MFM Appointment

Hi Everyone,

I had another appointment at Maternal Fetal Medicine (MFM) today for an ultrasound to check Eli's growth and to check my fluid level. I am so frustrated with doctors and ultrasound techs! I truly wonder if any of them really know what they are doing and/or talking about. I didn't meet with the doctor again today after the ultrasound, which I am finding very unprofessional and discouraging. I understand that nothing has really changed in Eli's condition, but I would think he would still take the time to talk to me about what is next. I have not spoke to him in probably 2 months. The tech just continues to tell me that everything is the same and they will see me next week.

Well, apparently everything is not the same. I am so frustrated that U of M said that Eli's chest measurement is small, when MFM has been telling me all of his measurements are normal. Also, U of M said that I have no fluid at all and MFM has been telling me I have around 1 cm (which I know is severely low, but at least it was something). Of course today, after hearing that U of M said there was no fluid MFM is now saying there is none. So, what happened? Did they measure the 1 cm incorrectly, or did the fluid go down? U of M said that it is common to mistake the cord or other spaces around the baby for fluid. Also, at one point MFM told me that the fluid had increased a little bit over a 2 week period. Then all of a sudden on the 3rd week there was no improvement. So, what happened since then? Did the fluid go down or did they just measure incorrectly? I wish I could get some answers. I don't know which doctor to listen to if any. Every ultrasound tech does things a little differently and I wonder what makes them so much more specialized than any other ultrasound tech. Also, all the ultrasound machines are different. The techs don't offer any information. I have to drag answers out of them. Today I had to even ask her what the heart rate and weight of Eli were, while I was panicking inside thinking something was wrong since she didn't tell me herself (they usually tell you at least that), but she said everything was fine. I am just so frustrated.

I understand that Eli's condition is extremely rare (how many times have I heard that in the last 3 years). So, I honestly think they really don't know for sure what is going to happen or what is happening. My doctor at MFM said he only sees one case similar to this each year. So, maybe they just don't know for sure and are only doing their best with the knowledge they have about the situation. Up until a couple of years ago, a baby with kidney problems like these was considered terminal. But now they are able to do dialysis on babies and they are able to do transplants once they reach a certain size. So many things have changed in the last few years. The doctors keep telling us how the lungs are the biggest issue, but how many babies are born extremely premature with underdeveloped lungs that eventually start thriving and breathing on their own? I know that these things do happen and I know that they can happen for my baby as well. I know that it is in most doctor's nature to give you the worst case scenario. Therefore, I refuse to give up hope now. I have made it this far and my little guy is still growing right on schedule (actually he's a little bigger than average) and his heart beat is nice and strong. These differences between physicians only help me increase my faith that they are wrong. We will only truly know Eli's prognosis once he is born. So, I will just continue to pray for my little miracle baby.

Thanks for listening to my long vent! Please keep praying for my little boy!