What we learned

Sweet Little Baby J

 We got to know Baby J very well after watching her on the monitors for well over 4 hours yesterday.  She’s beautiful (pictures attached) and loves to suck her thumb.  She got very frustrated at all of the sensors and made a game out of kicking or punching them every time she could find one.

So yesterday we went through a level 2 ultrasound, a fetal echocardiogram and a amniocentesis. Here is a summary of her medical condition:

• She has congenital diaphragmatic hernia. This means that a hole in her diaphragm has allowed her stomach to grow inside of her chest cavity.  Her stomach is retarding the growth of her left lung and has pushed her heart to the right side of her chest.
• Except for being in the wrong place, her heart if perfect (HUGE PRAISE!!!)
• Her liver is in the right place.  If it were also herniated, we would be looking at a much lower chance of ever bringing her home. (HUGE PRAISE!!!)
• Her Lung to Head Ratio, LHR, (left lung, head circumference ratio) is 1.2.  1.4 and above is ideal, 1.0 and below is pretty hopeless.  We are in the middle range, and this number may still go up in future ultrasounds. (HUGE PRAISE!!!)
• As far as they can tell, this is isolated CDH.  As long as this is the case and no other complications present themselves or develop, her overall survival rate is estimated to be at 90%. 

Challenges still ahead

• There is still a 10% chance we won’t ever get to bring Baby J home.  The health and development of her right lung are of our greatest concern.  We also have to be aware that further complications, spontaneous miscarriage, preterm labor and even still birth are more likely to happen during this pregnancy then others.
• After birth, Baby J will need at least one surgery and several weeks in the NICU to recover.  In addition to complications from this surgery, her ability to feed, thrive (i.e. grow), breathe on her own and the continued development of her right lung will all be closely monitored. 
• Long term, Baby J will live life with only one fully functioning lung.  Hopefully this just means we’ll have to remind her not to run so much and never to smoke.  Realistically, she may be developmentally delayed or impaired, both physically and mentally. She will need to be closely watched for years and receive followup care and surgery as needed.

What comes next

• Monthly Ultrasounds at UCSF, followed by more frequent checkups as we approach delivery.
• Delivery via c-section at UCSF in week 38 or 39, followed by a 3 to 8 week stay in the NICU.
• An otherwise normal and uneventful pregnancy.  I am not on bed rest, restricted movement  or anything else.  In fact, the doctor stressed having as normal as possible next couple of weeks, taking care of each other and getting our rest.  Once this starts, it will be stressful, exhausting and demand a lot out of our entire families (even Dillan). Spending our energy on bonding and growing as a family now will be vital to pulling us through these hard times ahead.
• Closing escrow on the house.  In the background of all of this, we are still in the process of buying a house.  Which means in the next couple of weeks we need to pack, move, paint, garden, polish, replace, ect. ect. ect.
• Figuring out the logistics of work, laundry, food, taking care of Dillan and Dakota after Baby J is born, especially while she’s in the NICU.  We especially want to make sure Dillan never feels left behind, forgotten or otherwise marginalized.

Prayers

She looks just like Mommy!

We don’t image for a moment that the road ahead of us is an easy one.  There are so many factors, any of which can completely change everything in a moment. 

• Praise Him for the good test results we did receive.
• Praise Him for the love and grace He is showing us through our doctors, friends and family.
• Praise HIm for writing so many verses that speak to our hearts in this time.
• Ask Him for His will be done. 
• Ask Him to prevent further complications.
• Ask Him to allow us to relax and pace ourselves.
• Ask Him to continue to provide the world’s most amazing doctors to manage Baby J’s health
• Visualize coming to visit us in our new home with our two kids and Dakota running around creating total havoc.  Pray for that image to become a reality.

Congratulations if you read all of this.  You are a great friend.  Questions are welcomed - many of them help us remember what to ask the doctors next time.