100 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.
However, 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.
I 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!