As a mom your responsibility is to take care of your child.
After five years of being the main caregiver to our daughter (of course my hubby does amazing too) it comes natural to me. Yes, I’m exhausted all the time and I dream of getting a lengthy break. But I never expected a break like this.
I feel like I’m reliving the NICU days when I was a new mom and Lily had a stroke at 2 days old. Your scared to touch your baby and the only thing you feel useful at is providing milk. But at least then I could provide her food.
This time, as Lily is on day five of being sedated and intubated from two unexpected respiratory viruses that hit her shortly after a major hip surgery, I can’t help feeling lost and helpless.
I want to be in the room for her to help when she wakes up coughing or in pain. But even then I can’t help make it all go away. I can’t clear her airway for her as I’m used to doing at home. I can’t even really change her diaper unless a nurse is able to help because it causes her pain and she has a huge awkward cast to work around. I feel more in the way than helpful.
On any other admittance I still do all the suctioning, I do all the feeding, all the diaper changes, and even double check and give the medications after the nurse brings them.
Here in the PICU I can’t really do anything. Yes I’m extra hands for the nurses if needed but the thing is they don’t usually need me. So I decide to go to the parent lounge or the cafe for a while so I can at least have a change of scenery. Our room doesn’t have a window so you easially loose track of what time of day it is.
This way of living, feeling helpless to care for my little girl, I can’t get used to.
I’m used to suctions, feeding tubes, feeding button replacements, oxygen masks tanks and concentrators, enemas, catheters, cough assists, vibrating vests, 2 nebulizer trearments, 6 medications, and 5 supplements that we do at home for Lily’s care.
I can get used to the breathing tube knowing it’s temporary.
What I can’t get used to are the silent screams that go along with it when she’s awake and alert and in pain. It’s excruciating to watch. The not being able to make the pain she’s experiencing go away. The not being able to pick her up and hold her to comfort her. All I can do is hold her hand put my hand under her head and talk to her. Which usually does no good.
This girl has a high pain tolerance but with the pain from the surgery, the sores she’s getting from being immobile, and the respiratory pain from recovering from collapsed lungs, she has hit her limit.
We’re told it may be a couple more days til they get her off the vent. We will then have another day or two in the PICU, followed by moving to another floor before we can bring her home.
I’m already beside myself with exhaustion and boredom. Daniel caught a cold and had to go home or he would be here with us so he feels about like I do. I think I can catch up on some netflix or write a facebook or blog post, then your needed briefly and get distracted. This post has taken most the day to write because of this. I’m living a hurry up and wait lifestyle that I’m not fond of and just feel helpless.
But even now I know God is good and has been taking care of not only Lily but us as well. He has always and will always be faithful. We’ve got many loving friends and family reaching out to help and we are overwhelmingly blessed.
Because of this is why I’m not just helpless but I’m Faithfully, Hopefully, Helpless.
Many keep asking how they can help. Here is the info below:
Prayers are always greatly appreciated!
Lily enjoys getting mail and gifts. She loves stickers, Disney, & anything bright, sparkly or flashy.
Her address is:
PO Box 435 Effingham, IL 62401
Her Amazon wish list is:
If you’d like to help financially:
You can donate to ‘Lily Drake Benefit’ at Dieterich Bank.
Thank you again so very much for all the love and support!!!