Outside!

Eli loves to be outside. He would be outside all day long if we allowed him.

He loves to dig in the dirt.

He loves to draw with his chalk.


He loves to slide.


He loves to watch the koi.


He is all boy and we love it!

Family Fun

Since becoming nearly complete shut-ins, family outings are challenging. No, they are nearly impossible. We always have to look for ways to take the family out to experience the world, yet be safe from illnesses around us.

This past weekend presented us with one of those rare opportunities where getting out and keeping safe were both possible. ClovisFest begins their days with a hot air balloon launch early each morning. So Sunday morning, we gathered up the kids at 5:30 and headed up to Clovis to see the launch.

We watched the sunrise over the mountains as we drove up. Paige found that really fascinating. Here we are all bundled up waiting for the balloons to inflate.


It was fun to teach Paige how the balloons worked. She loved to see the fire go into the balloons.


Eli sat and watched quietly, yet completely engaged He was fascinated with the balloons.


We had a great time watching the balloons! Someday, I'd love to go for a ride in one.

Our Little Hero!

Yesterday, I (Tanya) stepped outside for a brief moment to close the gate to the backyard. During that time, Eli began to have a reflux episode and was beginning to struggle to breath. Paige was inside and noticed, so she came out and said to me, "Mommy! Eli needs oxygen!!"

After getting Eli through his episode, I was very intentional in letting Paige know how proud I was of her. She got lots of praises and hugs, just to be sure she knew how much of a hero she was in helping Eli out. During this time, she says to me, "I saw he was choking and came and told you quickly!" She makes me more than proud!

Jason and I are so proud of the little hero that Paige is. She is always watching out for her brother. We are very thankful to how in-tune she is to Eli's care. She is our little nurse and is so responsible and loves to help us take care of Eli's needs. Yesterday's event made us realize even more what a special gift she is in our family and we are very thankful for her! She's really is Eli's Hero!

The Many Faces of Eli

Since it had been so long since we'd taken pictures with Eli, we decided to have a mini photo shoot today. He's always laughing and always smiling, it's just so easy to get a good picture. Here, we'd like to share a few of the faces of Eli, and ask that you continue to pray for positive results from his next cath lab, June 7th.

Living with No Regrets; From the Heart of a Heart Mommy

This past winter has been a challenging one in many ways. As you all know, we have been living as shut-ins since September. We have chosen to do this to keep Eli healthy. I’m so proud to say that since then, Eli has NOT been sick once! When you stop to think about it, it really is a miracle. Most pediatricians will tell you that kids will get an average of 10-12 colds a year. Eli had one in August, and none since! WOW!! We receive some relief in knowing that our hard work is really paying off.

While living as shut-ins, I know that we have offended many, hurt others, and broken some hearts. We have said "No" to visitors more than we could have ever wanted. We've even suffered permanently broken relationships because of family who do not understand our measures. Trust me, there is nothing worse than telling the kids’ grandparents they can’t come see their critically ill grandson. Jason and I haven’t been to a social function since September. No birthday parties, no Christmas parties, no church, no family gatherings….nothing! It has been so incredibly difficult not to be a part of the social world. I have learned to do most of my shopping online. Grocery shopping, Costco runs, and picking up prescriptions have all been added to Jason’s list. The only places the kids and I go are to doctor appointments.

The hardest part of all of this is seeing Paige miss out on so much in her developmental years. She hasn’t seen many of her friends in months... so long, many are forgotten. She's can't even tell us what color hair they have, any more. She doesn’t get to go to the park, the zoo, or AWANA. She doesn’t go to the grocery store. A fun outing for her is CHCC for one of Eli’s doctor appointments. How fun can that possibly be for a 3 year old? We so badly want to enroll her into gymnastics, but can’t. She should be in pre-school, but can't. She should be freely playing with her friends. Instead she can’t, “in case they have germs.” And she knows it. Paige has a great imagination and loves to play with her brother. She watches over him like the wonderful big sister that she is. She is an amazing kid, and we are so very thankful that she has an easy going, curious, fun, loving character. It certainly makes dealing with our situation so much easier.

I know many have wondered why we've taken such extreme measures. "Why can’t you come to church?" "Why can’t Paige play with her friends if they have been healthy?" "Why can’t the grandparents come see their grandkids? It’s only a short while." Trust me, we’ve heard them all. We’ve often asked ourselves the same question. But we always come back to the same realization. What if? What if a visitor has a cold or flu virus that isn’t infecting him/her, but infects Eli? Just because you're not sick, doesn't mean you're not a carrier.What if Tanya gets sick with a simple cold? Who will care for the kids? Jason has to work. Due to babysitting limitations, Paige actually had to stay with a friend once, and only once. She got sick, and was quarantined with grandparents and friends without kids for two weeks! What if Eli were to get sick a few weeks before his next cath lab? Will that make him fail yet again, meaning there is NO chance at surgery? As parents we have to weigh all of these options. Every single time we're asked if someone can come visit, or if Paige can go to a party, or we are offered dinner, we consider all our options. The only answer has always been the same answer. We cannot compromise. We have to live our lives with no regrets for Eli’s care. I don’t want to fail the next cath lab having a “what if” in the back of my mind. I have to give Eli the BEST CHANCE POSSIBLE to be a candidate for his next surgery.

If you are one of those people who may have been offended in the process of us living with no regrets, please look at our situation from our point of view. If you think you understand, multiply that burden by 100. It has not been easy for us. But so far, we have no regrets for what we have done. And we will continue to live this way, until we feel it’s no longer necessary.

Huge progress

Eli is proving to be a Wedehase child, following in Paige's footsteps. When they decide they want to do something, they do it 110%. Ever since Eli's pacer was installed, we've noticed a huge improvement in his energy levels, which has helped in his development. He is getting stronger, almost enough to sit up on his own. He is balancing and correcting himself, reaching for toys, and pulling himself up from leaning back against something. He'll be up on his own in no time.
His verbal communication is getting so much better too. He was so quiet and stoic for so long, we were getting concerned of possible cognitive delays because he just wasn't picking it up. Lately, he's been babbling a ton more. He says ba-ba, and just yesterday began saying da-da-da very clearly. It's very much music to our ears. He is also showing us that he understands what we are saying. If we ask him a question, he'll often shake his head no as a response. Often we do it to be silly, but he seems to be getting it.
Eli is also showing more interest in foods. He sits with us in his highchair while we eat our meals, and he is constantly watching us eat, and even smacking his lips. Most of his feeds are still through the g-tube, but he is getting one chance at the bottle a day. Lately he has also been getting one serving of beginning foods. We started with rice cereal, then sweet potatoes. We'll eventually add in bananas and other foods to vary his diet. He takes in 10 or so bites before he's had enough, then the rest goes into his g-tube. The biggest thing for Eli is that he doesn't get a food aversion, so we are encouraged he is taking anything by mouth.


Eli saw his cardiologist this week. It's the first office visit since his pacer was installed. Dr. Heragu was pleased with his growth and development. He didn't make any changes to his medications or diet, since everything is working well as is. We also discussed when to do the next Cath Lab. Eli's allergies have been making him slightly congested in the nose, so Dr. Heragu was hesitant to test him with even the slightest congestion. Eli just started taking Claritin again, so we are hoping it'll clear up his nose. Since we are looking at his lung pressures, any little thing can affect the numbers. Dr. Heragu wants to see us again in 6 weeks, and we'll probably set up a Cath Lab sometime after that.

We are giddy little parents here. These big strides are so encouraging for us.

After His Bath

Here's one for the grandparents. Eli after his bath, au naturale. No wires, no tubes. Just one cute, happy, little growing boy!

March videos

Here are a couple videos from this week, at home. Eli loves to laugh, and Paige loves mommy.

Birthdays and Behavioral Changes

Congratulations, Eli, on your first birthday! We celebrated quietly at home, opening gifts from friends and family. We later caught up with some of the grandparents in our usual fashion, our dearly appreciated Skype and a webcam.

We're noticing drastic changes in Eli's demeanor and activity. Certainly, this is related to his pacer and improved cardiac output, but we think it might also be due the reduction of one of his medicines, Reglan (metaclopramide). This drug is used to speed the processing of his feeds, allowing us to push as many nutrients through him as possible. It's also a bit of a controversial drug, in that some of the potential side effects can be pretty intense. Many of these side effects are based around confusion, a mental "fog," and a depressed mood. Unfortunately, we've just had to surrender to those possibilities because getting more food into him has been so important, to maximize his physical growth and strength. Without the Reglan, it was very common for Eli to retch many times per day. This would turn into a choking event, and we'd watch his heart rate plummet as it starved for oxygen. Several times per day, it really was as terrible as it sounds.

Lately, we've been able to both increase his feeds and, at the same time, decrease his Reglan. He's now getting 60% of the Reglan he was getting, and we're working our way toward total elimination, if we can. We haven't seen Eli retch in a couple weeks, and only a couple times since his pacer implantation. We've asked Dr. MacDonald if there could be any correlation. He explained they were theoretically possible, but far-fetched at best. Whatever the case, Eli is clearly more alert and active lately.

He's also much more mobile than ever before. He's figured out how to roll himself around and find himself on the other side of the room. We've had to add an extension hose to his oxygen feed, to allow him a longer "leash." He's moving across the floor to grab for toys or satisfy curiosities. He's learning how to get himself into trouble... and we LOVE it!

Here are a few photos from him first birthday.

Home again, with a catch

We made it back home today. Eli has slept terribly at the hospital, never more than 15 minutes at a time. When we started heading home, he was sacked out in the car in very short order. We brought him, fed him, and he slept for 3 hours. There's just nothing like your own bed, huh?

Paige has spent the last few days staying at a few different friends' houses. Today, she picked up a low grade fever. She's feeling fine, and just like we thought, it hasn't slowed her down at all... but it means she can't be near Eli for a while. She'll be staying with Nanna & Nanno until Monday night. Maybe we'll get to be an entire family unit soon!

On a different note, Eli is a notoriously difficult "poke." It's extremely difficult to get IVs in him, partially because he's been stuck so many times in his life, it's hard to find a clean spot. We've actually reached the point where the phlebotomists aren't allows to poke him any more, they always call in a PICU nurse. One area they've never touched is his head, where the veins are HUGE, shallow, and plentiful. As one nurse stated "His head's like a gold mine!" The downside is they have to shave his hair to get to them. Poor little guy! :)

Here he is at home, tonight.

Checkpoints & Quitting Points

We’d like to draw a bit of a mental picture for you, if we could. Tanya and I once hiked Half Dome. Along the way, there is a path called the Mist Trail, earning its name because it passes along the bottom of a waterfall, where heavy winds and mist are constantly bombarding you. Very careful and calculated footing is required here so you don’t fall. Unfortunately, this means your eyes are always on the ground, rather than looking around to enjoy the view. Immediately following is a climb, very much like giant stairs. Some steps are as high as your waist. It’s very tedious and strenuous, especially with a 45lb backpack. It’s not until you reach the top, a checkpoint of sorts, that you lift your eyes and look around and behind you. Looking back at those steps, you’re amazed at how much progress you’ve just made, and how many steps there actually were. It’s totally different than when you’re looking at them one-at-a-time. We “couldn’t see the forest for the trees” to use another analogy.

We’ve done the same thing, figuratively, with Eli. Very soon, Eli will be one year old. As this realization hit us, it was very much like achieving that checkpoint. We’ve started to look back at all the steps and trials we’ve just climbed. Wow, there were a lot! But, standing on every one of those steps are all our friends and family, who have helped us make it over each of those steps. You have all pulled us up each step and helped carry our packs much more than you realize. We’ve been through so much with him, it all starts to blur together, and some even forgotten. In the last week, I’ve gone through our entire blog, our journal, to re-gather up some of the memories that have fallen from our grasp. Just like with the Mist Trail, I find myself thinking “Wow, that’s a lot!” Talk about putting things in perspective.

So, let’s continue hiking, shall we?

Eli had his pacer installed a week ago, and we came home 4 days later. We’ve taken care of his medical needs at home; breathing treatments and pain relief medications. Yesterday, he was supposed to have a follow-up appointment with his surgeon, but he wouldn’t tolerate sitting up in his car seat. Dr. MacDonald rescheduled it for today. Once again, he wouldn’t tolerate sitting up. Dr. MacDonald insisted we find a way to get him up so he could see him, first hand, because this wasn’t normal.

On the trip up to the hospital, Tanya noticed fluid swelling around Eli’s pacer site. This is extremely bad news, and has the potential to be the worst possible news. If there’s an infection around his pacer, he will have to go back into surgery to have it removed, then kept in the hospital for multiple weeks to heal from both the infection and the surgery, then another surgery to have another one re-installed. This blog and our lives have been filled with so many medical explanations and procedures, it’s easy not to flinch at them any longer. But if you take a minute to pause to consider what’s really happening here… it’s so frustrating (such a simple word feels so incredibly inadequate). One minor infection may cause two additional open heart surgeries. The possibilities were enough to finally, FINALLY break Tanya and I down to nothing. We’ve heard so many “You’re so strongs,” but everyone has a break point, and we’ve now seen ours.

Today, I finally cried for the first time since Eli was born. In fact, the first time in many years. We had “that talk” with the doctors, at our prompting. I asked Dr. MacDonald when, in his experience, he has seen most parents finally ask if they’re doing the right thing by fighting so hard for their child’s life. At what point have we poked, pricked, cut and abused his body enough, and it’s time to say “That’s enough?” Is it time to admit we can’t win this battle? Is it time to take him home and let nature take its course?

….

I wish I could put into words what it feels like to reach this point.

….

The extremely abbreviated version of Dr. MacDonald’s reply was “That’s a parent’s decision, not mine. I will support any decision you make. However, I’ve seen a lot worse than this, and kids living relatively normal lives on the other side of the battles.” It was what we needed to hear from someone who sees hundreds of these situations, and completely understands every potential medical hurdle in front of us.

1 Corinthians 10:13 No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

When we started this blog a year ago, it was partially because we couldn’t find one for ourselves, as we entered this journey. We wanted to know how it affected parents’ and siblings’ lives. We wanted to know about the non-medical parts of the journey, not just about the surgeries and charts. We never found it. We felt led to journal everything here, for families who travel this road behind us. A true look at the real life side of this road. We knew this would require significant transparency on our part, and that’s what this post is about. We began to prepare ourselves to choose to let Eli die.

__________________

The previous was written on Thursday. I’ve decided to keep in intact. Fast forward 3 days to today.

We sat around in waiting rooms for radiology and the lab as Eli’s mood continued to degrade. Insurance red tape is probably killing more people than we want to talk about, but it is not my intent to turn this blog into a political one. We went back to the cardiology clinic, and they admitted us straight into PICU. The X-rays, ultrasounds, blood draws and EKGs were all done within 30 minutes. His white blood count was not elevated, nor did he have an abnormal temperature. These both pointed away from infection, but we had to be absolutely certain. They aspirated the fluid out from the pacer area. It wasn’t puss, nor clear fluid. It was all blood. While that sounds a little shocking, it’s not nearly as bad as it sounds. In fact, we’re all VERY excited to see it wasn’t puss. Puss would mean he’d have that pacer taken out immediately. They called this a hematoma, possibly a broken vessel caused as the pacer settled in, but no concern was shown for specifics. They wrapped him up for a little pressure on the area, and called it “good.”

The blood went to the lab for tests. They found no “bugs.” Everything appears to be OK, but we’re waiting 5 days on bacteria tests, to be 100% certain. We desperately want these cultures to come back negative, because they could still mean pacer removal… but things are looking very positive, otherwise.

Eli remained a little irritable for a couple days, possibly due to a small rash around his feeding tube site, or possibly due to where ever that blood was coming from. Today, he finally made some huge strides. When Tanya walked into the room, he turned his head toward the door, saw her, and smiled as big as ever! She spent the morning playing with him, holding him, watching him smile and hearing him laugh again. In her words “We have our little boy back! I haven’t seen him this happy since before the pacer was installed.”

Please pray for no infection. Please thank God for continuing to use Eli for His glory.

Smiling

Smiles today!

Pacemaker Rescheduled

We have received a one-week delay for Eli's pacemaker installation. Red tape is awesome. Apparently, our insurance doesn't think our surgeon is on their approved list, and the red tape involved may not be complete by tomorrow's intended surgery, so in our surgeon's words "Today, or a week from today won't make a hill of beans of a difference for Eli. Let's just wait until next week, rather than overload you with all sorts of medical bills so you can fight insurance to prove they need to pay them, anyway."

So... next week. Same schedule. Tuesday pre-op labs, Wednesday surgery.

Pacemaker Implantation

Eli was on a 24-hour heart monitor recently. It verified what was already assumed: his heart's electrical system isn't functioning properly. His heart's chambers are out of sync with each other, making his already compromised heart much less efficient than it should be. In addition, his heart rate is always much lower than it should be, dangerously low at night. Typically, kids at his age should have a heart rate averaging 120-160 bpm, but he averages about 80 bpm and only reached 110bpm when extremely angry. In very heavy sleep, his heart rate will even fall into the mid 50 beats per minute area.

Wednesday, Eli is having a pacemaker installed. This is a permanent alteration, and will be with him the rest of his life. It will help synchronize his heart's chambers and bring his heart rate to a safer level.

We're expecting a 2-night stay at Children's Hospital, and hopefully back home by the end of the week, should everything go well. We'll share more details as we know them. Please continue to pray as faithfully as you always have.

Christmas Photos

This Christmas was obviously a quiet one at home for us. With our need to keep Eli safe, it really limits our options. A couple weeks ago, we were able to see Christmas Tree Lane, since it didn't require us leaving the car. We have also had tremendous support from two of our dearest friends, who have taken our precautionary practices upon themselves, so they are able to be at least one piece of "social" for us. There's simply no way we could communicate how humbling and great this is for us, nor offer enough thanks.

Here are some glimpses into our Christmas this year, Eli's first. He continues to be such a happy, smiley boy, and continues to bring us so much joy. With Paige now three years old, we've begun to forge our own holiday traditions. Paige helped make candies. Below, she dips pretzel sticks in caramel before also dipping them in chocolate then crushed almonds. Yummm!!! Randy and Laurie brought Paige a few games for Christmas. Paige really looks forward to seeing them, and they're so great at having the time and patience to enter her world and play with her. Here, Paige is beating Randy at a game of Ants in the Pants.

Also below, Paige now helps decorate the tree. And, Santa brought her the blue fork and spoon she asked for. Eli is all smiles, as usual, and completely captivated by the blue light on his first Christmas present.

10 months!

Wow! Eli is 10 months old, now. Saturday, the 19th, he'll have been home from the hospital 6 months, and the following day is 10 months from his first heart surgery. To us it seems like eternities ago. This year has been a big haze and fog to us. Yet at the same time, it all seems like yesterday.

Since coming home, Eli has made great strides developmentally. When he came home, he was 9 pounds and could barely hold up his head. He was essentially a newborn in a 4 month old body. In fact, one of the therapists who works with Eli doesn't "count" the months he was in the hospital when she evaluates him developmentally. She sees Eli as a 6 month old, not 10 months.

Eli is growing stronger by the day. His head control is strong. He'll sit supported for short periods, sometimes pulling away from the back support and balancing himself. Just recently he started bearing a little weight on his legs. Eli likes to grab for things next to him while laying on his back. He has the ability to roll over, just chooses not to. He not fond of tummy time. Mommy was very relieved when he figured out how to put his pacifier in his mouth on his own, especially in the middle of the night.

Eating presents a different challenge. He is mostly fed through his g-tube. We give him the opportunity to drink from a bottle at least once a day, but often he'll only drink an ounce or two before he tires out. Our surgeon gave us a great analogy that helps us understand Eli's feeding. Eli's body is working so hard to maintain his heart, it's like he is constantly running a marathon. When you add in feeding, it's like eating a large meal while running that marathon. It's just too much. For that reason, we don't push him too hard. Eli has been able to explore with a few solid foods. His been given rice cereal, sweet potatoes, plums, and bananas. He'll take a few bites from the spoon, play with it, and eventually swallow it. It's certainly a foreign thing to him. He's not sure what to do with it.

One thing Eli has never lacked in is his socialiblity. When he was in the hospital, he got tons of attention from the nurses, therapists, doctors, and volunteers. He loves to be talked to, and will smile at any movement or sound. He has earned the name Captain Smiles, and wears it well. He adores his sister, Paige. She loves entertaining him and making him happy when he is upset. She is the only one who can do silly things and make Eli truly laugh. They share a great bond.

Eli is fairing well so far this winter season. Becoming shut-ins has not been easy on us, but it is proving to be protecting Eli, so that makes it all worth it. Please continue to pray. Eli is running a race against time. We pray daily for the miracle Eli needs to have to be a candidate for his next surgery.

Modeling with Paige

Montana de Oro, just before sundown.

After a 1/2 mile hike down to the oceanic cliffs of Montana de Oro for some family photos, Paige first warmed up the camera on one of the grassy hills. I'm just an amazingly proud daddy, that's all. I love this little girl!

November Photos

Being an unusually warm day, and probably the last of the year, we decided to make the trek to Woodward Park a couple weeks ago for their annual cultural event in the Japanese Gardens. Fall colors were in full splendor and very few people were present. Afterward, we had a picnic lunch and Paige and daddy climbed over the rocks near the stream, and went "sploring" to find new stuff. Paige loves exploring.

Also, this week was Eli's 9 month anniversary. We figured he was due for another photo session. Eli's pictures were taken this afternoon.

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:

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.