Another Letter to Tina
January, 2001

You wrote:
I remember reading in "Alexander's Story" that you said it had been a difficult pregnancy, in what way? I'm asking because we had a scare on Tuesday, I started bleeding, I had never bled with Jordan, so I was very worried, we went right to my obgyn, the Dr. said my cervix was bleeding due to strain or even walking, but, that all looked okay, did this happen to you? I also feel very tired and have little energy by early afternoon, and my heart will start to race out of the blue. I did not feel this way with Jordan, I know each pregnancy is different so I guess it's to be expected.

My pregnancy with both boys was a challenge. With both of them I had bleeding -- which terrified me (the bleeding was at about 17 weeks with Joey -- past the first trimester! and earlier than that with Alex), but with Alex I was less frightened since everything worked out fine with Joey. The biggest concern with my second pregnancy was that I had a prolapsed uterus. This meant that I had to be put on bedrest for a good part of the last trimester. It also meant that Alex's head was engaged in the birth canal for a couple of weeks before he was actually born. It was terribly uncomfortable and I was so afraid of delivering him too soon. I started having contractions at about 29 weeks -- way too soon! That's why my mother came to stay with me and help me out at about 34 weeks gestation. We were hoping to make it to week 37 without using any drugs, but it wasn't easy. (Joey was a handful at that time since he was a boisterous 2 year old.)

You wrote:
You mentioned that you were living in Florida, where? we live in Tampa, "Jacob" will be delivered at St Josephs Womens and then moved to Childrens after for his first surgery. Are you familiar with St Josephs?

Frank had wanted to go to graduate school since Joey was a baby, but he needed more experience as a nurse before he could apply to the program he was interested in (nurse anesthesia). About the time Frank felt ready to apply, we had Alex. Needless to say, our plans dramatically changed.

Alex had his surgeries in San Antonio. At the time, we were living about four hours from there in central Texas (in a tiny town called Mound). We went to Temple for Alex's well-baby checkup and the next day we were taken by ambulance to S. A.

We waited about four years before really considering graduate school again. Finally, we decided that Alex was doing fine and that if Frank wanted to go to school, we needed to just go ahead and do it. That's how we ended up in Panama City, Florida. Frank attended graduate school at the Gooding Institute at Bay Medical Center.

I don't know much about the hospitals in Florida. Alex's cardiologist was at Sacred Heart in Pensacola. His name was Dr. Blanchard and he was truly a wonderful man. Luckily for us, we didn't have any complications or serious heart problems for the two years we were there.

I have been in touch with some mothers in southern Florida who take their children to Arnold Palmer Hospital. That hospital is affiliated with Sacred Heart. Dr. Norwood recently went to those hospitals to do some training (I believe). They are affiliated with Dupont Hospital in Delaware (where Dr. Norwood works). Many of the families I have been in touch with who have children in Florida choose to go to Egleston's Hospital in Atlanta, Georgia.

In May I had the distinct pleasure of going to Atlanta to give a speech at Emory University (right across the street from the hospital). The event was a special conference for parents of children with congenital heart defects and I was the only non-medical speaker. The rest of the speakers were doctors or therapists who work with our children on a regular basis. They gave talks on state-of-the-art equipment which is used at Egleston's and new advances made for children with severe, congenital heart defects. I was very impressed with the conference.

What impressed me even more, perhaps, was Egleston's Hospital itself. The nurse who helped put the conference together took me on a grand tour of the heart unit. At the time I didn't know that Egleston's is the 3rd largest children's hospital in the United States. The hospital is very colorful and friendly. They take great pride in their heart wing and I could understand why after seeing it with my own eyes.

For Floridians who live in the panhandle, like I did, it would make more sense to go to Atlanta than down to Arnold Palmer's or the children's hospital in Miami. I'm sorry I don't have more information on St. Joseph's. I do know one family who was sent there, but their baby was very sick and had more problems than just HLHS and he didn't make it. I heard nothing but nice things about the nurses and doctors. I was actually friends with the grandmother, not the mother. She was a nurse and she told me that she felt comfortable leaving her grandson in the care of the professionals there. She visited him as often as she could but it was quite a drive.

Perhaps others who read this letter will let us know what their experience with hospitals in Florida has been. It would be a good question to post to a heart listserv. If you don't know about this already, now is a good time for me to tell you about them. Mona Barmash of the Children's Health Information Network (www.chin.org) has a number of listservs which she moderates. Mona is the mother of a teenager with tetralogy of Fallot. There are two listservs which might be of interest to you -- one specifically for HLHS and another called PDHeart which is for parents of children with any heart defect. Listservs like these generate a tremendous amount of mail, so don't even think about joining unless you know where your DELETE key is. When the HLHS listserv was first started we had a handful of letters in our emailbox everyday. When I left the list last year, there were sometimes close to a hundred messages per day. Listservs are like communities where people post public messages -- sometimes questions or answers to questions, sometimes gripes or concerns, and sometimes just little stories about how kids are doing to help inspire others and let them know what they can expect as their heart kids grow up. Now there is often information on the listservs, too, regarding resources which are available, conferences for parents or professionals and ways that we can unite and help publicize our cause and the need for more money for research. I miss the listservs I belonged to and once I'm a little more settled in Texas, I will rejoin the HLHS listserv.

You wrote:
One thing we have found through research is that most of the babies with HLHS are born premature, do you find this to be true? I know you went 37 weeks, I'm just starting my 28th week, and we are so hoping I go full term, I was 1 week early with Jordan, and he was only 5lbs 13 oz, but, very healthy, I remember the Doctor saying, "some women just have small babies" I really hope I go as long as possible so "Jacob" is a good healthy weight. The Doctors say there is nothing I can do to prevent premature labor, so all we can do is continue to pray.

I'm curious what research you read saying that most HLHS babies are premature. I am in the process of revising my HLHS Handbook, so please let me know what information you found and where you found it. The research that I've conducted thus far does not indicate that at all. In fact, a good percentage of children are still born seemingly normal, and it's not until later that it is discovered the baby has HLHS. It seems that more mothers are finding out in utero now than before, but most of my friends had normal deliveries. (BTW, even though Alex was 3 weeks early, he weighed over 6 pounds. He was a good-sized boy.)

You asked:
What is a Holter monitor? Is this a standard procedure? also, when you said Alex's restrictions are self imposed, does this mean he knows when enough is enough and he knows what he can and can not do?

A Holter monitor (named for the doctor who created it) is like a portable EKG machine. There are electrodes attached to the chest and to a little box. The box is put in a fanny pack, back pack or in Alex's case -- a little bag worn over the shoulder (this was affectionately referred to as Alex's tricorder -- if you are a Star Trek fan, you'll know what that is and why he was reluctant to give it back!). It is not uncommon for children with HLHS or other complex heart problems to later develop arrhythmias. The Holter monitor checks the heartbeat for 24 hours. This way the doctors can see if there are irregular heartbeats during sleep or throughout the day. Alex's heart is doing just fine. Most Fontan patients start getting monitored once a year once they hit five years of age; more frequently if problems are noticed.

In answer to your last question, yes. Alex knows when he's had enough and he's not shy about telling me so. In December we went bowling with some friends and family. There were 5 children in all. The lightest ball was 6 pounds and Alex was only about 36 pounds at the time.

Now, when we were in Florida, we belonged to a huge homeschooling group (over 100 families) and we went bowling once a month. We always used bumpers and Alex was doted on by the woman who owned the facility. Her grandchildren were homeschooled and they often bowled on the same lanes as us. She always came over to where we were and would "help" Alex bowl (by this I mean that she helped carry the ball down and helped him throw the ball or roll it on the floor). If she didn't help him, I usually did. Alex was among the youngest bowlers at the time (4 and 5 years old).

Right before we moved back to Texas, Alex had his 6th birthday. This birthday was quite a turning-point for Alex. He now considers himself a "big boy" and he is quick to tell us that he can do things by himself. Thus he has cracked his own egg and fried it (with some help, but mostly by himself); is learning to tie his own shoes (Velcro on shoes doesn't really help us learn this skill!); has some chores (he's even learned to vacuum); and tackles programs on the computer like a pro. Thus, when it came time to bowl after six months off, he took a different stance.

He insisted on carrying the ball down the lane himself and throwing it -- not rolling it (which, I was told, was for babies). That was a lot of walking, carrying and throwing for such a little guy. He also had a lot of waiting to do and a little practicing on the side (while the other kids bowled, I showed him on the carpet how to do what he wanted to do). We had rented one lane for 2 hours, so there was a lot of waiting with 5 bowlers. By the time the first game was over, Alex was spent. He'd gotten a couple of spares and had a very respectable game, but he was tired. The kids wanted to bowl in a different order for the second game and when I asked Alex where he wanted to be in the line up, he told me that he was tired and would rather watch.

I have to admit that I was a bit concerned. But when I thought about it and how heavy that ball was in proportion to Alex's body, I saw how reasonable he was. I was proud of him for not pushing himself too hard and for sitting back and applauding the other kids (instead of just whining to go home, which he easily could have done). Most of the time, Alex can keep up with whatever the kids around him want to do. Again, Alex was the youngest child (the other children were at least 3 years older than him), so you can see, he is really challenged and pushed harder than children who don't have an older brother and cousins around to play with. I'm glad he knows when to call it quits, and I've been told that by other "heart moms" that their children respond in much the same way.

I hope that by posting this on my website, others will write in and share information on the Message Board. By sharing information, all of us become better educated and better advocates for our children.

Take care, Tina, and keep in touch!

Sincerely,
Anna Jaworski
Baby Hearts Press

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