Sleeping Beauty & her Bi-pap

Since 2009, Jaycee's obstructive sleep apnea has been treated with a c-pap or a bi-pap machine. People with Down syndrome are more at risk for sleep apnea due to their smaller airways and low muscle tone. Usually with children, removing tonsils and adenoids fixes the problem. Jaycee did have this procedure but her apnea persisted. I'm not sure how many young children with Down syndrome use bi-pap machines to treat sleep apnea. I personally do not know of any. Jaycee started using hers at age 3.

For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!

I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.

Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!

One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:

It just so happens my mother-in-law picked out the perfect bed for Jaycee without her even knowing it. She got this bed pre-sleep apnea but it's worked out great. The bed has drawers underneath it. We put her machine the drawer and she can flop around all she wants without turning the machine over. I forgot to tell my parents about this during Jaycee's last sleep over at their house. When they checked on her, her machine was upside down. Fortunately, the water did not escape and ruin the machine. This is something we have to think about when we are away from home.

Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!

Celebrating Jaycee

Happy World Down Syndrome Day!!!
 
 
 

Today is March 21st so it's time to celebrate the ones we love that have an extra 21st chromosome. Jaycee's life is amazing. She has overcame so much. Even though she's had many surgeries, hospital stays, and medications, she has a sweet and caring spirit. Her smile and love have affected many people. Here's some things about Jaycee:

5 things Jaycee loves: 1. movies 2. people 3. pizza 4. going for rides 5. music (especially worship at church)

5 things Jaycee hates: 1. Her bi-pap 2. When a doctor checks her ears 3. When her grandparents leave 4. When she doesn't get seconds at meals 5. Having her nails trimmed

5 recent achievements: 1. She's learned to spell her first name. 2. She's learned over 25 sight words. 3. She will make squiggle marks as if she's writing her name. 4. She can give herself medicine in a syringe. 5. After a meal, she can put her dishes in the dishwasher.

WDSD Coming Up

Next week on March 21st people around the world will be recognizing World Down Syndrome Day. The date 3-21 was chosen to represent Down syndrome because individuals with DS have 3 copies of chromosome 21. The gifts and abilities of these people should be recognized and honored on this day. In an age when majority of pregnant women end up aborting babies that are prenatally diagnosed, I feel its important to remind people that the lives of those with Down syndrome are valuable and fulfilling.

So what will you do to honor this day? Do you know someone with Down syndrome that you can recognize? Can you put a short message about it on face book or twitter? Can you spend time with that person on that day? Can you  find a local Down syndrome organization to support financially?  If you don't know of one, do a google search with a large city near you and Down syndrome. Whatever it is you choose to do, please try to spread the word that people with Down syndrome have lives worth living and celebrating. 

Dreams, Reality, & the Emotional Collisions

Jaycee loves babies! This is a picture of her holding my newest niece. I have had a love-hate relationship with the idea of babies. That may sound heartless and weird but please keep reading.

After Jaycee was born, I didn't have a typically mothering experience. She was in congestive heart failure. My world revolved around high calorie feedings, medicine, doctors, home health checks, etc. I couldn't nurse her due to a weak suck. I couldn't even produce milk due to stress. I had a paper with signs of worsening heart failure and a phone number to call if I'm concerned that glared at me daily. I learned about post heart surgery care and oxygen tanks. My first year of motherhood was anything but normal.

I had so many emotions going on inside of me during that first year. There are too many to list and explain my reasoning. But I will say being around pregnant women and new moms became very hard for me.

When pregnant women talked about their unborn child, they talked with so much hope. They usually talked of a regular experience and a positive future. There's a big part of me that wants to warn them--"Well, what if things don't go as planned?"  But I never say it. Why should I? Pregnant women deserve to think and feel that way. Statistically speaking, things will probably go well and their baby will be fine. Which leaves me feeling like an outsider....

New babies and moms have been emotionally the hardest thing for me to be around. Over the years, it has gotten easier. In fact, when I first thought about doing this blog entry, I was going to write about how I'm over all these issues. But, being around my new niece has showed me that I am better but not 100% over all the emotions. Having a fairly typically experience with my son did provide me with a new perspective. I had something that I could relate to most people about. There was some "healing" after I had a regular old  pregnancy, delivery, and newborn/infant phase. There was no "diagnosis" talk from a doctor, NICU stay, or worries that he may not survive. It was just typical. Still, there are parts from my experience with Jaycee that were so powerful that they still affect my reactions and emotions today.

Here's some tough scenarios for me. New moms generally mention that they are grateful their baby is healthy. I'm glad their baby is healthy too but it feels like a back handed comment. I guess in a way it's like hearing that no one wants a baby like mine. Similarly, I have been present during awkward prayer requests for pregnancy screening tests that indicate a possible problem. As people prayed for things to be ok, I joined in too but also felt that even in church people don't want a baby like mine. Looking at a newborn is another reminder that things were just different for me. Holding a healthy baby sucking on a pacifier was, at one time, enough to make me cry.

Other times, I will admit that jealousy has been a big emotion I have felt. I am jealous that people can have a baby and go on about their lives. I still haven't been able to work full time since I had Jaycee. I'm fine with that fact now. I love having plenty of time at home and to take care of Jaycee when she's sick. Working full time doesn't even seem like a possibility for me ever. I am also really jealous if new parents can afford a nice house after starting a family. We have a decent house but it was suppose to be our starter one. With so much money going to Jaycee's medical expenses every year, I sometimes get frustrated with our situation.

In seven years, I have grown though. I can now ask questions about people's pregnancy or new baby. Before, I never really pried people for information. I was afraid they would say something that would upset me and I didn't really want to hear about their "perfect" experience. I can hold a baby and appreciate the gift that a parent has been given. I can then leave that new baby & family with my head held high. I have a family too. Maybe it isn't the family that other people dream about and plan for. But, it's the one that I have and love. Jaycee completes our family.