As we embark on the next step of our journey with Sydney, and her special heart, a heaviness fills me. I wish, I could bear this pain for her...but, I can't. I wish, I could take her upcoming fears away from her...but,I can't. I wish, I could take her place...but, I can't. I feel so powerless in all of this. Only God knows what her path will be. So, I pray...I pray for strength, I pray for her life, I pray for her to come home soon...home with us. I believe, she is a special angel....the "sweetest of angels"

Cath Results

All went well during Sydney's cath today and she is currently doing great in recovery. The pressures in her heart were low, which is great news for her Fontan on October 5. There were a few small collateral vessels (the heart's attempt to reroute the blood flow) that they discovered, but no intervention was needed at this point. The doctor performing the cath thinks that they are too small for concern, but will review her findings with Dr. Peeler before the surgery. All pre-op paperwork was completed, so we shouldn't need to come back up until the day of surgery. Sydney is, as always, a trooper, despite the fact that she looks a little dopey. For you heart parents, the plan is for an extra-cardiac conduit with a fenestration, which will either close itself or will be closed later. Estimated length of stay is two to eight weeks, depending on the fluid build up in her lungs. We are hanging out until five thirty or so, will then stop by radiology for some x-rays on our way out; hoping to be home by bed time tonight.

As a side note, when Sydney started waking up, she immediately asked for Mama; but as soon as she got in the recovery room, she cried out for Aubrey. She loves her big sister so much!

Thanks for keeping us in your prayers.

Hugs, Christy

Heart cath and pre-op

We leave to go to UVA in the morning for Sydney's heart cath. This cath is being done to look at the heart, measure pressures, get a better picture of it's function... so a plan can be better made for her surgery in Oct. It will be a long and tiring day. I am grateful that Steve and Josie will be there with me and Steve's parents can watch Aubrey.

I have been really struggling on how to tell Sydney what is going on with her. I think I will tell her tomorrow, that we are going to the hospital to look at her "boo boo". Maybe tell her that she will have a little nap while they look? I just don't know what to say to her. She is almost 3....but she is only just 3! I need to find a way that is most age appropriate to tell her what is going on.

We are still working on the plan for what we are doing with Aubrey. I am grateful for all of the wonderful offers from so many of you. I will try to make her plan after the cath. My brain just cannot handle anymore. I, for a few days, just shut down from all of the information and anxiety. I am doing a little better...but it comes and goes.

I will keep you all posted as I get more information from UVA.

Love to all, Christy

Aubrey's First Day of Kindergarten

My baby is growing up......


I need to jump back to Sept 8, 2009. I have been trying to play a little catch up on my Blogging. Aubrey began a Kindergarten today. She has been so excited for a long time....and ready! She really believed, she should have been able to ride the bus last year. If she had anything to do with it she would have.

The day before school started, Aubrey got really anxious and was ugly to her friend. This was so out of character for her. Once she had her time out.....we talked. She just cried. Aubrey said she was nervous and scared about going to school tomorrow. After a good cry (we all need these every so often), and the realization she was not the only one scared, she found her happy place.

The next morning she jumped out of bed, dressed before I had any say in it, and was trying to pack her lunch! Aubrey was ready, happy and excited. Her smile could not have been any bigger.....frankly, I don't know how her cheeks didn't hurt. When the bus came, she didn't even look back. I had to call to her to turn around and let me say goodbye and take a picture.

It feels like just yesterday she was entered into this world, with a big bang. A huge, 9 pound, 11 ounce , 21 inch long baby. I am so proud of how she is growing up, but it is hard to let go of my baby.

It feels like just yesterday she was just a baby........

Blood donations and fundraising efforts

Many of you have asked me if any fundraising efforts are in the works and if Virginia Blood Svs needs help with blood donations. The answer is yes to both. If you think you can help or can spread the word...that would be wonderful. Below is all the information:

1)Virginia Honda/Yamaha has scheduled a Motorcycle Ride called a poker run--Oct 17, 2009. The proceeds from this ride will go towards Sydney's medical expenses. They are also holding a drawing that day for a 2009 Yamaha 550 Grizzly ATV. Each ticket cost $5 and the proceeds will benefit two critically ill children--my Sydney (TA) and Taylor (SMA). For more info on this fundraiser, please contact Dan Wilkins Jr at 804-560-0300 or check out their website at: http://www.virginiahondayamaha.com.

2) Virginia Blood Services is working with us again, and waving the expenses, so we can use family donated blood for her surgery. If you are able and eligible to donate blood, please do so, in Syd's honor. So many kids like Syd need blood for surgeries, and VBS is always in need. She is set up with a "fund code", which is 6670, if you would like to donate in her honor. To make an appointment, please call:(804) 359-5100.

I have been working out a lot of details today, and I am trying to come to terms with all of this. I am feeling a little numb at times, teary at other times, and down right anxious at other times. It did not help with Syd ended up with "nurse maids elbow" today. It was a freak thing, but scared both of us to death. I spent a lot of time today, just holding her. Not because she had to be held, but because I needed to hold her.

Christy

The plan

It has been a big and very busy day. Sydney visited the cardio doc (Dr Albrecht).. Her regular doc (Falterman) was on vacation. Dr A checked Sydney over. She is in normal sinus rhythm, her sats were 88%---which was weird. I have not seem her sats that high in over a year. Her heart looked good, and she is a good candidate for the Fontan. He was not sure whether Dr Peeler would do a Lateral tunnel or a Extracardiac conduit (sp?), but I guess I will find out more once the heart cath is done.

I am really tired from today from all of this so I am going to make this a post short. Here is the plan as of today:
--Sept 23--Heart Cath/some post-op
--Oct 1---Finish post-op if not able to complete at the end of cath
--Oct 5--Heart surgery at UVA with Dr Peeler

No school for Syd
-----Also with all of this, I have to keep Sydney out of pre-school. Her first day was today, but we were at the cardio doc's office instead. Syd was so upset about this. She has been following her big sis to the bus stop with her "Door Door pack bag" (Dora back pack) every day...ready to go to "her cool".

No family day home for a few weeks
-----I also had to call and make arrangement with all of the families with kids the I watch out of my house. Thanks to my friends willing to help, and thanks to the families willing to be flexible during this time. The Davishouse is officially on lock down. Germs, germs, go away, come again....many weeks from today!

We are feeling a little shocked by the rapidness of all of this, but this is what needs to be done. Thanks to Dr Peeler, who I can go on and on about how great and wonderful he is, is making sure things are being taken care of. She is old enough now to have this done, so here we go. Poor Syd. She does not know what is about to happen. Right now we have just been talking about her "boo boo", and she looks at her scar.

Please keep my baby in your prayers. I believe in the power of prayer, and this will give her strength to pull through this.

Many hugs and thanks for the wonderful support.

Christy

It's always something....

I am feeling really anxious today. Sydney needs to have a 3rd surgery to finish the process in which they had started. After that, we hope that her "correction" will be complete (but her journey will be far from over). We had thought at one point she might have her next surgery this summer, but Sydney was doing so well that it was postponed. We were told at that time that Sydney's next next surgery (the Fontan) would be in Dec 2009(near her 3rd birthday) or if she was stable hold off until April 2010.

Well, thinking we had some kind of plan, I settled on that. I became increasingly more anxious as Syd's next Cardio appointment approached (Oct 8). Well, yesterday, our plan changed. I lost it. Dr Peeler, Sydney surgeon at UVa, e-mailed me to let me know he was leaving UVA and is going to Levine Children's Hospital in Charlotte, NC. His last day is Oct 15. Now, I am in panic mode. Sydney can only have Dr Peeler take care of her. Changing her surgeon in the middle of her surgeries is like changing an architect in the middle of a building. You just cannot do it. Dr P has someone great to replace him, but for Syd to have the best outcome is the let the original surgeon finish what he started.

Yesterday, I spoke with Dr Peeler. He is going to see what they can work out. Sydney has been growing well, and developing well, but I have been noticing more bluish episodes, sats slowly lowering, and Sydney getting out of breath easily.

In my ideal, I would have Syd's surgery done asap...in the next 2 weeks. If she has her surgery too close to his leaving, and if Sydney needs post-op care, what if he is not there. This would be the worst situation ever! I can't have that happen! But if, Syd is medically ready (which I think she is),then she needs to been evaluated asap. Dr Peeler agreed. He will call her local Cardio doc on Monday (and so will I). If the surgery cannot be done now, then we might be off to NC in the near future. I am really concerned about the our insurance covering the stay there. I am not sure if they are in-network. This will be a huge issue. If you remember, our insurance gave us HUGE problems before Sydney was born. Getting them to cover UVA hospital stay, even when there were no other options in Va.

I have talked to UVA, Dr Peeler, and have left a message (voice and e-mail) for Dr Faltermen (her local cario doc) this weekend. Tomorrow, we will see what happens.

Please pray.
Christy

Just for fun....