The Silver Lining: Even with His Steadfast Love

Ok, so I lied (in rare form). On an earlier post, I mentioned how I have been spending my time gearing up for ISabela's surgery. On that long list of things to do, I saw all medical specialists needed to make sure that my body is running in tip top shape so that I can be fully equipped to handle what is to come. I also shared how one of my Dr's. diagnosed me as "mildly depressed". Well, there was no "mildly" uttered by the doctor. That was all me. It was all me trying to self-diagnose myself and pacify everyone else by not having to worry about me. I didn't want to believe it. But, the headaches, the fatigue, the absent-mindedness, difficulty sleeping, the nightmares, the lack of desire to do normal things that make me happy like running, reading, shopping, organizing and eating out (to name a few). Anyhow, I have been better lately. I have been able to avoid medicating myself by facing this imbalance head-on. My daughter is having open-heart surgery to reroute her blood flow that mixes b/c of her single ventricle heart, having a difficult mitral valve repair and needs a pacemaker placed. AND I have been told, no more trampolines, no bouncy inflatables at b-day parties. I have been MAD--for her.

I thought it would be easier this time around considering it's the 3rd open heart surgery, having had 3 major surgeries under my belt (one urgent pyloric atresia surgery included) in which I was warned at two of them that she would likely not survive. But, being a "seasoned" mother in this world of heart disease means nothing. Absolutely nothing.

So, I sit here, probably sharing more than most want to know, but it is all pure and real. I have made strides over the weekend to slither out of my hole, mostly because a friend tried to play "intervention" by getting an old fellow hospital friend to get in touch with me. That mother's daughter was born exactly a week after Isabela, with the same Heterotaxy Syndrome. Just talking with her helped me feel less alone. Seeing through a fellow club member that what I am feeling is valid and visited before by others makes it feel better somehow. Libby, her daughter, has had a really tough fight, harder than Isabela's. She is still struggling with potty training, still needs her feeding tube and is struggling with a possibility of a learning disability. But, amazingly, Libby is feeling fabulous and is extremely happy with her life. The Mother? An inspiration to me, a war hero in my book. After a 2 hour phone conversation last night, I got out of bed this morning famished, ready to hit the track and tore Isabela's closet to pieces to organize it better. I felt like Me again. I have a feeling that tomorrow will be great, too!

My intention with my open-ness is to support the reality that I am not an indestructible super-woman. I am one who breaks into pieces....and that's ok. I will add this, I have not only been "carried " through this, I have felt it. Otherwise, I know I would have allowed myself to spiral downward searching for the hope that I have desperately needed.

Here's what I sent to family and friends a month ago, the last time, before tonight, that I wrote anything relating to her surgery.

Friends and Family,

Yesterday we met with Dr. Frazier, Isabela's world-renowned heart surgeon. It was a day of culmination of all the diagnostic tests up to date. I can't say it was easy. I will give you the condensed version of a 1.5 hour consultation.

HE started with Good News: Her heart is in the most optimal state given what she started out with. Does not mean she has the best heart compared to to other kids going through this surgery, it means she has done better than they ever expected. Also, She is healthy right now, going in strong. Not the most ideal weight, but he doesn't want to wait for 3 more kilos just for a longer conduit. He agreed that it's obvious Isabela will be a "Petite Lady". He further added that she is doing so well, she could hold off several years before needing to have this surgery. However, going in strong increases her chances of survival. (I am sure that 4 years ago, he never thought we would be sitting on that couch again with more intervention)

On to the Bad News:

* She has a mitral valve that leaks "a lot". It is a serious issue. It must be repaired. The negative factor in this is that if he is unsuccessful in repairing it, she would require an artificial valve replacement. There is a poor prognosis associated with that. So, as you can imagine, this issue makes her surgery more difficult.

* Also, she requires a pacemaker for irregular heart rhythms. It's a good thing to do this while her chest is open, and avoid going into her chest again down the line and putting her at risk. It's also a great thing to have to protect her, to jump start her heart. However, this means more upkeep and more medical appointments for Isabela. (even more important to have great health insurance).

* Dr. Frazier warned us that her surgery is more complex than the typical "Fontan Surgery". <http://en.wikipedia.org/wiki/Fontan_procedure> Her surgery will be at least 6-8 hours long. He also added that she will likely have a harder recovery and a longer one. He told us to prepare for the worst. He said typical recovery time from day of surgery until the end is about 2 months, but she is likely to not be typical.Her chance of survival for this surgery is 95 %! When I asked how long she would live, he had no idea(of course), but did tell us that he doesn't know of a heart like Isabela's in a person of our age (sad). BUT, he did reassure us that when he was in med school, they didn't even know how to approach Isabela's heart. So, medical advancements are definitely the KEY to getting ISabela to a long life, a quality one.

So, I have been a wreck, probably not myself, but this is what I am going to hold on to in order to be very optimistic through the next several months... Valerie and Christina, if you remember were her two primary nurses in the CV-ICU when she was a baby, both told me last night that Dr. Frazier is "the" man to repair valves. That is a huge relief! Also, Daniela offered to join us in that consult, and I was so glad she was there not only for moral support, but because she has worked with Dr. Frazier professionally and knows the protocol. That helped in a HUGE way because she was able to interpret his mode of delivery and the fact that he did not warn us of the possibility of more awful consequences. She felt great after the meeting. That means that although his job is to tell us the worst possible outcomes, he was feeling pretty good about it. Yay!!In the end, I asked Dr. Frazier to be the one to operate on her ( I would not take anyone else!). He said that Heather, her cardiologist, had asked him, too. He accepted. Dr. Frazier told us that he will not operate on anyone if he didn't think he could save them. Period.

Also, According to him, Texas Childrens Hospital has a 90% survival rate for this surgery, for this type of heart, whereas across the world, the number plummets to 20% chance of survival. You have no idea how incredibly fortunate Sammy and I are to live in Houston.

Thank you all for being part of her care team, protecting her with not coming around if you or any of the kids are sick. We noticed and we are eternally grateful!If you ever have Q.s, don't ever hesitate to ask. Obviously, we are pretty open about it. We are going to be updating her Carepage more frequently now. For now, we have to be VERY CAREFUL in protecting her from ill people. If she gets the smallest bug, after March 14, surgery is post-poned.