A couple of updates!

Hello! I thought I would put a quick post up in order to update everyone what is happening here. It is amazing how "boring" life has become in the past week! I love it! Things are quickly settling down and returning to normal and it feels fantastic.

First, blood donation update! We switched the date to Tuesday, November 2nd. Missy and I, as well as my mom and Kate are going to donate and then go out to dinner. We moved the date up so we will all be able to donate at a blood drive on January 5th. The blood drive is in memory of the grandsons of a dear friend of ours (and my parents). It is going to be held at Ten Chimneys in Genesee Depot. Mark your calendars and I will post more information as I receive it. Also, there are a few appointments left for the evening of November 2nd at the Waukesha donation center.

Second, a Charlotte update. She continues to do really well. Yesterday, she starting rolling over again (she was rolling before surgery, but hadn't attempted it since) which makes us think she is feeling pretty dang good. She doesn't seem to be in any pain, and has been super happy. She is back to her normal schedule--barely sleeping at all during the day, but putting in some good stretches at night. We had a pediatrician appointment today and she received her 4 month shots. Her weight is about the same as it was the day before surgery, which is to be expected. She is in the 70 percentile for height and 13 percentile for weight; she seems to be following Katherine's growth curve! The pediatrician isn't concerned about her weight as she is eating really well. I put a call into her PT today to set up her next appointment. I also scheduled an appointment with the Developmental follow-up program through the Herma Heart Center. Basically, we go every 6 months for the first 3 years and she is evaluated by a Developmental pediatrician, a PT, an OT, and a ST to see if she is on track and receiving the services she needs. They only work with kids that have had cardiac surgeries and have a lot of experiences with babies with Down syndrome.

Mike went back to work today, so I am back to my crazy pick-up/drop-off schedule with the kids for preschool. I have another week off of tutoring and watching Sam; trying to use the extra time to catch up on things around the house.

We are looking forward to Halloween this weekend. Katherine is going to be Princess Peach (she chose this because her "best friend Alec" is going to be Mario), Will a fireman, and wait until you see the super cute little outfit Missy made me buy for Charlotte! I'll be sure to post pictures.

Blood Donation "date"

Donating blood is so important, and unfortunately not many people (myself included) donate on a regular basis. I have vowed to change that about myself, and hopefully take a few people with me. Missy and I want to donate blood in the next few weeks and make a "date" of it. We plan on leaving the kids home with their dads, donating, and then going to lunch. We are thinking Saturday, November 13th. Anyone interested in joining us? Claim Jumpers for lunch? Morning without kids...sounds relaxing!

If you can't join us that day, I urge you to pick another. It is an easy way to help others and doesn't cost anything. Here is the blood center link, you can make appointments right online:
http://www.bcw.edu/bcw/

No more cardiologist until April!

We had Charlotte's post-op cardiologist visit this morning. Everything looks pretty good. Her chest x-ray was clear, she has just a slight murmer (which will most likely always be there), and she no longer needs to take any cardiac meds. The only concerning thing is some very minor leakage from the two new valves. We knew that this was a possibility and is pretty common. They will keep an eye on it, and if they leakage gets worse she may have to go on blood pressure medication in the future for maintence. There is also a very real possiblity that she may need further valve repairs and/or replacement later in life, but we are hoping that isn't until at least her teen years. The cardiologist said that there are kids that have minor leakage after surgery and it never gets worse and no further surgery is necessary. It is just a wait and see.

We got back in April for another ECHO and EKG. We have to be pretty careful that she doesn't get sick during the next 6 weeks, but other than that she really doesn't have any restrictions. Yay!!

It is all about perspective.

The afternoon after Charlotte was born, a nurse came to our room after taking Charlotte's blood pressure and asked us if we had noticed that two of her fingers and two of her toes were fused together. At the time, I was really upset, my perfect little girl had fused fingers and toes? The thought of her going through surgery to separate them was devastating to me. Surgery? How scary! I cried when Katherine had her 2 month shots five years ago, how could I handle my baby going through surgery?

A couple hours later, the pediatrician came to tell us that she thought Charlotte had Down syndrome. Suddenly fused fingers seemed so minor. It is all about perspective.

After being mad at the world and crying my eyes out for three days after the Down syndrome diagnosis, we went for an ECHO. When the cardiologist told us that Charlotte had heart disease and would need surgery during her first year of life, the Down syndrome diagnosis all of sudden seemed minor. It is all about perspective.

Walking through the CICU last week, I saw babies who had been there for months, kids Katherine's age waiting for heart transplants, and newborns who have yet to be held by their mothers because they are so medically fragile. Suddenly, Charlotte's heart defect seemed minor. My daughter's heart had been repaired, she didn't need a transplant. Charlotte went into surgery healthy, and spent a mere five days in the hospital. It is all about perspective.

So many people have told me how strong I have been the past four months. I don't see it that way, I don't feel strong. I did what I had to for Charlotte, and for Katherine and Will. No one asked me if I wanted to deal with all these extra challenges that Charlotte has brought. Do you know what has made it easier? Perspective. There is always some one out there that has it worse off than you, and when you realize that, life doesn't seem quite so bad.

In fact, life seems pretty dang good right now. I can't describe the sense of relief I feel every time I look at my daughter. I know that challenges lie ahead for Charlotte, and we will take them one day at a time.

I'm emotionally beat.

I had really good intentions. I had a topic that I wanted to blog about in my head all day. But, it's going to have to wait until tomorrow. We have had a great first day home today. Katherine had preschool, Will and Mike did some yard work, and I spend a lot of time cuddling/nursing Charlotte and thinking about how grateful I am. We also all (well, except for my eldest) took naps and tried to catch up a bit.

Charlotte is doing well. She is a bit sore, and we have been giving her tylonel to help with the pain. Certain positions seem to bother her more than others. She is eating well, and enjoying the craziness of her silbings. Cooing a lot and offering us a smile or two here and there. Katherine helped me give her little sister a sponge bath today; both my girls seemed to enjoy this, and Charlotte's hair is a bit less crazy now.

As the five of us laid in Will's bed tonight reading bedtime stories (good thing he has a queen size bed!) I couldn't help but get a little teary. I have three, amazing and now healthy children. I have a wonderful husband that has been fantastic through all of this. How did I get so lucky? We are enjoying life over here, that is for sure.

To answer the question of a few today, no the blog is not over just because surgery is. Those of you who know me, know that I always have a lot to say, and Charlotte's journey in this world has just begun. Stay tuned.

We are going home!!

Thank you for all the thoughts and prayers! They worked!!! After five days, we are out of here!

Thank you!

Thank you so much for all the comments, emails, facebook messages, cards, etc. It has helped me a ton to know so many people care! I am sorry I haven't responded to all of you individually, but know I have appreciated each and every one of them!

Tomorrow we have a 7AM ECHO and EKG. After that we have to do a carseat test (basically means that Charlotte has to sit in her carseat for as long as it takes us to get home and they watch the monitors to make sure her stats don't drop) and take an infant cpr test with the nurse. Then, maybe...just maybe we could consider discharge? I am hoping either tomorrow or Tuesday. The nurse told me tonight that no one ever talks about discharge the night before because it jinxes it! They obviously have to be really careful with patients who have had cardiac surgery because even though Charlotte looks fantastic she did just have major surgery on her heart only five days ago.

I'll keep you updated! Thanks again everyone, you have made this so much easier for us!