Thursday, October 25, 2012
A Good Day Indeed
This is a photo of Auguste's beautiful quilt made personally by my friend April at: http://themeadowslife.blogspot.com/
I love the way the boy's arms are raised in the air...beautiful imagery.
We had a doctors visit this morning and it went really well. I am so pleased because to be honest, even though there are still uncertainties, I truly feel hope after this visit.
Auggie's pleural effusions continue to improve and where a few days ago he was mild/moderate, today he has mild mild effusions. His ascites it also continuing to improve. His heart rate is strong (140) and his lungs are large and his heart is midline. All good.
Dr. Mark Johnson http://www.chop.edu/doctors/johnson-mark-p.html?view=3 saw us again today. Although there are more than 50 different causes for chylothorax, he said his "gut feeling" was that Auguste had come in contact with a virus. The immune system does not start to develop until week 20-22 and thus his lymphatic system was in charge when this happened, and the bodies response to the infection was with the chylothorax and dumping of lymphocytes, thus causing hydrops.
I believe this must have started happening right around the time my Aunt Martha phoned me and said she felt a strong need to pray for me and was anything going on...because only a few weeks after that call was when we discovered hydrops. At the time I could think of nothing, but asked for her continued prayers.
This is fortunate because Auguste has been strong and Dr. Johnson thinks he has probably cleared the virus and is now trying to clear the negative response to it. Getting the thoracentesis when we did was great because it was right when his own immune system was developing thus giving his body a head start in clearance.
Dr. Johnson once again feels very strongly that Auguste will probably continue to clear this fluid and that it is very likely to resolve completely. He still feels very strongly about watching Auguste extremely closely until 32 weeks, because in his research, he has seen the fluid resolve completely for week upon week, and suddenly develop a huge pleural effusion out of no where, however, we are still very good candidates for shunt placement if that occurs. After 32 weeks, if the fluid is cleared, he feels we would be out of the woods. I am 23 1/2 weeks right now, so a long way to go still.
In the absence of mirror syndrome, or increasing effusions or ascites, he feels that early delivery may not be necessary and we could theoretically go to full term and perhaps even avoid NICU, but if any fluid remains on his chest at delivery, chest tube would be necessary.
I would really love to avoid premature delivery, as most of you may remember our sweet Bluebird and how difficult is was to see her intubated and struggling to breath, and she was born at 34 weeks when most babies do not have as many problems at that time. Therefore, the thought of having a "wimpy white boy" at 34 weeks, who already has had hydrops, certainly is scary to me. I am delighted that I may be able to carry Auguste to full term.
He felt that we were jumping a bit far ahead of ourselves and need to keep ourselves reeled into the present, but that if things stay the way they are or improve by Tuesday, then I can go home and be monitored in Charlotte for a while. Perhaps until he is delivered.
We do still have a very long way to go, but nothing about this visit today could be thought of as negative. I am so happy to finally be getting answers and to be given some real hope. Today I truly feel like we are going to make it to delivery, and that I will be able to nurse him and nurture him, AND that Auguste will be in our 2013 Christmas photo.