Now imagine your child has been in the hospital for 11 months … yes, you read that correctly, 11 months. You are finally bringing your child home, but not without a few machines of course.
1. Heart Rate Monitor – This consists of 3 cords that are on your child’s chest and hooked up to a box that beeps every time your child’s heart stops … OR your stupid cords fall off, which they do … A LOT!!
2. Pulse Ox Machine – This machine is made up of a cord wrapped around a finger or toe. This measures the amount of oxygen she is getting. A normal child/person should read anywhere from 98-100. Kendall has always been a little different and usually registers around 95. This machine was set at certain standards and they set it without you being able to change it, so every time it drops below whatever they set, another alarm will go off.
3. Oxygen – Some children come home on a nasal cannula, which is in your child’s nose and hooked up to an oxygen tank. In our case, we had a huge machine in addition to a smaller oxygen tank, so we didn’t have to use portables at all times. This made sure that she was getting enough oxygen.
So, now we’re up to 5 cords wrapped somewhere on or around your child and then another cord is added at night. Kendall had a g-tube because she couldn’t eat quite enough on her own so that meant another cord – her feeding tube.
4. Feeding Tube – This was yet another cord that went from the food machine to her g-tube in her stomach. Throughout the night she gets a set amount of food per hour and it pumps on its own.
I honestly don’t have a lot of pictures of this time. I wish I had taken some, but I was more preoccupied with making sure she was breathing and eating like she should have been, not to mention I had a one year old on the move also.
There is nothing that can really prepare you for what you are coming home with. I was so excited to bring Kendall home that I didn’t care how much stuff she had coming with her, I just wanted my child home. It had been 11 months and I was ready to finally have my babies together.
I have to say that I seriously underestimated all the stuff she came home with. There were so many machines that Kendall and I would sleep downstairs. Her in a pack-and-play and me on the couch. The cords were so touchy that they would go off a lot during the night and me going straight into mom freak out mode would have to:
- Jump up like the house is on fire (trust me this is really how you react)
- Check and make sure Kendall was breathing
- Silence the alarm if possible so we didn’t wake up the entire household
- Check and make sure all cords are on correctly and plugged into the machine fully
- Check and make sure there are no kinks in the cords
The hardest part for me having Kendall home in this condition was I NEVER slept, and I honestly mean NEVER. I was so terrified that Kendall was going to strangle herself with the cords that I was constantly checking to make sure the cords weren’t wrapped around her neck. The matter only got worse as she got older because she was learning to roll over and the cords would literally be everywhere. Once the cords started to come off things got a little easier. The day Kendall got her oxygen off was right before her 2nd Christmas. We were so excited to have her home and off oxygen and finally got to sleep a little better at night.
I know these cords were all there for a purpose and are all made to keep our children safe; however, with so many cords, there wasn’t a great way to keep all the cords straight and in one place and away from her neck. I would recommend finding a system that works. For us, that meant:
- Finding certain ways to lay the cords
- Using certain PJs that kept the cords in place
- Positioning Kendall where she couldn’t move around a lot
No matter how many cords you come home with or how you figure it out, they’re there for your peace of mind and child’s safety, and they WILL eventually go away. You might even miss them one day!