Halloween 2009

We had a very quiet Halloween at home this year. Paige got to wear her Cinderella dress, complete with tiara and wand. She got her hair curled and even wore some of Mommy's makeup. To complete the theme, Eli was Gus the mouse. Here are a few pics of them all dressed up.


























Jason acquired a green thumb and grew some giant pumpkins in the backyard. In his first year, he harvested a 68 pounder and a 70 pounder! It'll be interesting to see what he will grow next year, with all the things he learned from his rookie year. He also had fun carving the pumpkins. His are his works of art:

How can we help?

Over the last few months, you’ve all been so very supportive. It would be impossible to count up all the offers for help you’ve given. And you all know how poorly we’ve been able to receive help. The problem is that we usually just don’t know what would help us. Or, more recently, our needs for quarantine have isolated us from being able to receive help. This week, we’ve discovered an area where we could use your help.

The further we make our way through this journey, we become more drained and lose sight of any goal. It feels a bit like a fog of war. We can’t see what’s ahead of us, and we’re forgetting why we’re out here. We are only able to put our heads down and continue marching., watching only our feet as they put down one step at a time. We trust, with all our heart, that God has a master plan at work. We also feel that’s such an abused cliché, often used to blanket all sorts of confusions, but it’s something we’ve latched onto for a year now. It’s been a year since we learned about what was to come with Eli.

We’d like to call on you to help remind us of the victories that have come through Eli’s story. Victories on any level from causing a smile or tear, to changing a life, to anything in between. Quick thoughts to full stories, we need them all. We still remember some of them. Stories of faiths renewed, stories of parents re-evaluating how they’ve taken their own children for granted, stories of families and children praying together for Eli. All these sorts of things give us strength to continue fighting.

In the Bible, there is a story about Moses, and his role in the battle of the Amalekites (Exodus 17). His job was to hold up his hands. When his hands were up, the Isrealites would be victorious. As he lowered them, they’d suffer loss. When he could no longer lift them, Aaron and Hur came along side him and held his hands up for him. We need your help holding up our hands.

We know there are many more following this blog than have ever written. We know there are some of you we’ve never met, who are following us faithfully. It would mean so much to us for you to communicate any encouragement to us. We’ve tried to share our lives as best we can, could you share yours? We’d love for you to share your stories here, so others can also be encouraged, but we recognize there are many reasons you may prefer not to do this. Lots of us don’t like speaking publicly. Many of us don’t want to spend the time to deal with the technology issues related to posting here. For whatever reason, we offer the alternative of emailing us directly at twedehase@yahoo.com

Thank you for continuing to walk with us. We eagerly await for your stories, and appreciate you taking them time to write them.

Fall Pictures

Eli likes both sweet potatoes and grandma Ruth. Paige is both an artist and a super hero. We just thought we'd share some of our autumn, so far.

Cath Lab 2 Report

Yesterday was Eli's second chance to see if he is eligible for the next phase of his surgery journey, the Glenn. We need blood pressure in the lungs to be low enough before we can proceed. He failed this test in July, so we gave him some time to grow into his anatomy, then tried it again.

Eli's lungs are still not sufficient. He still has pulmonary hypertension, the blood pressure in the lungs is too high. We need the blood pressure in the lungs to be 1/3rd (33%) of what it is in the rest of the body. At the first test, it was roughly 58%, but measurements were hard to obtain because his numbers were so erratic at that time. For yesterday's test, everything was much more stable, but pulmonary pressure was still in the 44% area. The positive side is that he's made signifcant progress, cutting the gap in half. He is, indeed, growing into his anatomy.

This test also verified, with certainty, what we have for months thought to be the case. During his first surgery, the band around Eli's pulmonary artery was not installed tightly enough. This band is used to reduce bloodflow from the heart into the lungs. It obviously has direct influence over the blood pressure in his lungs. It is adjusted by watching blood oxygen levels as it is tightened. Hind sight tells us that Eli's blood flow and direction is so chaotic, the numbers they used to adjust the band were not accurate. Technically, they could tighten the band, but this would require surgery, opening him all the way up to tighten the band. The alternative is to wait, and let him grow. The band will stay the same size, and he will grow larger, making the band relatively smaller. This is obviously a MUCH less invasive path, and the obvious choice.

So what now? Now, we wait and grow some more. We'll test again in a few months, but any specific timeline has not been established. Our cardiology appointments have been reduced to every 2 or 3 months, rather than monthly. Eli doesn't have any pressing issues at this time, so there's no need for such close monitoring. Our job is to keep him healthy, because any cold/flu would still be extremely bad for his sensitive lungs. We will continue to stay shut-ins through this nasty winter. Christmas and the holidays will be quiet and a little lonely for us this year. We look forward to a return to social life sometime next year.

So to the positive notes. The procedure itself went very well. We didn't even need to stay the night! Eli was... sit down before this hits you... AHEAD of schedule! They let him go home with us after a few hours in the recovery unit. This was such a huge relief because it meant that not only could we sleep in our own beds, but Eli would not be cared for by a nurse who was also caring for 3-6 other sick patients.

In addition, he was also sent home with a slight fever, which they don't normally do. While the fever is now gone, it was very encouraging to be told that he was being sent home with us because we've cared for him so well and understand everything better than other parents. The doctor made it clear to us that he trusted us with Eli's sensitive care, which is why we were sent home before we should have been. Earlier that day, his anesthsiologist asked us some specific detailed questions about Eli, which Tanya was able to answer. As he walked away, we heard him tell the other team members, "It sure is nice to work with parents who just know." Later, in recovery, we heard the charge nurse say "Just ask the parents. They're experts with Eli."

Am I bragging? Yes. I have an awesome wife, and Eli has an extraordinary advocate. Tanya's never second best at anything she wants to do, and Eli's care is a perfect example. I am extremely proud of her, and glad to have her as my partner through this journey.

Please pray for continued health for us all, especially Eli. Pray for protection from what has already been identified as a terrible flu season. And pray for Eli to grow, grow, grow! We continue to be humbled by everyone's outpouring of support, and could never thank you enough.

Cath Lab, Take 2

In July, Eli failed his heart cath. Blood pressure was too high in his lungs. The plan of action was to give Eli a chance to "grow out of it." We were told to expect 3-6 months after the failed cath lab before we tested again. 2 weeks ago, his cardiologist used an echocardiogram (advanced ultrasound) to get a rough idea of how his lungs might be progressing, in regard to the high blood pressure. While not nearly as accurate as a full cath lab excursion, the echo still offers decent insight. After the echo, our cardiologist informed us Eli's numbers were indeed moving in the right direction.

Our cardiologist is the ultimate pessimist. He has a habit of immediately jumping to ultimate terrible possibilities, and doesn't seem to be able to acknowledge the optimistic. As an example, we once told him that we were running a HEPA filter 24/7, and he replied by offering that even HEPA filters aren't proven to be anything more than marketing. I wanted to suggest that if he would lick the dirty filter we brought to the next visit, I'd believe him. But, I held my smart mouth. When Eli had issues with unstable body temperatures, he immediately jumped to possible spinal tap testing, while every other medical professional showed little concern. When he saw the amount of diuretic Eli was receiving, he warned us it could cause deafness. As we spoke with other medical professionals, we were told this is true, given in ultra high doses via IV, but we should have no worries with his dose, and taken orally.

Now, we don't intend to villify our cardiologist. We just had to help define the lenses through which he looks. So, when he came to us today after studying Eli's echo more closely, we recognized for him to define his numbers as "encouraging" to be an extremely positive thing. So... what now? He wants to do another cath lab in less than 2 weeks.

Wait. What?! Like... 2 weeks?! Not February, but October? As our heads spun and we were caught by the headlights. We were made aware of just how unprepared we are for this.

There are a couple additional factors to this decision. Primarily, we'd also like to stay in front of any chest cold or flu. Since either of these could ultimately create a very short end to Eli's life, our cardiologist feels Eli's echo numbers look good enough to test now, and dodge handling the viruses floating around this winter in his current state. We get the impression it's a little "seat of your pants" and the window of opportunity may be narrow, so it all helps define testing now as a risk worth taking.

Should Eli's lungs again show to be insufficient, we understand our cardiologist's next step to be compassionate care. We take Eli home, and make him comfortable for as long as we have him. We trust that clearly defines the importance of passing this test... in two weeks.

We are obviously heavily distressed. We have one last chance at a live-or-die test in two weeks. We feel so inadequate when we realize it takes something this severe to bring us to our knees in prayer, but that's the reality. It's easy enough to continue to pray, but we become comfortable and complacent with our circumstances and forget to plead to God, with everything we have, for Eli's health and continued life.

That's where we are now. Can you please receive the full severity of Eli's condition, and every time you remember, join us in begging God for Eli to be able to grow into a little boy, an adolescent, a young man and into full maturity as his life continues to glorify God for many years?

Matthew 7:7,8. ⁷"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. ⁸For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

John 14:13. ^13"And I will do whatever you ask in my name, so that the Son may bring glory to the Father."

Matthew 21:22. ²²"If you believe, you will receive whatever you ask for in prayer."

Jeremiah 29:11-13. ¹¹ For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. ¹² In those days when you pray, I will listen. ¹³ If you look for me wholeheartedly, you will find me.

Since before Eli was born, we've prayed for a miracle the doctors couldn't explain. This remains our prayer.

Defining Boundaries

Last week, we made a post about how fragile Eli's health is. We noted concerns about coming across bluntly. Today, we were reminded that while you all say "Oh, I understand," the reality is that you don't. Please stop telling us you do. Please let me explain how grim the situation is, and please do your best to understand it. Eli's outward appearance is no indicator of his health. He looks great, yet he's always one step away from the ICU. We can no longer afford to have any concern for peoples' feelings being hurt by our strict measures.

If you think you might be sick, stay away.

If you have "just a tickle" in your throat, you are a lethal threat to Eli. Stay away.

If it's "Just a little nothing," stay away.

If you passed a friend in the grocery store who has a slight cough, stay away.

If you've been around someone who's been sick, you're a carrier. Stay away.

If you've been around someone who's been around someone else who was sick... stay away.

This week, we had to ask Eli's physical therapist not to come in the house because she thought she may have been around a sick kid last week. She said she felt fine, but also admitted that doesn't mean she may not still be contaminated. She now doesn't enter the house without rubber gloves and a surgical mask over her mouth.

This is a serious message, and we need you to understand and respect it. We are entering into flu season. The flu will kill Eli. Today was Eli's last church trip for a very long time, and we only did it because it was outside in the park. Paige cannot be a part of AWANA. Paige cannot take part in play dates with friends. Paige cannot go to preschool. We can't sign Paige up for gymnastics, no matter how much we'd like to. We were forced to miss a birthday party for a dear friend yesterday, because we just can't take any risks. We have been forced to isolate even our very selves, so that we don't become carriers. When Paige got sick, we didn't see her for a week, as she couldn't be home. One evening, I put serious consideration into getting hotel room here in town, because I was concerned about being a carrier, as well. My mom flew into town from the Seattle area over a week ago, but hasn't seen Eli yet, for fear of contamination. We demand this level of care and concern.

Every day when we come home from work, our first step is to use the hand sanitizer at the front door. Then, proceed DIRECTLY to the shower without touching anything, shower with antibacterial soap, then change into new clean clothes. We have a HEPA filter running 24/7.

We are now in lock down. We will be shut-ins through the fall and winter. I will say it once again, Eli is always one step away from the ICU. He will be seen only when necessary. We CANNOT have another close call like we did a couple weeks ago. His mortality cannot afford it.

We pray the severity of the situation translates well. Yes, it is intended to scare you. That's the same edge we live on every day. Eli's cardiologist has all but verbally admitted he doesn't expect Eli to make it through this season, but he's hinted at it very strongly.

Please pray we make it through this winter.

Little Sister Sarah: Goodbye & Thank You

A week ago, my little sister passed away in her sleep. Sarah was 30 years old. The last week has obviously come with much reflection.

Growing up, Sarah and I had our typical brother/sister quarrels. That's what kids do. But we also had lots of fun together. When we were probably aged 6 and 3, we used to play a game called "truck." She'd sit on the couch with her legs straight out, and I'd grab her feet and pull as hard as I could to get her off the couch. She’d land straight down on her rear, and I’d proven my strength. She was never able to pull me off the couch. I remember her betting me I couldn’t hit her finger with my drumstick. I quickly won that bet, and we never did that again. I remember our parents having to put a piece of tape in the center of the backseat of the car to mark a barrier neither sibling could cross, as we traveled cross-country for 2 weeks. To this day, I still say she crossed to my side on occasion.

We both grew up musicians, thankful years later for the piano lessons forced upon us both. She was always a better pianist than I. She went on to play violin, flute and saxophone, but her real love eventually became the bass guitar. I remember sitting in as drummer for her band, as she and friends rehearsed a live rendition of “Spider Webs” by No Doubt for the high school talent show. I still remember countless hours of listening to her playing her bass in her room to all of her favorite heavy metal bands. She had a particular (and understandable, I might add) love for Metallica. We both “cut our teeth,” so to speak, on Metallica’s music. We even played together, at times.

We both saw our first live concerts together. Van Halen and Def Leppard, two different shows. We also saw Collective Soul and a few other shows together. We were both equally floored to learn we were related to “Head,” the guitarist for Korn. Meeting him at his parents’ house was like meeting a childhood hero for her. She’d later go on to see Korn several more times, once getting VIP passes that she bragged about for weeks.

When Tanya and I married, Sarah was so excited to have a sister. She loved Tanya as though she’d been a sister since birth. It wasn’t until this week that I would recognize this as probably her greatest strength, accepting others. More on that, later.

When Sarah became a part of the professional world, she shined yet again. In her short time as a writer for the Reedley Exponent newspaper, she showed her award-winning writing skills to be as abundant as her musical ability. She was very proud of this, having saved several of her pieces as personal keepsakes.

In more recent years, our siblinghood matured into a spiritual relationship. Sarah began to see the new peace, joy and life I had through faith in Jesus. I will always distinctly remember her asking me “If God chooses who to make happy, why hasn’t he chosen me to be happy like you and Tanya?” That was a tough question, but became the opening of the door to her very own salvation, which came a little later. We were so excited to give Sarah her own Bible for Christmas in 2004. Only a few years later did the evidence of those planted seeds maturing come into view. In the last couple of years, Sarah was more outspoken about her faith, and specifically in a Savior Jesus. When she moved back to our area, she began attending church regularly with us. Paige enjoyed being able to wake Sarah every Sunday morning by jumping on top of her, putting her face 6 inches in front of Sarah’s, and asking very loudly, “Auntie Sarah! Are you awake?!” The answer was almost always “Well, I am now,” with a big smile.

Auntie Sarah was very vocal about her love for Paige and Eli. Eli played a huge part in Sarah overcoming her anxiety. While he was still in the hospital, Sarah built up the mental toughness to break so many barriers that had recently burdened her. 1. She drove on the freeway. 2. She did it at night. 3. She allowed herself to be a passenger in a car. 4. She rode in an elevator to an upper level in the hospital. She often shared the story about when Paige asked “Daddy, why are we going so slow?” because I actually maintained the speed limit, bringing Sarah up to the hospital to see Eli. Sarah immediately burst into laughter at the well-received distraction, as she tried with all her might to hold back tears of anxiety. The corridor to Eli’s section of the hospital was very long, and was solid windows on one side. As Sarah ran her hand along the wall on the opposite side of the corridor, she asked “Why do these corridors have to be so long?”

I will always remember her saying with such strong conviction “I will NOT allow my anxiety to keep me away from my precious nephew. I’m GOING to see him.”

This became an obvious turning point in Sarah’s life. Only weeks later would she quit her Bakersfield job, and move back up to Fresno, to see family she hadn’t seen in 4 years. Her newly found joy in her victory from Bakersfield and all that time in her life represented was apparent to all. She moved in with our aunt and uncle, her bedroom on the second floor. Only days before she passed, she leaned over the loft railing, declaring to our aunt, “Look! It doesn’t bother me any more!.” She would share in social networking circles “I’d forgotten what joy felt like. I’m happier now than I’ve ever been.” Sarah was in a better place mentally and emotionally than she’d ever been in her life.

I’ll always remember having lunch with her only a few weeks ago, while she was still in Bakersfield. She told me “You know, I’m 30 years old, and I’m tired of living like this. I’m an adult now. It’s time for me to start moving forward. I don’t want to be this person any more. I want to be with family. I want to be with Eli and Paige.” She spoke of plans including going back to school to get her nursing degree.

Just as everything started looking up… she was gone.

Reading her friends share their own stories about Sarah, I’ve begun to have my own realizations. I’m disappointed that it took her death and seeing through other people’s eyes for me to examine Sarah’s life closely enough to recognize its real worth. If I were to single out just one piece of Sarah that I will always remember, it will be her acceptance and love. Sarah accepted anyone, just as they were. She was genuine, empathetic, loving and completely accepting. She would take people into her heart whose values completely differed from her own, and she would love them.

I have found myself wondering what sort of woman she would have been at 40, or 50, or 60 years old. I think she might have been a little eccentric, certainly joyful, and still armed with a wit as sharp as a tack. While I certainly miss her deeply, I take great comfort in knowing she knew Jesus before she died, and is already spending the rest of eternity with Him. I am also so greatly appreciative of what she has taught me, a true love for anyone, no matter their story. I am a better person because of her. All of us are.