This morning we got to see sweet Auguste. He was sitting breech with his face nuzzles against me, hands by his face, heart beating with a perfect heart rate of 146. He is still growing and developing on schedule. Yes, there is still fluid on his chest and abdomen. It was really hard to tell if it was more or less, and we did not have the high risk doctor to tell us, but we have learned that it not quantitative, and it is really the presence that is troubling.
We were able to meet with one of my favorite doctors who is good at being positive with us and were able to have a lot of questions answered. So far all of the testing has come back normal. There are still some rare things pending, but the TORCH (Toxoplasmosis, Other viruses, Rubella, CMV, Herpes) have come back negative as well as most chromosomal disorders, and cystic fibrosis.
We have our cardiology ultrasound on Monday and on Wednesday we are going to the Levine Children's Hospital in Charlotte to be re-evaluated and try to get some further answers regarding lung development and possible interventions. http://www.levinechildrenshospital.org/body.cfm?id=866 We are excited about that as it is only a 2 hour drive and we can go while kids are in school. However, we are already looking at Children's Hospital of Philadelphia as they are supposedly very cutting edge regarding hydrops. We are interested in the thoracic shunting in utero, and are unclear as to risks and benefits. It is certainly not standard of care but we want to at least be able to have an open discussion about it since we have seen some success stories with this intervention. Of course, the ECHO on Monday will determine if we need to go this route, as there still could be something we have yet to see going wrong with his heart, and if that is the case we will need to move a different direction.
I have learned so much in the last week, and I am still learning a lot. I have found a lot of support. http://carlihope.blogspot.com/p/hydrops-information.html has been a very useful blog, and the owner of the blog has been very supportive and given me lots of direction. Thanks Katie! She also directed me to www.tinyheartbeats.org, which will be sending me a fetal heart doppler, hopefully next week. Until then, one of my fellow nurse practitioners is going to try to dig out an old doppler she used in the past for other purposes, and if it still works, I can maybe be able to have the peace of mind I need without leaving work.
The past few days I have felt very hopeful and confident. I am not sure if perhaps this has all just made my faith stronger, but certainly I feel more of a peace.
The kids like to talk to Auguste and even Emily kisses my belly and says "Luf You Auggie". I know he hears us and I want to will him to stay strong and come join us soon.
I have had so much prayer and support. Today I received a random email from a grandmother who had a granddaughter who survived hydrops 4 years ago and is healthy today. I am not sure if she received my email address perhaps from a forum where I may have asked a question, but hearing from her was comforting. Unfortunately, internet searches offer many more horror stories than survival ones. I hope that when all of this is passed, I will be able to use these blog posts to offer comfort and reassurance to some other mother who is awake all night searching for hope.
I was reading my Bible the other night and a small card fell out of it. It was about the size of a business card, and had a precious moments photo on it, on the back it said "Let's conquer the impossible together". It was from my best friend, probably Given to me in college for some purpose. Who would have known 15 years later it would be so relevant.
Tonight I found an old charm I used to wear often, but had long since lost (I have a little girl who likes to borrow my 'fings'). Anyway, I found it tonight in the bathroom, but it looks like it has been on a journey through the sandbox and is no longer wearable. But, it is a small mustard seed, with the verse on the back that says "If ye have faith as a grain of mustard seed, nothing shall be impossible unto you" Matthew 17:20.
So I lay in the bathtub tonight and admired my beautiful swollen belly, and I rubbed my charm and stared at that small mustard seed. I believe. I have much more faith than that mustard seed.
I have found myself staring at newborns with more awe than usual (because lets face it, I have always loved children), but I was specifically taken back by a photo of a baby nursing yesterday. I haven't stopped thinking of it, and thinking of all of our sweet images of Auguste with him nuzzled to me in the exact same way. I believe! I am holding out all hopes that my Auguste will be nursing healthily in a few short months.