The River Church Community

10/3

Hello Dear Angel Helpers,

We had a good weekend together and are getting ready to head off to Oakland for Hannah Jane's neurosurgery appt at Kaiser.  We had some ups and down last night and night before with Hannah Jane vomiting, but we checked her fontanel and there was no bulging there as vomiting can indicate an increase in head pressure that we'll need to get treated right away.  She didn't have a temperature either, so we're glad for that.  She did vomit one dose of her antiseziure med, so we kept and extra eye out, but all is well.  In lots of ways, it's just like the normal family adjusting to even less sleep than before, but living with huge smiles and hearts full of joy at our new family size and the even greater joy and love we have for each other.  We are so blessed to have received and be receiving your love, prayers and support.

We have really appreciated the donations that have come into Hannah Jane's fund and are very thankful for your help and generous contributions!  We're now paying a monthly premium for COBRA and then also a deductible by next week of $3K for the year for Kaiser; we had hoped it would be October 2008 to October 2009, but it is annual and we'll need to pay them another $3K again in January.  We still have Duke for $10K and are seeing if we can pay part now and make payments for the remaining.  Your prayers for their flexibility in this would really be appreciated.

We'll be sure to update you by tomorrow with today's findings and next steps.  We are heading to Duke Medical for the procedure on the 27th and are making plans for that now.  We sure were inspired with the video clip that Stacy Dow posted for us and hope you had a chance to check it out too.  Thank you SO much Stacy!

Love,
Shannon

10/3

Hello Angel Helpers,

Looks like there's no room for a CT scan right now for pediatrics  today so we're on hold for that for now.   Hannah Jane's new neurosurgeon will be at Oakland Kaiser, but this test and her pediatrician are here at the new facility in Santa Clara. 

Kaiser's neuro team still did not have the images from MRIs done pre op nor the one done this past Tuesday or the ultrasound images.  But, with some phone calls we did get the images on CD for the new doc and Rod is driving now to pick them up at Stanford for the Monday 4:30 PM appt in Oakland neuro.  :)

So, even if we don't the CT scan this weekend the neuro people will have these other images for her first appt there.  I like how they have the written summary, but want to see the images themselves to interpret them; I feel that Hannah Jane or as Aunt Kate calls her, sweet Hannah Jane is getting good care.

We'll keep you posted on the next steps.  We are so glad to be rejuvinated again and able to be back in touch better.  For several weeks, there was either Rod or I that felt encouraged or okay and we'd take turns lifting the other one up, but Monday night was the first time we were both absolutely crushed at the same time.  Your prayers and love helped see us through and we are renewed through Christ for these next steps.

I LOVE having Hannah Jane at home with us... she is already improving her eye focus during feeding time; she is a VERY strong little girl.  Today, we'll be giving her a bath at home, yeah!  :)

Know that you all mean so much to us!!!

XO,
Shannon

10/3

Dearest Angel Helpers,

As I was posting the pictures of Hannah Jane's homecoming, I got a call from Kaiser neurosurgery in Oakland.  Based on the MRI results with edema, hemmorage etc. from Tuesday, they want a contrast CT scan (this will require a IV line to be put in and further sedation) done before Monday so that her new neurosurgeon can see her then.  They are no pediatric people who can do the CT scan outpatient here as this is quite rare for such a new baby to have it done.  So, we are awaiting to see if a special person can be resourced in to do it outpatient. 

If not, Hannah Jane will need to be checked into the hospital for the weekend for this test and follow-up observation.  We just got her home and are really praying that this can be done outpatient for her, she is settling in well at home now. 

We are SO very blessed by so many of you and your continued prayers.  May I ask you, if you have a moment to say a prayer to let her not have to be there for the weekend?  If she does need to be there, Rod and I are finding out if we can stay with her bedside around the clock.

I am so thankful for you all -- a special thank you to the Guerrero's for their continued and loving support and just wanted to send a special thank you to those of you who sent cards and notes this past week as well.  Rod and I were behind in checking mail and it was such a sweet surprise to receive encouragement and beautiful cards today from the Wong's, Jason Fung and my Aunt Linda and Uncle Rusty too.

If you have time, please stop by and check out our new pictures too -- I finally have updated ones.  :)

Love,
Shannon

10/2

Hi Everyone,

Let me start off by thanking everyone for not only your love and prayers, but for your understanding as well that we needed a few days to recover from our day on Monday.

In some ways, Monday was one of the toughest days we have had as a family since Hannah Jane’s initial diagnosis when she was still in Shannon’s tummy.  Hannah Jane’s first 8 days were a true blessing and miracle from the Lord.  She was very animated, active, looking and acting very much like a normal little girl.  Because we had expected her to continue to have a large head size upon birth, those first 8 days sort of lulled Shannon and I into wanting to deny Hannah Jane’s diagnosis at 31 weeks after Shannon’s hospitalization for placenta abruption that found Hannah Jane’s large head size and subsequent fetal MRI that showed severe sized ventricles.  That all came crashing down when we met with her neurosurgeon a few days before her surgery.  He showed us the MRI images of Hannah Jane’s brain the day of her birth that are much clearer than the fetal MRI done when Shannon was pregnant.  We were able for the first time see the severe size of her ventricles in relat  ion to her brain and the mass, later to be determined a tumor blocking 90% of the CSP flow that is so necessary to prevent infection in the brain and provides cushioning and protection.  Although it was a miracle that her head hadn’t continued to balloon and was normal sized in spite of the severity of her ventricles and this tumor, as her surgeon put it, she had a ticking time bomb inside her head that needed immediate surgery. 

As we have told some of you, with as much faith as we have in God and as much confidence as we had in her surgeon, it was devastating to hear someone talk about opening up our 8 day old daughter’s head to remove a brain tumor.  The morning of Hannah Jane’s surgery was extremely hard.  As Shannon and I walked with Hannah Jane and her nurse over to pre-op, I was crying so hard.  I had not cried that hard since my grandmother died about 2-1/2 years ago.  I kept saying to Hannah Jane how sorry I was that she had to go through this, and I told her how I would gladly change places with her to take this from her.  As you might expect, Shannon shared my tears, the mother child bond that they had already developed in just 8 days was tremendous.

After Hannah Jane’s surgery, her whole demeanor changed.  She was initially sedated from the anesthesia and on a ventilator, but then started having seizures, the doctors gave her phenabarbatol to control them.  She had a minimum of 5 “seen” seizures by doctors and nurses.  However, after her surgery Shannon and I separately saw her eyes rolling back and left arm shaking and pointed it out to her nurse and were told is was “normal” after surgery by her nurse.  We are not medical experts and believed it, only to find out later that these are the same things in addition to full body shaking that were seen 6 hours later and were indeed seizures.  Hannah Jane was in the corner of NICU and because we were not stimulate her too much, were not there when a nurse caring for the one baby next to Hannah saw Hannah seizing and told Hannah Jane’s nurse who had her in her care and one other baby, but this baby was around the corner and Hannah’s nurse could not see Hannah fro  m the other baby’s bedside.  Thank God this nurse caring for another baby saw Hannah seizing and alerted Hannah’s nurse.  This happened yet again we were told.  When Shannon found out, her mommy tiger instinct went into full force to ensure that Hannah had dosages of meds in the NICU for future seizures as Hannah had to wait 2+ hours after her seizing for her first dose from the pharmcacy that is just downstairs and there wasn’t another one for future if needed!  Further, Shannon emphasized hers and my intense feelings that it is not safe for Hannah Jane to not be able to be seen by her nurse with seizures.  When Hannah Jane seizes, her extensive monitors do not necessarily go off and because she was ventilated could make no noise, so she must be seen visually by her nurse to get help.  So, with Shannon’s mommy tiger instincts in play, they rearranged the NICU and moved Hannah Jane to the center where other nurses could also watch out for her. 

Even days after the surgery and being on the medication and off the ventilator Hannah Jane is very lethargic, sleepy and unanimated.  To this day, Hannah Jane has not cried nor really made any noise more than occasional peeps.  Although all this seemed very concerning, we were patient hoping and waiting for improvement.

After Shannon had pushed for several days to have a care conference with her entire team of doctors, that is supposed to be offered for patients with new or severe diagnosis it  did not happen until Monday and only at our insistence that it happen at all.  What was very disturbing was that of the hour or so that the conference lasted, only 10 minutes or so was spent talking about her medical care and diagnosis and the rest of the time was spent talking about which insurance plan we were going to select, Kaiser or MediCal and basically harassing us about our finances and pushing us to select immediately.  This was supposed to be about medical issues and for some reason, finance decided to come to this meeting and that is what the majority of the time ended up being about.  In fact, the previous week we were advised by the financial advisor that we had to deny COBRA immediately, which would have long term effects of future coverage for Hannah Jane with her disability.  She told
  us there would be no future issues with pre-existing conditions for Hannah Jane when I found new work, but this as we found out later from legal is not true.  They obviously did not have our interests at heart and we were lied to about coverage options as well.


To make matters worse, her neurosurgeon was not able to make this conference and instead met with us at Hannah Jane’s bedside later that evening.  While Dr. Edwards isn’t exactly what you would call warm and fuzzy, he had always been affectionate and considerate with us.  That being said, his demeanor was very different that evening at Hannah Jane’s bedside.  He met with us for approximately 30 minutes, he spent about 25 minutes lecturing us about insurance and money.  During the 5 minutes or so he did talk about her care, we tried to ask him some questions about her being so quiet, her prognosis, and what to expect.  He told us in the coldest of ways with other parents and nurses listening that Hannah Jane had severe hydrocephalous prior to surgery, which put severe pressure on her brain and what we were seeing was evidence of severe developmental delays due to that pressure.  According to HIPPA, there is to be privacy when discussing medical issues.  That aside, you w  ould hpe that the Chief of Pediatric Neurosurgery prioritize Hannah Jane’s care first and not even bring up what should be handled with finance, not her neurosurgeon. 

Shannon started crying and I went into shock, then Dr. Edwards just walked away.  This absolutely devastated us.  We had never been told that there was severe pressure on her brain, nor had we been told that the things we had been seeing in Hannah Jane since her surgery was evidence of severe developmental delays due to this severe pressure.  We were told that there was some developmental issues most likely and the surgery was needed right away.  When you combine this with his coldness and his obvious focus on money, we were shaken to our very core.  It literally took us several days to catch our breath.  In fact, before the finance situation the previous week, he told us that another MRI was needed before her release to see if the pressure was still there.  Then all of a sudden, he didn’t want to do it before her release.  Shannon contacted the social worker there and again advocated for Hannah Jane letting them know that she would contact the COO at the hospital regarding
  our concerns that Hannah Jane was not getting appropriate medical treatment.  She’s not real popular at Lucile Packard anymore, but with her passion, Hannah Jane got that MRI Tuesday.  The results show edema, hemmorage and bruising in her head.  Another MRI is needed next week as well as monitoring regularly.  Stanford told us Hannah Jane could go home and we wanted to get her out of there especially now that we felt her care wasn’t being followed through on.  To allow her to be released we had to have a pediatrician appointment set up the next day, a medicine draw within the week, a MRI and neurosurgeon appt set within a week and appointments with infant development and physical therapy as well.  That was a lot to put together since late Monday night.  We got super busy on Tuesday deciding what to do with coverage and such.

I am very happy to tell you all that Hannah Jane was released from Packard Childrens Hospital yesterday, and we had our first night together at home as a family.  October 1st starts a new chapter for our family.  Our dear friend Pat Valentine not knowing that we were bringing Hannah Jane home that day had come to the hospital to pray in the waiting room of the NICU.  We hadn’t talked with anyone since that Monday night “conversation” with Dr. Edwards, but the Holy Spirit put it on her heart to come at the perfect time.  She waited while we learned about how to draw up Hannah Jane’s meds for at home and care for her incision and took pictures of us all that we are posting.  Hannah Jane is truly a miracle and so very loved by you all.  When Shannon was released and left the hospital without Hannah Jane on the 16th, she cried so hard that she wasn’t wheeled out with her precious baby to go home, and while she was so thankful that Hannah Jane was getting medical care, i  t hurt her heart to not bring her baby out in her arms of love and settle her in at home.  So, yesterday she got her dream with Hannah Jane and they wheeled Shannon out in a chair holding our precious daughter; Shannon had the biggest smile I’ve ever seen!  While we were driving home, Pat went to the grocery store and bought us the fixings for a celebratory dinner at home.  We still had the food in the fridge from before 9/9 when Shannon was hospitalized early and last night I finally cleaned that out and put the goodies from Pat in.  Pat, you and Mike have been a true blessing to us during this time.

Today Shannon and I took Hannah Jane to her first pediatrician appointment at Kaiser.  Her pediatrician is Dr. Marc Chin, and he was wonderful.  He impressed Shannon and I so much, he obviously took Hannah Jane’s condition very seriously and already has set up physical therapy, neurosurgery, and blood level appointments as well as infant development.  He walked us through every step of his examination of Hannah Jane, telling us what he was looking for and what those things meant.  He was very calming, which is exactly what we needed.

Unfortuntely, as a result of all the insurance issues at Packard, Shannon and I met with a lawyer today to discuss our options and to decide what we were going to do next.  Stanford has talked about our bill being over 1 million and we needed to find out about what consequences there will be for us.  He spent nearly 2 hours with us and we came away from that meeting confident we had the right lawyer.  It is just so discouraging that we have to think about money instead of our daughters care.  However, such is the reality of life.

I have to say that we feel very tired and in some ways beat up as a result of all this.  Personally, there have been moments when I feel I have reached the limits of what I can bear.  In spite of these feelings, somehow God gives us the strength to go on and to keep trying.  As a father, when I look into the eyes of my daughter and I get to smother her with kisses and love, it is truly all worth it and I would gladly do it all again for my daughter.  Our dear friend Kate Hinke sent us the following scripture that was so perfect:


When you pass through the waters,
       I will be with you;
       and when you pass through the rivers,
       they will not sweep over you.
       When you walk through the fire,
       you will not be burned;
       the flames will not set you ablaze.

We love you and are praying for you too, Kate!

A BIG thank you to Pastor Brad for his love and support and phone calls, the Claassens for providing a freezer and coordinating freezer meals, the Kwoks for so many phone calls from us for help, love and Heather for getting insider medical info from her sister who is a doctor, the Snells for encouragement and a carrot cake we hear was fabulous, but couldn’t make a time work – sorry that things were so up in the air for us!, Jason Fung for his amazing support and love, and SO very many others of you for emails, prayers and love.  And, for a lovely lady Sally who saw us at Walmart getting last minute supplements for Hannah Jane’s home coming – if someone has her email address, please send it to us, she was in Bill and Molly Myer’s small group, we lost the paper she wrote it on to invite her to this site.


There is so much to be revealed in the next couple of days with MRI, weeks with physical therapy, infant development and we still have the trip to Duke coming up later this month as well.  Shannon has gotten her DaTP shot to prevent pertussis for Hannah Jane and I’ll get mine tomorrow.  We’re getting flu shots as well hoping to keep Hannah Jane healthy as possible is essential since surgery especially if additional one(s) are needed.  We’re limiting visits to our home until Hannah is stronger for exposure to outside germs within the house and have been told to limit others from touching her until she’s stronger. 

But, since it’s hard to have you over for now, we will meet with neurosurgery and hope to get the okay to bring Hannah Jane to church a week from this Sunday to meet you and are asking Stacy Dow, our VERY special Angel Helper Main Coordinator to come so you can meet her too.  We have so missed being with you in person at church to worship and while we feel your love from afar and hope that you feel our daily prayers for you too, we hope to see you on the 12th!

Look at this, no updates for days, and then I unload this on you.  Thanks so much for taking the time to read this lengthy update, as well as for taking the time to keep us in your thoughts and prayers.

P.S.  check the site for new pictures tonight or tomorrow.

Rod