100 Days with our Miracle

20130823-225331.jpg100 days… 100 nights… That’s the length of time we have been at CHLA. 100 days… 100 nights… That’s the amount of time we have celebrated every breath (assisted or not) that our precious son has taken. He has a smile that can change your mood in a second. He has a laugh that takes your breath away. Looking into his deep blue eyes can tell you more about life and God than any experience or adventure ever could. He has an old, gentle, loving soul. He has done everything we have ever asked of him. He has survived every surgery, every bump in the road, every hurdle that has ever been in his way. He is our hero.

We have so many dreams for our future with Owen. Before he was conceived we had endless dreams for him. When he was in the womb we had many of those dreams crushed when we received his diagnosis. We spent time mourning those dreams and then we dreamt new ones. Owen arrived in a much different way and once again our feet were knocked from under us. Our dream of being home in 2 weeks was shattered at week 3, then again at 4, again at 10, and so on. We look up at week 14 and instead of mourning another week gone by living with our child at CHLA, we are filled with hearts of thankfulness that our God has a plan. Our dreams and our plans have been put aside as God has asked us to wait and forge forward with His plan. We faithfully seek the Lord and trust in him. We find peace in Jeremiah 29:11, “For I know the plans I have for you says the Lord; plans to prosper you and not to harm you; plans to give you hope and a future.”

In the coming weeks we are going to once again ask Owen to overcome a big hurdle. We are asking him to continue to fight and fight hard. It has been a tough few weeks since we returned to CVAcute. We have hit road blocks, stalls in Owen’s recovery, and been through many meetings with his medical team. On a positive note, Owen did achieve a HUGE milestone. As I type this he celebrates not only his 100th day of life but also 42 hours free of Dilaudid! He can show withdrawal signs for up to several days once he is taken off. Please pray he can sustain himself narcotic free so we can check off one of the major goals for his discharge.

20130823-225316.jpgHowever, with that joy another system is causing much pain and frustration. It is very common for heart babies to have issues with feeding. Many of them are denied feeding until after their first surgery and many develop oral aversions from intubation, or chyhothorax from an issue post op, among other things. Owen has surprisingly handled his feeds relatively well throughout his recovery, until recently. So much so, that he has been NPO or unable to receive feeds for the last 5 days. He has been on TPN and Lipids intravenously since we made him NPO and is unfortunately losing weight. As you know he had an upper GI study done on Monday that showed he has extremely slow motility and severe bouts of reflux. We had a follow up test called the Gastric Emptying Scan this morning and it confirmed the Upper GI findings. The positive of the test today was for the first time we saw Owen’s face with no tape and no tubes. The NG had to be removed during the scan due to the radioactive contrast. As we had mentioned on Wednesday, we had a conference with Owen’s doctors this morning to discuss the best course of action to get him feeding and home. Ultimately the best course is in the form of another surgery. We began trophic feeds (minimal amount of feeds to stimulate the gut and keep everything moving) this morning at 3cc continuous into his NG. We will be advancing this amount every 12 hours by 1cc to a goal of 15cc. Due to his reflux we have to monitor him very closely to make sure he does not aspirate. If he can tolerate the feeds NG, we will be consenting to a Gtube surgery. Should he not tolerate the NG feeds we will have to consent to a GJtube (feed into the jejunum) to eliminate the bouts of reflux. We are hoping Owen can tolerate the full feeds, begin to gain weight, and a clear plan can be decided on the Gtube or GJtube early next week.

20130823-225324.jpgI have a habit of saving the biggest prayer requests for last. Heart family, we are begging for your prayers and asking that you continue to pray for a miracle for our son. Owen’s TAPVR has proven to be incredibly complicated and has caused many setbacks in Owen’s recovery. On July 22nd he went in for his second open heart surgery to repair the original TAPVR surgery. This was in no way at any fault of the surgeon or the care that he has received. We were told that veins can be very finicky and can either cooperate very well or can reobstruct and do terrible things. After his first surgery, Owen’s veins began to scar at the surgical site and it was causing blood to back up in the lungs, extra work on the heart, and ultimately causing respiratory failure. The scarring progressed very quickly and needed immediate surgical intervention. His second surgery proved to be successful and Owen has done well. However, on Tuesday, Owen’s echo results showed that the veins have begun to scar again. There was a follow-up echo done on Thursday confirming that some scarring is present. This could be no big deal if the scarring does not progress or with a very heavy heart I have to share that if they scar again it will be terminal. We have been processing this news and have fallen on our knees in prayer. What we have realized is the truth that life is short and there is a place so much more beautiful than the earth we live on now. None of us know how long we will be here. Each one of our lives have been mapped out. While the emotions come in waves, we have begun to accept that our son has a potentially terminal illness. We are aggressively, cautiously optimistic that this is not an issue and that these incredibly painful discussions never had to be had. That the words that I type in this entry, I can one day delete because they meant nothing.   Each moment we celebrate with Owen. We dance with him, sing to him, laugh with him, cry with him, take in every new first and try our hardest to give him everything a heart healthy baby would get outside of the hospital. We have made our new normal a beautiful and happy place. Each day we will try something new with him. We will experience everything that new parents should experience. We will chose to live no matter what our circumstances are.

We thank you so much for your endless prayers and support. I would like to ask that each one of you shares Owen’s story of hope. The more prayers we have the louder we will be heard. God says, “For where two or three gather in my name, there am I with them.” (Matthew 18:20). Please gather with us. We believe in miracles and believe our son’s story is much bigger than this. We love you all and couldn’t do it without you!

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FOURTEEN WEEKS

20130821-221542.jpgThank you for your patience with us as we receive and process the information from Owen’s recent tests. We will be making some big decisions at a meeting with all of Owen’s doctors on Friday and we ask that you pray for God’s wisdom and guidance. Thank you for riding this ride with us and for your endless support. We will share more as the pieces come together. In the meantime, Owen and I were doing some dancing today for his 14 week birthday and we wanted to show off some of his moves. Visit his Facebook page at http://www.facebook.com/lionheartowen to see the video. We love you heart family!

X-ray expert

20130819-190700.jpgHi Heart Family,

Hope you all have had a great Monday. I love Mondays. Stuff always happens at the hospital on Mondays. There’s a lot of waiting on the weekends but it makes it fun to just hang out and spend time with mommy and daddy.

I have been pretty hungry lately. I can’t remember if mommy told you, I started throwing up on Friday and by Saturday I couldn’t keep anything down. They started me on fluids and I still am not eating cuz they are trying to figure out what’s going on with my belly. I have been losing a lil’ weight and mommy’s sad cuz she says I will feel much better when I am chunky. They decided to do some tests today and I had to go down for an X-ray this morning with contrast. Then they had to come to my room every two hours to take another one. They kept disturbing my naps but I thought the X-ray tech was funny and I would laugh at him when he tried to make me lay straight. I had 7 X-rays in total today! They haven’t told mommy and daddy the results yet but they said they’d tell you as soon as they knew something. Mommy has a theory that the doctors think is interesting. She thinks that my bowels are VERY slow from being on Dilaudid for so long. When I was trying to eat with that weird bottle thing I got TONS of gas. My tummy is so slow I couldn’t get rid of it. Then they wanted me to eat but I had no where for it to go so I threw it up. She asked if they could all talk about the meds that I am currently on and see what can be done about finally getting me off the Dilaudid and getting another med to speed up my tummy. Hopefully they will listen to her. My mommy and daddy are really smart and I think they are right most of the time. But, they still aren’t doctors!

Hope you have a good night and please remember to pray for me. If you could also pray for all the other heart babies out there! We have it pretty rough sometimes and there are a lot of us out there that need lots of prayers!

Love you all! Xoxo Baby O

Ps. My mommy is getting pretty buff and good at typing while bouncing me but I noticed she makes lots of typos… Her editor (my daddy) had to go back to work and isn’t able to double check her oopsies. Thanks for showing her some grace, she says its hard to see the screen when she’s bouncing all the time.

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One ML at a Time

20130816-190308.jpgEven Tiny Superheroes need some rest! Owen has been doing well since we came over to CVAcute. He has won over all of his new nurses and respiratory therapists. Mommy has been sleeping at the hospital every night and getting used to having to be “on” at all hours of the day. They weaned Owen’s Dilaudid again yesterday and he’s been struggling a little bit. He is down to receiving it only twice a day and tomorrow we will be weaning him off and only giving him “rescue” doses should he show signs of withdrawal. It’s so close to being done and we can’t wait till he is no longer dependent on it. Watching your 3 month old having heavy narcotic withdrawals is one of the toughest things to do. We will not miss Dilaudid… Owen might, but we will definitely rejoice! As we had expected feeding is a big challenge and takes time. We are taking it a feeding at a time and noticing that Owen is advancing by one ml every day. At this rate he will be at full feeds when he is ready to enter college. All joking aside we would love your prayers in this arena. It is exhausting and can be discouraging. Owen gets frustrated or wants to play instead of “work” for his food. We know he can feel our emotions and it just makes it that much more difficult. Please pray for him as he learns how to feed and becomes free of Dilaudid. This is our last hurdle to get to the “H” word! We can do it!

3rd Times A Charm… We Pray!

20130813-182704.jpgOnce 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.

20130813-182711.jpgAlthough 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.

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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.

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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!

Dance Monkey Dance

20130812-214349.jpgDance monkey dance! If our little man could talk that’s what he would say! His tummy has been hurting him and he’s been spitting up about every feed. They recently changed all of his meds from iv to oral (through his ng tube). We think its been giving him a tummy ache. He’s happiest when he is held and bouncing around! Please pray for his sweet tummy and for our thighs to keep up with all the bouncing squats! Good night heart family.

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