Heart again

We had our second fetal echocardiogram to check Katie’s heart.  Last visit we learned that there is a hole in her heart but because of the way she was facing they could not tell the size.  This time she was in a perfect position to get a very good look.  We were sad to learn that Katie’s hole is large.  The hole affects all four chambers of her heart and the valves between them.  Her new diagnosis is Atrioventricular Septal Defect or AVSD.  This is very common in children with Down syndrome and is totally fixable with a single surgery.

Since the hole is large, there will be some hurdles in the first few months of life that might cause her to struggle, or grow slowly.  It is all variable by each child, heart resistances, and chamber pressures, so it is hard to predict exactly what will happen to Katie.  If everything works in her favor her surgery will be around 6 months of age.  If everything does not work in her favor the surgery could be any time before 6 months whenever she starts to struggle.  The goal is to get her as old as possible before the surgery but before the heart puts too much strain on the lungs.

In reality, this larger hole does not really change the plan that significantly.  She was already going to be monitored closely up to her surgery.  We will probably visit the Pediatric Cardiologists every two weeks to a month until the surgery.  Following the surgery and a few months of recovery, she will visit the Cardiologist once a year.  Now, there is more of a chance that the surgery will be at a younger age and that she will be weaker, but following her surgery the prognosis is exactly the same.  She will have no restrictions on her activity and her growth will catch up, usually by age two. 

We are happy that we know the situation, that the doctors are knowledgeable, capable and that they can fix it.  We are sad that Katie will have to face this complication and just want the best for our little girl.  It doesn’t seem fair that her start to life will be so difficult.  She is definitely a warrior in the making and we pray that God give us peace, protect our girl, and that the rest of her body is as healthy as possible.

July in Texas

It has been a while since the last update.  Ellee and I went to Texas for three weeks to visit all her grandparents as well as my brother and his family.  Mike stayed in NY and worked and went to a scientific conference for a week in New Hampshire.  Although we missed Mike like crazy we had a wonderful time with the Texas family.  

The highlights were going to an amazing jungle gym maze and watching Dora with Grandma and Grandpa; swimming and playing with the cousins; school supply shopping with Grammie; silly time with Gramps and the ‘dooter’; and constant entertainment from Turbo (the cat!).

We also got to spend the Saturday after the 4^th of July with my mother’s cousins and their families on the farm.  Ellee got to see lots of dogs, horses, goats, cows, chickens, and cats; ride the tractor; play games; and watch fireworks!  Ellee loved the fireworks and is still talking about them.

Grammie, Ellee and I went to Galveston to show Ellee the ocean and beach.  Before the trip Ellee thought the lake near our house was the ocean so we ‘had’ to educate the little one!  We figured the Gulf of Mexico was close enough to being the ocean for a little girl.  She was ecstatic.  The second she saw it she was bouncing out of her skin; she HAD to get in.  She played in the water, explored the beach, dug for sea life in the sand, collected shells, watered the seaweed that had accumulated on the shore, and jumped over the waves.  It was probably the highlight of her life so far.  We also got to see my good friend Melinda and her children on our way back through Houston.  Melinda’s children are a year older than Ellee and it was lovely watching them play together and see where Ellee will be in a year’s time.

We also took some time to learn more about Down syndrome. Grammie, Ellee and I took a road trip to Arkansas to visit a friend named Rebecca.  Rebecca has five children and her youngest, Philip, has Down syndrome.  He is four years old and is amazing.  Ellee and Philip had a great time playing together while we got to hear Philip’s story.  He had a rough start with some complications that we do not believe Katie will have.  He had to stay in the hospital for three months following major surgery on his heart and digestive system.  He is doing so well I never would have guessed his start was so complicated.  He is a slow eater and communicates through a mixture of words and sign language but otherwise he was just like any other kid, and of course perfect.  It was wonderful to meet a family with recent experience, to hear their advice and wisdom, and get a little glimpse of the joys ahead for our family with Katie’s arrival.

Then, two days after Ellee and I returned from Texas, we moved from our two bedroom apartment into a three bedroom!  It was a busy week, but the old apartment is cleared, cleaned, and returned.  Our new apartment has two functioning rooms, beds, and bathrooms as well as a functioning kitchen, computer, and TV.  We still have a lot of work to do to get it completely done but it is totally livable.  The best part of the new place is Ellee basically has a private playground.  There are two playgrounds in the complex, a larger one where everyone plays but also a smaller one which happens to be right outside our patio door.  I can see her playing out of our windows and she is trilled.  So far she has played on the park every single day!