Thursday, March 7, 2013
Three Weeks Old
Auguste turned three weeks old on Tuesday. The weeks seemed to move so slowly leading to his birth and have flown by since then.
The weeks have been full of mixed emotions and concern....Hydrops is a very rare condition, approximately 1/1500 with only 10% being survivors. Survivors are usually diagnosed later in pregnancy and early detection is typically a poorer prognosis...of those survivors, many spend weeks and months in the NICU...
therefore, a baby like Auguste, with early onset hydrops, then spontaneous resolution, is very rare indeed.
I have read about a few, who are now healthy children and it is what I prayed for the entire pregnancy.
I also have met a few on the hydrops support pages, and two of those babies have since died of immune deficiencies. Yes, babies just like my Auguste, sent home, healthy...then dying later of infections, one at 5 months and one at 33 months.
This is heartbreaking and obviously, on my mind...after all he has been through, what if this, what if that?.
I discussed this with our pediatrician today. He basically said that Auguste is not a "normal baby" and as much as we hope he IS a "normal baby", there is no textbook for how to deal with things or what to expect.
He decided to put in a consult for infectious disease. It is likely things will be fine but better to have peace of mind, and let them do a work up and thus be more assured his immune system is functioning as it should. He also feels they may be able to give us more insight on his hand.
This will likely happen in the next few weeks and our cardiology visit is at the end of April, so hopefully by May we may have a clean bill of health.
He does still have a communicating hydrocele...this is given a year to clear up, but does increase risk of hernia and we have to watch that closely. This is a common finding in male babies, but I have found that it seems of the male hydrops survivors I have spoken to (well, their mothers)...they have almost all had it. Interesting. This seems to be the case with many little things, such as his pectus excavatum (thought to possibly be due to bone development while lungs were not inflated) and his nevus mark on his forehead. All newborn variants which seem to effect most of the hydrops babies....it is interesting to say the least, but still difficult to establish any normals with these children.
On a very positive note, he was 9 lbs 4 oz today which means he has gained a 1 1/4 lb since our visit two weeks ago...Mama's milk is amazing stuff!
I think what is important to gain from my current worries is that in truth, any of my children can still get sick and I can protect Auguste no more than I can my other children...life is fragile, and these children are just on loan to us for a while. I had a friend describe having a child as being willing to let your heart run around outside your body...and that was the most accurate statement I had ever heard...I have four hearts running around and I can only do so much to protect them...and the rest I have to have faith and trust God to take care of...
He got us this far.....