After having those bad cramps the other day, I started to doubt that God would allow this baby to live even if it was only for a few hours and I felt angry. It's bad enough that Gracie may only live a few hours but even a few hours seems like a miracle to me that I would be so grateful for it. But if I miscarried and never have the chance to hold her while she is alive, it seems so not meant to be or from God. All of our days are numbered and no one really knows when that last day will be so staying present in the here and now and living each day to the fullest becomes really important. Just enjoying every minute of this pregnancy while she is alive in me so that I don't miss that is of the upmost importance. Enjoying Gavin and Laiman and staying present with them. Enjoying each and every time that Gracie flutters and kicks is what matters. I think I have an additional montra. Stay present and enjoy each moment, our days are numbered. This attitude has to be better for Gracie than being angry all the time.
Questions Answered by Wendy
Wendy our favorite geneticist called today to give a confirmation of our appointment time with the pediactric cardiologist that we requested. She asked me where we were going to deliver the baby. I told her what Jerri the other geneticist told me last Friday, that we were to return to our local doctor who would be following us from now on. I told Wendy my concern that if our baby happened to be one of the one's who made it to a live birth, that I wanted to have all the interventions and support she would need. Wendy agreed with me and said that our local doctor would need to send over another referral to the perinatologist. She said we would need to deliver at a level 3 unit. She also suggested that we consider Salmon Creek Hospital in Vancouver because it would be so much closer. She said that the ultra sound and echo that they did at NW perinatology did not show the extent of her problems, it was only to determine if there were any markers consistent with trisomy 18. She said that the amnio confirmed that there is trisomy 18 acrossed all 15 cells that they looked at. The amnio also confirmed that she is a girl. The cardiologist could not conclude the extent of her heart problems with the echocardiogram that was done because the position of the baby at the time they did this echo was not so that he could see for sure how bad her heart was. So he will repeat the echocardiogram when we come Nov.19. Wendy said that we don't really know the extent of any of the problems we just know that there are likely problems.
This was a relief to me because I wrongly got the impression at this last echo that the heart was really bad and that the other problems could be really bad as well. I am encouraged. I don't think I will work with Jerri anymore I felt like she was writing us off and not giving us good advice about being followed by my local doctor who is a great doctor but is family practice doctor and not a specialist. I researched Salmon Creek Hospital and they just opened a new NICU where there is a separte room for each baby and a place for the parents to sleep in each room. Also one of the bloggers I read about who had her baby with trisomy 18 about a year ago, delivered at this hospital and had a recommendation for a perinatologist and a neonatologist. I don't know if Gracie will make it this far, but I feel much better getting a plan in place in case she does.