My mind is beginning to wrap around the reality of what’s happening.  I thought I was hugging Jason and Jackson as tight as I could  but the poor things can’t escape my embrace now.  I find myself rocking Jackson longer at bedtime and I’m having a harder time leaving him at school each day.  He’s waving bye-bye and I’m stuck at the door not wanting to go.

We received the amniocentesis and micro array analysis reports which showed all normal chromosomes and genetic makeup.  Nothing that connects JT to CDH.  The genetic nurse from Dr. Lo’s office explained that the technological advances available have yet to find a genetic link to CDH.  I agree, expect they have yet to find THE genetic link.  There has to be one but for now CDH is reported as a fetal anomaly.

I spoke with a nurse coordinator from Texas Children’s in Houston last week.  We are scheduled for a day long set of appointments this Friday.  JT will have another comprehensive ultrasound and MRI.  We will have consults with the pediatric surgeon and MFM and also be counseled on the fetal surgery itself.  The doctors will take measurements and estimate JT’s lung volume.  We are also meeting with a Child Life Specialist.  When the nurse first asked me if we would like to speak to one my heart starting breaking for Jason.  He’s so excited about JT.  When we told him we’re having another baby he responded, “O yeah, I want ninety nine hundred thousand more brothers and sisters.”  Jason kisses my tummy at night and already adds JT to our conversations.

The nurse gave us a brief description of what would happen if we qualify and decide to move forward with the tracheal occlusion surgery.  Sometime between 26-29 weeks the surgery would take place.  (I’m 22 weeks now).  While the balloon is in JT’s trachea I have to stay within 10 miles of the hospital.  I would go for weekly checkups on the progress of his lung development.  The balloon would be removed around 34 weeks.  We can choose to deliver at Texas Children’s or come home to Dallas and deliver with our team of doctors and surgeons here.

I keep thinking of Ava and how she fought so hard for her life.  Those awful, terrible feelings of helplessness and fear that I have put way back in my mind have crept back into my daily thoughts.    A dear friend told me yesterday to take things day by day.  “One foot in front of the other and what you need will be provided.”  I’m going to take that advice and keep praying, hoping and trusting that God will take care of us, especially little JT.

I want to thank our family and friends that have reached out to us with love and in prayer and support.  We are grateful and could not even think about going down this road without you.

Much love,

Jennifer

Details of the tracheal occlusion CDH study:

http://clinicaltrials.gov/ct2/show/NCT00881660

Details of a leading doctor in CDH research at Texas Children’s:

http://www.texaschildrens.org/About-Us/News/Dr–Ruano-joins-Texas-Children-s-Fetal-Center/