There is a nursery rhyme that starts out with, “There was an old lady who lived in a shoe”. I woke up yesterday saying it over and over again only with a slight twist, “There was an old lady who lived in a shoe-BOX!” In just 37 days I have aged a lifetime and have managed to find comfort in my shoe box size surroundings.
July 10th marks 5 years that Jeff and I have been together. Our lives have been incredibly blessed. We both grew up having everything that we needed in safe and loving homes. When we moved out on our own we were both very successful and lived in homes by the beach enjoying everything that the “Orange County” lifestyle had to offer. When we met we went on incredible dates, vacationed, and spent a lot of time outdoors. Then when we bought our first home we were able to find a place that was everything we ever wanted. It had 3 huge bedrooms, a huge entertaining kitchen, a beautiful pool, in a great community and there is LOTS and LOTS of room for all four of us to have our space.
Owen has a beautiful nursery to come home to. He even has his own bathroom! The living room is full of swings, a pack and play, a rock-n-play, a bouncer, anything a baby could want. If you know me we have all of those things and it still doesn’t look cluttered. However, since the second we became a family of four our surroundings drastically shrunk! Not in the way you would think of when a baby is added to a family. Our surroundings have literally shrunk. We now live in a 350 square foot room, with a queen size bed, a single sink, and a tiny TV. When we are not in our new “home away from our very large home”, we are at the hospital in an even smaller shoe box. I apologize for whining about some serious first world problems. We are blessed to have a roof over our head and a hot shower every day. We are so grateful that Owen has his own hospital room and we have privacy during the long days. This experience has humbled us beyond measure and made us truly realize how blessed we are.
The material things are only just a start to the blessings that we have received. The love from our friends, family, neighbors and strangers from all around the world has shown us the true meaning of being blessed. In February we started Owen’s blog as an effort to tell his story, educate people on Truncus Arteriosus and be able to tell all of our family updates in one location. In my first post I said, “We knew that when we decided to have a child it would take a village to help us raise him. We never knew how large our village was.” Since sharing Owen’s Journey in February, his story has reached over 18 countries; he has 680 friends on Facebook, and many many more from word of mouth. He had 70 preschoolers praying for him together during class. He receives video messages of prayers and healing from his favorite heart buddies. He has fellow patients and other “regulars” within the hospital checking in on him daily, offering huge smiles and including him with their nightly prayers. A dear friend of ours ran a marathon in honor of him and won him an awesome medal. A 5k team has been started in his name. Incredibly generous donations have been made in his honor to both Hopeful Hearts Foundation and the Ronald McDonald House Charities. We have received generous care packages and hundreds of notes of encouragements via text, his blog, and Facebook. He even gets well wishes from his furry fans! Our village has shown us the true meaning of kindness and love. Thank you from the depths of our hearts for being there every step of the ride. The days are long and the nights are even longer. You are the medicine for the soul that we pray for each day.
In addition, God has surrounded us with perfect angels each day that are becoming sweet friends. These angels come to Owen’s bedside dressed as nurses, respiratory therapists, nutritionists, doctors, surgeons, social workers, and chaplains and do so much more than just work to heal Owen. They educate us, check in on us, cry with us, laugh with us, and wrap us in hugs daily. Their friendship and love for our family will be forever cherished.
When we learned about Owen’s condition we mentally prepared ourselves for 2-6 weeks in the hospital. We have been in Los Angeles for 6 weeks and unfortunately Owen has a long recovery to go before we hear the words discharge. This is incredibly discouraging. We heard from a fellow heart mom that when you are in the hospital the word Home is as bad as the worst four letter word. It will poison your days and make them that much longer. The longing for home will cause a home sickness like you could never imagine. It will suck the positive right out of you. We miss our home and our old “life” desperately but each day we are learning that Home truly is where your “heart” is and our heart is all wrapped up in our sweet Owen. We are getting better every day at waiting for the doctors to tell us when we can go home. Instead of begging and pleading for them to tell us when the light at the end of the tunnel will be, we are spending our days learning about Owen and continuing to do all that we can to be his parents. Jeff and I are getting better at changing diapers around all the wires and lines and Jeff changed his first poopy diaper solo yesterday! We are going to be more than prepared when the doctor finally says it’s time for you three to do this on your own!
We were told at the beginning that Owen is the driver of his recovery and the rest of us are his navigators. We have learned that Owen is an incredibly SLOW driver! The past four days have been spent by Owen’s bed waiting and hoping that the new things that the doctors are trying work. His main hurdles in his recovery are his respiratory and digestive tract.
We’ve had a huge change in the diet arena. Owen’s nutritionist is trying a new “recipe” for our little one. It appears that the Enfaport worked for the chylous effusions however, his tummy was not a fan of it. In an effort to find a food that he can tolerate and give him all the goodness from breast milk, she has created a feed for him using my milk and a low fat chylous friendly formula. The breast milk I am producing is being emulsified by separating the fat out of it. The skim milk is fortified with amino acids and Vivonex formula. The high fat milk is then frozen to use later and make him nice and chunky! He seems to be tolerating it very well! He is still intubated and having an increasingly tough time handling the tube in his mouth. He has a very sensitive gag reflex and when he moves or gets angry he gags and throws up. He now has an NJ feeding tube. This means that the tube passes his stomach and goes directly into his intestines.
In regards to his breathing he is still on high support on the ventilator. They are slowly weaning the rate and it appears it is going to be a long process. He received an echocardiogram yesterday and it showed moderate stenosis at the site of the TAPVR repair. This could be contributing to the difficulty he is having weaning from the ventilator. He will be receiving a follow up echocardiogram on Thursday to see if there is further stenosis. If there is they will have to take him to the cath lab for further investigation and see if it will require surgical repair. This is NOT something that we would like to have happen as it is a major surgery. In regards to his neuroblastoma, we are in wait and see mode until his follow up cat scan on Wednesday. His favorite fellow will be on and we feel good about this transport.
Please continue to keep our family in your prayers. We ask for prayers of continued healing for Owen’s lungs, that the stenosis in his pulmonary veins does not increase, that the neuroblastoma does not grow and is isolated to his abdomen region, and that he continues to tolerate the new food and gain weight. We also ask that you pray for Jeff and I as we are tired and realizing that God’s plan for us is complicated. We ask for clarity in Owen’s recovery and peace in our hearts as we endure long days of waiting.
Many of you have asked questions about Owen’s Supracardiac TAPVR heart condition that was repaired along with the Truncus Arteriosus. Children’s Hospital of Philadelphia has a great webpage explaining TAPVR and can be found at: http://www.chop.edu/service/cardiac-center/heart-conditions/total-anomalous-pulmonary-venous-return.html