I listen to the sound of the vent helping our daughter breathe and think how miraculous medicine is these days. But all the science in the world can’t help us see into the future.
Ask me what the plan is for tomorrow and I’ll tell you, I have no idea. What will we be up to this time next month? Haven’t the slightest.
I have obviously taken time off work for maternity leave but my work as a mom doesn’t look quite like it would normally. I feel stuck in the in-between. By nature, I want to be productive, follow instructions and make some kind of a difference. It is easy to feel lost. Could someone please return the apparent missing instruction booklet for this?
Luckily, Cooper continues his days at school through the summer. His days look similar now to life before Audrey came into the world and landed in the NICU. We want that for him, to keep some normalcy. Between our parents, families and friends, that little boy is well taken care of. So, while Cooper spends his days with other kids his age, learning, living and laughing, Chris is back at work improving smiles around Oklahoma City…my work seems to be making milk and spending my days in the NICU.
Thankfully I have the flexibility to do so. There are many families here right now with children who are on summer break and the moms and dads struggle with the balance of NICU life and some sort of normalcy away from the monitors and machines. It isn’t easy.
When I am not at the hospital, I wonder what I may be missing. I wonder if my bond with her is weakened by my absence. People always say babies know when their parents are there…so does she feel it when we aren’t? 10-11 hour days at the hospital can start to wear a parent down. There, I said it. But it feels like I am playing hooky or cheating on Audrey if I go eat lunch or run errands.
People keep asking, “Are you and Chris taking care of yourselves during all of this?” We’re doing the very best we can. Staying strong for both of our children but allowing ourselves to admit it is hard. We know good and well how important it is to keep our health in tact, both physical and emotional, yet sometimes in survival mode it seems we run on adrenaline, not feeling the effects…until we do. Until we stop…breathe…and “feel”.
Yesterday, I asked Cooper, “Did you get to help a friend today?” He replied, “Well, I was climbing the rock wall and fell down. So I helped myself up.”
There he was, a not-quite-four-year-old who seems to understand one of our most basic needs as humans. If we don’t intentionally help ourselves, we’re no good for those who need us.
As far as an update on Audrey, we’re in a bit of a holding pattern…a waiting game. She remains on the vent to assist her breathing because her lungs are underdeveloped. She’ll have a heart echo tomorrow to evaluate the current status of the defects. A head ultrasound today shows no bleeds or hydrocephalus and confirms what we already know, she has Dandy Walker. An MRI on her brain is needed and important but simply cannot take place until she is stable. Her blood gas levels are mostly the same, the CO2 continues to be higher than it should be. He red blood cell count is on the low side, praying she won’t need a transfusion. We are still unsure if she can see or hear. A pediatric ophthalmologist from OU will evaluate her eyes on Monday. She rarely opens her eyes, but when she does my heart does a little jig. She doesn’t appear to react to sound, even a sneeze when she is being held, but we’ll know more after a hearing screen once she is bigger and older. We celebrate the fact that all this milk I appear to be producing is coming in handy. Her feedings are up to 24mL. The goal is now 31mL when she can have that dreaded PICC line removed. They have added a human milk fortifier to each feeding to increase her caloric intake. It adds, get this, 22 calories per feeding. We are thrilled that she is inching closer to returning to her birth weight and also excited that she can wear clothing sometimes! What she can wear depends a bit on how she is doing that day, so we’ve been advised to hold off on purchasing clothes, they have what she needs. Another victory is that since she is four pounds, she can now be swaddled and held. My heart almost overflows when I get to see her that close. When I can kiss her itty-bitty nose and smell her head.
Each day, I look closely at this tiny human. I scan her body from the top of her head to her pinky toe that is about the size of a piece of orzo. I wonder if her physical abnormalities have or have not changed, I desperately want to know why her gum line is so rigid or if her feet will ever be straight. The funny thing is, when she is wrapped up tight with a hat snuggled on her little head, for a moment I forget about the monster living in her brain or the hole in her heart. I want to fight it for her. I want to take it all away for her. I’m mad that this angel baby, who doesn’t deserve any of this, has already endured so much and yet we still know so little. And then I am reminded of something else our toddler said just this week that stood out. As my mom and I picked him up from school, he looked over at a giant front loader helping widen Western Avenue. In a heartbeat he knew something looked different. He noticed that the arm of this piece of machinery was unlike those he has been so interested in since about age two. Confused, he looked at it and said, “Look at that front loader…it looks different.”
Learning opportunity? Challenge accepted. “That’s right kiddo, it does look different, huh? It’s still a front-loader though isn’t it? It just looks and works a little differently than others.”
Remember this, sweet Cooper. Remember this conversation. It may be worth gold in your future.
The steady and stable “rocks” for us in the NICU, Kim and Trisha, have particularly played an important role in all of this. They literally see this every day, work with the families and babies of the NICU 12 hours at a time. Between them and all of you, family and friends, we are hanging in there. I described to Trisha this week that I have days it feels like I am being held together with one single strand. That at any given moment it might snap and I won’t be able to survive. Then, because my good God knows I need it, someone says something or a moment happens that adds a strand back. More and more strands build up to be like a strong braid and I survive the hour, the day or…gulp, the night. A text or email from a friend, the most sincere “We’re here for you” reminder from one of our incredible parents, a hug from a loved one, a meal from a neighbor, a door holding by a stranger, an “I love you” from Cooper or a peck on the forehead from my darling husband…these gifts, from each of you, get me through to the next day.
You, and God’s sweet grace, make up my survival braid. Thank you.
I may not have a thank you note in the mail, or have had the chance to acknowledge your flowers, notes, gift cards, etc., just know how deeply we appreciate it. Many have asked to host a shower or help us set up a room for her. Thank you. Even the offer is beyond generous and thoughtful. As we wade through these days and weeks, we continue to pray for the clarity we’ve been seeking and look forward to the day we get to accept these offers. For now, know that your prayers are working small miracles and are the very best gift you can give to us and to Audrey.
As I finish this post, it is about seven hours since I started it. Since then, a shift change has happened and a different nurse will care for our baby through the night. A feeding tube will provide her the nutrition she needs. A vent will pump oxygen into her lungs. She will have yet another heel prick to check her blood gas levels. She’ll continue to fight even if we aren’t there.
Fight baby, fight. Live. Thrive. Beat the odds. Be the miracle. Prove the power of prayer.
To each reader, be well. Rest well. Thank you for loving us through it.