This morning started like most in our new world. Blood draws at 4am, x-ray machine wheeled in at 7am, shortly followed by the ultrasound machine. This morning was a busy one for our little guy. A few hours later our doctor rounded through and we got the plan for the day and an update on what's going on with our mini Cooper. I'll start with the good news...the brain ultrasound came back normal, no bleeds, thank God. The CBC (complete blood count) came back showing platelet levels at 124,000, a MUCH different picture than yesterday's count of 52,000. We're still a bit unsure of this giant jump and what that may mean but all we're focusing on is that they are in a safe spot so that's great! His chest x-ray looked much the same...hazy but ok. He is doing well with his feedings for the most part, despite lack of a bowel movement in over 24 hours, so they are increasing the amount of breast milk he gets at each one...more good news. They have also chosen to take him off of his regular dose of caffeine (he required it because preemie's systems are so immature that they often just forget to breathe and the caffeine stimulates that reflex) because his heart rate is running a bit high, jumping even higher, and because of his bought of SVT.
Then came the "ify" news (it never really begins as bad news since most of it is 'watch and see' stuff that can turn bad or good). His indirect billirubin numbers are fine (those are the levels that are linked to needing those lights I talked about before and you've seen in pictures) but, against the odds his direct billirubin numbers have jumped. The doctor explained that this doesn't usually happen and is alarming enough to require further testing. These levels are linked to his liver so at 4am during his usual blood draw they will be testing for some enzymes to make sure his liver is functioning properly. If it comes back abnormal they will need to ultrasound his liver and see what's going on. We were told not to lose any sleep over this at this point, it could be just fine. It's alot easier said than done this not losing sleep over your sick and helpless baby stuff but I'm working on it. Maybe this is just mommy intuition or just me being overly nervous but the liver is where my thoughts have been lingering through most of this stuff so I'm very curious to see what we find out. My brother's surgeon Marleta is a tremendous blessing to our family and has been calling and checking in on our Cooper. She brought up the liver the day she found out about his early arrival and symptoms so if we're facing an issue with it I will not be the least bit surprised. I have yet to get a straight answer on what exactly a problem with this would mean but I plan to do lots of research once I'm done with this post.
Our day today should be uneventful...as long as Cooper behaves himself. Much like yesterday but more news to come in the morning. As we were going through today's plans our nurse sat down with us to just chat about the weeks and months to come. All those details that we were too frail to think of before...insurance, billing, after hospital intervention, etc. It felt so odd talking about going home so early in our journey but it also felt good. It felt nice to say those things out loud. To allow myself to believe that our future is a bright one. I've been holding on to that hope but I just couldn't allow myself to think about it for fear that it may not happen. I also couldn't think about the alternative to bringing our boy home. I don't even dare to say it out loud now. It's just too heart wrenching to consider. As I'm contemplating all of these things I heard a gut wrenching cry from the hall and knew in an instant what that mother just 2 doors over faced. Her baby's outcome was the unspeakable. Her cries took my breath and my aching heart heaved for hers. I couldn't hold myself together just hearing her agony. That cry flooded me and made me think of our dear friends who too just faced the cruel reality of losing their baby. I can't even contemplate the heart ache they must be feeling. I long to cover them in comfort and peace. Surround them with love, and take it all away. I feel so selfish being so caught up and sad about my new normal...praise God for my new normal and for the difficult times I'm facing. Their new normal is so very different, and I'm so sorry for that. I ache for them and have been continuously praying since hearing that horrific sound.
The nurse knew just what I needed and placed my boy in my arms. I couldn't hold him close enough. I'm so thankful for every breath that boy takes. Even if he weren't mine forever he is mine now and I'm thankful.
I just want to end this post with a special thank you to Matt and Betsy Mitchell. We love you with all our hearts and can't even put into words how deeply we appreciate everything you have done. In the midst of your struggles and pain you have carried yourselves with such beauty and grace and put us ahead of yourselves. You are a blessing beyond words and your spirits are so bright. You are loved so deeply and lifted in prayer so often. Your sweet Kate has touched the hearts of many and brought such blessings. She'll always be remembered and loved! xoxo
Psalm 121:
ReplyDeleteI lift up my eyes to the hills-- where does my help come from? My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip-- he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you-- the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm-- he will watch over your life; the LORD will watch over your coming and going both now and forevermore.
My dear friend,
ReplyDeleteMy heart bleeds at the reality that both of our worlds have stopped...together. No two situations or experiences of maternal grief are the same...I cannot imagine your fear and I PRAY you never experience my reality. Still, there is comfort to be found in the fact that our world have halted side-by-side for the time being. Thankfully we can reach out from our shattered realities and grasp each others hand. I'm here for you...now and always. I know my sweet Kate is cheering Cooper on! :-)