Another Member of the Brian Reemtsen Fan Club!

While doing some googling today, we came across a site of another person who has been in our favorite heart surgeon’s care. Not the usual pediatric patient, but a great account of the quality of the team here at UCLA. We’ll write a tribute of our own soon!

http://saipanscuba.blogspot.com/2008/09/two-week-follow-up.html

To read what Mike wrote about Rudy, click here:

http://saipanscuba.blogspot.com/2008/10/putting-it-back-into-perspective.html

So glad that the same team giving our kid a chance at life is giving Mike’s kids a chance to have their dad! The internet rocks.

A Quick Stop at Home

We are headed back to Los Angeles today after a quick visit home overnight. Rolf and I came home yesterday to tie up some loose ends, welcome Oma and Opa who arrived Friday from Texas and attend the Rescue Mission’s annual fundraiser. It was a full but very good day of seeing friends and storing up hugs for our week ahead. Rolf and I, the kids and Rolf’s parents will head back down to UCLA this morning and spend the day together with Rudy before his surgery bright and early tomorrow morning.

As many of you know, my parents were planning to come and take the first “child care shift” and then the Geylings were going to relieve them in a few weeks. Shockingly to us all, my dad was diagnosed with a brain tumor last week and has since met with various doctors in preparation for his surgery on Tuesday!! Of course, there is great concern and disappointment on all our hearts as Gma Jo and Gpa Dick are now on their own journey of faith and recovery and none of us are able to be with each other to support and love on each other in person. So, I ask that you add my Dad, Dick Wilson, to your prayer list…especially on Tuesday. Again, I find myself in a place of complete dependance on God forced to approach life one day at a time.

Rudy’s surgery prep will begin tomorrow morning at 7am and Dr. Reemtsen is estimated to begin his work around 8:30. He’s explained to us that the Norwood procedure is probably the most risky operation done at UCLA (or any hospital) and there is a critical window where Rudy will be on bypass that can’t exceed 40 minutes. The entire procedure should last about 2 hours and Rudy should be away from us for about four. Dr. Reemtsen has warned us that the next week will be a long series of highs and lows for Rudy so we are bracing ourselves and praying for emotional strength.

We are grateful for Rolf’s parents’ willingness to kick into action to be with the children. We have, however, been thrust into our new lifestyle much faster than we anticipated so it has taken everyone off balance a bit…especially Olivia. Please pray that the kids will extend an abundance of grace to one another and to Oma and Opa and that the times we do share together in the next couple of weeks will be positive and fun (interpretation: that I will refrain from filling the time with instructions for the kids and details that can wait!) I’m definitely being challenged in the area of “letting go”.

Rest assured that all the comments on the blog are being read and the phone messages and emails from home are making their way to us eventually. Thank you for your expressions of love and support and, although, we’re not finding time to return everyone’s calls and messages, we are blessed by them and we will be in touch. Big hugs to you too, Trish

Rudy’s Letters

This has been a good weekend. Fun times with the kids (probably some of the last pool weather we’ll have), and we also made progress on a number of house projects we wanted to get to before our attention shifts to LA. Trish is displaying her usual organizational flair, trying to address details that may not get attention between now and January 1^st. I’ve been humming Christmas carols today—probably because of the notes I had to write so that she could mail all of the family Christmas packages. Rudy isn’t the only sick person in our family.

I bought a kayak last week so I could sleep better. A few dear friends have been concerned about my restless nights and suggest exercise. Going to the gym or riding my bike in traffic are not peaceful environments, so I figured getting out on the water would be more tranquil. So Saturday morning I tooled around the waters of Isla Vista with the sea lions until I couldn’t resist the call of the oil platform “Holly”. Made it all the way out and got to scrub off crude from bow to stern as my reward. Still slept lousy by the way, but nice to have some time for personal therapy, prayer and reflection.

”Hypoplastic Left Heart Syndrome” is a mouthful. Whether I’m typing it or saying it, it’s cumbersome; if not for reasons of syntax then for the weight the words have come to carry. Understandably, it is more efficient to reduce them to an acronym but it seems that the medical community doesn’t have consensus on this. “HLHS” is simple enough, but I’ve seen variants of “HPLHS” (long, but since the first word has five syllables, maybe it deserves two letters) and “HPHS” (as hypoplasts can only occur on left side, perhaps the “L” would be redundant).

HLHS. The first thing I think of are the gray t-shirts of apathetic teenagers chugging out laps in a high school gym class somewhere (“Highland Lake High School”? “Heartland Lutheran High School”?).

HLHS. A good acronym is one that requires no explanation (when did you ever have to explain ASAP, UCLA or IRS?). This is where HLHS really bogs down. Other than specialized realms of the medical community, I’ve never tossed out Rudy’s acronym in conversation without having to spell out the whole term to the puzzled looks I get. Not like “Hypoplastic Left Heart Syndrome” does that much for anyone; I usually need to include one of my layman’s definitions (my baby has half a heart) to see an expression of understanding that quickly changes to a look of compassionate concern.

HLHS. For some reason the whole acronym is taking some getting used to for me. Rudy isn’t born yet. I don’t know if his hair is straight or curly, I don’t know if his eyes will be the same piercing blue of his brothers and sister, yet I feel like he’s been branded with an ominous moniker—HLHS. These letters will be a big part of his life and a large part of our focus, but I pray they define him only in part and not in totality.

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 21^st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6^th 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