One Small Miracle Followed by One Big Question Mark

Savannah Hope's Journey

April 3, 2014

Today we celebrate one small miracle in Savannah Hope’s Journey. Today is our two-week benchmark for no resuscitation.  Moving forward, if she’s born while the balloon is still in-place, they will make every heroic effort to save her life.  Today is the most important day to date since her tracheal occlusion surgery.

We arrived at UCSF Fetal Treatment Center today at 1:00 pm for our weekly ultrasound and consolation.  Prior to going into surgery, I was informed that if Savannah is born within the first two weeks of the balloon being implanted, doctors would not make any heroic efforts to save her life.  Due to the severity of her condition, there wouldn’t have been enough time for the balloon to increase lung volume, therefore the risks become greater to me to perform an EXIT procedure.

Our weekly ultrasounds determine balloon placement, functionality, and measure LHR, lung-to-head ratio.  Last week, they thought they saw the balloon, so I was hopeful.  It was just too early to really see any significant change.  But, this week, our benchmark week, they should be able to see it functioning.  However, I was faced with yet another bump in our journey … where is the balloon?

After two and a half hours of scanning, the sonographer thought she saw the balloon. Next, the doctor scanned and scanned and couldn’t definitively say the balloon is in place. Today they really put it into perspective for me.  The balloon is only the size of an em dash (—) yup, that’s it.  It can rip, slip out through her nose, and be in-place, but deflated.  There are so many factors to take into consideration.

On a positive note, there is a small improvement in her lung growth.  They are comparing measurements and will be able to give me a new LHR reading tomorrow.  She’s growing beautifully weighing in at 3 lbs, 2 ounces.  All my fluid levels have resumed to normal and she’s very active.

So, what’s next? We’re having an emergency MRI tomorrow to try to see if they can determine if the balloon is functioning and properly positioned.  If they can’t determination placement tomorrow, we’ll still proceed as if it’s in place and continue to monitor growth until location can be confirmed. Could all these extreme measures really not work? That is a very strong possibility and our new reality.

NEXT ENTRY:  A Mother’s Letter

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Join us at Prayers For Savannah Hope community Facebook page to share inspirational photos, positive thoughts, and prayers.  We are truly humbled and cannot thank you enough for joining us through our incredible journey.

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