31 August

Well, not much new today. We met with the primary surgeon, Dr. Peter Pastuszko, and he reviewed everything again with us. Today they are trying again to insert a PICC line to ensure a good avenue for meds and fluids. The MRI from yesterday revealved nothing out of the ordinary. There are no tests scheduled for today, just to get ready for surgery tomorrow.

It has been very nice having Karen and Sue with us this past week. Caroline has been having lots of fun taking walks, playing, and spending time with Mee-Maw and Aunt Karen.

Today, we're going to spend as much time as possible with Audrey before her big day.

Pic of the Day - 30 Aug

30 August

Sorry for not updating last night. There is a lot of info to digest.

Audrey's surgery is scheduled for 7 am Monday morning. We'll need to be here at 5:45 to sign releases and see her before she gets prepped for surgery. The operation itself will take 7 to 8 hours and will be accomplished by two cardiac surgeons and who knows how many support personnel and otherwise. After she returns from surgery, she will have many lines and she will be intubated (on a breathing machine). Her chest will be sealed with a piece of plastic, and after 24-48 hours, her chest will be closed. This will allow her chest to return to normal size after the swelling subsides. Naturally, she will be in an "aquarium" of sorts to protect her from everyone else. By day 3 or 4 most of the lines and tubes will be out and we should be able to hold her and feed her. She is expected to spend at least two weeks in the NICU before she is released. I can't wait for that day!

We also found out that her heart valves are not formed correctly. Her pulmonary valve is bi-cuspid instead of tri-cuspid and her aortic valve has some thickening. The doctors are going to look at the valves while she is open, but they will most likely not be able to do anything now. The valves will be addressed years down the road if they become problematic. We hope they are good for at least 30 years. Who knows what types of surgeries they will have by then!

As far as good news goes, her scar will not grow with her. I didn't know much about wounds or wound care, but the doctors say the scar will remain mostly infant sized and will hopefully fade over the years. I hope it will be an interesting point for her someday to look at that scar and say that is where she had open heart surgery!

As far as her future activities goes, she will have a "normal" childhood. She will be able to run, play, rake rocks, and so forth. Her activity level will mostly depend on how well her valves are working, so she may not be able to participate in sports where she won't have the ability to rest whenever she needs.

Some may wonder if the heart problems are contributed to one thing or another... well, unfortunately, there is no single factor or combination that predisposes our children to heart issues, it's just random.

If you have any questions, you can post them or email us. Miss you all!

29 August

Hooray! Surgery is scheduled for Monday!

Linda and Karen are down with Audrey today, and Sue and I are home with Caroline. Caroline was getting "needy" plus I need to do some MAN things around the house. You can expect a better update and photo to be posted when Linda and Karen arrive back home.

Tons of emails and notes from people all over. What a great group of friends and family! Thanks to all!

I'll update again tonight (~9 pm pacific).

Pic of the Day - 28 Aug

28 August

Nothing new today really. Still waiting on the million dollar question of when the surgery will take place.

The Picture of the Day shows Audrey under her "sun lamp". As is the case in some newborns, she has neonatal jaundice ( http://en.wikipedia.org/wiki/Neonatal_jaundice ), or a yellowing of the skin due to an excess of bilirubin in her system. The light helps her metabolize the bilirubin, and it is wasted into her poo. No big deal there at all. The yellowing and light treatment are not related to her cardiac problems. Check out her cool shades that protect her eyes from the bright light.

That's about it. More info when it arrives.

Pic of the Day

Background info

Disclaimer: I'm a pilot, not a doctor, so be prepared for a 5 year old's interpretation of where baby's come from...

Greetings!

Thank you for all your concern during this difficult time. It really is wonderful to have so many people concerned about us. I'll be using this blog to keep everyone as up to date as possible on the happenings here in San Diego.

Currently, we are waiting on the surgical team to decide when they will conduct the cardiac surgery. Right now, it seems the surgery will take place sometime next week. As you can imagine, we are fairly anxious to proceed forward. It will take a few weeks for her to recover, and she will spend her entire recovery here in Childrens' ICU.

Today she moved to a new medication that will adjust how much blood is moved around her body.

Ok, so here is the background information if you're just catching up now.

Audrey Rose Fair was born on Sunday, August 24th at 3:51 pm. She weighed 5 lbs and 2 oz, a low birth-weight. Her umbilical cord was wrapped around her neck, and she was born a rich, royal purple color. After what seemed like an eternity, she took her first breath and pinked up.
Later that night, Linda noticed Audrey was turning a darker shade when she fed. In the morning a nurse went to bathe Audrey, and when Audrey cried, she turned blue and purple. She was immediately taken to the Neo-natal Intensive Care Unit (NICU) at Tri-City. After a short period, the decision was made that she needed advanced care, and she was transported to the NICU at Children's Hospital in San Diego.
After some examinations, it was determined that she has a congenital heart defect called Transposition of the Great Arteries. Basically this means that the in and out piping of her heart formed backwards, creating two separate blood transportation systems. On one side, blood travels from the heart to the lungs and back to the heart, and on the other, blood travels from the heart to the body and back to the heart, without going through the oxygen transfer process in the lungs. Currently, she has a sufficient transfer of oxygenated blood from one loop to the other through a hole in her heart, so she is not in any immediate danger. However, she will require open heart surgery within her first 3 weeks to detach and reattach her vessels to the correct spots. Of course, Linda has a much more thorough understanding of all this, but I hope this is clear enough.

It is unclear what the long term prognosis will be. The surgery will fix the emergent issues, but as far as 30+ years down the road, we don't know. This is mostly due to emerging surgery techniques. There is no data for the types of surgery they conduct now because it is so new. Problems associated with this surgery from 30 years ago won't really apply because of the new methods of surgery.

We are fortunate to know numerous medical professionals who are cardiac specialists from across the US. All agree that Children's is a great hospital and the NICU cardiac surgeons are among the best in the US. Not to diminish the severity of Audrey's condition, but the surgery she requires is not uncommon here. In fact, there are two children in front of Audrey to have the procedure.

Anyway, I want to get this posted. Thanks again for all your concern, and I'll post when I can.

Today is Andrew's Birthday. Happy Birthday Andrew!!! Wish we could all be together.