26 week appointment

We made it to 26 weeks!  Woohoo!

I had my 26 week appointments today.  It was emotionally tiring, but overall a very positive experience for Matt and me.

First, we met with a consultant and a fellow from Neonatology.  I was a little bit nervous since I work with them, but it was actually such a relief to see friendly faces and doctors that I trust with my whole heart.  The purpose of the meeting was to discuss our goals and wishes for Elise after her birth.  We went through many possible scenarios.  We discussed stillbirth, premature birth, term birth, resuscitation wishes, and what interventions could be provided.  They were very clear and straightforward with the reality of all of the situations that we could be faced with, while at the same time being compassionate and demonstrating that they understand that we are parents and that this is our precious baby, not just a chromosomally abnormal fetus.  I feel that we were offered complete support for our preferred plan of treatment for Elise.  We didn't have to fight for it and defend our views, and for this I am extremely grateful.  Of course, I knew that with these doctors we would never have to fight to be heard.  We have an amazing team of neonatology providers at our hospital.

Next, we met with a new (to us) doctor from Maternal Fetal Medicine.  I had basic vital signs checked, but nothing further at this visit.  We discussed my bleeding and contractions as well as lots of other questions that had come up over the past few weeks.  We also discussed my negative experiences with a few doctors since finding out Elise's diagnosis of Trisomy 18.  I feel that all of the doctors who have treated me so far have had good intentions, but executed their message poorly or have just had a really different view of what my treatment should look like due to Elise's Trisomy 18.  She apologized multiple times for what we experienced and explained that the MFM group of doctors has adopted a certain approach for parents of babies with Trisomy 18.  They want to be as supportive as possible to parents to help them achieve the kind of pregnancy and birth that the parents want in light of the diagnosis.  However, the doctor explained that the OB group of doctors are not all as supportive and some will refuse certain treatments based on the baby having Trisomy 18.  She assured us that when it comes time to have Elise, they will follow our wishes and support us and that they will work to give us the best birth experience possible.  It was such a relief to know that as a group, the doctors in MFM support us and the path that we have chosen to pursue with Elise.  The only place we may have to be dealing with those other doctors is in labor and delivery triage.  Believe me, I will be trying to stay out of there as much as possible!

Another thing that the MFM doctor brought up as we discussed our plans and our hopes is that we need to be clear about what we can and can't control.  She repeated it many times, trying to help me understand that we can make some decisions, but a lot of what will happen with Elise is ultimately not up to us.  I think I'm having a hard time with that concept.  I feel like every single decision I make will have a direct effect on whether or not Elise will be born alive or be able to come home with us.  I told the doctor, "I don't want to feel like I killed our baby."  I don't want that guilt haunting me for the rest of my life.  She was very compassionate in repeating and repeating that we cannot control everything and that she can tell that we are good parents who love our child and want the best for her.  I pray every day that God can help Matt and me accept His plan for her birth, life, and ultimately death.  One small prayer.  One simple sentence.  And yet...such a huge and difficult task.  I know that we won't be able to get to that place of peace and acceptance without God.  I just hope that we can get there in time for her birth. 

Our God is not a god of guilt. 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." -2 Timothy 1.7