On Sept. 25, Mickey and I went in for our routine 20 week ultrasound. Because I am 36 years old, and therefore considered "advanced maternal age" this ultrasound took place on the high risk floor because they have more advanced settings on the ultrasounds.
Our sweet baby boy, Auguste, was found to have non immune hydrops. This essentially means that he has a fluid accumulation in two cavities of his body, in his case, both chest and abdomen. This can happen for a variety of reasons from chromosomal disorders, to infections, to anemia, and so forth. Unfortunately in most cases, this is a fatal finding. In rare cases, however, this absorbs on its own and the baby goes on to develop naturally. In some cases, if a cause for the hydrops is identified, doctors can try to intervene and help this with a variety of methods.
We began further testing immediately, with more lab work and amniocentesis.
So far, we know that the main chromosomal disorders, including Down Syndrome, trisomy 18 and trisomy 13 have been ruled out. This is fortunate because the prognosis for those disorders with hydrops is very poor. We have also been able to rule out parvo virus and cytomegaly virus, which is somewhat discouraging because there is a better prognosis when in infection is the root cause.
There are many further tests that are still pending. We will do another ultrasound on Oct. 8 with a cardiologist to further examine his heart. We spent a lot of time studying his heart and other organs, blood flow, and development and so far everything else looks completely normal. We also have a DVD from his 16 week ultrasound when we found out the sex, at which point everything appears normal, which seems to indicate something more acute has happened.
Our doctor has told us that now is a time to truly seek a miracle. And we believe he is a miracle. He is alive and well at the moment.
We are praying hard for him, because he needs to get well. In order for his lungs to keep developing and for him to be viable at birth, this fluid has to reabsorb. Otherwise, he will could die in utero, or shortly after birth.
The internet is statistically quite bleak, and I have cried myself to sleep at night desperately praying for a miracle. Mickey feels confident that he is well now and he will continue to improve through the next weeks.
It has been a very hard few days, because when you work in oncology, as I do, it is easy to get jaded regarding the implausible It happens, but everyone is praying for a miracle and it is hard to feel like you are likely to be one of the rare few that get one.
My father told reminded me recently that we do not trust a God of internet statistics, but we trust a God of miracles, and that those miracles are unlimited. UNLIMITED!!!
We have only just decided to share this story with everyone, because it is important to us that people remember that our sweet Auguste is alive and that their words of encouragement and prayers for us are directed at his ultimate healing. We do not want people to give up hope and we want people to continue to have faith that our baby boy with survive this.
Mickey and I have not been trying to keep this secret, but we both deal with these things differently. We decided to start this blog to give people the information they needed. We know there is a lot of love for us out there and we feel so blessed by it. We know that people care for us and want to know what is happening in our lives. I know there are a lot of questions and we will try to update this blog as we find out more answers.
I certainly can use words of encouragement as often as possible, because I feel like the past few days and the coming days will continue to be full of sleepless nights and worry. I am trying to stay positive and healthy because that is important for my growing boy. So if you have a song or a verse that you think will help me with hope and faith in the miraculous, please send it my way.
Mickey would like to deal with this more privately. Those of you who know him well know that he lost his brother when he was a senior in high school. It is hard for him when he feels that people, no matter how good intended they may be, are pitying him, especially since Auguste is alive and we need to know that people not writing him off. That is how it feels to him, and therefore, please understand if he does not desire emails and phone calls regarding this.
We both truly desire your prayer and hope and faith with us that our sweet son will be in our arms in February, healthy and happy. Please have faith with us that our little miracle will be completely healed.