Today's cardiology appointment was better that I had hoped for. We got to see her heart beating and a few shots which showed us she has gotten bigger. We both really liked the cardiologist and felt the he was very honest and forth right with his assessment of her heart. He said that she does have a large ventricular septal defect and an atrial septal defect and a leaking valve. He said however that these will not be the limiting factors that shortens her life. And these problems do not need to be repaired right a birth. And babies with these heart defects can live several months.
They do repair these problems at about 2-3 months when baby is a little bigger and can handle the surgery. He said that most parents of babies with trisomy 18 do not have their babies go through the surgery, however. Just because everyone else decides this way doesn't mean it's the right decision for us. We have to live with our decision just like every other parent does. We felt like he was open to whatever we decided about surgery if we got that far. So we pray that God will give us wisdom on what we should decide because we currently don't know what to do. We'll face it when we get there. We feel that his assessment of her heart was encouraging, that she could live through birthing if I can carry her long enough for her to have fully developed lungs and not go in to labor too early.
He did however point out that many times there are other problems that will shorten lifespan in these babies with trisomy 18. For example the breathing can be affected if the part in the brain that senses low carbon dioxide levels isn't working and isn't telling the lungs to take a breath. They won't be able to tell in utero if this is her problem however.
We wrestle with how aggressive to plan for her care. Knowing that if it was Gavin we would do everything possible to help him live as long as he can live. If he needed a heart defect repaired in order to live we would make that happen. So why wouldn't we treat Gracie the same way. I don't want to add regret to the pain of loss. I also don't want to regret by adding to Gracies pain or allow her to suffer if it's not going to add to her life or quality of life. These are not easy decisions and we pray that God would show us what to decide and that we'll have peace about it.
We did however meet with a new perinatologist different from the last time we were there and I did not have a good feeling about her. She was not the warm caring compassionate doctor that I'm used to choosing for my care or the care of anyone in my family. I could go into the details of all that she said that made me feel like I couldn't trust her but I won't. Let's just say I won't be seeing her again and I'm going to try and forget about her.
We plan to stay with our local family doctor until I'm close to 31 weeks and then we will meet with the perinatologist who has been recommended to us twice, at the Salmon Creek Hospital in Vancouver. A much closer hospital than St. Vincents. We feel that even if we choose comfort care that we would like to go where they have dealt with these situations more frequently. And we still are praying that we will know in our hearts exactly what to decide about comfort care or aggressive care for Gracie.
I told Laiman that we should be able to face any fear or anxiety ridden situation that comes our way with no joy lost. After practicing my montra over and over again "don't let your fear take away your joy," we should be well versed at letting joy permeate any situation after going through all this.
God is Still With Us
It wasn't easy to listen to any of them tell me the kind of terrible problems she would likely be faced with. I wouldn't say that any of the doctors we saw today tried taking away our fear. And I wouldn't say that any of the doctors helped relieve any of our anxiety but I was able to allow God to fill me with joy despite what they had to say. I felt him beside me showing me that He was in control not them.
3 weeks ago