Tag Archive for Tetralogy of Fallot

Week 20: You Gotta Have Heart

Skipping way ahead to current day. I’m in week 20 and I just had the fetal echo cardiogram. Because my daughter was born with Tetralogy of Fallot, they wanted to check out Junior (oh, yeah, BTW–IT’S A BOY!).

All looks well and I’ve been cleared to proceed as “normal.”

Which begs the question for me, what is normal? I had a midwife last time in Texas, and I’ve found a good midwife practice here in New York. However, I didn’t have the most pleasant labor experience last time around. How much of that was exacerbated or alleviated by being in a hospital, it is hard to say.

Part of me is really starting to feel like hospitals are great–for sick people. But a normal pregnant woman with a normal baby isn’t sick. And it isn’t just the horror stories of healthy pregnant women catching rare awful things from other patients…I’m also just really thinking about why hospitals are necessary for birth.

I’m a fan of Hathor and Crunchy Domestic Goddess, and I’ve been listening and reflecting on what they have to say about home births and the importance of feeling comfortable in your birthing place.

The benefits (in my mind) of a home birth is that it feels more natural and normal to me and I’ll have privacy and can birth the way I wish. The barriers to a home birth include the limited number of nurse-midwives in my area who will attend, the comfort level of other essential participants, and inertia. After all, the path of least resistance is to just go to the hospital. Which is strange, isn’t it? You would think that the easiest thing to do would be to just stay put, but somehow decades of pop culture have made it seem far more normal to rush into a speeding car, climb into a wheel chair, and be propped up in an unfamiliar bed.

My husband missed the birth last time (he was in Iraq), and he is looking forward to it. But I think he would feel more confident having his first time (and yes, his opinion does count here) in a hospital. I can’t forget that although I have a previous experience, this is all fairly new to him.

So, if anyone is actually out there reading…I’d love to hear your experiences with home birth. And I would REALLY love some words of wisdom from your partners. How did they feel about the home birth, before, during and after? Did they need convincing? What made them go for it? How was it? Would they want to do it again?

Congenital Heart Defects: Legislative Victories!

If you read this blog, you know about my support of the American Heart Association and my personal experience with heart issues. Today I got this great e-mail from the ACHA in my inbox and I want to share this with you.

Dear ACHA supporter:

We did it!

Thanks to the hundreds of letters, e-mails, and congressional visits made by people like you, both the House and Senate included calls for ACHD funding in the first version of the 2008 budget. To view the full House and Senate bills, click here (House) and here (Senate).

House:
Congenital heart disease -The Committee recognizes that congenital heart disease is a chronic disease affecting approximately 1.8 million Americans. It commends NHLBI for convening a working group to address this issue, and supports its recommendation that action be taken to prevent needless disability and premature mortality in this rapidly-growing population. The Committee urges NHLBI to work with patient associations and other appropriate public health organizations to develop education and research initiatives targeted to the life-long needs of congenital heart disease survivors.

Senate:
Congenital Heart Disease -The Committee commends the NHLBI for convening a working group to address congenital heart diseases, and supports its recommendation that action be taken to prevent needless disability and premature mortality. The Committee urges the NHLBI to work with patient associations, other appropriate NIH Institutes, and the CDC to develop education and research initiatives targeted to the life-long needs of congenital heart defect survivors.

So what’s the next step?
Over the next five months, Congress will work to create and vote on a final 2008 budget bill. We want this call for ACHD funding to make it all the way into the final budget. Once this happens, Congress will then ask federal health and research agencies to tell them how they have responded to this call for action.

So what do we need from you?
Please write or email your members of Congress to let them know why federal support for CHD survivors is important to you. The goal is to make your lawmakers aware of the call for ACHD funding in the budget and to urge their support for CHD survivors.

Think writing a letter won’t make a difference? Think again! Research shows it takes only 10 contacts to make a legislator pay attention to a piece of legislation!

Need some help getting started? Three sample letters and letter-writing tips can be found here.

Find your lawmakers by visiting www.house.gov and www.senate.gov. After you have found your lawmakers, follow the link to their individual web pages. You will find all mailing and email addresses here.

With your help, we can take this all the way!

Whole Heartedly

We just got back from Baby Diva’s cardiology appointment. I always feel a little down, even though I am continually amazed and grateful that the operation was developed to heal her heart and we live in a country where such technology is widely available.

She fills me with such joy every single day!

Before Baby Diva’s operation, her condition was always on my mind. Now, I may not think about it until I am changing her top and her scar flashes me a reminder.

Her appointments, however, force me to confront it again. I am reminded that she still has no pulmonary valve and will most likely eventually need one. At this appointment, we had a different member of the team. Her regularly cardiologist is just an incredibly optimistic man. While I appreciate his skill and his amazing bedside manner, I sometimes feel blindsided when I encounter the “realists.” The ones that feel compelled to mention that “there’s always a risk, even if it is 1%.”

At this appointment, we learned that she has a small hole in her heart–left intentionally and one that is present in 5% of “normal” heart healthy adults. We also got good news–there has been no further narrowing in her arteries and all signs point to a favorable outcome.

However, I also learned that the “indicators” they use do not correspond as well as they would like to the outcomes they are trying to predict. What this essentially means is that even kids who are “looking good” can experience problems the medical field is not yet able to explain.

Also on my mind is the thousands of kids the world over who do not have access to top surgeons, or even clean, well-stocked hospitals or regular check-ups.

Baby Diva’s defect, Tetralogy of Fallot, is a certain killer if left untreated…only a handful will make it beyond age 2, with most dying in the first year of life. but the surgery has a 95% success rate and most total repairs give their recipients a chance at a long, normal life.

One operation is often all it takes to bring a baby’s chance from near zero to near one hundred percent. Amazing.

Baby Diva’s regular cardiologist has his own charity and works with a number of non-profits, as well as the US military, to identify candidates for surgery in other countries and bring them back to the US for operations. Thank the Lord for people like him!

More research is needed, though, both for Tetralogy of Fallot and other congenital heart defects and the techniques and medicine that can bring hope to families.

More research so we better understand the causes of these defects, know the optimal age for repair, and so repairs can be less intrusive, safer, and more effective.

*sigh*

I just had to get that all out.

Last night I made a Squidoo lens about Congenital Heart Defects, and I will add any money made from the lens to my yearly donation to the American Heart Association. When we get settled I plan on looking into how else I can help raise money for heart-related research.

I was also thinking in the car ride home that I would like to start a blogroll for anyone who writes (even if it is just a small part of your blog) about a their own or a loved one’s heart defect. Blogs were so helpful for me when we were getting ready for Baby Diva’s operation.

If anyone out there who is interested sees this, let me know if you are interested. Just e-mail me your link (mamaluxe at gmail dot com) or leave your e-mail and link in the comments and I will get back to you.

Kindermusik Day

Yesterday was Kindermusik day. Actually, last Friday was Kindermusik day but we were under tornado and flash flood warnings so we made up our class yesterday.

I have so much fun at Kindermusik–I’m not sure if it is more of a treat for Baby Diva or for me.

With Baby Diva’s heart defect, we had to take extra precautions so we did not get out much in the beginning. Now I am just desperate to do something fun during the day and also to give Baby Diva a chance to play with other babies and adults. Most of the other women I know with young babies have moved away, one of the perils of the military life. Playgroups in the area are either closed to new members and/or they are for ages 18 months and up. I’d start one of my own, but we are moving soon.

So, for the next couple of months Kindermusik fits the bill for us perfectly.

We get music, movement, and social interaction. Baby Diva loves it so much she was fine pushing back her normal morning nap about an hour. She was cooing and giggling up in the car and right up until I put her down for the nap, at which she promptly passed out without protest.
Baby Diva even allowed someone else to hold her and walk her six feet away from me! We mommies switched babies and Baby Diva had a ball with someone else swinging her around.

I don’t know whether to celebrate or to cry. Actually, wait, no… I do. Celebrate. Definitely celebrate.

Party Girl

I know a baby, her name is Party, Party Baby…

Because Baby Diva had a heart condition, because she never really liked a bottle, because we are moving soon, because we live far away from family and life-long friends…for so many reasons…we never got her a sitter here.

For the most part, I had avoided formal occasions. Before her surgery, I had to avoid crowds in general, anyway. Now that Super Dad is back from making the world safe for democracy, though, there are tons of Formal Balls and other parties.

Baby Diva had full dance card last week.

First, an all-ranks Military Ball:

Then she went to a rehearsal dinner:

Then she went to a wedding and saw her Daddy lead a saber arch:

Baby Diva Debuts

Baby Diva knows how to make an entrance.

Warning: If you have never given birth before, you may want to skip this post.

At 2:30 am on the 8th, I awoke, feeling “kinda funny.” Then I felt “kinda wet.” Then I felt REALLY WET.

A week ago, I had found out Baby Diva was in the transverse lie position…meaning she was across my uterus instead of head down, or even butt down. Laboring in that position is unsafe, and having your water break in that position is downright dangerous, so I had an appointment to attempt to turn Baby Diva the following day.

Obviously I was never going to make that appointment.

Super Dad was still on his way home for leave from the Sandbox (Iraq) and my mom was not due in from New York for about 12 hours. So, my friend graciously picked me up at 2:30 am on the 8th.

Three doctors consulted because they were not sure if Baby Diva was still transverse or not. Meanwhile, a nurse tried to get an IV in me and I refused. I wanted a hep lock. She kept saying–but when you have a c-section…I kept saying, but that is not certain yet.

Finally, they decided Baby Diva was a little twisted, but head down enough to proceed.

They allowed me to labor for about 8 hours but I was not making any progress at all–in fact I went backwards. With the water broken they urged pictocin. They put it all the way up and I handled it for about 2 hrs. I tried to play my hypnobirthing tapes but they kept interrupting any relaxation I was able to achieve. When they said it was going to still be a long while, I went for the epidural.

My mom was delayed at the airport–she was due in that day at noon! She arrived just as they were prepping me for the epidural.

Then we started to make progress…but I developed an infection, and the contractions stopped really working. With the epidural wearing off and pushing past the 24 hour mark, I still managed to get her out. I told the midwife there was no way I was having a c-section after 24 hours of labor!!! (OF course if it had been life or death I would have–but other than that I was determined.)

Baby Diva was born on August 9, 2:38 am, and was 7 lbs, 2 oz, 19.5 in. I have never felt so perfectly warm and wonderful as when they placed her on my chest.

Over the next two days, the doctors came to me with increasingly worrisome reports about Baby Diva having a heart murmur. Finally, they decided to transfer her to San Antonio…but at the last minute decided it would be safe for me and my mother to drive her down so I could continue to breastfeed her along the way.

At San Antonio we discovered that she has a condition known as Tetralogy of Fallot, which will require surgery sometime between 3-6 mos. Later is better as she will be stronger.

In the meantime, Lilah is behaving like any newborn–I just have to keep her extra calm and take exra germ precautions.

Some of the scariest words I have heard now include:

“And she will require open-heart surgery.”

“Try your best to keep her calm. If she cries, she may turn blue.”

“Here is the 24 hour pager for when she turns blue.”

Super Dad was able to hear Baby Diva’s first cries on the phone and arrived back home for leave the day after our San Antonio trip.