Thursday, April 30, 2009

"No Change"

Sometimes the strangest phrases can mean the best news! I know other moms of cardiac kids understand the wonderfulness of the words "no change".

Today Mantha had her routine follow-up cardiology appointment. She sees the cardiologist every six months. She gets an EKG and an echocardiogram at those appointments and today was no exception. A routine appointment takes about 2 hours.   One thing that was somewhat important but some may think is routine is she pulled off all the 'sticky' leads after they finished the EKG.  It was good therapy!

She *loves* going to the doctor.  Any time we mention going to the doctor, she gets excited and keeps asking every day if it's the day to go to the doctor. She's become and expert at lying still for the EKG and she looks forward to the echocardiogram. That part is easy to understand. She gets to watch a video while the technician does the echo.  The technician commented on how well she was doing being still while she did the echo.

John was with Mantha today. He usually takes her to the cardiologist or we all go. (Last time we all went and made it a field trip. The other girls got see the EKG and the Echo and got to ask questions). John said that Dr. S came in after reviewing all the tests (EKG, echo, and his own examination) shaking his head. The first words out of his mouth were 'I just can't explain it.  When I see the tricuspid insufficiency on the echo, and I listen to her... But she's fine'.  

He can NOT explain why her heart function is so good.  You see, her tricuspid valve leaks. She has tricuspid valve insufficiency. It's side effect, if you will, of the 're-wiring' of her circulation due to her condition.  It's been funny sometimes, when we take her to a non-heart doctor and they listen to her heart.  The insufficiency results in a very loud and pronounced murmur.

Two and a half years ago, Dr. S decided to do a heart catheterization to 'get a baseline' of what her heart was doing.  Before he started the procedure he warned us that the results most likely were not going to be well, that we may even have to look at yet another heart surgery.  When he was done, he started his report of the procedure with 'I can't explain why her heart's functioning so well, but it is.'  

So, by God's grace we are still on our six month schedule of appointments.  Six months is the longest we've gone without seeing the cardiologist.

(Both John and Tess contributed on this post)

Thursday, April 23, 2009

a quick picture of the 'boo boo'

Here's a picture of Mantha's band aid for her 'boo boo'.  When she was getting the blood drawn she kept saying 'it tickles' (she says that instead of 'it hurts'), but towards the end she admitted it hurt.  She was very good about the whole process, better than me!

Wednesday, April 22, 2009

Today's Doctor Appointment

We decided it was time to visit the endocrinologist. We haven't seen Dr. G in a few years. That's a great thing! A while back I took Mantha into to our family doctor to get a referral for Dr. G. Mantha is 11 now (12 in August). Our family medical history has females going through puberty around age 11. We wanted to be sure that Mantha is just delayed and that nothing is wrong.

Today was the day of the appointment with Dr. G. John had to take her because I have no voice. We would have preferred both of us taking her but I am thankful that my sweet honeybear was willing and able to do it.

First some GREAT news. Dr. G confirmed that although Mantha is well below the 5 percentile (she's well below the chart period!) she does have a nice growth curve and he seemed pleased with her growth curve. He discussed with John some things that can interfere with starting puberty or cause puberty to be delayed.

Dr. G also confirmed that some previous blood work was all "normal" but did order 4 more blood tests to make sure all was functioning as it should. He also ordered a "bone age" which is a scan or x-ray of the hand to determine how old the body thinks it is.

Surprisingly, we had the results back within 8 hours! Her blood work was all fine and normal, but her bone age appears to be at least three years younger than her chronological age. This news, on the surface, may appear to be bad news but it really is good news! Because her body thinks it is younger than it is, it means she has several more years to grow! Dr. G said this was very good for her height projection. (She will still be quite petite but I was afraid she might not reach 4 ft but she may even reach 4 1/2 feet.)

So she is just developmentally delayed. I can live with that. John can live with that. What does that mean? It means that everything appears to be working the way it should work, but it is taking longer to get there. This shouldn't be surprising at all; this was the child who didn't get her first tooth until she was 19 months old and it was a molar! A molar!! She is so not typical!

And my lesson? I am once again in awe of the miracle of life and God's handiwork. Mantha is fearfully and wonderfully made. Because she is so mentally delayed, it is good that she is physically delayed. God is Good. His timing is perfect.

Saturday, April 4, 2009

Mantha's story – The beginning of the beginning part 2

We left off where my wife was recalling where, although we were told we were only having one child, it felt to her that it was two or 'an olympic swimmer.' So she goes to her ultrasound appointment without me, as I was tied up in an exercise and I couldn't get the time to take her. No big deal, as it was a routine ultrasound and there was nothing to indicate any issues. As I was working, some of my coworkers were starting to come up to me asking 'did you talk to your wife?' Now this was odd, as it was in the days before cell phones were ubiquitous, and when people are asking if you talked to your wife it can't be good. So finally my commander comes up to me and informs me my wife is waiting outside the building we were in. I go down, and my wife holds up an ultrasound picture saying 'baby a, baby b'. I immediately doubled over in shock, as that was the last thing on my mind.

Once I got over the shock, I grew to enjoy the concept of having two at once. We even announced it in church the Sunday after we found out, complete with some audible gasps. Going out and purchasing two of things: carseats, clothes, hats, and so forth. Having the two carseats sitting together on our coffee table one day really hit the point home about twins.

I wish I could say that the rest of the pregnancy was uneventful, but it wasn't. As the pregnancy progressed, complications ensued. Primarily pre-term labor/contractions. They started in late June, and proceeded to put my wife on bedrest, with a variety of medications. She broke through terbutalene, and then magnesium. I remember a number of occasions where, immediately after work, I would go to the local German 'chicken man' to get roasted chickens and french fries, since I really didn't have time to cook.

Finally, in August, we went in to the emergency room, because my wife seemed to be having issues with a bladder infection. The infection started triggering contractions, and labor was beginning. The hospital decided not to stop it since we were at 34 weeks gestation. Since the hospital we were at couldn't handle 34 week children (wasn't equipped), they moved us to a German Frauenklinik. After the labor slowed a little bit, it picked up again. Finally at 12:34 pm Mantha was born, she came out despite the midwife (Germans are nice in the fact that they rely on midwives for deliveries and keep the doctors out except for emergencies. We only saw the doctor twice and he barely poked his head in the room and asked 'how are you doing?' each time) telling my wife to stop pushing. Her twin was born 18 minutes later (it took that long because they had to maneuver her arm out of the way so it wasn't on top of her head). Her twin was immediately taken out because she seemed to 'have trouble breathing'. We were relieved and concerned at the same time. We had two new daughters, but one had 'medical issues'. We were completely fooled about which child had medical issues, and how serious they were.....

to be continued.