Monday, January 24, 2011

The State of her Heart

Ok time for a rundown on Reagan's condition.  I'm going to attempt to spell it all out, but I must issue a disclaimer that I'm not very good with medical jargon or explanations, but I will do my best.  Reagan is 4 months old and we have had a total of 24 doctor's appointments since she was born.  Most of them thankfully have been routine to check for things commonly associated with Down syndrome.  For those who do not know, these can run the gamut from thyroid problems to leukemia to digestive issues to ear, nose and throat conditions or vision problems to the big one in Reagan's case, congenital heart defects.
Starting from the beginning.  When Reagan was tested for T21 her blood was also run for thyroid and leukemia among other small things that (sorry, not a doctor) I'm not sure of.  A complete blood count test.  This came back perfectly normal, but will be repeated every six months to be sure that no problems develop.  When she was six weeks old she saw a pediatric opthamologist to check her vision because if she had certain problems it was important to correct them right away so that they didn't interfere with her ability to learn how to see (brain stuff...really interesting, but I can't really explain it).  She had a slight drift which is not uncommon in babies that age (and I think she's grown out of it)  and is a little far-sighted, but nothing of concern.  She will be re-checked in April, but we are not concerned.  Reagan failed her newborn hearing test which was no surprise to me as she wasn't always responding to sounds, although we knew she could hear.  Her first diagnostic hearing test showed that she had 50% hearing loss in both ears, but it was and still is unclear whether that is due to fluid which can clear up (on its own or with assistance from tubes) or from nerve something or other (sorry I warned about that medical jargon) which is permanent.  The test was repeated not very successfully a month later and they were only able to test her left ear.  Little miss didn't like having wires hooked to her head like a science experiment.  The audiologist said that she was still showing only 50% in that ear, but we suspected that the hearing in her right ear had improved, just no test results to confirm our observations.  He also said that he thought it was probably mostly if not all from fluid.  We have not been able to follow up with an Ear Nose and Throat specialist yet, but will be doing that very soon, but her pediatrician says that her ear canals are NOT particularly small so that is good!  And all of us who interact with her including her physical therapist believe that her hearing is now perfectly normal.  She turned her head to the sound of her sister singing from the other side of the house :)  Reagan was evaluated for Early Intervention when she was 8 weeks old and has been working with her physical therapist Elizabeth twice a week for two months now.  She is going to make Elizabeth very happy tomorrow when she shows off how she has learned to hold her head up over the weekend.
Now for the big one.  Reagan's heart condition.  And the cardiologist drama.  We did not have a pre-natal diagnosis for Reagan's Down syndrome and there was nothing on her ultrasound to indicate that she had any heart problems (not surprising with the type of defect she has).  She had no murmur when she was born and her chest x-ray came back clear so there was no immediate danger and we scheduled to follow up with a pediatric cardiologist when she was two weeks old.  By that time there was a murmur present and the cardiologist performed her first (of now three) echocardiogram.  She has a 5mm VSD (ventricular septal defect....see how much I've learned).  In simpler terms there is a 5 mm hole between the bottom two chambers of her heart.  This hole will not get smaller.  There is also a flap that is partially blocking that hole and may (I'm less optimistic than the doctors) eventually seal over it if we can give it enough time.  Whether it ever closes or not however it is helping restrict the velocity of the blood flowing between the chambers so one side of her heart is not enlarging which is VERY good.  When her echo was repeated at 10 weeks she was put on medication.  Captopril to lower her blood pressure and keep the heart from working too hard and Lasix to keep the fluid out of her lungs.  She is doing very well on the medication and just got bumped up slightly today, it is doing its work.  As far as that goes she is stable.  The problem now, as I have mentioned is her lack of weight gain.  This is because of her heart and we are attempting to help by pumping and boosting the calories of my milk for her.  If this works and she starts gaining then surgery will be put off indefinetly giving her heart a chance to heal.  If in a couple of months she is still not gaining then surgery will be scheduled.  The good news on that is that the pumping is working!  (Thank you for the pump!)  And Reagan is not rejecting the bottles anymore, though she still doesn't like them.  The drama with the cardiologist was two-fold.  We are VERY unhappy with his front office.  We started out paying for Reagan's cardiac care out of pocket.  She is now approved for CCS (California Children's Services), but that didn't kick in until November.  The office however has been refusing to let her be seen (they turned me away until I went to the bank and brought cash) until payment for the first visits were made in full.  The biggest problem with this is that they have not sent any bills or statements reflecting payment made by us or CCS, so we are having to address this now.  The second problem was that the doctor was pushing me from the first day we saw him to switch Reagan to bottles "so we know how much she's eating".  I didn't see a need for that since she was nursing better than my older two girls ever did.  He continued to push this at the second visit saying that she was not gaining enough and refusing to plot her growth on the Down syndrome growth chart.  He wanted to know if she was getting enough milk or if it was her heart.  We know now for sure that it is her heart, although at that point she was still tracking just fine on the Down syndrome chart and keep our (amazing) pediatrician happy.  These factors combined were making me uncomfortable and that combined with the fact that if we are facing surgery we would go to Loma Linda anyway caused us to decide to switch her care to them.  We saw her new doctor today and I am  very  relieved and much more comfortable here.  I understand her condition better and the whole situation works better for us.
So there you have it.  I don't know how coherent all of that was.  I know it was long and if I missed anything....ask!  If you stuck with it to the end here's a picture of the sweetie to make it worthwhile :)

1 comment:

Ilisa Ailts said...

Sweet indeed! In my opinion, you did the right thing sticking with nursing. It is best for her in the long run, and that is also an important factor in all of this. Keep up the hard work, it won't last forever!