“It is understood that the beauty of a rainbow does not negate the ravages of the storm; when a rainbow appears, it does not mean that the storm did not happen or that we are not still dealing with its aftermath. It means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover, but the rainbow provides counterbalance or color, energy and hope.”
We didn’t know a head ultrasound was on her agenda for the day. But we were used to all the hospital visitors from all different parts of the hospital coming and going, taking the samples they needed from her, not to be seen again. So it wasn’t alarming to us they were going to come in for a head ultrasound (U/S). Poor thing was only 7 days old- but it was just one more thing to check off our list. The whole scan lasted about 15 mins in total and that was it. She barely even woke up for it. Easy and done.
It was early morning and we were getting ready for our daily trek up to the NICU. We usually called around 8:30 am for our “overnight update.” We picked 8:30 because that’s when the Attendings did their rounds in Ashlynn’s part of the NICU. If we timed it just right, we were able to get the overnight update as well as get informed of what else was happening for the rest of her day (little tricks we learned while staying at the NICU Hotel). Most of the time we would call and would get “eventless” updates. It was mostly the same things: “She ate through her tube, she pooped, and she slept pretty well! See you soon, Mom and Dad!” Not necessarily ground-breaking news, but we were more than Ok with that! It’s funny how when I look back now- I realize I was almost annoyed with the “eventless” updates. Silly me…
One day in particular we were put on hold when we called in. The NICU Nurse Practitioner got on the phone. I could already tell I didn’t like this conversation. I had began to wish it was one of those “eventless” updates. Ashlynn was about 10 days old at the time and we had yet to get back her head U/S results. I seemed to remember that right at that very moment. She began by saying what they look for when they do head ultra sounds, evidence of bleeding, stroke, trauma, brain damage etc. My stomach dropped. I knew she wouldn’t be telling me any of this if it wasn’t relevant to our conversation. I honestly can’t remember much of that conversation. I remember feeling like she was speaking a different language. I didn’t know what any of it meant. All I took away from this conversation was three letters – PVL. I think Chris could tell by my face that I either was about to faint or throw up. I silently handed the phone to him and the most fear and panic I have ever felt in my entire life began to rush over me. Everything was in complete slow motion. And it stayed that way for a few days. We were told that they had found some “concerning areas” on Ashlynn’s brain scan but they wanted to do the head U/S again and then, most likely an MRI after she was 14 days old. They wanted a few more days to see if the results would be more clear. “A few more days?!?!” We had to go a few more days with this half-terrible news??? What I can tell you is this, in our whole entire journey those first few days were by far the worst days of my life. I am not sure anything will ever come close to the sadness I felt. I was completely numb, heartbroken, and devastated at the thought of what all of this could mean. We finally crawled to day 13. They completed the final head U/S and MRI as promised. We prayed that this was all a mistake; that there was an error of some kind. I think they even did the scans a day early for us. I think they could just see it in us; that not-knowing was killing us and our spirit.
At a very young 13 days old, it was confirmed that our sweet baby girl was diagnosed with Periventricular Leukomalacia (PVL). Basically, somehow our angel acquired brain damage in the occipital area of her brain. It was the most painful news I have ever received. There was no escape, no relief, no peace. It hurt and it hurt bad. I literally felt physical pain for the first few days. My body was shutting down. Tears would fall uncontrollably from my eyes without notice. I was absolutely broken in every sense of the word. My world was black. I had to fight to breathe. I had to fight to just be.
No one knows how her trauma happened – believe me, we asked. Many times. They do think it may have happened in utero around week 28-30. What did this mean?? No one had a clue. They did know that where the damage was located that she could possibly be blind or may never walk…and it was “very bad”- I believe those were the words one Attending used to described the damage to us!! And not in the most graceful of ways. A lot of “things” come along with having PVL and she was far too young to see where we were headed. We were told: “We have to just wait and see.” Cerebral Palsy is a common side diagnosis that may accompany PVL. So, knowing that her motor skills would most likely be affected, they began physical therapy at two weeks old right there in her little NICU bed.
As I had said before, the first couple of weeks were awful. We barely had any concrete answers; we didn’t know where or how or IF this would manifest. And, worst of all, we still couldn’t bring her home. I think that had to be the hardest thing for us. All we wanted to do was love her, protect her, and have her home. We obviously went through a lot of emotions. A lot of downs… but, eventually over the next three weeks, those downs started to turn into ups. As the storm began to clear, we were able to see. At the end of the day, we had a beautiful baby girl, a brand new addition to our family, and we chose to celebrate that. We began to see the light in a very dark place that we created. As our family, church family, and close friends began to surround us and cover us- it started to get easier to breathe again. To not feel so crappy 100% of the time. Little by little, we began to have more good days than bad. We both decided that we can not dwell on the things that we can not change. We both decided that we can not stay in that dark place. Why?? Because there was so much beauty all around us!! Our baby girl was alive!! She was going to be ok and we had each other. We were blessed with two beautiful children that needed a happy mommy and daddy. WE WERE CHOSEN to be their parents.
We decided from that moment on, to release it all to God. All the fear, all the worry, all the anxiety. That’s not to say we don’t worry- of course we do, that’s what parents do. It’s more so, we decided not to worry about where our journey was going to take us. We have no doubt that God is with us every single step of the way, and He always will be. By the time we left the NICU, we were ready to take on what ever came our way. We did end up getting that Cerebral Palsy diagnosis I mentioned earlier, but that name has no power over us (anymore). As Ashlynn gets older, we’ve continued to see how amazing she is. How strong and beautiful she is. How loving and happy she is. She is still on track with her motor skills and she most definitely is not blind. God is so good. She is progressing and growing and thriving. We will continue to expect the unexpected. We will continue to work hard with her and show her that she is absolutely perfect…she is Perfectly Ashlynn. We have a long road ahead of us, filled with hours of therapy (play sessions), doctor visits, and evaluations. But let’s not forget the many celebrations we will have as she conquers milestones, big and small!
So I leave you with this advice. Hug your babies tonight…and your loved ones. Live each day IN the moment. Pick your battles and see the big picture of life. Celebrate your health and the things we may all take for granted- like walking with ease! Run that extra mile. Be kind to people- because most people don’t have blogs to share what’s going on with them behind the scenes. Know that God has a plan for you- he will never give you anything you can’t handle. I absolutely don’t want you to feel sorry for us, or for Ashlynn…but instead empower her. Support her and others just like her. Root them on. Give them a smile and realize that someone loves them with all their heart and soul. Somebody prayed for this child and loves them exactly the way they are…
and now the real journey begins and we’ve got this…