Sunday, October 31, 2010

Special Needs Awareness month

Ahh.... the last day of my favorite month. This year, October took on a new meaning to our family. Not only is it my favorite time of year and the month of our wedding anniversary, but it is also the Special Needs Awareness month- an area that Fiona's diagnosis has brought near and dear to our hearts. And while it gets greatly overshadowed by the more predominate Breast Cancer Awareness, I wanted to make note that this month is also a time to recognize an amazing group of people and families.

At the Buddy Walk earlier this month, I looked around at all the other smiling mothers there, walking for their precious ones blessed with an extra set of chromosomes, and knew at some point each one of them carried a face of pain instead of that joy. At some point, each of them had a doctor tell them, " Your baby has Down Syndrome". And as the pain of that spread through their veins back to their aching hearts, they were most likely each asked the most horrible question. In one form or another, they ask you if you want to keep your baby. A prenatal diagnosis, they ask if you want to continue the pregnancy and an after birth diagnosis, they may inform you that they can find a home if you feel unable to handle the needs of your new baby. I looked at these mothers who now had nothing but pride and joy in their eyes, and had to smile at the strength they had to make, what I considered to be, the right choice. They landed in Holland and made the best of it.

Its not just Down Syndrome this month is about but all special needs-Autism, MS, Spina Bifida, Turners Syndrome, Cerebral Palsy, Deafness, Blindness, Mental Retardation, ADHD, PDD and a hundred other chromosome disorders. If you know someone who has been affected by one of these disorders, send them a little extra love today!

"Welcome to Holland"- by Emily Perl Kingsley http://users.erols.com/jmatts/welcome%20to%20holland.html

Saturday, October 30, 2010

Fighting Fiona

My mommy intuition was right. Fiona is declining and her feeding issues are a major concern. Neither her pediatrician or her local cardiologist were doing anything about it other then telling me "We'll see you in two weeks and see how shes doing" Well, I've heard that twice now, and I was not about to wait two more weeks. She's really struggling to eat.

After laying my foot down, they scheduled her to go see a GI specialist and I quick made some phone calls and squeezed her in with her cardiac specialist at the children's hospital since we were going to be driving all the way up there anyway. I'm not normally aggressive with doctors, but they aren't with Fiona all day and don't see her struggling and fighting to eat for over an hour each feeding.

The cardiologist walked in the room, and looked at my face and just said, " Its time, isn't it?". My eyes weld up with tears. This is what I needed. Just one look at my worried face and he could tell that she is struggling. He listened to her heart and verified that she needs to have her surgery soon. Her heart is starting to fail. Even though it was bad news that I was getting, I felt so much relief knowing that at least actions were being taken this time. We have to come back up on Monday to meet with the heart surgeon to schedule the surgery.

The GI verified my concern for her weight gain. Fiona's doctors at home were so passive about everything and these doctors were much more active. As much as I hate the two hour drive, I'm starting to feel that all of our appointments should be up here. GI referred her to see a dietitian and a speech therapist ( odd, you may think for a new born, but speech therapists help develop the muscles of the mouth which would help her to eat better). If they are not able to help her put on weight, then we will take the more extreme step of a feeding tube. Something that by all means we want to avoid, but her weight takes priority over her development if it comes down to it.

Other then her poor eating, you wouldn't think there was anything wrong with her. Shes smiling and baby talking- I'll make a noise, and then she'll make a noise and we carry on this babble conversation for a couple of minutes before she's over it. She's a squirmer and loves to wiggle on the ground. She curls her little hands into fists and I swear you'll get a black eye if you get too close. They say that her keeping her hands in fists is a down syndrome thing, though I am not sure why, but I like to think its her showing me how tough she is.

 







I'm in heaven when the boys love on their sister. Last night, at bed time, they insisted that their sister lay in the "mi-ell" between them, and Gavin so adoringly hovered over he saying, " I lud her". Fiona just squirms around, turning to look at one then the other, giving them looks of who are you and the occasional smile. Breiden is so protective of her, always kissing her ( "No mouth, mommy, kiss cheek").





The nice thing about having just two kids is you have an arm for each one. The boys sit on each side of me, snuggled in under an arm, resting their sweet heads on my chest. Those moments, it feels like the world slows down and I never want to move. When you add a third into the mix, you run out of arms. I'm looking forward to Fiona being a little stronger so she can sit on my lap and I can cuddle with all three.

Thursday, October 28, 2010

To work, or not to work- like I have the option.

I always thought that I would want to be a stay at home mom. But to my surprise, I couldn't wait to get back to work after I had the boys. It was a little bit of hating seeing our bank account dwindle, a little bit of missing my profession and a little bit of just wanting to get out of the house and have real conversations. Being a hair dresser, my schedule is somewhat flexible and I don't exactly work a 40 hour week. It could be a great profession to be in as a mom, if you are in the right salon.

After having Fiona, I wasn't as enthusiastic about going back to work and each day, I am finding myself dreading it more and more. Something more important then work always comes up. I don't get stressed easily, and can handle most anything thrown at me, but when schedules conflict, it completely stresses me out. And when working and raising a family, schedules are constantly conflicting. Doctors never seem to have appointments available on my days off, so I am left having to cancel and rearrange clients and take time off of work. Then I try to accommodate clients by coming in on my off time, but that leaves me scrambling to find nannies ( and the money to pay them). I strive to be the best stylist for my clients and make enough money for our family, while spending enough time with my family and using a nanny as little as possible. I'm starting to understand the necessity- I stress necessity- of having one parent's job be full time stay-at-home. Cleaning the house, grocery shopping, cooking, paying and managing the bills, keeping the kids entertained and active, and taking them to doctors appointments is a full time job. And Fiona's special needs is a full time job in itself. We are just getting started with her therapists- her medical team is now up to 11 different doctors. Juggling all that on top of a full time, out of the house job is causing too many conflictions.

What happened to the good ol' days when women stayed home? I'm all for equal rights, but I wish it was more common and attainable to be a stay at home mom. Homemaker sounds so appealing. Why have a family if you are going to have someone else raise them? I find myself nodding my head in agreement with the "women should be in the kitchen" jokes. I have been having dreams of spending my days doing arts and crafts, playing at the park with the kids, and cooking homemade meals again- something I used to love to do when I had the time. I'm craving for my husband to work a normal 9-5, be home for dinner every night and have 2 day weekends to be together as a family. I covet that cookie-cutter life.

American society trains women to frown upon this picture- that its degrading to woman. Add some family time at the beach, and its my dream!

Our life is chaotic. I have whole days where I only see my kids to kiss them good morning and tuck them in with a kiss good night. And Charlie and I have exactly one full day and one late evening a week that we see each other more then just in passing. Our opposite schedules are great in cutting down the cost and time we need a nanny, but they also cut down the time we get together. The strain of this comes in waves- at times it works and everything seems to flow, but after a while I start to break down. It's the feeling of never being able to satisfy everyone around me that wears me down. I'm either putting my boss and clients (and our bank account) out or my husband and my kids.

Now, I am saying all of this from a working mom perspective. My stay-at-home friends have their own battles that they deal with and I know that life doesn't always look as perfect as that picture. There are positives and negatives for both working moms and stay-at-home moms. But right now, the positives of staying at home sound so tempting. If only it was a real option.
After all, who wouldn't want to spend all the day with these three :)








My heart (an admiration) goes out to single parents who do it all on their own! My sacrifices are nothing compared to what you give up to make ends meet.

Tuesday, October 26, 2010

Pumpkins and Hospitals- hopfully not a new tradition

 Monday is family day. Well, we try to make it family day when its not taken over by doctors appointments and errands and the occasional Monday we let daddy go golfing instead. But this Monday, was fully family day. I got up with the kids in the morning and spent a few hours playing with the kids while daddy slept in (His alone time for the day) My alone time for the day? A late morning trip to the grocery store. Never did I dream of the day I would look forward to spending an hour by my self at the grocery store. I took my time, planning the meals for the week and looking for the best deals and fully enjoyed every minute of being able to hear my own thoughts without screams and cries interrupting.

Charlie took the boys swimming while Fiona and I relaxed at the house. She had been peacefully sleeping all morning. The boys went right down for their nap with not too much of a fight and Charlie and I took this opportunity to clean the house. ( I had finally fished my project of organizing the closet!) We sat down with a clean, quiet house and for the first time in weeks I felt completely relaxed and at peace.

It was now 4 o'clock and Fiona hadn't woken up for a feeding since noon, so I picked her up, changed her and put her in a cute little Halloween outfit. She only stayed awake for a small feeding and drifted right back to sleep. She sleeps a lot, but by this time of the day she normally has eaten twice as much as she did that day. This wasn't completely unusual for her, but I didn't like it.


The boys woke up and we piled in the car to go pick out our pumpkins. I had a whole evening planned out for us- pumpkin carving and baking cookies. Fiona slept the entire time we were at the park.

















It wasn't as picturesque as it may look. The boys were crabby and it was 90 degrees out.... it may look like fall at the park, but it sure didn't feel like it. And after a melt down because we only had one lollipop that they had to share, we left (stopping to get them each their own lollipop at the gas station- spoiled little boys). After a nice homemade stir fry dinner, I brought out the ghost shaped cookies that I had baked while the boys were sleeping. I hate letting the boys do anything that will make a mess because, well, that's just one more mess that I'll have to clean. But I figured some sugar water icing wouldn't be that bad to clean up. The boys and I decorated the cookies while Charlie attempted to feed Fiona.










My house is looking like a preschool class room (according to my mom) and I love it. Construction paper pumpkins and bats on the walls, kid decorated cookies, and the kid playroom that is in the center of our house is the final touch.

Fiona was barely eating again, and my mommy alarm went off. She didn't have a fever, her breathing was normal (well, normal for her) but something wasn't right. I called the doctor for advice. I thought they would just tell me to monitor her through the night and check in with the pediatrician in the morning if she still wasn't eating. As I waited for them to call me back, we set up the table to carve the pumpkins.







As the boys played in the pumpkin "brains", the nurse called me back, but did she not feel comfortable making a call on what to do considering the medicines she is on. She told me to wait for a call from the doctor. I was feeling torn between making this a fun night with the boys and worrying about Fiona. My gut told me this was nothing serious, but I don't ever want to take anything lightly with her. The nurse called back and said the doctor said to the hospital without hesitation.

Another long night at the E.R. for what turns out to be, just as I felt, nothing serious. No signs of sickness, all her electrolytes and medication levels were normal. I hate false alarms because I don't want doctors to think I'm just another over reacting mom. I felt the need to explain that we were there because a doctor told us to be, that I really did not think this was an emergency situation. And I had to sit there an watch them torture Fiona with IVs and needles just for all her tests to come back normal. The guilt was laying hard on me. Shes not the best eater, and isn't gaining anywhere close to the healthy amount she should be, but she is still gaining. They are now talking about possibly putting her on a feeding tube. I wish there was some way to up the calorie of my breast milk with something other then formula. I am trying to avoid that at all costs, for multiple reasons. But we'll find out our options when we meet with the GI.

In our absence, my amazing husband carved all three pumpkins while entertaining the boys. And, to his true self, did an awesome job. He let the boys pick out what to carve and they picked a doggy and Mickey Mouse. The third pumpkin he carved three little monkeys, for our three little monkeys :)

I'm sure this will not be the last family time interrupted by Fiona's medical needs and am keeping my fingers crossed that her surgery doesn't fall around her first Thanksgiving or Christmas. But if it does, we'll just have to make the best of it... Ill just have to get a little Christmas tree (fake because they don't allow plants in the CVICU) and string lights in her hospital room.
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