We are Trying to Wean Kayla from the Ventilator Again

We apologize that it’s been so long since we have had time to update the site. We have been busy adjusting to Kayla’s new environment after our move from the 2nd Floor N.I.C.U. (Neonatal Intensive Care Unit) up to the 6th Floor Pediatric I.C.U. Since our move on September 18th, we have moved rooms 3 times so I’m sure you can imagine how crazy it has been. Kayla was recently moved to the less severe side of the PICU where babies are being prepared to go home. When we were told this we thought that we would be going home right away but it will probably take up to 2 months to find in-home nursing. Kayla will need up to 16 hours of in-home nursing a day once we leave the hospital. Kayla will be transported home by ambulance with a nurse and respiratory therapist caring for her along the way. We are very eager to get her home but are also a little apprehensive since 8 hours of each day we will be completely on our own.

Jeff and I are currently training with the nurses so that we can care for Kayla when we go home. Some things have been pretty scary to learn; however, with practice, we have become comfortable with her care. Caring for a trach is very involved but we seem to be getting the hang of it finally.

Over the last few weeks the doctors have been working on trying to wean Kayla’s ventilator settings. The doctors in the PICU have a different approach to weaning than the doctors in the NICU had. According to Kayla’s doctor “I wouldn’t go run a marathon without exercising first so that is what we are going to do with Kayla”. They are slowly working now on exercising Kayla’s lung muscles. They have taken her from 30 minutes a shift on just pressured support to 2 hours now. She is basically breathing on her own for almost 6 hours a day now. The doctors will keep increasing the time on pressured support until they feel they can completely take her off of the ventilator for short spurts. They will eventually try and get her completely off during the day for several hours but we are taking one day at a time.

Kayla had a follow up MRI on Friday (10/7) and was able to make it through the entire procedure off of the machine ventilator with just oxygen. It was really exciting to see her breathing on her own although it was a bit scary as well. We are hoping with time that she may be able to spend parts of the day completely off of the ventilator. She will definitely have to use the ventilator at night for a few years but if we could at least have some time during the day where she could be off, we would be so happy.

On Saturday (10/8), Jeff and I went to an annual reunion of babies who have made it out of the special care nursery over the years. We had a good time talking with other parents and seeing their kids. I don’t think there have ever been so many triplets in one place before. It was really great seeing how many kids were thriving now. I have to say it was a little weird only coming with a picture of Kayla. Hopefully someday we will be able to bring her to the reunion.

A friend of mine who has a baby with Myotonic Muscular Dystrophy, shared this with me and I wanted to share it with you. It really sums up what we are going through right now.

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...


"Welcome to Holland”

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned." And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.