Please hold on tight as this is going to be a long one! It has been a very busy week and we have much to update our heart family on. I hesitated writing this post and it has taken almost 3 days to complete it. We still have so many questions and I feared putting some of what we have heard in writing. I feel that when you write something down it makes it concrete. We do not want the things that we’ve heard to be concrete. Please forgive me if I have spoken about this in previous posts, it is all finally beginning to come together for us and I would like to share it as a whole. Our hope is that other heart families can find comfort and encouragement by reading about our journey should they be faced with similar situations in the future. We have received so much support and encouragement from all of you. We have faith that God hears all of your prayers and for that we are forever grateful. Matthew 18:19-20 tells us, “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Thank you again for gathering with us!
I have always joked that you must be careful what you pray for because God will prove to you that he has answered your prayers. Because of this theory I believe that it is VERY important for us not to pray for patience! However in a moment of weakness recently, it appears that I have broken my own rule and prayed for patience because man oh mighty is He showing us that we have been gifted with it. After 30 days and meeting with 4 major specialties at CHLA we have learned to bite our tongues, hang on tight and pray for anything BUT patience!
This week we have been faced with a very big and scary world outside of the CTICU. As you know, Owen has been on many “field trips” throughout the hospital. The outcome of the tests done on those trips had the potential to alter Owen’s recovery and make us members of additional “clubs” far beyond the “heart family club”. The doctors have been diligently working together to provide the most complete care for Owen and get him healthy so we can all go home. They have literally checked every nook and cranny on our little guy. Several weeks ago, one of Owen’s doctors mentioned there was some swelling in his head and they wanted to look into it. They ordered daily head circumference measurements and also an ultrasound of his brain. The results came back from the ultrasound and we were told that there was moderate swelling of his ventricles and he possibly had hydrocephalus. We were shocked. The doctors contacted neurosurgery for further evaluation. We met with the neurosurgeon and he requested a follow up ultrasound as well as an MRI. Owen has been very sick the past week and we were very concerned about him traveling. We had the hardest time believing that he had an issue with his brain and even more that he could potentially require brain surgery. Should he have hydrocephalus they would have to put a shunt in his brain or a small hole to redirect the accumulating fluid. The shunts have a high failure rate and potentially require additional surgeries down the road. We were petrified of what this would mean for Owen as he grew up. He had a follow-up ultrasound this week and it showed that there was still swelling but it had not increased. He then went for the MRI on Wednesday. This was very hard on me as they needed to give him additional sedation drugs. He has been weaning off the narcotics very well with little to no signs of withdrawal. The additional medications made him look very drugged and not like our sweet baby. The results came back within a day and yesterday we were told that there was no need for surgical intervention! The neurosurgeon said he is “not impressed with Owen” and does not believe he has hydrocephalus! I have never been so grateful for someone to be unimpressed with our son! Owen will have to be monitored by his pediatrician to check for any developmental delays or pressure on his brain but for now neurosurgery has been wiped off of Owen’s recovery plan!
Owen’s lungs have been one of his biggest hurdles. He is still intubated and has been since his first day of life. The longer he is on the ventilator tube, the bigger the risk is for infection and dependency. As we have mentioned, he has had issues with fluid on his lungs and then has dealt with his lungs collapsing. The doctors are a little perplexed on where the fluid is originating. There is a condition called chylous that causes an accumulation of lymphatic fluid in the lungs. This happens from fat in food. They tried him on a special formula to reduce the chylous and it cleared up his lungs, however, he did not tolerate the food and last weekend he was projectile vomiting for almost 36 hours. This caused a huge setback for our little guy. They decided to stop feeding him and focused on diuresing him to get the fluid off of his lungs. It had been four days since he had been fed before his lungs showed any improvement. Yesterday they decided to start feeding him breast milk again to see if the fluid returns. If it does, they will have to do a procedure to put chest tubes in and drain the fluid from his lungs. They will test the fluid to see how best to move forward and if it is a chylous effusion. If he tolerates the feeds and his lungs do not accumulate additional fluid then he can continue on the breast milk and begin the process of weaning from the ventilator. If he begins to vomit again from feeds they will have to do an upper gastrointestinal study to see if he has any issues with his digestive tract. So, as you can see there are still many questions regarding his lungs and digestive tract but we are moving in the right direction!
Father’s Day came early for Jeff and on Thursday Owen was in his Daddy’s arms for the first time. It was the most precious moment I have ever witnessed. I am so blessed to be Jeff’s wife and I thank God every day that he is the father of our incredible son. He is a man of integrity, deep faith, and has a love for Owen and I that is greater than I could ever imagine. I love him so much and thank God everyday that he chose us to take this adventure together!
Owen had a fun visitor on Thursday, as well! The hospital offers musical therapy to all the kiddos. Our nurse signed Owen up and the sweetest young woman came in with a huge smile and her guitar. We found out that Owen loves music as much as he did when he was in my belly. He was wide awake when she came in and sound asleep and peaceful after one Zac Brown Band song. They will be visiting Owen once a week and have offered to visit any time he is agitated or having a tough time calming himself down. We are so grateful for all the incredible programs that CHLA offers!
I have been hesitating to type this last part. As I mentioned before, I fear things that are written become concrete and I am having a hard time believing that this is part of our journey. This week we were hit with the word cancer. This, amongst many other things, was NOT a part of the journey we ever imagined. Owen has a mass in his abdomen and we have been meeting with oncology to determine what it is and what kind of intervention it will require. As of last week they were planning to take him into general surgery to biopsy the tumor to decide how aggressive treatment needed to be. Fortunately, the general surgeon and the oncology team decided to pull back the reigns and not jump into the operating room too quickly. After many tests (some of which have made our sweet baby temporarily radioactive), many trips throughout the hospital, and several days of waiting in suspense, the Oncologists believe that the neuroblastoma is contained to the abdomen area and it has not spread or metastasized to other parts of the body. Some forms of neuroblastoma go away on their own, while others may require multiple treatments. Oncology has requested a repeat CT scan in two weeks and they are not requiring any immediate biopsies or intervention! We are anxiously awaiting a meeting with the Oncology team which is likely to happen early next week. For now we figure that having to wait to meet with them is a very good thing. You do not want oncology rushing to your room to see your son! We asked one of the doctors in here if she has ever seen a cardiac patient with neuroblastoma and she said that this is her first case of it! Our Lion Heart continues to show us what a miracle he is. He is the “king of this jungle” and will overcome this one as well.
Please continue to pray for Owen. We still have a long way to go in terms of his recovery and the treatment for the Neuroblastoma can change the course of his journey at CHLA. He is one month old and has spent every day of his life hooked up to machines in the CTICU. He has gone through and overcome more in his first month of life than most of us will ever face in our lifetime. We ask for prayers for his lungs that they may grow stronger and clearer so he can be extubated. We ask for prayers for his digestive system so he can get some fat on him and not undergo additional tests or treatments. We ask for prayers for the Neuroblastoma, that it is the regressive type and that it will go away on its own. Finally, we ask for prayers of strength and peace for Jeff and I. We have been faced with so many questions and been asked to make so many decisions on behalf of our son. We pray that we remain objective and continue to advocate the best that we can for Owen. We know that God will hear us. His promises say, “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.” Matthew 7:7-8.
Wishing you all a beautiful weekend and a very Happy Father’s Day!