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!? 

Grasping at Straws

Let me start this post with a broad statement that I'm not looking to start anything controversial here so please don't leave any hurtful, overly opinionated, or unkind comments. This blog is to keep all of you dear friends and family members up to date on EVERYTHING we're experiencing and also to help me get some of my feelings and emotions out during this trying time. Ok, the formalities are out of the way now...

Like I mentioned in the previous post, yesterday was the first entire day I've had to spend away from Cooper. Today is the second and it's feeling much the same thus far. Despite a very different kind of morning. Today instead of getting up at 3:30 and heading to the hospital it was the reversal. I woke up in my hospital home at 3am to do my boy's "cares" then headed home at 4am so Neil could sneak in a few hours with our little guy while I tried to get a bit of rest. Ellie seemed to have different plans for me. Right on cue she began whining through the monitor, "mooommmmmy! MOMMY!" (this girl can sense my presence). I went into her room to find her eyes still closed and whimpering. Usually I'm one that will let her cry a bit until she goes back to sleep but I'm a bit soft right now so I scooped her up and snuggled her in the rocker for a bit. Just long enough for her to fully wake up...great. : / I still attempted putting her back into bed and praying she'd go to sleep for a bit. She did get quiet but not for long. Before 6am I was back in her room after hearing her saying "OH NO! I POOKED!" (her version of telling me she puked). I walk in thinking, "Seriously you now have a stomach bug!" But instead of puke I find my girl standing pantless in the corned of her bed pointing at the empty diaper laying open in the middle of her crib. I then see that what she thought was "pook" was actually "pooP!" It smelled and was not the best thing in the world to have to clean up after 2 hours of sleep at the hospital but I had to laugh. What t sight. Welcome to motherhood indeed! It wasn't fun to have to bathe her, strip her bed, and clean EVERYTHING in her room but I couldn't help but kind of loving the moment of being able to care for my child and having a crazy toddler story under my belt. One of MANY I'm sure! That moment brought normalcy for me. Funny how much poop has brought me joy lately. haha

After the crazy morning I made my first phone call to the NICU and held my breath waiting for the nurse's voice hoping it was a familiar one. A loved and trusted one. To my dismay it was the same voice as yesterday. Yes it was familiar but not loved or trusted by me. She proceeded to tell me the doctors had yet to make rounds just to have a nurse near her correct her and fill her in on the fact that the doctor had already rounded on my son and just what he had said. I hate that she didn't know who had been in my son's room or what the orders for the day were. I then asked if he had experienced any dips in his heart rate since she had been there and she said no. Hard to believe since he seems to dip a lot when Neil and I are around yet he didn't dip even ONCE during her 12 hour shift yesterday and today her story is the same. My mommy radar is flashing like crazy and I can't stand it. I am well aware of the stress and strain these nurses are under and I do call often but I make it a point to be quick, I know they have a lot going on and more responsibility than I can imagine so I have a great deal of respect for that, but something here just isn't adding up. Needless to say I'm sitting very uneasily yet again today and can't wait to get to that hospital! There was one up from talking to our nurse this morning...when the other nurse filled her in on the doctor's plans for our boy we discovered that we are ok'd to begin "nuzzling" today!!! Yet another NICU term...nuzzling means that I'll pump then allow Cooper to root around at the empty breast (sorry if that's graphic) and figure out how to suck without getting overwhelmed by lots of milk. It's the first step in breast feeding. I just can't believe it's happening! I'm in heaven just thinking about that special bonding time and my boy needing me!

We have so much to look forward to and I'm so thankful! Our future is getting brighter by the day and I can't explain the joy that has come with that. Our days started out very dark and our boy wasn't promised to us for quite a while. His little life hung in the balance and now...now he is growing, learning, working, and getting stronger every day...he's doing it! I couldn't be prouder! Despite that pride and excitement I can't help but be caught up by the question, "Why are we here? How did this happen?" I have been told multiple times by Coop's doctors that I'll never know. That answer just doesn't sit well inside of me. I'm just not ready to give up without a fight. What if what happened will contribute toward future problems with Cooper, or with future pregnancies. We had planned on more children and now we're just not sure. If we never know we never know but it's only been 2 1/2 weeks since this all happened...why are we giving up so soon? I have been reading as much as possible and searching for some direction for weeks and then suddenly received an email from a dear friend asking if I had gotten a flu shot. Hmmm...yes, I did! At my OB appointment 2 weeks before Cooper was born, 1 week before my odd-ball symptoms showed up, the nurse practitioner asked me if I had gotten a flu shot. I said no and that I didn't plan on it. She then explained without mincing words, "If you don't get one you leave yourself susceptible to the flu which could cause you to lose your child." Strong words! I then asked, "If I do get one what are the possible side effects to my baby?" That question was met with this response..."NONE! If anything it could only increase your baby's immunity when he/she is born." I agreed and one quick poke later was on my way. I honestly didn't think a thing of it until I got that email yesterday and now I can't shake it. I have been reading EVERYTHING I can get my hands on and trying my best to get as educated and informed from all angles as I can. From what I'm reading this is obviously a controversial topic but there have been multiple studies done that link the flu vaccine with stillbirths...which, is exactly what Cooper would have been if I hadn't gotten to the hospital when I did. I'm just overwhelmed with this possibility and am doing my best to look into it all with a calm head and heart. Maybe I'm grasping for something that will never be defined or known for sure but I'm going to fight for an answer. If there is a possibility that a flu shot caused my boy such distress and quite literally almost his life I need to know....THE WORLD NEEDS TO KNOW! I will be a loud voice on the subject...as loud as I can be. But for now I need to research. Even if this isn't the road that led to Cooper's problems I will be an advocate for kick counting and active pregnancy for every woman. It can save your baby's life and your heart!

Moments in time

Began this yesterday November 6, 2012 but didn't post until the 7th. Sorry if there is confusion.

My day started very early. You see, today was my first day full day away from my boy. I hate to even say "first" because it implies there are more to follow and I can't stand even facing that after enduring the absent hours apart from him. Yet, this again is our reality for now. My point was that my day began incredibly early with a trip to our mini Cooper's room where I sat wishing for time to stop for a few hours. He was resting when I left. Not quite comfortably with a slightly elevated heart rate and faster than usual breathing. My sweet helpless son seemed to be distressed and agitated. He was working so hard (which I mentioned in the previous post) and it was showing! The last thing I wanted to do was walk away, especially knowing I wouldn't be able to return for at least 12 hours. It was heart breaking to leave his room and make the long walk to the car but I had to. I had a husband at home that needed to go to work to provide for our family. A devoted, loving provider that we're so blessed to have working so hard for our small family. Not only did daddy need to work but our Ellie bug is still fighting her virus (she never met one she didn't like) and needed her momma. So, out to the car I walked pained by the fact that I was leaving this tiny piece of my heart with a stranger for the day, trusting them to advocate for him. It's quite hard to trust a person you don't know with such a huge part of your world, but what has to be done has to be done. I'm coming to grips with the fact that there is no ideal in this situation. I'm kicking and screaming the whole way of course, but God is teaching me a valuable lesson of letting go of control and trusting HIS plan! Good thing He's such a big and great God because I'm putting up one heck of a fight...thankful He can take it and still blesses me with grace and love. I am far from deserving of that gift with my attitude some days (I'm sure my husband can attest to that) but I am forever grateful for the unconditional love and forgiveness.

The hours of the day ticked by like a slowly dripping faucet. I kept looking at the clock and wondering what was happening inside the walls of room 4024. Was my boy sleeping comfortably? Was his monitor alarming? Were the nurses paying attention? Was he lonely and crying? I had an urge to call almost every few minutes but fought it by staying busy with my firey little toddler. Good thing she keeps me on my toes! She was my silver lining. She was my joy. She was the face of God for me in that difficult time. So thankful for her! After a while I was able to get lost in her play with her and marvel at her innocence. I have so much to learn from this child. Then it was nap time...oh the dreaded quiet with nothing to do but allow my brain to wander down crazy paths. Just when I was feeling like a caged animal dying to break free I heard the sweet sound of my rousing daughter entirely too early. Usually that sound would have brought feelings of frustration but today it brought relief in my silent lonely moment of panic. At that point I had called the NICU about 3 times and was utterly disappointed to hear a new voice on the line, a name that had no face for me, a woman that didn't know my boy. I tried my best to fill her in on his likes and dislikes to make the transition easier for on both of them but she kept speaking over me, telling ME about my Cooper. Needless to say I wasn't a big fan of that. I already feel out of control and like I'm not truly connected with him properly because of this situation. The last thing I need is someone making that distance feel bigger. She was nice enough but very ill-informed, which also didn't sit well. She assured me throughout the day that his heart rate hadn't dropped even once...hard to believe that in a 12 hour span he doesn't dip but in the 2 hours I'm there he dips 4 times?! My gut tells me this woman is sugar coating to keep me calm since I can't be there or she just plain isn't paying attention. I was heart broken and so anxious I couldn't stand it by the time Neil walked in the door after work. I could barely sit still or even have a full thought. When he walked in I kissed my sweet husband and daughter goodbye and rushed to my boy's side to find him resting peacefully with good stats displayed on the monitor. We had made it. We got through this day. WHEW!

The evening ended with my boy swaddled up in my arms where we snuggled and snoozed for hours before I tucked him back into his plastic home while I stole a few hours of sleep before heading home at 4am. What a night with my man. Just thinking about those precious moments with him brings tears once again. I'm so thankful for my son that almost wasn't. He truly is a blessing and miracle through and through!

Struggles

Cooper has been on an amazing upswing these past few days and I'm beyond thankful for those positive strides, but those steps come with consequences at times. Our boy has been working on doing so much on his own lately that his tiny frame and insides are getting tired. He is beginning to look labored and his heart rate is dropping more often. I, of course, am fighting for them to make him more comfortable and to ease his struggle but have been told it's best to allow him more time to work through it. It's so painful to see him fighting. He shouldn't have to be doing ANYTHING yet...I should be doing these things for him! Breathing for him, eating for him...he should just be resting and kicking me from he inside. I just hate pushing him. It's so hard to allow him to work through things. I just want to make it all better (said every mom that ever lived). So the technical update on our boy is that he's still working hard and growing. Since getting his PICC out and being taken off of TPN his blood sugar has been closely monitored. Sadly his numbers aren't impressive thus far and due to that fact his feeds have been drastically increased to 35ml, 24calorie breast milk (basically they fortify my milk with high calorie formula to give him more bang for his buck) in an attempt to up his blood sugar. All that volume has been a bit tough for him so far. He seems to be refluxing and gagging a bit (again the nurses are fine with it but it terrifies me to see) and having some trouble stooling but his blood sugar has increased a bit. On top of the blood sugar numbers his bilirubin numbers are also not great. His direct has risen to 4.5 so we'll likely be meeting with a GI doctor soon to discuss what that all means. Also our guy is working on breathing 100% unassisted and seems to be getting a bit fatigued. He's just learning so much on his own so quickly...and FAR before he should have to and it's taking a toll. He's working through it and I'm assured he won't get to that devastating state he was in a few weeks ago when he became over worked. I'm hanging onto that promise but can't help but hold my breath during this time.

God gave me such a gift with this boy! Not just that he's here and, well...alive, but God has blessed me with the most amazing connection to Cooper I could ever imagine. Don't get me wrong my bond with Ellie is astounding and I usually know what she's thinking and feeling far before she displays it, but with Coop, even before I met him I KNEW when he was in trouble or hurting and that hasn't changed. I sat by his bedside early this morning and began to doze a bit (it was far earlier than anyone should ever be awake) when I saw a vision of his monitor in my head and popped up in fear staring at his numbers...they were fine, then about 2 seconds later they dropped off and his alarm began to wail. Did I really know that was coming? Then, just an hour later the same thing happened. God has given me the ability to sense my boy's stress...thank you GOD! These are just a few of the small things that have happened that make me realize just how deeply I know my son. He is a part of me, even now that he's out in the world. This may sound a bit crazy but I believe it with my entire soul! And...if you ever want to feel like a crazy mommy just walk into the NICU...st least that's how I've been feeling lately.

All of these nurses and doctors are just plain amazing but they are numbed. Desensitized to the pain and trauma they see day in and day out. It's not their child laying helpless behind the plastic wall. It's not their child that can't speak on his own behalf. It's not their child turning blue, not breathing, or fighting to regulate his own breath. It's not their son's heart beating wildly out of control one second then barely making a blip on the monitor the next. They can't be blamed for the panic I feel every time I'm faced with one of those problems but their calm demeanor during those moments makes me feel like a lunatic.

Last night as I watched Cooper's heart rate and breathing drop off and stood at his side helpless (I've been told not to touch him or intervene during these times) but aching to fight for him I could do nothing but cry. The tears streamed down my face and I just stood there watching my sweet baby...my 33 week old fetus fighting. What a painful moment. Yet the nurse looked at me shocked that I was crying. "Do you cry every time he does that?" she asked very plainly. All I could say was, "Yes, I don't know how not to." In her defense I had never met her, she wasn't Coop's nurse, but she saw his alarm going off and was the first in the room so she wasn't aware of how frail I was. She then walked out of the room and a few seconds later our beloved nurse Melanie walked in saying, "She just said Cooper had a spell. Then she said you were crying. I told her I wasn't surprised." I love that Melanie knows me. She knows how sensitive I am for my boy. She knows how deeply connected I am to my son and how unabashedly in love with this child I am. She understands and that gave me comfort in my dramatic reaction. Not that my reactions need to be rationalized all the time (because let's face it I AM a bit of a crazy person with my baby in the NICU, a toddler at home, and post pregnancy hormones running rampant) but I can't help but wonder if my feelings are the norm. How else would someone act upon seeing their child turning blue and fighting for breath?

clothed in majesty

Rounds brought MUCH happiness this morning! Our doctor started by saying, "He's just amazing me! He has made such tremendous strides in the past week!" WHAT A LOVELY THING TO HEAR!

Coopie is now up to 24ml, his full feedings! The bump up in feedings has brought the news of no longer needing his TPN, or intravenous nutrition therefore our boy just had his PICC line removed! He is officially IV free and the only wires and tubes attached at for the monitor and feedings. WHAT AN AMAZING FEELING! If all goes well with his feedings and his blood sugars look good we're hoping to have him moved to a crib soon and also begin nuzzling and working toward nursing! Such wonderful news in our world! The only set backs are his continued high bilirubin numbers, which should be declining with the removal of his TPN. Also, since Coop has been off of caffeine and his CPAP his heart rate has been dropping below 60 from time to time. This drop is referred to as "spells" in the NICU world, but they are only considered spells and recorded if they last 10 seconds or longer and our boy has yet to go that long. I can never tell because anytime his heart rate drops feels like an eternity to me but his nurses have assured me that he's doing wonderfully and is "perfectly perfect in every way." Goodness I'm thankful for these ladies!

Next up on the agenda for the day is a long awaited bath (especially for his right foot which has been wrapped up since his second day here) and then CLOTHES! We get to dress our boy! I know it may sound silly but just that little insignificant milestone brings such joy. He feels like a real baby and I love every bit of it! Also...his cord fell off today...another real baby moment. My heart is very happy today for my sweet son. (I'll post pictures of our big boy dressed a bit later)

My heart is heavy for our daughter though. Our sweet Ellie girl has been battling an ear infection for a few days and now has developed a nasty little rash along with it. After 3 visits to the doctor we found out she has hand, foot, and mouth and some nasty little blisters on her tongue. She's been so fussy, sleepless, and just plan difficult this past few weeks and now we know why! Not only has her world been turned on it's side with the early addition of her little brother, but the poor thing has been sick as well! She is confined to the house for the time being and while she's sick we're limited to only touching Coop with gloves and no holding. It's not very fun to miss the skin to skin time with our guy but it's a small price to pay to keep him from getting sick. Ellie being cranky and sick leaves me feeling torn between my kiddos once again. I hate leaving her when she's struggling but I know Cooper needs me as well. I'm working on spending as much time with my girl while she's awake as possible then heading to Coop while she's in bed. So far so good. Prayers for her quick recovery are appreciated. Once our Ellie bug is all healed up she gets her first peek at her new baby brother. We've been given the ok to bring him to the window for her to check out! I just can't wait for that moment!

What beauty today has brought. Thankful for the day!

Faces

The beginning of our life here at the hospital was flooded with people. Blurs of conversations and faces. Finding peace and quiet in any sort of seclusion was sparse. I was blessed to have Neil by my side as we stared at our boy behind the plastic walls of his bed. Not only did I have my husband  holding my hand, but we also had our parents waiting in the wings, dear friends hugging us and holding us as we cried, family members that traveled for hours and hours just to squeeze us and get a glimpse at our boy, and countless visits from our dear pastors and prayer warriors at Hope. We were inundated with guests and things to keep our minds busy.

Time at the hospital is looking very different now. In the beginning I didn't have to eat a single meal alone, I had company to go grab coffee downstairs, I didn't even leave Coop's room without a chaperone of some sort. But now I'm often here alone. My days are spent in seclusion and it's not all bad. I have time to write, time to read and learn about what has happened, may happen, and will happen to my sweet son in the days, weeks, months, and years to come. I have time to reflect on what my heart and my family has faced these past 2 weeks. Upon that reflection I'm still in shock and a bit of denial but it's sinking in little by little. In moments it feels as if the full force of what has happened hits me then the floods of tears open up, and at those times I'm incredibly thankful for my seclusion. When I walk down the halls, step into the elevator, or sit down in the cafeteria alone I can't help but notice all the faces around me. Just a few feet away yet so far apart. All of us together yet alone in our own worlds amidst our own struggles. I see the exhausted blank stare of one woman and wonder what her worry is over. I then see happy chatting amongst a couple at the next table and wonder what they may be facing today...joy, sorrow, confusion? Just last night as I staggered out of the building to my car at 11pm I saw two vibrant faces walking toward the sliding doors of Mercy. A glowing mother-to-be sitting in her wheel chair with her swollen belly in her hands and an overly excited daddy to be pushing her a bit too fast. All I could think is, "What a night they are in for!" I smiled and said a prayer for them. What joy is to come for their hearts! I pray they had an easy labor and delivery and that their sweet baby is in the nursery 2 floors below me at the moment happy, healthy, and chubby as can be!

Hospitals are full of faces, each with their own story. I feel as if my face speaks for itself as I walk alone through the halls. Make-up free and lined with sleeplessness, my blank stare screams of the preoccupied thoughts of my family. It's hard to get into a different state of mind and put on a new face...that's the best part of the seclusion of our hospital home...I don't have to. I'm free to wear my new face. The face of a mother full of concern for her sick child. The face of a mother searching for answers and clinging to hope. The face of a mother exhausted from balancing her new life. I'm thankful for the opportunity to balance this and to have my son here but this face is a new one for me that I'm still learning how to wear.

Brighter Days

 Tonight I'm writing with a triumphant heart. I don't want to get ahead of myself because we still have a lengthy road stretched before us but I'm beginning to feel the light of our path. Again tonight as I write, Cooper is at my side. I chose to drive back to the hospital to spend the night with my boy after getting our Ellie girl to bed. On the way here I began to cry, not uncommon lately, but this time it was different. This time my sobs weren't a plea to my Lord, instead they were a release of praise and worship. I had been holding onto so much fear and protecting my heart in case the unthinkable were to happen to our boy...to our hearts. But tonight, as I drove down the now familiar highway toward the bright lights of downtown my heart sang and my soul rejoiced because our mini Cooper seems to be getting better. There is light in my darkness and I can feel the Lord saving me and my boy. I just kept thinking, "He's my boy that almost wasn't." If the Lord hadn't told me "your baby hasn't moved..."If the Lord hadn't moved me to call the doctor or go to the hospital...If the Lord hadn't guided the doctors to take me into emergency surgery...our world and outcome would be much different. I have FINALLY allowed myself to accept what I have been begging for in my head but unable to believe in my heart...my boy is MINE! It seems as if I get to keep him and I KNOW that God has saved his life and given him to me for such an amazing purpose!

As I cried I began to dream about his future...what he'll look like (Neil, of that I'm certain), how strong yet gentle I hope he'll be, and what he'll long to be when he grows up...oh what a bright future it seems we have in store. Our God is an awesome God and I'm SO THANKFUL! I know that tomorrow is never promised and each moment is a gift so who knows what the light of a new day will bring but tonight I felt every bit of joy over the miracles God has woven into our new world and for that, again, I'm beyond thankful. There are no words to express this feeling...my heart sings for the strides I see in our Cooper and I pray with every bit of my strength for continued health and improvement.

These feelings and a flow of joy has swept me up because of the events that have unfolded throughout the day. This morning when I called to check in on our boy I found out that they removed his CPAP yet again. My heart lept at the news but then quickly tightened once I remembered the respiratory distress and heart failure that followed our last attempt at this. I was quickly reassured that he is a new boy now and much healthier, I reluctantly agreed. I held my breath most of the day but as I sit here now and look at his monitors I'm able to breathe a sigh of relief at the numbers flashing before me. Heart rate in the 140's, respirations in the 50's, and oxygen levels in the high 90's...ALL ON HIS OWN! This is even more exciting than first steps! Not only is our Cooper doing an AMAZING job of breathing on his own, but he is also tolerating and digesting his feedings incredibly well. I've never been happier to see baby poop in my life! Since all of those things are going well they were able to move his feeding tube from his mouth to a smaller tube in his nose, which looks to be much more comfortable and allows him the ability to suck his fingers and pacifier, which he seems to adore. So many wonderful changes and strides have been made over the past few days! His bilirubin is up from yesterday but hopefully will be declining as his feedings increase. Also we still don't have the results on the genetic testing, but we'll cross that bridge when we get there. For now I'm rejoicing in our good news and steps toward a normal life together as a family.

SO THANKFUL!

Yellow boy

Well our sweet Coopie went from blue to pink (normal), to yellow! (I certainly hope there are no more colors involved in this pattern) Like I said in the post earlier, our boy's direct bilirubin has crept up over the past few days and can't be treated with photo therapy so he's just turning a bit more yellow everyday. There isn't much they can do for that except keep an eye on it and try to control it with some medication, which he has now been on for 2 days. It's not at a critical level by any means but they want to keep it under control which we're thankful for.  Besides the bilirubin issue we're really not facing too many obstacles at the moment. His morning rounds orders and instructions for the day have gone from 8 full pages on day one to 1/4 of a page on day 13...again, we are THANKFUL! This morning the instructions were  to up his feedings to 18ml every 3 hours and see how he tolerates it(he has been doing well thus far), make sure he poops (which he did, YAY!), give meds for the bilirubin, and do a blood sugar test. A MUCH easier day than we've been having in our world.

Mini Coop is doing an awesome job of digesting and, so far, has been keeping up with his feedings. I was told this morning that once we get up to his full feedings we can stop his TPN and take out his PICC line! I then asked what his full feedings would be and Melanie (another favorite nurse whom I adore) told me in the low 20ml's and that it's possible to be there by Monday! HOW EXCITING! I'm trying not to get ahead of myself but what a wonderful hope! Also, when Dr. Nold made rounds this morning she said she was planning to take him off of his CPAP around 33 weeks gestational age and take him straight to room air with no intervention...that would be this Saturday or Sunday! Again, SUPER EXCITING! Also a bit terrifying since last time he went into respiratory distress and showed signs of heart failure. I have been assured though, that he is a different boy now and I can see that too so I'm hopeful. His platelets have been going up beautifully, just as they should, so we are no longer hanging on every number in his CBC. In fact, they are so confident in his numbers that they have opted to only draw a CBC every couple days. Another bit of exciting news....it was a good news kind of day!

On the agenda for tomorrow morning is a blood draw to check the bilirubin count once again and hopefully we'll also get the results back from Cooper's genetic testing to rule/point out any long term issues we may be facing. Prayers for those 2 tests would be greatly appreciated. Also prayers for Cooper to keep on this upswing and GOOD NEWS trend!

So much to be thankful for!

Thank you doesn't cut it

Since starting this journey we have been immersed with love, devotion, prayer, gifts, kindness, and such amazingly beautiful selfless acts of generosity that we are overwhelmed. We honestly can't say thank you enough for all of your encouragement and help through this time. This has by far been the most challenging time we have ever faced in our lives thus far and to see and feel of the love coming from our friends and family is truly astounding. You are carrying us through this in more ways than I can express. I hang on every comment on the blog and facebook, and long for my boy to be lifted to the Lord through your prayers, so please know that every act and word from you is noticed and appreciated beyond measure. We have been blessed by a mealtrain that a dear friend organized and upon logging in we found that we are covered for meals from now until Christmas! There are just no words for our gratitude. We have been gifted with such things of beauty...angels to place in Cooper's room to watch over our boy, prayer and devotional books, food, clothes, prayer shawls (crocheted shawls for myself, Cooper, and Ellie that were each prayed over for each of us the entire time they were being made in order to literally cover us in prayer through this tough time), visits, care baskets, and so much more. We are just incredibly grateful and want to extend our deepest thanks to each and every one of you. Just knowing you're reading this blog and concerned for our Cooper and family is heart warming and overwhelming. We love and appreciate you all.

Our boy seems to be turning a corner...a good corner! We have no doubt that every prayer and positive thought you have lifted for our son is why these amazing things are happening. He is getting better. Everyday the list of tests and hurdles is minimizing. In our new world we know better than to get too worked up over a few good days since things can change quickly but I will say that the light seems to be getting brighter and the heaviness is lifting a bit. He is still a sick and tiny boy and has a long road ahead but I can SEE his road now and I'm allowing myself to believe in his path. To see an end to this reality and a beginning to the one I look forward to. Our boy is doing well for the time being and I'm hanging onto that for dear life.

Cooper is at my side as I type this with a calm and steady heart rate in the 140's-150's (much different than the 190's we were up against just a few days ago) and as cozy as can be. What a comforting feeling to have him an arms length away. Sadly this night will end and I'll have to be away from him pretending my world hasn't halted. For the past 2 weeks (I can't believe tomorrow at 8:50am Cooper will be 2 weeks old) our world isn't the only one that has stopped...my parents have completely walked away from their world as well. They dropped everything and have taken on so much responsibility of Ellie and our home, again, thank you just doesn't cut it! With them here I felt free to spend as much time in the hospital at Cooper's side as possible and am beyond grateful for that luxury. But life must go on. Today nana had to head back to Illinois and her busy life. She refused to leave until our Cooper was much healthier and by God's grace he is getting there so today she made her tearful drive back home. I have no doubt that she'll be back in the weeks to come but for now I have to face the fact that I can't just come see our boy whenever I want. Something has to give and I have to choose between the two pieces of my heart...Ellie and Cooper. The balance will be hard to find and we'll need to lean on our amazing friends and family yet again, but we'll get there. It will be painful because no option is ideal but hopefully in a few weeks time this will all be a memory as our family finally unites in our own home!

I find it fitting that I've spent my day overwhelmed with thankfulness given that it's the first day of November, the month when most of us begin to count our blessings. I try to make it a habit of beginning and ending each day thanking God for my blessings but at this moment I'm thankful for more than I can express. The blessings are overflowing and I'm amazed by it! Amidst this time of confusion, frustration, heart ache, and pain the blessings still flow freely and immensely. 

So, as insufficient as this is...thank you to you all.

Writing the story...

I began this entry on Monday and am just now posting. Sorry for the delay. I'll also try to post one for today if I have the time. :)

MondyCoopie's update: Yesterday there was a little concern for Coop's direct bilirubin level of 1.9, today's lab showed the number had jumped to 2.9 and the enzyme testing came back concerning as well so a liver ultrasound was ordered. Dr. Nold said they'd do the ultrasound in the morning but of course, as a mommy, I wanted it done that instant. The nurse read me like a book and followed Dr. Nold out of the room. She returned shortly saying, "they'll be in here in an hour to do the ultrasound. I know I'd want it done right away so I asked the doctor if it was ok for me to order it now and she said yes." BLESS THIS NURSE'S HEART! Helen you are a doll! At 11am in came the ultrasound machine and Cooper did a great job of laying still and being peaceful, for the most part. In order to perform the scan they needed his tummy empty so Helen used a syringe on the end of Coop's feeding tube to pull up any food left in his belly and I was pretty scared to see some blood join the usual leftover breast milk. Helen took it to the doctor and was told not to think too much of it but we'd keep an eye on it. It could have been old blood from delivery that was ingested, or just a bit of blood from the tube irritating his tummy. Again, "we'll wait and see." After his stomach was emptied the went ahead with the scan and just a short hour later I was handed the results, "ALL NORMAL!" Thank you LORD! My boy's liver, pancreas, and gallbladder all appear to be normal in every way! Just one more check off our list. I was told the increase in his direct bilirubin is most likely due to his IV nutrients and fats. The doctor has chosen to cut out all the lipids (fats) and reduce his TPN (total parental nutrients) in hopes of stopping the upswing of the bilirubin levels. The catch is that he needs to be digesting and upping his feedings in order to get rid of the TPN all together but he also needs the nutrients from the TPN while he builds up his ability to digest foods. It's a bit of a catch 22 so we'll be working on balancing that issue. It's such a relief to have one solid answer on something. My boy's liver is ok. He's working on his eating and he's getting stronger everyday. We never know what tomorrow brings, or the next hour for that matter, but we have hope, so much hope! My nurse yesterday said something that has stuck with me, "We aren't in control. The doctors aren't in control. Cooper is writing his own story and we're just here to help him along." What a beautiful thought...I'm so thankful for these women and their hearts! Not that I'm a huge fan of this lack of control but I do enjoy the fact that my boy has his own story. The Lord created him for such an amazing purpose and every second Cooper is here is an addition to that story...that purpose. What a story it will be! I'm so thankful to be a part of it and to have to honor of calling him my son!