We have a new address at OU Children’s. No longer is Audrey a patient in the PICU, she has finally and officially moved to the NICU. For over a week it was suggested by her team that perhaps “tomorrow” she will be ready…well, today was tomorrow.
Since being extubated on Saturday, Audrey has mostly done very well. She started on a high flow nasal cannula on Saturday evening and by Monday morning they had weaned her down enough to be put on slow flow. It felt shockingly fast. And it was really. It was too fast for her. The results of her blood gas tests revealed she was not oxygenating her blood well thus her CO2 levels were too high. Thus, she was placed back on a higher flow. Momentarily discouraging but the fact that she hasn’t had to be reintubated is wonderful.
Sadly but not unexpected, Audrey has been experiencing the devilish symptoms of withdrawal. Even with the medication to help the weaning process, it has been occasionally hard for Audrey. And, admittedly, for her mama. No parent desires to see his or her child in any amount of pain or discomfort. It sends an electric twinge down your entire body. An ache. Parental empathy I call it. But, this is part of it. She has to wean off the pain medication and the simple fact that she can is progress.
Her time in the NICU is not set. There is no goal or end date. For now, we need to be patient with her as she continues to grow stronger in her lungs and breathing abilities. Once she is, we can begin attempts at bottle feeding again. It might be a slow process, but we’re ready to help her through it.
In speaking with Audrey’s heart surgeon, he would like to have her back for the second open heart surgery between 4-5 months of age. It sounds like around the month of October. My prayer is that some amount of time between today and then is spent at home. Outside. Away from the hospital. I can only imagine how hard it would be to leave the hospital now that she has lived in one her whole life…all seven weeks. But we want her home, desperately.
It seemed to be an all-day process to move two floors down to the NICU today, but we are extremely grateful she was able to make the move. Fresh eyes will evaluate her. A new team of doctors and nurses will round each day to track her progress. These people will know more about her than her own two parents…but there are things about her that no one can truly know like her Daddy and I.
Sometimes she has one random, loud hiccup. It catches you by surprise.
Just as she is falling asleep she grins. It is exactly like what Cooper used to do when he was fresh into the world.
She prefers her head to be turned to her left.
She loves for her head to be lightly massaged.
Her hair is as soft as feathers.
I wish I could record the sound of her heart beating, or the soft breaths she takes each minute. These are the sounds of life. Of living.
“She may be small, but she is fierce…”
We made it one step closer to a “Ready Room for Audrey”…we purchased a chest of drawers to house her clothing. I picture it full of little outfits someday, and I wonder just how big the clothes will get. Won’t it be wonderful if she outlives the chest? That she gets to use it for so long, it wears out? I hope so. I pray the drawers are each opened and closed thousands of times. That the need for shirts and socks and skirts and bows goes on for years and years. It’s not about the “stuff” but the life for which you have it. The events for which she might dress. The memories made in this dress or that bow. An important and meaningful life she absolutely deserves.
Yes, I have high hopes for this chest of drawers. But even higher, I suppose, for my daughter.
Today was a good, good day. She had her time of stress and need, but so did I. I am trying to remind myself to pay a little less attention to the monitors and watch closely to Audrey’s cues. What does my gut tell me she needs in that moment. Go with it, Rach. A mother’s instinct is real and legit. It is a blessing that ought not be ignored.
The most important role I have had the opportunity to play over the past two days is a cuddler. She’s been back in my arms, in Chris’ arms, in her NayNay, PawPaw and PapaNeen’s arms again. Back where she belongs.
I could hold that child for hours and hours if they let me. And one day I will.
Until then, I’m thankful for whatever time I get.
Hugs to all as a thank you for continued prayers and thoughts.