We're 'All Set'

I heard that phrase about 100 times last time we were in Boston and heard it again this morning, so I had to use it.


We'll, Linden's surgery is scheduled. At the same time, I'm scared out of my mind and yet, relieved because this is our little girl's only chance at seeing her first birthday.

I just talked with Sherry from Dr. B in Boston's office. We need to be there on July 15th in order to be at our 7Am outpatient workup on July 16th. That's when they'll do an echo, ekg, and bloodwork. On Friday, July 17th, she'll be having a cardiac catheterization procedure at 7am. She will stay overnight and be discharged on Satuday. Monday July 20th at 6:30 Am we need to be at the hospital for her surgery. She has to stop her baby asprin one week before on July 12 and if she gets sick less than a week before her surgery we need to call them to postpone surgery.

We have been told that this surgery will not be as long (longest 7 hours of my life) or as complex at her AV canal repair last November. It's pretty straightforward from the surgeon's point of view and they seem to have a good idea as to what they'll be doing once she's in there.

Here's a cute picture of Tris and Linnie from the other day. See the redness under Linden's eyes that I was talking about before?


Thanks for checking in on us!

Bianca

~Thought for the day~
All is well. I'm ready for whatever comes today. My yesterdays have prepared me.

To all of you who called/texted/emailed me today

I apologize for not getting back to you. I'm just really sorting through some emotions and it's painful to talk about it right now. I have so much going through my mind. Please forgive me and soon I'll be getting back to you.

Thank you for your patience and your prayers!

Love you,

Bianca

~Thought for the day~
I can't be everywhere today. Nor can I attend to the needs of everybody I meet. I will carefully choose where to give my attention and then offer it totally.

Linden will be having surgery soon.

It looks like Linden will be having her 2nd open heart surgery before her first birthday.

We had a cardiology appointment yesterday and unfortunately it wasn't the best news. I had a bad feeling when Linden was weighed and she had lost around 2 lbs in a month. That's never good. Dr. B. walked in and said the usual "Questions, comments, concerns?" and I answered back that I simply don't like the way Linden is looking nowadays. I mentioned how her eyes are a purplish red underneath and she's kind of sluggish and tired looking, too. I said how Joe and my mom noticed it because they're not around her 24/7 like I am. It was a drastic difference when she was put on Enalapril and Digoxin, too. She just simply isn't herself. After I finished explaining that, Dr. B asked me how old I was. I thought it was a weird question, but I answered "24" and he said "You're a very good mama" and then he handed me his Blackberry and told me to read the email from her cardiologist in Boston (where she had her first surgery, AV Canal Repair). I started reading and saw "It would be in Linden's best interest to schedule a mitral valve repair as soon as possible" and then everything else after that was a blur. There were lots of medical terms that I just didn't understand.
Dr. B was unusually stone-faced while talking to us about the risks of surgery. He said that he has only had two patients, including Linden, in his whole practice who have had this complicated of anatomy, and the other patient did not survive. I felt a huge lump forming in my throat when he said that. He said that in another 6-9 months her heart wouldn't even be good anymore. I felt all of the blood rushing to my feet at that moment. It's like I couldn't believe that we were talking about my baby, my sweet Linden Caroline. It's a risky surgery as the wall behind where the surgery will be taking place is close to the circulatory system. Here is a very good website describing the surgery she will be having.

Dr. B from Boston will be calling me sometime this week to schedule a date.

I'll be posting updates about everything going on with us on this site instead of calling everyone one by one.

Thank you for your support and prayers during this time.

Bianca

~Thought for the day~
Well-being, my own and someone else's, will be fostered by my actions today.

April Rose is not real!

I previously mentioned April Rose here. For months I've been praying, I've gotten my friends and family to pray and for what..... a DOLL? The original blog is now gone as is all of her 'friends' blogs.

Check out this blog that exposed the April Rose scam.

http://gibsontwins.blogspot.com/2009/06/exposed-little-april-rose-scam.html

I love days like this

We had a really great day today! My house is CLEAN. My kids behaved WELL. We sat down tonight and watched the LSU baseball game as a family. (Geaux Tigers!) It was so cute listening to my husband explain what a foul ball is to the girls. They ask so many questions!! They wanted to know every detail and Joe was so good about getting them to understand. Then we all watched him play the drums. There was lots of dancin', head bangin', and extremely shrill screamin'. Haha!


And because I'm suuuuch a procrastinator, I'm just getting around to telling my daughter happy birthday. I'm only 1 week late. Oops.

Happy Birthday my sweet Aislinn Frances!!

You have made my life so wonderful since you came into it. I love you Aisey Pie Pie! I cannot believe that you are 5 years old. It seems like yesterday when I held you in my arms for the first time. I am so blessed to have you in my life!

I love this candid shot of Aislinn with vanilla ice cream on her face taken last weekend.

Wrapped around Daddy's finger

Can you feel the love or what?!?! She was holding his face and kissing him. It was just the sweetest thing. All together now, "Awwwwwwwww!!"

The girl has heart! Part 1!

There are two types of Atrioventricular Canal Defect, partial and complete. The partial form only involves the two upper chambers of the heart and the complete form allows blood to flow freely among all four chambers. They both allow extra blood to flow to the lungs. Linden was diagnosed with complete AV canal defect when I was 20 weeks pregnant. My quad-screen that I had done at 18 weeks came back with an elevated risk for Down Syndrome, so my OB scheduled a Level II ultrasound with a maternal-fetal doctor. I wasn't really worried about it because I knew that test had a chance of being wrong and I was only 23! At that appointment, the doctor was looking anything that could be considered a soft marker for Down Syndrome and that's how he discovered what was wrong with her heart. 50% of people with DS have heart defects. She happened to be one of the 50%. We were extremely worried about the fact that our small baby would need such a huge surgery soon after she was born. It was suggested that I have an amnio to rule out any chromosomal abnormalities, but that came with a risk of miscarriage and we already loved our daughter more than anything so we continued on focusing on finding a team of doctors to care for her after she was born.



After that appointment, I started doing tons of online research about what to expect. Poor weight gain, cyanosis, fatigue, difficulty breathing, and lack of appetite were some of the side effects of her particular defect. I was so sad that I was going to have this sick baby. I pictured a skinny sickly baby. I had dreams where she stopped breathing and turned blue. It was awful. At least I had about 5 more months research this and prepare for her. We ended up finding a wonderful pediatric cardiologist that made me feel so much better about putting my daughter in his care.



Linden was born September 1, 2008 at 37 weeks gestation (5lbs 9.2oz) right in the middle of Hurricane Gustav (I will post my birth story later). She came out very pink and screaming! They whisked her off to the NICU to run tests and to give her an echocardiogram to make sure all was the same with her heart and according to them, it was.

Part 2 will follow soon.