Snow snow go away

Amazingly enough, it looks like our next visit to Boston this Wednesday will be hindered by snow. So much for getting a due date this week. On we go to week 36!

Prescribed Rest

Well, it's official. I am officially on hiatus from work as of tomorrow at 5. The doctors let me know yesterday that I was to stop working ASAP to destress my life and hopefully give Riley the opportunity to cook for a while longer.

While this is such a scary thing for me (those of you who know my work ethic understand), I know that I need to do this for our new little one.

Sandy

Trip to Boston

We had quite an eventful trip to Boston today starting with a wonderful nor'easter that dropped 20" of snow on us. We met with the doctors at Boston Childrens (for Riley) and Brigham and Womens (for Sandy). While we did not get the due date set, here is what we did get info on:

Today's MRI showed about 16% lung volume (about 15% at last visit). Predictions for this range are:
>15% about 1/2 need ECMO and almost all survive
<15% almost all need ECMO and about 1/2 survive

Everything else will remain the same as we thought previously regarding Rileys care after she is born. If she will need ECMO we will probably know within the first 24 hours. If she does go on ECMO, she will need to come off by 3 weeks.

My care will hopefully continue to be managed by the midwives here in western MA for the meantime and we will soon be given an induction date which is around the 38 week mark. I am 32 weeks at this point and time is flying quickly.

Hope all is well with everyone. We will have more updates soon.

Welcome to Our Blog

We started this blog to keep family and friends up to date on how everything is going with Riley and our family, as we go through our CDH Journey. 

After we initially found out about Riley's condition in October, we made a trip out to Boston and met with the team of nurses and doctors at Boston Children's Hospital (CHB) who will be helping us through this time.  Here is what we were told:

1. Riley has left sided CDH with a small amount of liver up.
2. There is a moderate amount of lung visible which puts us on the borderline of possibly needing ECMO (heart/lung bypass) when she is born.
3. We will be induced around 38 weeks and are hoping to have a daytime/weekday delivery at Brigham and Women's hospital.
4. Survival rate for CDH babies at CHB is about 80-90% in any given year (was 50% in 1987).
5. Riley will be put on a special ventilator immediately after she is born and then transferred over to CHB.  Brian will be able to go right over to CHB with her and the doctors. 
6. Riley will have repair surgery within the first week or so, once she is stabilized.  This is considered the 'easy' part of of the recovery process.
7. Riley will spend anywhere from 1 month to 4 months in the hospital.
8. Issues after she comes home may include:
• Breathing and eating
• Possible G-tube 
• Possible oxygen
• Reflux
9. There is a CDH clinic at CHB that we will go to as Riley grows up, in order to track her growth and development progress.

We are very optimistic that all will go well.  We are so lucky to have so many people in our lives to help us in this time.  We will be going out to Boston again on January 12th and will have more information (and hopefully a due date!) at that time.

Initial Information Email

10/28/2010

Hi all,

This is an email we wish we didn't have to send.  Last Tuesday we went for a routine ultrasound and found out we were having a baby girl.  We also found out that there was a complication with the pregnancy.  Riley has been diagnosed as having CDH (congenital diaphragmatic hernia).  We went for a high level ultrasound today to confirm this diagnosis.

While many of you have probably never heard of CDH it is a birth defect that occurs at the same rate as spina bifida or other well know defects (about 1 in 2500).  There is a hole in her diaphragm through which her organs can travel through into the chest cavity.  The presence of the organs in the cavity impedes lung growth and may prevent her from breathing when she is born.

We have done our initial testing at Baystate but are being referred to Boston for more care.  The rate of survival in CDH babies is about 50% but Boston Children's Hospital is about 90% so we are hopeful.

We are doing well at this point and will be tackling this head on without hesitation.  What we do know is that we cannot do this alone and are asking you to please keep us in your prayers in the coming weeks and months.  We will keep you all updated when possible, but please do not post on our Facebook wall regarding this.  Thank you in advance for all of your love and support.

All our love,
Brian, Sandy, and Chase