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!