Once again we find ourselves in CVAcute. We are praying that third time’s a charm. We jokingly told Owen that if he plans to go back to the CTICU he’s on his own! Next stop is the “H” word… end of story! We headed over at 9:00am today. Owen was welcomed with big smiles and open arms. The entire medical team that is watching over Owen is rooting him on and they feel that they have set him up for the highest level of success.
Owen’s heart family continues to grow and we are so excited every time we gain a new family member and get to share his story. We now have over 1,300 warriors on Facebook and we are loved in over 40 countries through Owen’s blog. Our son’s story of survival has made its mark around the world and we thank you for helping us draw awareness to congenital heart defects. Thank you for your never ending love and support. For those of you that are new to our story, I’d like to make sure you know a little about Owen. He has a very rare condition called Truncus Arteriosus Type II (TA) and Total Anomalous Pulmonary Venous Return (TAPVR) as well as a VSD and ASD. In addition, he has a Neuroblastoma tumor in his abdomen that is presumed to be Stage 1 and 22Q11 microduplication. The odds of having Owen’s condition are incredibly rare. While, 1 in 100 children are born with a congenital heart defect only 1% have TAPVR or 1 in 20,000. Truncus Arteriosus affects 5-15 children of 100,000 live births. We were unable to find statistics for children born with these combined heart conditions. Additionally, there are only about 700 cases of Neuroblastoma diagnosed in the United States each year. Then add his 22Q11 microduplication with only 100 cases known and you have a pretty special guy. Our son truly is one of a kind. We are so excited to be a part of God’s plan for him and watch it unfold.
Although he is small (just 7.5 lbs at 12 weeks), he is MIGHTY! He reminds us every day that under all the wires and tubes he is a good old fashioned baby. At 12 weeks old he has learned to smile, giggle (Mommy and Daddy’s favorite new trick he learned), and growl. He has started to babble to us and adores his elephant mobile. He has the most intent stare and you can catch him focusing in on things all around the room. He loves to explore his surroundings and if he could talk he could tell you about every nook and cranny he sees! His new favorite thing is to be held… ALL the time. He can’t get enough of his Mommy and I am fine with that! He is still in preemie t-shirts but is way too long to fit in preemie pants. He loves to be dressed and looks great in blue! He has survived two life saving heart surgeries and numerous CT scans, radioactive scans and MRI. He has had 3 PICC lines, 2 arterial lines and what seems like thousands of PIVs. He has had more medication than we can count and has been extubated twice (still rocking it this time). He is beating cancer and baffling the doctors and his parents at every turn. He is living proof that miracles can and do happen.
I have talked about this topic before but I feel that it can never be talked about enough. When I was pregnant and many times throughout this journey we have asked, “Why?”. As the days go by and as we hold Owen tight we can’t help but think, why not! We never focus on the why for too long but when our thoughts go dark it always seems to be the first question we ask. There is a sermon that I have listened to many times by Pastor Britt Merrick of Reality Church (http://vimeo.com/58318290). Britt Merrick and his wife are two of the most positive inspirational people I have come across. His daughter was diagnosed with cancer 4 times at 8 years old. With a very heavy and saddened heart I share that she gained her angel wings 6 months ago and is now dancing with the Lord in Heaven. I can relate to the desperation and pain he speaks of when he has been screaming to God to tell him why. In his sermon, When Sparrows Fall, Britt discusses why asking why is asking God the wrong question. He says that you should not ask God why but rather as him to be with you in your time of sorrow and need. God never promised that bad things won’t happen to us in this fallen world. He has promised that he will always be with us. Instead of asking God why bad things are happening, plead with God to be with you as bad things are happening. Isaiah 41:10 says, “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.” God has glorious plans for Owen and we are so grateful that he has chosen us to be his parents and that he will be with us every step of our story.
As for an update on our sweet little lion, today was a good day. We have been very busy with our move to CVAcute and he is settling in well. He is doing good with his Dilaudid wean and is now at .08mg every 8 hours. He has a ways to go but if he continues to wean with little to no signs of withdrawal he can be off that nasty stuff by end of next week! We have been working with the Cardiologists to find a perfect “cocktail” of diuretics that Owen can take orally (through his NG) that will keep his lungs dry and not overwork his kidneys. We went up on his Lasix today and hoping to have a clearer X-ray tomorrow and get closer to the right dose! We met with the Occupational Therapist today as well and Owen is making teeny tiny improvements. He was able to take 3 mls (about the size of one teaspoon) of milk orally through a bottle with his morning feed. His second try he fell asleep after 1 ml. They would like him taking 5 mls through the bottle 4 times a day. His ultimate goal is 55mls orally every 3 hours and he should be able to finish it within 30 minutes to one hour. He will still be getting his feeds through his NG tube every 3 hours to ensure he is getting full calories until he reaches his oral goals. Needless to say we have a ways to go but have full faith in Owen that he will do great! All of his medications have been switched to oral/NG and we think it is upsetting his tummy just a bit. His diarrhea and vomiting have significantly decreased and today we worked with the nurse to span some of his medications out. We are hoping this will be a little less harsh on his belly.
Thank you from the bottom of our hearts for your prayers, care packages, messages, and love. We pray for each one of you every day and ask God to give you the desires of your hearts. Wishing you all a beautiful evening!