazing and we can't say it enough. Our boy is such a gift! A gift we can't wait to bring home for the world to enjoy!

Not as controversial as I had thought...

After much debate within myself I have decided to open up a tiny bit about some things that have been plaguing me lately. I had mentioned in a previous post that the thought of the flu shot being linked to Coop's early arrival and illness/adverse symptoms had been brought to my attention. After as much reading as my sleepy eyes would allow, advice and guidance from medical professionals, and eye opening discussions with experts on the subject, I have come to some very scary, very real conclusions. I won't share everything because I'm not sure where this unraveling thread will lead us but I did want to share a few things.

I began this process thinking I was walking into something extremely controversial and I'd never get straight answers. WRONG! It took a total of 5 minutes maximum to get a direct answer from the horse's mouth. Let me explain...
I walked into my OB's office and asked for the receptionist to write down the exact name and dose of the flu vaccine I received. She went to the back for a moment and, upon her return, handed me a piece of paper with the words "Fluvirin, single dose" written on it. I then walked to my car and right there from my phone goggled "Fluvirin 2012 package insert." I quickly found the FDA sight that led me directly to the insert that I should have been handed in the first place upon receiving my flu shot. Despite that fact, I now had the information. That's where I found this.


8 USE IN SPECIFIC POPULATIONS
8.1 Pregnancy
Pregnancy Category C: Animal reproduction studies have not been conducted with FLUVIRIN®. It is also not known whether FLUVIRIN® can cause fetal harm when administered to a pregnant woman or can affect reproduction capacity. FLUVIRIN® should be given to a pregnant woman only if clearly needed.

I was shocked and appalled to say the least. Go back and read my first blog post about this to see exactly what my OB said in response to my question, "What are the possible side effects to my baby if I get the flu shot?"...How dare she! How dare anyone not give the facts! I may never know if this is what happened to my sweet boy. I may never know if he almost lost his life because of a shot. But I do know this. I was NOT informed enough to make a proper decision. I was having a delightful, healthy, and perfectly normal pregnancy and nothing changed except this one vaccine. Maybe it was something else but every blood test that Cooper and I have had, every path the doctors have headed down has lead to a dead end. No signs of infection and no signs pointing to ANYTHING diagnostic of what happened. Yet the flu shot sticks out like a sore thumb.

I don't know what any of this means to us just yet but I decided to post this because I have many dear and lovely friends that are pregnant right now or planning to become pregnant soon. I'm not saying getting a vaccine is right or wrong I'm simply saying check the facts and don't allow ANYONE to bully you. Just because he/she has Dr. before his/her name does NOT mean they know everything or that they can 100% be trusted. I'm also not saying that doctors are out to hurt you. I fully believe that was NOT my OB's intention and I'm extremely grateful for her and the practice as a whole, I just believe that none of us are informed. It's time to change that!   

Here is a link to the Fluvirin insert and also another site that I found to be extremely helpful in researching this subject.

http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM123694.pdf

http://www.nvic.org/Vaccines-and-Diseases.aspx

I also want to say a huge thank you to that small question, "Did you get a flu shot?"...God is working through you and your heart for others and their health! Forever grateful!


 

Resilience

The other night as I sat by Cooper's bedside chatting with a dear friend I was struck by the amazing resilience of my boy and our family as a unit. As I spoke of our journey and everything that Cooper has endured over these past 3 weeks I realized just how spectacular our bodies and systems are. I marveled at the fact that Cooper went from not breathing or being capable of such to breathing the room air without any support. He went from not being able to move to squirming out of his swaddle like a little ninja. He went from not being able to control his own blood pressure, platelets, or body temperature to being the master of them all. He now digests food, moves his bowels, regulates his breathing, sucks his pacifier, and moves freely and often. How did he get here? His little body is amazing and was perfectly made! The Lord created our boy for so much and this is just the beginning!

How wonderful to be able to voice that and truly KNOW it to be reality. For a while there I wouldn't have dared make such a statement with the alternatives lingering in the air. Lately though, I can see my son's future and often find myself day dreaming of that vision. Those glorious fantasies carry me through the times away from the hospital; those times in the quiet, still, and lonely moments when I feel the weight of the situation. Those moments can, at times, feel too heavy to bear on my own. That's when I allow myself to dream of my boy coming home. Meeting his spunky and anxious sister and all of us joyfully under one roof. I know there will be challenges and exhaustion once we're home but I have no doubt that the joy will outweigh it tremendously! I picture him crawling, walking, and bugging his sister. I even allow my thoughts to float to his adulthood when he is taller than his mommy and looks just like his daddy. Oh the joys to come!

I have been living in this beautiful cloud of happiness lately (much different than where I was living the weeks prior) because of all of our amazing Mini Cooper's strides. He is now in a crib, breathing room air, PICC free, clothed, and NURSING! I just can't believe this is happening. God is so good! Since our boy has been moved out of his isolete and into a crib we're free to pick him up whenever we choose and I have to admit that I hold him every possible second I get. The other day he was in my arms 6 out of 7 hours (the necessities of eating and pumping were the only reasons it wasn't 7 of 7) and it still wasn't enough. On the nights I stay at home instead of bunking with my boy I tend to bring home a blanket of his so I can smell that sweet scent he carries...I miss him so much it aches. That ache pulls me back, reminding me that this is still a challenge. This is our new normal but it still doesn't feel natural. Leaving your newborn baby isn't normal, yet it's a necessity. Despite all the glorious strides he is still tiny. He is still getting stronger. He is still working so very hard and our road is still a long one. The reality of that hit me today and I was back to my darker cloud of living. Not that I didn't have joy over how far we've come, but I couldn't help but focus on how far we have yet to go. I caught myself in tears the majority of the day. It was different than the prior weeks but none-the-less still so very overwhelming.

Overall Cooper is doing AMAZING! We've enlisted more healing hands into his care and have been blessed so much by them! Coop has been working on nursing and it's slow going thus far. I have to admit that I day dreamed a bit too much about getting to the nursing step because I just expected it to take off...I have had a rude awakening on that one. He is doing well it's just a process. His biggest struggle at the moment seems to be his bilirubin numbers still. They continue to decrease little by little but are still up there. He also seems to really be hurting from reflux. It's so sad to see him uncomfortable but there isn't much to do for it right now. Prayers are so dearly appreciated and again we can't thank you enough for lifting us up to the Lord through all of this! We love and are blessed by you all!

Bursting with joy!

Today was yet another rough day of sitting at home anxiously waiting to find out how Cooper was doing, but those hours of unease were washed away the second my boy was in my hands.

When I walked into his room he was laying behind his plastic walls wide eyed. I was able to pump and then make our first attempt at "nuzzling". I can't even explain the excitement! It was our first chance to bond through nursing...a sweet luxury I had with Ellie just 45 minutes after she was born. Things are oh so different this time around. Coop felt so tiny and delicate in my hands. He always had but I had never really tried to maneuver him the way I needed to tonight, and that made him all the more fragile to me. I got him in the right position and to my absolute delight he began to suck. He was so cozy and knew just what to do. I was in complete awe. After a short while his eyes began to droop and his mouth fell slack. My tiny boy had worn himself out. I laid him on my chest and stared at his precious dreaming face. How blessed am I?! It all rushed over me and I began to tear up. Tears of joy this time...what a beautiful moment. A pure and true vision of love in all it's glory. Thank you Lord for the unmatched joys of motherhood.

I held my boy in the silence of our room for 3 hours. We dozed off and on and just enjoyed each others warmth. Then the sad moment came to put him back into his isolation. I wasn't thrilled about it. Then our nurse Kristen (who we adore) said, "would you like to dress him?" The smile flashed back onto my face as I reached for the big bag of clothes I've been dying to use. We kept it simple...just a onesie to make sure he didn't over heat since he's still in his temperature controlled omnibed. Once he's in a crib we'll get to use the outfits and jammies that I can't wait to see him in. For now his cars onesie was the choice...what could be more perfect for our mini Cooper's first fashion photo shoot!?