Happy 1 week birthday to our fighter!

Well I started this blog thinking I'd have plenty of time on my hands just sitting in hospital rooms waiting for our son to grow...turns out that there is no sitting or down time in the NICU while balancing life with a toddler at home. One week has passed since Cooper's arrival and it has been the longest, but somehow also the fastest week of my life. The seconds seem so long yet the days seem so short. Everyday has brought ups and downs and we're beginning to notice a very frustrating trend...lack of control!

Despite the very traumatic entrance Cooper had into this world I was as close to cloud 9 as must have been flooded with that mommy pride and adrenaline because somehow I was able to block out the real dangers lurking in our future. Our new reality had yet to set in. Don't get me wrong I was worried, I was broken, and I was fearful but I was oh so joyful that he was here and breathing. To find out just a few hours would have changed that fact, brought such hope. I spent the first 24 hours in a haze of half-reality hinged on faith and disbelief. Then, with the dawning of a new day came the opening of my eyes to my "new normal."

Suddenly we were in the midst of a new language that had our minds spinning and searching for meanings and understanding. We were lost and so overwhelmed. Every second I was able to spend face to face with a doctor was cherished and I wracked my brain to think of questions to keep them talking to me, yet my mind was blank. I tried so hard to make sure I was an advocate for my son; asking questions, pushing for answers, and speaking up for his tiny, frail, and helpless frame. I wanted so badly to keep probing for direction and control but found that the answers were always the same--"We'll wait and see. We're not sure. We're keeping a close eye on it and will go from there." No one in the NICU is in control. The doctors and nurses are caring for and treating their patients to the best of their abilities and I'm so thankful for their expertise and tender care but they are far from in control. There is no answer most of the time in my new world and that is a very big challenge to deal with when you watch a piece of your heart struggling to survive.

Narrowing down Cooper's issues is difficult since most of them are so sporadic and unexplained. Basically, at first, I thought we had a tiny baby that would just take time to grow and develop...turns out we have a sick little guy and no one knows why. We don't know what happened while inside my womb and we don't know why things are happening now. The up side of that is that here in the NICU he's being monitored 24 hours a day and in amazing hands. We have been able to pin point some things to attack and try to fix but any reason for these problems still eludes us.

The first problem that plagued our boy in his first hours was a severely low blood pressure which they treated with multiple boluses until the problem corrected. The boluses led to some major fluid weight gain and swelling that he had some trouble excreting so our guy was quite blue and puffy. I believe one nurse called him her sweet little smurf. After the low blood pressure was corrected we faced dropping platelet levels. These dropping levels left Cooper at risk of bleeding out which is very scary for a mommy and daddy to hear. Those low levels along with the swelling/edema issues and some strange pooling of fluid which appeared to be blood under his skin, led to an ultrasound of his abdomen and his head. The ultrasound showed fluid in all 4 quadrants of his abdomen but none in his head. The doctors couldn't tell if the fluid in his tummy was blood or normal but it was minimal so the plan has been to wait, watch, and hope it clears on it's own. After those issues we were hit with some good news...his oxygen levels were so good he was able to come off of his CPAP (continuous positive airway pressure)! They took it off and he was so alert and happy that whole day! His eyes were open and it was the first time he seemed like a real baby. But the elation was short lived. Within 24 hours began to show signs of respiratory distress and was put back onto his respirator. The day after that he was showing lots of signs of stress with low blood pressures, elevated heart rate running in the 190's continuously, fast breathing, and was incredibly lethargic. Besides being just plan sick that day the doctors also noticed a heart murmur. They called for an echo cardiogram and found that Coop has PDA (Patent Ductus Arteriosis) meaning that a duct in his heart that should have closed at birth is still open and pumping blood to the wrong places. Basically he was showing signs of heart failure. Clearing up the PDA can look different for each case. The first approach is to treat with medicine and the second option (if the first fails) is a pretty straight forward surgery. Cooper was given the medication Indocin every 12 hours for the past day and a half and we're now waiting for another echo in the morning to see if the first round of medication has closed/partially closed the PDA. If not we reassess and treat accordingly.

We began Cooper's 1 week birthday thinking that clearing up the PDA would really lead to a positive domino effect and hopefully our boy would begin to get healthy and just eat and grow until we got to take him home.So the day began with lots of hope and positivity--I don't even think I cried this morning-- now that's saying something at this point! But that sigh of relief was again quickly averted when during a routine diaper change our Cooper's heart rate went from the very healthy and calm 160's to 300! That's not a typo...300! Thankfully we were right here with him along with the nurse and occupational therapist and everyone sprung into action. The nurse raced for the doctor and I, of course panicked and was everything but screaming for my boy to be ok. The therapist directed me to touch him and speak soothingly to attempt to calm him. It was so hard and the tears streamed as I gasped in disbelief at the pounding of my tiny baby's heart under my fingers. Was he going to be ok? Was that tiny muscle going to explode (it certainly felt like it would)? How can his tiny body take this? I was an array of panic when the doctor came in. I quickly moved out of the way and into the waiting arms of my husband who was holding it together beautifully as I melted into a heap. Within seconds I looked up through the blur of my tears and saw his heart rate back at 160. I looked at the doctor in shock and bluntly said the first thing that came to mind..."What the hell just happened?!" He calmly explained that he stuck his finger down Cooper's mouth and gagged my son. He described it as his "reset" button. Apparently Cooper experienced what is known as an SVT (supraventricular tachycardia) when his heart began to beat wildly out of control. This type of episode isn't uncommon in our new world and we were told we shouldn't be too shocked to see it again. I'm just not sure I can handle that so I had a talk with him and sternly told him not to do it again...let's hope he listens. Shortly following the SVT the nurse noticed how shaken I was and insisted on me resting. She brought me warm blankets and tucked me in (God bless this woman...Stephanie you will always have a warm place in my heart) promising to not allow anyone to bother me. I fell into the blissful unaware state of sleep only to be suddenly woken by the alarming of Cooper's monitor once again. This time his heart rate at fallen clear off. I shot out of the bed and into the hall before I even knew what was happening. I was met by his nurse that quickly said, "He's ok." By the time we got back to his side it was over and his heart rate had reappeared. This time Cooper had experienced a Bradycardia attack which is also now a part of our daily reality. After this attack my nerves were shot and any chance of rest was out the window so Stephanie gave me a huge hug and said it was time to love on my boy. I got my sweet and cozy skin to skin time with my baby.

That time is magical and can't even be explained. Every time I have him in my arms I am reminded that this is how it should be. Not just that I should be able to hold and care for my baby on my own anytime I want, but that he should be WITH me, a part of me, inside and safe for 10 more weeks. I get angry and frustrated with my new normal. I feel so cheated out of the picture I had in my head. Ellie's pregnancy, labor,and delivery were all so perfectly blissful in every way. Yes, even labor was blissful, hard to believe but true. This time so much was yanked away from us and it's hard for me to swallow from time to time. I get mad for a bit and then realize the God is in this, therefore it won't be wasted, and it wasn't an accident. God is working good into this garbage dump or a reality.

There has been much darkness in these past 7 days but also SO MUCH light. The devotion, support, and love that you are all giving us is overwhelming! We feel so uplifted by every comment, like, and kind word. All the phone calls, texts, emails, and messages are not going unnoticed. You are all carrying us through this and have become and will continue to be part of our journey. Cooper is one blessed little boy to have so many people fighting for him. We are documenting and saving everything and look forward to sharing it all with him as he grows. You are a tremendous blessing to us and we love you!

--Sorry these first 2 posts were so long. I had a tough time getting everything started in a timely fashion due to all the issues Cooper is facing so there was alot of information to jam into the first two entries. I'm hoping to be short and sweet for the ones to come, but can't promise anything. This blog is to pass along information but also to serve as a bit of therapy for me during this process.--

The first days