This morning, mom, Gavin and I cleaned up all the leaves in the front yard. We filled a huge garbage can and it took 2 hours!! Gavin threw a horendous fit before nap time because he wanted to wear his McQueen pajamas (in the dirty clothing laundry) and not the clean Buz Lightyear pajamas. I ended up taking a nap with him since it was difficult to get him calmed down. I needed a break anyways after cleaning up all those leaves.
Dr. Evans asked how Gavin was handling all this. He actually has thrown many fits this week which is not like him. Dr. Evans said that he probably senses something is wrong and one of his only ways to express himself is with anger. She also said that it is also pretty normal at this age (2 1/2 years old) to act this way. He has been asking me, "mommy's tummy hurts?" I tell him, "mommy is going to be just fine, but the baby is sick." I'm not sure if he understands. Dr. Evans says they usually only ask the questions that match their level of understanding.
Appointment with Dr. Evans
This afternoon, we met with Dr. Evans, my family doctor who I had planned to deliver Gracie. This is the first time we have had an appointment with her since we got the diagnosis. She did all kinds of research for us and gave me all of the abstracts of the studies she looked at and said she could get me copies of the full studies of any of them. There really isn't a lot of research on trisomy 18. She looked at 6 studies, with 40-60 participants.
What I found interesting:
1. in one study of 60 participants, none of the babies lived if the mom went into labor before 31 weeks.
2. So far it didn't seem really clear whether aggressive interventions were worthwhile or lengthened life or even improved quality.
So this doesn't really help us with making any decisions about the aggressiveness of the interventions that would be appropriate for her or not.
Dr. Evans said that we should have a lot better idea of the status of Gracie's heart once we meet with the pediactric cardiologist on Nov. 19. I really appreciate Dr. Evans, she has been so honest with us, as well as caring and concerned. She has had 3 other moms who had babies with trisomy 18: one terminated, one died during delivery and one lived a few hours.
We asked if we could consider delivering at the Salmon Creek Hospital if we end up needing to go to a level 3 unit. She said we could and that the cardiologist would be able to answer that better depending on whether she would benefit from any surgical interventions. Salmon Creek doesn't have very many surgical specialist so if she needs that, it would probably rule this hospital out.
Since the possiblility is very real (50/50 or 70/30 depending on who you ask) that she could die before she is born, we discussed how we will know this. I don't even want to think about this part and feel very deflated discussing these things with Dr. Evans. I like to stay positive but I'm finding it hard to consider this possibility. I'm suppose to be within 30 minutes of a medical center. By 24 weeks I should be feeling her kick on a regular basis and if not I'm suppose to call. If I have more than 4 contractions in an hour I'm suppose to call. I'm not going to see Dr. Evans again until after the cardiology appointment unless the cardiologist decides I ought to see a perinatologist instead of her. I have been feeling her kick a lot more, the last couple of days. We will start getting a plan together for who will watch Gavin for us when she comes.
We got to hear her heart beat, 144 beats per minute (normal, big smile), I measured at 22 weeks and I'm 21 1/2 weeks so this is good and if I can stay on this track I should be able to carry her until 40 weeks as long as she can make it that long. The excess amniotic fluid can make your body think your further along than you are and end up going into preterm labor. She did not know what the gap between the bag of waters and my uterus meant, it wasn't in the perinatologist report. This was just something the perinatologist pointed out at the ultrasound when we were given the diagnosis 2 weeks ago. He just said it was a problem. I was so overwhelmed with everything else we were told by that point I wasn't formulating questions. So I'm not sure how big of a problem it is. I will bring it up again at the cardiology appointment.
3 weeks ago