Tuesday, May 24, 2011

I have a diagnosis!

First things first, Aaron! Ronny and Stephanie (Nana) went up to see Aaron last night, I wasn't feeling too well so I stayed home. Stephanie has pictures on her camera so I will have to download those for you later. Aaron was doing great and pretty much had an easy day yesterday. He did have a head ultrasound and the results came back normal, no bleeds. With two normal ultrasounds the next one will not be done for another month. I went up to see him this morning. When I arrived everyone seemed to be a little on edge and he was having another x-ray done. I asked what was going on and the nurse practitioner said Aaron didn't seem to be himself this morning. I looked up at the monitor and noticed his heart rate was on the low side. I asked what his O2 stats were at and they said they had to up him to 60%. That is high for him. They checked his stomach and saw he had not digested his last two feedings and his temperature seemed to be really low. I sat down and just talked to him. Shortly after, his heart rate came back up and they had to start lowering his oxygen level. His temperature also came back up to normal. They did give him his anti anxiety medication but he seemed to settle down before that had a chance to kick in. The NP commented that he just needed me to settle him, that was bitter sweet for me. I know it helps but the times I can't get there to help they have to medicate him, that I don't like so much.

I was there for Rounds and met his "team": neonatologist, nurse practitioner, respiratory therapist, pharmacist, and nurse. There was one other person there but I don't know what job they had. They started throwing out all kinds of numbers and letters that I'm sure stood for important things. Afterwards the neonatologist and nurse practitioner came over and explained a few things. His glucose, blood pressure, blood gas, triglycerides, and a host of other important levels were all great! I think the term they used was "you couldn't ask for more perfect numbers". His platelets are low but they will let them go a little longer before they do another transfusion. They are going to up his fat emulsion to 1.0 up from .6 (yes they are pumping fat into his veins!). They are going to lower his breathing pressure on the high flow machine from 2 liters down to 1.5 liters and see if that helps with whatever was going on today. The x-ray came back looking good. The neonatologist ordered another EKG for tomorrow because he is still concerned that his heart is rather big for his size. We'll have the results sometime tomorrow.

On to my news. My specialist emailed me today with the pathology report on my placenta. It seems that I have something called Chronic Histiocytic Intervillositis (CIUE). Its difficult to describe but I will do my best. It looks like histocytic cells form and cause severe inflammation in the placenta causing lesions. These lesions then get covered up by fibrin deposits. To quote my doctor, "It's not well understood and we don't know what causes it." She sent us an abstract to a study done in France, I think, where over the course of 9 years they studied 69 pregnancies with this diagnosis. 69 in 9 years, can we say RARE! Surprise, not really. I sent her some questions I had and will see what she can find out.


christa @ enSTYLEpedia said...

WOW! It sounds like Aaron is doing really well! I hope that fat does his body good! If I could give him some of JJ's I would!!
Glad that you have a diagnosis...but not a lot of answers?? Thinking of you.

Sant Family said...

Great job, Aaron!

And congratulations on scoring a totally obscure diagnosis, Denise. Clearly not many women can say that!

Thanks so much for keeping us up to date!


vocalise said...


Peggy Glasmann said...

It's great to have a diagnosis. Too bad it's a few babies too late! What now? Any treatments? Any cures? Any ANSWERS???? Your wonder boy is doing sooooo good! happy for all of you!!!!