Ramona Mae

No not the kind that talking heads use to describe tiny contrary metrics in a sagging economy. I’m talking real, living green things shooting up from the ground or budding on branches, any day now. This weekend it’s going to get into the mid-40’s in Chicago, and the Spring equinox is weeks away. We’re going to start seeing green shoots soon.

Ramona had an appointment with her cardiologist today. It was the follow up to the cath she had in November. Her oxygen saturation in the cardiologist’s office got up to 91, the highest reading we’ve ever seen there. They said she’s doing so well that we should just come back in August for another check up. That is great news! Normally what we see after a cath is that Ramona gets a lot of improvement right away, but then as time goes on her sats drift lower. These follow ups usually double as cath-scheduling appointments. Not this time. I feel like I can forget about all this junk for a while, and that feels good.

Anyway, we’re going to need our energy for other things, as Jane is due with our 3rd child in late May. Finding out last summer that we were expecting again was quite the shock, and pretty scary for a while as our fears of what another child might bring into our lives took hold. We’re beyond that for the time being. Simon and Ramona are very excited to meet their new baby sister in a couple months time.

So you see, we’ve got our own green shoots popping up around here. Spring is just around the corner.

Hi all!

It’s a been a while since we’ve posted anything…which is good! Things have been pretty quiet lately. The walk in August was a big success, with over $10,000 raised and 300 walkers. We were so pleased and blessed by the experience.

Ramona had a heart cath today. They performed angioplasty in three places in her right branching pulmonary arteries. Two were moderately improved and one was minimally improved. We’re pleased with that result. Her sats have not risen this time and there is a chance that the limiting obstruction to the blood flow in her lungs is now the conduit she had placed in June 2007 and not her pulmonary arteries. This is good and bad news: On one hand it is encouraging to know that she may be able to tolerate more blood flow to her lungs. On the other hand, they would need to do another open procedure to replace the conduit, and there might not be much more they can do by cath to improve her oxygenation. This is all speculation of course and we won’t be doing anything while she is doing so well from a clinical perspective.

She is in the PICU now, she came back from the OR intubated and she will remain that way until later tonight. Hopefully they will be able to safely extubate her and she will be discharged tomorrow. As she gets older, there are new challenges. It’s wonderful that she is so verbal and expressive and independent, but hearing her say, “I want to go home, I don’t WANT any pokes!” is heartbreaking. She has been waking up quite a bit, breaking through the sedation and gagging and coughing pitifully. It’s so sad.

So let’s get that tube out, get her better, and go home! Andy will spend the night with her and I will return in the morning to put the discharge smackdown on the rounding doctors. Here’s shot of Ramona that Andy took one morning first thing. She’s the best.

Hello everyone,

Online registration is now available for Slow and Steady: A Walk for 22q11 Awareness on August 22nd, 8:00am in Glen Ellyn, IL. Registration will be open until August 1st. Please follow the link below:

http://www.pinkhippobows.com/

The online registration is being generously provided by our sponsor, The Pink Hippo. Although donations/registration fees will not be tax deductible (we are working on that for next year), you can rest assured that this is safe and the most efficient way for us to get everyone signed up.

Please enter “Ramona” in the voucher code to delete the automatic shipping charge. If you’d like a shirt for a child three or younger, you can do that by registering them as a “Child Walker”, the cost is $11. Children three and under without a shirt are free. If you would like to be a sponsor or are unable to walk but would like to make a donation, please select “Donation Non-Walker”.

I will have a printable flyer sometime next week. If you’d like a copy, please leave me a comment below and I’ll send it to you! Please consider asking for your community’s support of this worthy cause. If you have any questions or difficulty registering, please let me know, I’d be happy to help.

Thanks so much, I can’t wait to meet everyone at the walk!

UPDATE: We have received such a great response about the walk. Many have asked who to make a check out to or how to officially register. We are working to get an online payment and registration going. In the next few weeks I will send an email out to those who are “pre-registered” with more detailed instructions. Thanks for being patient and keep spreading the word! If you are considering walking, please leave a comment below and I will be sure to update you with all the details.

I am so happy to announce that there will be a 22q11 awareness walk on Saturday, August 22nd, at 8:00am in downtown Glen Ellyn, IL. The walk will be 2.2 miles, the cost is $22 for adults, $11 for children, 3 and under are free. Everyone is welcome! Proceeds will benefit the genetics department at Children’s Memorial, the 22q11 Awareness Foundation and “1 in 100”, a CHD advocacy group. Thanks to Pink Hippo, Maddy’s Organic Meals and Liberty Gardens for offering to sponsor us. We are still looking for sponsors, so if you or someone you know might be interested please contact me at janedeitrich______at________yahoo.com.

The walk was suggested and is being sponsored by the ladies at The Pink Hippo. Julie and Gretchen have given our family so much love and support and wanted to reach out to others dealing with this diagnosis. When she approached me about helping to coordinate a walk, I was thrilled.

Many of you already are aware of 22q11, but here is a short version of why this is such a worthy cause. While 22q11 was once thought to be rare(1 in 4000 births) the latest studies show that it is closer to 1 in 1200 births, making it almost as common as Down Syndrome. But because the symptoms vary so much from person to person, this syndrome is difficult to diagnose and complicated to treat. There are 186 known symptoms of 22q11. There is no cure. Please help us support this worthy cause!

We don’t yet have the set-up to accept online registration or payment so if you’d like to participate in the walk or make a donation, please leave a comment and I will contact you to make arrangements. You need not leave your email address in the body of the comment, I will contact you through the email you sign on with. Please sign up by August 1st so that we can get all the goodies together in time :)

Thank you!

Hi there! We’re still waiting for the surgeons to conference on Ramona’s last cath. Rest assured, as soon as I have something concrete to share I will. Everything went fine and the results seem good, so we’ll see.

But I’m posting today to ask for some help from my fellow heart moms. I have reconnected with an old high school friend, Estrella Rosenberg, who is doing some amazing work for CHD advocacy. She lost a sister in infancy to HLHS and is passionately pursuing ways to help other children affected by CHD. She is working hard, funding studies, and generally being a squeaky wheel in order to create a standard where every child would be pulse-oxed before going home from the hospital. The obstacles, as I understand them, are mainly the cost (one-use sensors are expensive and reusable ones are often not suitable for infants) and red tape.

Ramona was diagnosed at two months old. She had many signs and symptoms of a heart defect, was in the hospital for four days at birth, saw her pediatrician over a dozen times and even had an echocardiogram before anyone put a pulse-ox on her. She was lucky. She lived long enough to receive care and is thriving. Many children are not so lucky. Many die before diagnosis, many die because the care they receive is too little, too late. About 1 in 100 children are born with a heart defect. Many of these defects are easily detectable with pulse-oximetry.

Estrella has asked me to collect stories from my fellow heart moms whose children were diagnosed after birth, either in the hospital after birth or later on after coming home first. If you feel comfortable sharing your story, please send it to janedeitrich—-at—-yahoo—-dot—-com (take that spambots!) or you can simply post your story in the comments below. Thanks so much. I am also looking for photos to be used in some of her publications. Photos of your heart kids at home, in the hospital, with their feeding tubes, with a trach, playing soccer, playing dress up.

Thanks for your help.

Also, I wanted to share the sad news that little Faith passed away this week. She was a beautiful girl, loved by her family and loved by God. You can leave messages of condolence here.

I’m sure Jane will be posting some thoughts, but I wanted to let everyone know that Ramona came home yesterday, less than 24 hours after the surgery ended. She’s incredible. The news from the surgeon was positive, and we’re all enjoying our long weekend.

Thanks for your support.

Andy

I spoke with the cardiologist this morning very early. I think we’ve gotten some good news. She was able to meet with the CV surgeon and cath surgeon last night to discuss Ramona’s care and it sounds like we have a good plan. (more…)

We’ve had a busy couple of days.

Wednesday morning Jane took Ramona to the cardiologist. She called them on Saturday after Ramona had a what we think was a tet spell. She was playing outside with some other children and turned a bluer color and had a hard time breathing for a short interval. Ramona’s cardiologist scheduled the Wednesday morning appointment. (more…)

Hi there, it’s been a while! We’ve been white-knuckling through these final days of winter and can’t wait for the SPRING. A quick update: (more…)

We saw the cardiologist this morning and got some more information. Here is what the cath surgeon is proposing: (more…)