It's only 9am and our boy has had a full day's work up done already. He's resting comfortably with a heart rate in the 160's and good stats so all is well now.
Last night was a bit bumpy but mostly because Cooper just didn't seem to want mommy to leave his side (what a wonderfully beautiful problem to face). Sleep eluded me so the nurse and I decided to give Cooper a sponge bath at midnight. The bath was not only a relief to his body in the end, but also a very important bonding time for me. To know that I can care for my baby is HUGE for my well being and cleaning him and touching his skin gives me such a sense of purpose and love.
He was soothed and snuggled up afterward and we thought he'd sleep so soundly...little did we know that all he wanted was mommy's touch and his pacifier. I spent over 3 hours standing at his side and holding his paci in his mouth. Any attempt I'd make to lay down was shortly followed by his whimpers and cries until I dragged myself back to his bedside and watched his heart rate immediately go back down and settle into a slow rhythm and then he'd lull back to sleep. What a stinker. Around 5am he was tuckered out and finally gave into some solid sleep without me directly touching him.
We rested until about 7:30am when his room sprang to life. First came his chest x-ray which he's been having pretty much every morning to get a good look at his lungs. Next came the good news that his platelets had raised on their own and were at a nice level. Then we discovered that his calcium was a bit low so they changed his nutrient concoction and that had to be rehung and started right away. Next came his "cares" (which I get to do). Yet another new term for me...basically it's checking his vitals, changing his diapers, changing his positioning, and cleaning out his mouth if need be. This is my favorite time of the day (besides the days I get to hold him) because, again, it gives me the sense that I can care for my baby. It's such an amazing feeling to know that I'm at least playing a part in this situation. Sometimes being a NICU mom leaves you feeling so helpless that you begin to think being there doesn't really matter at all. When you get to do your part, as small as that part may be, it brings peace and self-worth in this uncontrollable time. Cares bring joy to my heart and a sense of purpose to my soul. I'm his mommy and he needs me! Following cares came his echo cardiogram. The tech performing the echo couldn't tell me anything but we're praying his PDA has closed from the first round of medication and that we can avoid more meds and surgery. Once the echo was done we discovered that his IV is no longer working so it needed to be removed. Cooper has an IV and a pick line (an iv that basically goes up through this leg and straight into his heart). His pick line serves as means for his nutrients that continually flow through him 20-24 hours a day and his IV typically serves during transfusions (blood is too thick to go into the pick line) and medications. IV's tend to have a shelf life and go bad where as the pick line can last months, and since his stay is foreseen to be quite long, the pick line was his best option. That all being said, his IV has gone bad (this is #3) and it's time to do another if need be.
After all that madness I find that's it's only 9am and it feels as if a whole day has passed. Hospital time is so different than real time. It's easy to get lost in. The seconds can feel like centuries but then suddenly 4 hours have passed and you don't know what happened. It's very surreal and hard to grasp but again...it's our new normal so I'm working on getting use to it.
A bit after 9am Dr. Becker, our cardiologist walked in to go over the echo results. He began with the delightful news that the medication did just what it intended to and closed up our boy's PDA. He followed that by saying he was actually shocked by it since it was so big. Whew! (thanks for all the prayers...God is good) He followed that exciting news with, "but I still hear a murmur." (roller coaster goes up, roller coaster goes down) He explained that since the PDA was closed off and the flow was gone during this echo they were able to see more clearly and found a structural issue within Cooper's heart. He explained it like a water hose when you stick your finger over the spout and cause pressure it begins to shoot wildly. They measure that pressure and then decide on a course of action. In Cooper's case the pressure is at 20% and has led to the tried and true result of..."we'll wait and see." Basically we're waiting and hoping for this issue to resolve itself and we've been given a window of 3 weeks for that to happen. At that point we will do another echo and see where we stand. I didn't delve to far into what comes next because I'm sure of the answer (we'll find out when we get there) and also I just don't know if I can face it just yet. One step at a time.
It was a blow to hear but thankfully not a lingering punch that left me sobbing. Instead I faced the unknown with more hope and less worry. Something I'm striving for through this process. Just leaning on God for strength knowing His hands are on this therefore I should find peace in these troubled times. Worry won't add a single moment to my life...I repeat that quite often in my head all day.
Instead of lingering over the "what if's" I found myself smiling and playing with my daughter, surrounded by loving and amazing family members that traveled from miles away just to stand by our side during this fight. They have lost sleep and sacrificed to just show up for us and then have to leave a few short hours later. What peace and joy they have brought! Seeing Cooper steal their hearts was so warming and soul soothing for me. My boy is deeply loved and cared for by so many. Blessings were all over us today and we're so thankful!
Despite the love that lifted me through my day I still find myself a bit shaky and unable to spend the night at home. There is something so comforting about being by my boy's side, even if I'm not doing anything. Just being there to hear his whimper makes me feel like a mommy...I'm where I should be taking care of him and loving him. I know and trust the nurses with everything but it does this mommy's heart good to be able to react to his stress signals. Here's to an uneventful and soothing night followed by the light of a new and hopeful day.
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