Final Visit!

We went to Syracuse for one last visit before the c-section.  We visited the perinatalogist and had one last anatomy scan.  Katie is looking great, growing well, and is estimated to be 5lbs4oz and 15%!  Her percentile went down a little but she is so big now they were having trouble getting a good head measurement which figures prominently in the size calculation. 

 

Then we went to the pediatric cardiologists for a final fetal echo to check Katie’s heart.  This is our fourth fetal echo because every time Katie has been in position that they could not see all the parts that they needed.  This time they could not get any good pictures of the heart EXCEPT the one part they needed!  They got great pictures of the pulmonary artery which really helped with the diagnosis.

The cardiologist, based upon what he was able to see this visit, no longer thinks the emergency surgery in the first few days of life will be necessary.  The pulmonary artery was a little narrow, but the blood flow was strong, the rate of blood flow was only a little above normal, and everything else was looking pretty good.  Of course, there are always variables which could change the situation, but for now we are thinking we will be able to hold off on surgery until Katie is 4-6 months old!

We will, of course, know even more once Katie is born.  Just after birth the doctors will do another heart echo and will then be able to get really good pictures of every part.  Then we should go into a ‘wait and see’ pattern of regular check-ups to catch any sign that her heart or lungs are starting to strain.  Some situations can be helped by medications, to keep her healthy until she is older, and then will ultimately be fixed by the surgery.  

We were also told during the ultrasound that Katie is taking practice breaths.  This is totally normal for all babies at this age, but it was really awesome to see.  Her diaphragm was moving, her belly was getting bigger and then contracting down, pushing fluid into and out of her lungs.  Very cool!

It really was wonderful news all around.  Now we get to relax and wait to meet little Katie!

Here we are at 37 weeks.  Officially full term!

Nice moment

I have been going to our local doctors once a week over the last month for general checkups to check Katie’s heart beat, check my blood pressure, etc.  This week I met a new doctor because my regular doctor was fully booked.  As soon as the new doctor walked into the room, she asked if she could give me a hug.

I am always up for hugs, so yes, she could.  Then she told me she really wanted to thank me for keeping my baby.  Just recently she had a follow up appointment with a woman that had chosen to terminate her baby with Down syndrome.  The doctor said it was so lovely to see me on her schedule, and know that I wanted to keep my precious baby.  She also told me that she had recently attended a magic show put on by adults with special needs, many of which had DS.  She said it was the most amazing and inspiring show she had ever seen.  

So far on my journey I have not had anyone say anything negative about our decision or Katie.  Everyone I have encountered has been incredibly supportive and positive, and a few have not known what to say or have chosen to remain silent.  I am sure I will encounter negative comments in the future, but I will always have these special moments to remember and remind myself that any negativity is a reflection on that person’s weaknesses, not Katie.

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!