This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Saturday, January 22, 2011

Jakey's Blankies

This is a picture of a "girl" version of Jakey's Blankies.

This is Scarlett holding her ultra soft minky "Jakey Blankie".

This is another picture of the blaket. One side has soft animal print, and the other side has plush pink flowers.

Jake Alan Dennison 1/21/2009 - 2/9/2011
Born with Hypoplastic Left Heart Syndrome [HLHS] 
(the most severe Congenital Heart Defect)

Yesterday was the 2 year anniversary of my heartmom friend Liz's son Jake's birthday. He was born January 21, 2009 (one month before Scarlett). He was also born with a severe congenital heart defect (just like Scarlett). Jake fought for his life for 19 days and lost his battle with HLHS on February 9, 2009  [eight days before Scarlett was born].

In Jake's honor and memory, Liz and her family started a heartfelt campaign to leave a legacy for Jake. She and her legion of supporters began to create and sew soft blankets to donate to the babies in the PCTICU of St. Joseph's Hospital in Phoenix suffering from congenital heart defects and undergoing open heart surgery (sometimes multiple heart surgeries).

Please, if you have a few extra dollars to donate to Liz in honor of Jake for Jakey's Blankies, you can connect to Liz's blog here:  you can also click on "Angel Jake" on the right side of this blog under Heart Friends. Or click on Jake's link under his picture above this paragraph. The campaign only for 19 days.... The 19 days of Jake's life (January 21 - February 9).

Also if you are another heartmom whose CHD baby was the recipient of a Jakey Blankey, please post a picture of your heartbaby with the blanket and post it on your blog and also on facebook. just like I did. Thank you. : )

Tuesday, January 18, 2011

CT Scan Results

Scarlett had a CT scan performed on January 5th. They did a cardiac CT scan that included a lung perfusion study to determine the bloodflow from each pulmonary artery to the lungs. She did extremely well. No vomiting, no oxygen, no adverse reaction, no emergency room visits that night. I say that because of the horrible experience we had with her MRI back in August 2010. And her last CT scan had her discharged on supplemental oxygen. But this time she was a champ. That's my girl!

She had a follow-up cardiologist appointment a week later with Beth and Dr. Pophal on January 13th, where we got the results from the CT scan. I was sitting at my desk at work that morning reading over a piece of paper I had scribbled some notes on back in August the day of her botched MRI. The paper said that the cardiologists will be checking her weight for steady (though gradual) growth, monthly echos, likely a CT scan in the next 6 months with lung perfusion study, and possible cath if no improvement.

It was kind of a coincidence that I found and read that note on that particular morning. Because when I re-read it, I realized that that team of docs really knows what they're talking about... meaning, so far everything they've told me has basically come to pass. So when we took Scarlett in for the echo and clinic appt last Thursday I was sort of expecting them to say that she needs another cardiac catheterization....  and my expectations were met.

The CT scan revealed that the bloodflow to the LPA (left pulmonary artery) was at 27%, and anything below 30% is considered problematic (concerning). So what they want to do is take her to the "cath lab" and balloon angioplasty her LPA, just like they did 8 months ago, except this time they will also insert a stent to keep that artery open.

Normally, I probably would've started crying my little eyeballs off, but since I had just read that note I jotted down in August, I was anticipating this news. So instead of getting depressed and scared, I was very stoic and asked when they had to do this? Beth and Dr. Pophal said in the next month. And I said: as long as she's not in there for her birthday, I'm fine!

So, right now I'm waiting to hear back from Juanita (the surgery scheduler) to schedule her cath. I still haven't cried yet, but it will probably hit me later and I'll probably fall to pieces just like I always do whenever we have to put Scarlett under anesthesia.