Showing posts with label heart. Show all posts
Showing posts with label heart. Show all posts

July 5, 2010

Doctors Aren't Always Right

This time of year we start getting into anniversaries....none of them good. You see, A's birthday was last week, and since she spent twelve weeks in the NICU, we had a whole summer of events that I'd just as soon forget: Her heart surgery at 10 days old to correct her vascular ring. Getting her g-tube placed at 2 months. The day we found out that she'd had a prenatal stroke. The day we learned she had failed her hearing tests and was deaf/hard-of-hearing. The list goes on and on, and I promise I won't bore my readers all summer by announcing things like "today is the anniversary of when we found out her vocal chord was paralyzed"....but today IS an important anniversary that I would like to discuss.

Four years ago today, on July 5, A was transferred by ambulance from the NICU in the local hospital where she was born to the NICU at Children's Hospital, which had a much higher level of care. To say that J and I were in shock was an understatement. First, I had just been discharged a few days before, without my baby, and was having to go back and forth to the NICU, pump breastmilk several times a day, spend time with my 2-year-old son, and heal from the c-section I'd had. I was physically, mentally, emotionally, and spiritually exhausted. Following the ambulance down to Children's was surreal. And just checking in was jolting: we'd gone from a small, local NICU with maybe 2 babies in it, to the hustle and bustle of Children's Hospital, whose NICU had about 40 babies. My baby didn't belong there---yet she did, and she belonged there for quite a long time.

That night, J and I came back to visit A (we had gone home to spend time with D). When we got there, a neonatologist approached us and told us that A had a heart defect (the aforementioned vascular ring) and would need heart surgery, and that additionally she had diagnosed A with DiGeorge Syndrome. Apparently, if you put together a vascular ring plus a cleft lip it points to DiGeorge Syndrome. She didn't tell us much....just gave us a handout about the disorder, and told us to "disregard the section in the handout about mental retardation". She spent about 5 minutes with us, talking to us in a very matter-of-fact detached way, gave us a handout, and left. That was it.

That night was terrible. I cried. I threw up. J cried (the first and only time I had seen him cry throughout that whole terrible summer). We were scared about her future...not only her physical health, but now her cognitive health. Remember, this was just the beginning of her life, and we had yet to learn all the other birth defects she had (vision issues, hearing issues, the prenatal stroke, etc). This was just the tip of the iceberg.

But here's the thing: A DOES NOT have DiGeorge Syndrome. They did a blood test and it clearly shows that her 22nd chromosome is intact (in DiGeorge Syndrome a piece of the 22nd chromosome is deleted). So, she does NOT have this syndrome...the neonatologist was WRONG.

It upset me then, and it pisses me off now, that this doctor made a diagnosis without knowing all the facts (waiting two extra days for the blood test to come back would have shown her that she had misdiagnosed). That would have saved me and J from a few days of needless worry, fretting and googling. It also made me angry that she would make such a bold diagnosis and simply give us, the parents, a little handout and then walk away.

Nonetheless, today is the anniversary of when I realized that doctors can be wrong...that you can never give up hope....that you can't go by a handout or an article or a google document....that children will prove you wrong, even WITH a correct diagnoses. No one can tell the future. Our kids have NOT read the books of what they are not "supposed to" be able to do. In essence, today is the anniversary of my eyes being opened, of asking questions, of hoping and praying.

And because of her intact 22nd chromosome? Now 22 is one of my lucky numbers!

June 6, 2010

Bittersweet Updates

Wow, I haven't posted in a week. This past week has been very bittersweet mixed with some good news.

First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.

However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.

Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.

On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.

Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!

All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.