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.

Making Daddy Proud

A few weeks ago I (Tanya) was listening to Blue Man Group while tidying up the house. Last week after dinner, Paige asked to dance to the "boom boom" music. I had to think what she might be talking about, and figured she must be referring to Blue Man. I found our DVD of their concert and played it so she could see the characters, but also the fun instruments they play. All four of us were rocking out to a very loud in-home concert of Blue Man Group. Paige started dancing around, eventually leading to head banging. Eli laid on the floor watching intently, and often laughing at his silly sister. Both of the kids enjoy listening and moving to rhythmic music, following Daddy's drumming and rocker footsteps.

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.

Spring is in the air

It's March, already! The whole family spent the weekend outdoors getting ready for everything to come back from its winter sleep. Pulling weeds, trimming trees, mowing the lawn, fertilizing everything, and even starting the vegetable garden because Lowe's already had stuff in stock. It might be a little early, but we're so anxious for spring, we planted them anyway. Tomatoes and artichokes, so far. There's still room for zucchini and one more vegetable, unless we don't do the giant pumpkins this year... then we'll have lots of space!

We almost forgot to bring out the camera, so there aren't a lot of pictures. But here's our Super #1 Helper, Paige, helping to clean up the weeds. She loves to help!

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.