The Plan!

We had an appointment yesterday with the Perinatal team in Syracuse.  All the information was good news and we now have a rough plan of what is going to happen!  

First we had another ultrasound to check all the organs except the heart.  Katie is growing very well.  She is estimated to be 4lbs12oz and is in the 22 percentile!  She is bigger than Ellee was at this time.  All of Katie’s organs are looking great, the kidneys, intestines, stomach, brain, etc.  Even the ventricles in the brain that were a little above normal in the past ultrasounds, are now within the normal range!  They did not look at the heart, so there is no new information.   

There are well established statistics that Down syndrome babies are at a very high risk throughout pregnancy for ‘fetal demise’ basically miscarriage or stillbirth.  I asked how Katie was doing in this regard and the Perinatalogist assured us that Katie is looking so great, that we are not in that high risk category anymore.  Katie will be born alive and then we just have to manage the heart.  We were so happy to receive this news!  

The Plan

1. We will have one more meeting with the pediatric cardiologists and one more meeting with the parinatal team on the same day in about two weeks.  They are supposed to call me with the coordinated appointment time soon.
2. We are scheduling a c-section for 39 weeks which will be around Nov 7 (less than one month from now!!!).  They are supposed to call me with the c-section date and time as well.
3. If all goes according to plan, Katie will be born by c-section in Syracuse.
1. If the heart situation needs an immediate fix, Katie will be transferred to Rochester for surgery and I will join her as soon as they can release me from the c-section.
2. If the heart situation is alright, we will stay together in Syracuse until Katie is eating well.  I can stay at the hospital for four days and then I can move to the Ronald McDonald house, if she stays longer than me.  Then she will be released to go home, we will monitor the heart with regular visits to the pediatric cardiologists, and hopefully make it to about 6 months for the one and only surgery. 
4. We also have some contingency plans if Katie decides to come early.  We will move as soon as anything happens and go straight to Syracuse.  If labor starts too quickly, or we get caught by surprise, I will go to the local hospital and they will decide if I need to deliver there or they can safely get us to Syracuse. 

Mike and I are feeling great!  We both wanted to leave the appointment with some form of plan and that is exactly what happened.  We have spent 22 weeks reading, learning about DS, receiving good news and bad news about Katie’s health, and worrying if she will even survive to birth.  We now know that we will get to hold and love our little girl and that is all that really matters.  We know the different possibilities regarding what can happen with the heart, and all are manageable and fixable.  We just need to take it day by day, and enjoy the journey and our little family.  A friend recently reminded me “to be patient with the plan God has for your lives”.  This is exactly right.  I will never be able to see into the future but I can be patient and let the plan unfold.

Here we are at 34 weeks!