The River Church Community

Hi Everyone,

It's been a tough week for Hannah Jane and us with her EEG, neurologist appointment and another blood draw yesterday.  She is still having eye twitching and we're seeing the neuro opthomologist now too.  He EEG showed some concern in her front left but, it is hopefully just trauma from the recent shunt placement.  Due to this she will continue to be on the anticonvulsant med for an undetermined amount of time.  Shannon's hand was doing better, but she overdid it with lifting Hannah Jane (who is now 25.25 inches and 13.5 pounds!) and too much moving it the past couple of days and has a setback with it and something with her elbow too.

Sorry I am posting a copy of the letter we had at the bake sale last week late, but for those of you who don't attend we promised a copy.

We continue to be so grateful to you all for loving and supporting us through this time.  The meals have been incredibly good and so very helpful to us; thank you!  We are so thankful this Christmas season and pray that you are blessed with love and joy.

Rod

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Dear River Family,

The past 15 months have been a particularly hard time for our family; we have experienced an often painful journey, but God’s light shines through even still.  We had a miscarriage in October 2007 that was really the start of some challenging times in our life.  Two months later we became pregnant again, and of course were optimistic with a lot of worry as well.  The first trimester tested us with spotting, discomfort, progesterone injections and several trips to the E.R. At 18 weeks, during an ultrasound in which the doctors told us we were blessed to be having a girl, they also discovered what’s called a CPC, a cyst in the middle of her brain.  At that point, we decided to have an amniocentesis to find out if there were any abnormalities such as Trisomy 18.  We would not terminate the pregnancy regardless of what we found, but wanted to know how we could prepare for Hannah Jane’s birth.  Lots of prayers went up for her at our small group, Shannon’s Healing Path II g  roup and from the Maitz’s.  The results came back negative for Trisomy, so at this point we thought we were out of the woods.

However, at 31 weeks, Shannon was rushed to the hospital with severe bleeding that turned out to be a slight placenta abruption; we were very close to delivering our daughter at that point since Shannon was contracting every 1 minute.  Fortunately, the doctors were able to stop the contractions.  During an ultrasound before Shannon was released, the doctor found that Hannah Jane’s head was measuring approximately 4 weeks large.  They advised us to come in to a specialist if Shannon Jane wasn’t born early to have a more comprehensive ultrasound to determine the cause of the increased head size.  At that scan, they diagnosed our daughter with Hydrocephalus, an excessive build up of fluid in the ventricles of the brain causing pressure on her brain.  We immediately transferred Shannon’s care to Packard Children’s Hospital at Stanford.  They are leaders in children’s medicine, and more specifically, Dr. Michael Edwards is a renowned pediatric neurosurgeon regarded as on  e of the best.  It was determined that the best course was to have Shannon carry the baby to 39 weeks to help develop vital organs for breathing and thicken her skin so our daughter would be better able to handle surgery.  I had been planning on taking paid family leave after the baby was born, but Shannon was now on bed rest so I took family leave early to help her through the remainder of the pregnancy.

Due in large part to the gestational diabetes, Shannon gained a lot of weight in fluid which caused her to have high blood pressure.  For this reason, the doctors decided to deliver the baby a few days earlier than expected.  On September 11, at 8:37 am, our daughter Hannah Jane was born.  After birth, she was taken for an MRI to determine the cause of the hydrocephalus.  They found a mass, later determined to be a tumor in her 3rd ventricle blocking the flow of spinal fluid.  She was also diagnosed with ventriculomegaly.  Pastor Brad came the day after her birth and blessed us as a new family.  Hannah Jane was so peaceful in his arms and we were once again blessed by his and the River’s love.  At just 8 days old, she had a full craniotomy and Dr. Edwards removed most of the tumor and put in a temporary external drain.  He could not remove all of it because it was too close to healthy brain matter.  He had hoped that this would relieve the pressure so that no shunt would be needed.  The day before Hannah’s surgery, my employer called to notify me that they were letting me go because they had to fill my position.  Since the company was less than 50 employees, I had no legal protection from this.  Hannah was on a ventilator and started having seizures, she was put on anticonvulsant meds and she spent the more weeks in the NICU and we brought her home on October 1st.  That day God sent us Pat Valentine to see us off; what a joy it was to share Hannah Jane’s homecoming with her.

We had harvested Hannah Jane’s cord blood cells so that we could travel to Duke University in North Carolina for a promising procedure where her cord blood cells would be infused into her via IV.  The procedure has helped other hydrocephalus babies with developmental issues as well as with things like sight and hearing loss.  Due to the pressure that was on Hannah Jane’s brain, she suffered brain damage as well as from the invasive path of the craniotomy to reach the tumor.  The surgery pathway leaves a permanent path through it and is at risk of hearing and sight problems as well.  After getting clearance from her doctors here and a CT scan of her ventricles to ensure we were safe to fly, we travelled to Duke and on November 18th, Hannah Jane had the procedure.  During the procedure, she vomited, had an elevated blood pressure.  The doctors at Duke assured us that she was probably reacting to the preservative, and that it would all resolve in a day or so.  The next day H  annah Jane vomited 2 more times on the way to the airport.  We called the doctors at Duke, but they continued to reassure us that she was okay and that the preservative would work its way out of her system that day.  The 1st leg of our flight home was to New Jersey, and upon arrival in the car, she vomited again.  We took her to an E.R. in New Jersey, where the first leg of the Angel Flight stopped over but after examining her and testing negative for dehydration, she was released.  We had called Hannah Jane’s doctor at Kaiser and he advised us that if Hannah Jane could keep her feedings down overnight, we should get her home to be seen by her own neurosurgeon.

So the next morning we took a flight home from New Jersey to Oakland.  About 4 hours into the 6 hour flight, Hannah Jane became more and more lethargic and her eyes began twitching more and became stuck in the left direction.  We called Kaiser from the plane to determine whether we should land immediately, but since her fontanel wasn’t bulging (a sign of ICP inter cranial pressure) breathing was stable and she hadn’t vomited, they arranged for an ambulance to be waiting for us at the jet center and took us directly to Kaiser Oakland’s E.R. where a team of doctors and nurses were waiting for her.  Jason Fung was meeting us to drive us home and he followed the ambulance (no easy feat!) brought our luggage to the hospital and offered us his tremendous support and prayers.  They immediately got her into the CT scan which showed an increase in the size of her ventricles and that the right side filled her whole side of her head.  She would need a second surgery to insert a sh  unt.  God had a plan all along because Hannah Jane’s only doctor in Oakland is her new neurosurgeon, Dr. Pang and that is where we landed.  It was a very painful day with over 25 pokes for blood draws, failed IV attempts and blow outs and such.  Pam and Benjy Guerrero came to the ICU with us and prayed over us all, sustaining us through this horrific time of Hannah Jane suffering.  The next morning on November 21st, she underwent surgery for the shunt.  We brought her home 3 days later, and she is home with us now.

I am constantly amazed at how tough our daughter is, everyday she keeps trying, she keeps smiling and she keeps bringing so much joy to our lives.  There are so many painful details I had to leave out to keep this sort of short, Shannon and I shed so many tears and even now continue to cry over what Hannah Jane has gone through.  Someone once told us that having a child is like having a huge piece of your heart walking around in the world; that is so true.  What is also true, however, is that with as many challenges as we have had the last 15 months, God has blessed us a million times more.  Our daughter is improving, Kaiser has been phenomenal to us, and you, our church family, have showered us with love, generosity and prayers.  We could not have gotten through all this alone, and that’s why we believe God gave us all of you.  Thank you so much for everything that you have given and continue to give.  We still have a long road ahead of us, but your love, support and praye  rs continue to sustain us; you truly are God’s special Angel Helpers!

Love,
Rod & Shannon Geoghegan