Monday, May 31, 2010

Memorial Day Photo Shoot and the Heat







First of all, I am so thankful for all of the servicemen and women who have given their lives and time for us.






Today we did the photoshoot for Mended Little Hearts calendar. It was at one of the beautiful Spanish missions. It was SUPER humid which made it a little tough to breathe. I can't wait to see how the pictures came out. Gracie took a picture with another little girl who had the same surgery that Gracie is about to have. She is truly a miracle child because something went wrong during the surgery and basically her parents were told that she wasn't going to make it but less than a year later, she is walking, talking and growing. She's a beautiful little girl. If I am able, I will link the blog of the photographer to my blog so you can see the pictures.






The heat is tough on Gracie. It makes her oxygen levels drop drastically. I wish our cardio had told us that but it was a Mended Little Hearts mom who gave me the term, "heat sensitive" and that a lot of the kiddos have that. It can be scary when she drops into the 60s quite fast. I'm lucky that the xopenex nebulizer helps. I'm now hoping we'll have the surgery so that she has a better o2 level and that we won't be so struggling in the heat and humidity.

Wednesday, May 26, 2010

Updated Info

So, the nurse who schedules all of the heart stuff at the hospital calls me. I'm in my car at the parking lot of Office Depot. She says, "Hi, I'm calling to schedule Grace's fontan, I mean cath and sedated echo." Yikes...that's a freudian slip. So she gives me the date of June the 15th and tells me that we might have to stay overnight and then her case will be presented the following week to the surgeons and then surgery will be scheduled. So, I said...it's a pretty good chance she's gonna have surgery? There's a pause and then she says probably so. Basically these tests are the precursor. The surgery will happen 2 to 3 weeks after...just all depends on the schedule and both surgeons have to be around because her case is pretty complex, her words, not mine. So, again, I started feeling a little bit woozy and emotional because yet again I'm not emotionally prepared. I know the positives that she's younger, she'll forget it, she'll heal faster, she'll get it done faster...I know there's a lot of good things about the surgery...I just hate that she's going to have to have another traumatic event happen to her in less than a year. The worse thing...the daycare called and said her sats were really low after playing and just a bit a go they were again in the low 70s which isn't a great thing right now. She still has a nasty cough we can't kick. So, in my emotional mind I'm thinking she's really getting bad again which scares the heck out of me which makes me think let's get this thing done NOW!

On a brighter note, my girl is going to get to be in the front row of the Yo Gabba Gabba Live Tour in December! She is so in love with that show, especially Muno and Biz Marky. She wears her Muno shirt to bed and when she takes it off, she gives him a kiss and tells him bye-bye. If she could have any wish right now, it would probably be to see Muno and or Biz . We have like 4 shirts, the sheets, and all of the DVDs. It is what keeps her calm and we take the portable DVD player and the DVDs everywhere. I'll be bringing them to the hospital. I am hoping that the Gabba bunch will be the calming medicine when we go. I wish I could somehow contact them and tell them thank you for helping my girl when she's having a tough time. They make her day.

Tuesday, May 25, 2010

Big Shock
















Today started out a great day. My school got "Recognized" status and my principal said we could paint our office. Then I get a phone call from Gracie's physical therapist. She had written a letter to the pedi cardiologist about Gracie's o2 sats falling during physical stuff. We have been keeping a log since that started two weeks ago. Anyways, to make a long story short, the pedi cardiologist is very concerned and it looks like we might be having part 2 of open heart surgery this summer and not next summer as planned. We have to get a sedated echo and then they are going to do the cath lab. Yes, I am totally freaked out and I feel as if the rug has been pulled out from underneath me. I was preparing myself for summer of hell for next summer, not this summer. I truly had hoped that she would get a little break but it doesn't look like it. I'm scared because I know this next surgery is a lot tougher and we're going to be hospitalized most likely a longer time than last (we were there 9 long days!) I have mixed emotions: get it over with so she'll feel better and her sats will be in the 90s; give her a year to not have so much trauma...she's had a lot in this one year. In 13 days, we will have been a family for a year! I can't believe it. We took pictures this weekend and I will post them from work because it has the CD capability that my netbook doesn't have (and frankly I don't want to turn on the other computer because it takes forever). On Monday, we will be doing a photo shoot for Mended Little Hearts calendar (ironic huh?) I will be talking to some of the moms whose children went through the surgery that Gracie will have to go through. I guess I'm just scared and overwhelmed and surprised. Life is like that and you have to take it as it comes and pray a lot. I do have faith and I know that there is a reason for everything. The good thing is that if we do have surgery, the timing is great...I'm off of work in 15 days.

Sunday, May 09, 2010

Happy Mother's Day




It was my first Mother's Day with Gracie. It was a great morning following by bratasaurus Grace in the afternoon because she is refused to take a nap. Discipline with her is a whole different ball game that I have ever played before. All of the things that worked with the other children I have ever cared for don't really work with her. She is one of the most tencious persons I have ever met. I admire it but yet it is a big ol burr in my saddlebag and quite frankly it exhausts me. I know that it is her tenacity that kept her alive so long. She really shouldn't have survived so long without medical intervention. So, I always have to remember and respect the survivor instinct she has in her and try to remember that when dealing with her when she is being incredibly stubborn. I do know that despite everything, she is the best thing ever and I love her with all of my heart. I'm not looking forward to middle school when that tenacious streak really shows up in an ugly way but hopefully by then I will be ready for it...NOT




But, you know that's all part of motherhood. I have learned you sleep differently (and don't sleep as well); you watch all the TV shows your kids do (and learn to love them like Yo Gabba Gabb); you miss spending time with your friends and going out to the movie theaters but when you watch them sleep the sight makes you forget all that stuff; you go to the bathroom, take a shower with the door open or with your child either opening the shower curtain or standing next to you in the bathroom (sometimes the bathroom is the only time you have to yourself); you always feed your child first and your child starts wearing the cute outfits instead of you; you hum and sing all of the songs from the Sesame Street CD or the TV show your child loves (right now ours is Yo Gabba Gabba and I'm always singing "Hold Still") at work driving your poor co-workers nuts (or in my case, poor Shannon is now singing them and she doesn't watch the show); you find yourself falling asleep right after your child goes to sleep or sometimes before if you are super sleepy; when they go to sleep, you know you should too but you try to get caught up on your own stuff, like I should be going to sleep instead of blogging. But, in the end of it all, it makes you a stronger person and in the words of Jerry Maguire, my Gracie completes me.

Sunday, May 02, 2010

Botanical Gardens