Trish’s Update 9/11/08

Good Morning Dear Friends,

A big thank you goes out to all for your continued prayers and messages of love and concern.  So many have asked how the insurance stuff is going and I held off sending another update on that until we had more concrete information to share…It looks like we are moving ahead on treatment and care so here is the latest:

After the request for care at Children’s Hospital LA was denied, Rolf and a bunch of other dear souls (including our agent who set up the coverage) got to work on an appeal.  In the meantime, the insurance company redirected us to UCLA because they are within our “network” and we felt it would be important to do our “due diligence” and get to know the UCLA team and their facility as best we could so we could make informed decisions…

Although we have not found the administrative system at UCLA to be as “user friendly” as Children’s, we have been very impressed with the medical team that will care for Rudy.  When making initial contact with the doctors we were authorized to go to required numerous phone calls with no results, Rolf finally looked up the head doctors of each department on the hospital website, found email addresses, and emailed them directly explaining our situation.  Within hours he heard back from each of them either by phone call or email!!!!  They all insisted on seeing us personally and had their “people” rearrange their schedules so we could stack them all on one day.  Once we bypassed the hospital’s system and got on the doctors’ radars, we’ve been in close contact with them.

As it stands now, I believe the appeal is still in the works but, at this point, we have run out of time and although we wish we could go to Children’s and take advantage of all their amenities and resources, we are convinced after being at UCLA that the care Rudy will receive is comparable and that is what is most important.

Rolf and I spent all day at UCLA on Monday…it was very strange to be back there as we had all of our kids at the old UCLA Med. Center…the high risk OB that will take over our case is even in the same office as my old OB (who, sadly, isn’t there anymore as I was hoping to have her involved in this delivery as well).  The Mattel Children’s Hospital at UCLA is located in the brand new Ronald Reagan Medical Center – they just moved in a month ago – and it is beautiful.  We met with the surgeon who will do Rudy’s procedure, the head pediatric cardiologist, the head neonatal pediatrician, and the high risk OB…they ran a battery of comprehensive tests and were very generous with their time…the surgeon himself sat with us for an hour explaining the procedure and answering our questions!!!  Physically it was exhausting, emotionally it was heart-wrenching but, bottom-line, we felt our prayers for peace of mind about UCLA had been answered.  The reality important for us to remember is that we had a choice between two good medical facilities when so many families in rural parts of our country don’t have any options at all!  God is so much bigger than all the confusion and clerical mistakes between the various insurance parties that held this whole process up for us…and we feel, now, that we can rest in where we have landed.

What to expect AND how to pray…

So, now, the next phase of this journey begins!  Although we don’t have HARD dates on the calendar yet, it looks like they will induce labor the week of October 21st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6th in case I go into premature labor.  This is much earlier than I was planning to go down and has put me in a bit of an emotional frenzy…I just don’t want to be away from home/family that long.  I’m still weighing that decision very carefully.  If Rudy remains strong, we are going to try and deliver naturally.  Once Rudy is delivered, he will undergo a bunch of tests in preparation for surgery which will take place 2-5 days after delivery.  During that time, the children will be able to see him and hold his little hand but they won’t be able to hold him as I had hoped.  I also won’t be able to nurse him right away…they won’t let him eat for 2 weeks!  This is a BIG prayer request as many babies with HLHS have problems eating and end up with long-term digestive problems.  The team is very supportive of me nursing him when he is finally able to eat so I will work at getting my milk to flow and keeping it flowing the first few weeks.  Please pray that he’ll smoothly latch on when the time comes!!! 

Speed and accuracy are essential to the success of Rudy’s open heart surgery…the whole procedure should only last 2 hours and the work on the heart a mere 40 minutes but a lot of really important stuff happens in that time and a lot of really bad things can go wrong in that time!  Rudy will be in an extremely critical state (I’ll spare you the gruesome details) for a couple of days after surgery.  At that point, he will be moved back to the NICU where he will stay until he is discharged.  If all goes perfect, we could bring him home as early as 21 days after surgery…this would put us home right before Thanksgiving! 

To be honest, emotionally it is hard because I want to do whatever it takes to give my baby a chance at life here on earth and yet I hate the thought of him going through what has to be done – with no guarantees!  I’m reading a book right now by a mother who lost her son to HLHS and she writes, “Two of the most primal parental instincts are to keep your child alive and to protect your child from pain.  Those instincts usually do not collide.  With our baby, they did.”  IT IS SO TRUE!  I so understand this conflict of interest and it literally breaks my heart.  So, we move forward continuing to pray for peace and God’s direction as we choose to pursue life for this baby.  The practical and emotional impact all this will have on our family is starting to weigh heavy on me but then we have an interaction with one of the kids that reminds me that we are starting off on a firm foundation of love and compassion.  i.e.  Rolf and I had to sit Max down a few days ago to tell him that we couldn’t let him do sports again this fall – something we denied him last fall because we just moved into our house and we wanted to get everyone settled.  We were bracing ourselves for a strong reaction from him as all he talked about ALL SUMMER was how much he was looking forward to either football or soccer this fall.  After we explained to him that we just couldn’t commit to it this fall, he thought for a minute and said with disappointment but calmly, “I guess that’s okay.  I’d rather have a baby brother than play sports anyway”.   The children are doing fantastic but I continue to pray for them fervently as the sacrifices and stress will start to affect them more directly as time goes on.

And so, I humbly ask you to keep praying…the prayer needs are so numerous I can’t even begin to list them all so I trust the Spirit will guide you specifically as you pray.  I’m still praying for a miracle – that the left side of his heart will begin to develop and, also, that the right side of his heart will continue to stay strong even though it has to work so hard. 

With much love and gratitude,  Trish

 

Trish’s Update 8/17/08

Good Morning Friends!

I just wanted to thank you all for your comforting emails and phone calls.  I’m really bad at returning phone calls but your efforts in reaching us are greatly appreciated.  I also wanted to send out an update as many of you have inquired whether or not there are new developments.

First of all, my apologies to those of you who got our request for prayer and didn’t even know we were pregnant!!!  Ha Ha  Yes, well, the news of Geyling #4 coming our way came as quite a shock to us in early March.  We walked around in a daze for a few weeks but, of course, the idea of adding another to our family has grown on us and we’ve all since fallen in love with this little baby. The classic quote came from Max when we told the children I was pregnant…he burst into tears and said “I don’t mean to be offensive but I like our family just the way it is!”  Well, now he and Olivia have both eagerly offered to share their rooms with the baby and Maxi wakes up every morning, gives my big belly and hug and says “Good Morning Clinton” into my stomach because he read in my pregnancy book that the baby can hear outside sounds now!  Too cute….

Also, I’m kind of cutting and pasting my email list together as I go along so, again, please feel free to forward this on to any that might be interested and I’ve not included.

 

UPDATE:

We just returned from our trip to June Lake and we had a good time together.  Although Rolf and I were preoccupied, it really was a good time to get away and love on the kids with our undivided time and attention.  We have no new news about little Rudy’s condition but Rolf did make contact with a perinatal administrator at Children’s Hospital in LA who was very encouraging and who is helping us arrange doctor visits, etc….Right now, we are in the process of getting the appropriate referrals and figuring out insurance stuff.  Rolf has gallantly taken all that on as dealing with insurance companies has never been one of my strengths!  I go back to my primary OB for a regular appointment a week from Monday (August 25th) and, hopefully, by then we’ll have our first round of appointments scheduled in LA. 

So, for now, our focus is getting the kids ready for and settled in school.  They start in a week (Monday the 25th) and I’m compelled to pray hard for the upcoming school year as this will be a year of adjustment, possibly long stretches of separation, a string of different care-givers, their own concern for Rudy and the different ways they will process that, etc, etc…and how all of this will play out in their school experience this year.  I’m praying they have fun learning, build quality friendships and, on those days when it’s just plain hard to be at school, that they will be met with compassion and encouragement by their teachers and peers.

Please continue to pray…there are nights when Rolf and I are awake staring at the ceiling and we start to pray together but the words just don’t come…it’s hard to know where to begin!  We are definitely experiencing answers to your prayers for peace and hope and so we ask you to continue as you truly are interceding on our behalf where our prayers fall short.

It’s funny how your perspective on little things can change in an instant…this baby has been very active for several weeks and I was starting to grow weary of all the kicking but now every time he kicks my response is “Go ahead, Rudy, kick!!!!  Kick as much as you want and get as strong as you can!”.  All of a sudden, there is joy in every kick and the little annoyances in pregnancy fade away.

Anyway, I guess I’ll close for now.  Thank you, thank you dear ones!!!!!!  Big hugs to you all,  Trish and all

Trish’s First E-mail (8/8/08)

Hi my dear friends!

I haven’t been very good about keeping in touch lately but I do think of you often and miss you all…we have had a very lazy summer up until this week and have enjoyed taking the time to get to know our new community better.  It is hard to believe it has been a year since our move from L.A.!!!!!

I’m writing this morning with a deep need for prayer for our precious little baby.  I went for my routine ultrasound on Thursday and the attending doctor detected what he believed to be a congenital heart condition known as Hypoplastic Left Heart Ventricle – a serious condition found in 3 or 4 babies out of 10,000.  Rolf and I saw a pediatric cardiologist yesterday who, essentially, confirmed Thursdays diagnosis.  Unfortunately, his diagnosis was expanded a bit to Hypoplastic Left Heart Syndrome as the entire left side of the heart is severely underdeveloped (not just the ventricle).  As far as we understand at this point, the baby’s entire left side is not functioning at all and so the right side has grown bigger than normal to compensate.  The baby can survive and grow and thrive inside the womb because it has the support of the placenta, etc but life is not sustainable outside the womb without intervention.  The most common treatment is a series of 3 open heart surgeries after delivery…one at birth, one at 4-6 months and one at 2-4 years provided there are no other chromozomal  abnormalities and the right side of the heart remains healthy/functioning.  The treatment doesn’t correct or cure the left side…it reroutes the plumbing of the heart so the right side can do what both sides should do together.   So, that means this little one can certainly live an active life but will be under the lifelong care of a cardiologist and will need heart medications, etc.

Things being what they are and so we can pray specifically, we abandoned our usual practice of not finding out gender and are very pleased that we have a boy named Clinton Rudolf Geyling, a name chosen not out of political leanings, but for his maternal great-grandfather (Clinton) and for his paternal great-great grandfather (Rudolf).  We’ll use the full name when he’s in trouble, but otherwise “Rudy” fits the bill. J

Right now, everything else looks fine.  He is big for his age and is seemingly healthy in all other areas.  There is no known reason why Rudy won’t develop safely to term and be delivered naturally.  If the first surgery is successful, his stay at the hospital is expected to be 4-6 weeks at the least.  Unfortunately, none of this can be done in Santa Barbara so the doctors here are recommending we gather a team in Los Angeles (most likely at Children’s Hospital in downtown LA) that will include a pediatric cardiologist, surgeon and OB.  I’ll have to meet with them a couple of times before delivery to establish a plan as well as continue to see the team up here so they can monitor the baby’s condition and make sure the right side of his heart remains healthy enough for the procedure.  I won’t be able to deliver at Children’s so, for now, the plan is to deliver at another LA hospital and they’ll transport Rudy to Children’s.

Obviously, there are a ton of unknowns and with this being unchartered waters for me and Rolf, we feel a bit lost and scattered.  We are, however, absolutely confident that God’s hand is on this and though our hearts are grieving and our bodies won’t seem to let us sleep, we are at peace.  What we need now is prayer so please feel free to forward this on as we want to get the word out but find it overwhelming to contact everyone ourselves.  The children know as they were with us at the first ultrasound appt so they could see the baby and they are all processing it in their own, unique way…I think at this point everyone is wondering how life will look the next few months and concerned about how it is going to effect them and our life here at home which is totally understandable.  Provided we get that far in the process, I know I’m wondering how I’ll even be able to stand being away from home for the 4-6 weeks minimum the baby will need to recover after birth…it’s all a little scary for all of us.

We have plans for a little vacation for a week starting Sunday up at June Lake near Mammoth and from there we’ll start contacting doctors in LA and setting up a plan.  I’m due November 2nd so we have a little less than 3 months to prepare.  We are just taking things one hour at a time and sure appreciate your prayers and love.  I’ll keep you posted!!!!  Love you all so dearly,  Trish