“What doesn’t break you only makes you stronger…” This was the Bible verse Shannon and I saw on a church sign on the way home from having a bad day at the hospital. We thought this was very fitting for our journey thus far. It has been a journey that feels much like a rollercoaster with all the ups, downs, turns and even some upside downs. Going through this experience has been much easier for Shannon and I having the love and support of our family, friends and fire department family. We have had little time to share with everyone the details of Gabriel’s journey to this point and feel you all deserve to hear where we have been and where we are going on Gabriel’s journey.
As many of you know Gabe and Shannon had a rough start. Early on in the pregnancy doctors had thought that Gabe had Downe Syndrome. After an amnio we learned that all of his chromosomes were normal and he did not have Downe Syndrome. What the doctors were seeing was the beginning stages of Hydrops. This condition, in short, is an accumulation of fluid in two places on the body. Gabe initially had fluid accumulating in the skin on the outside of his body, around his head, neck and chest, and Shannon had large amounts of amniotic fluid (produced by Gabe). At the same ultra sound we also learned that Gabe had a mass growing on his liver. Over months of countless ultrasounds, fetal non-stress tests and appointments with specialists we watched Gabe, and Shannon's fluid levels very closely. Gabe was growing like a normal baby but Shannon was growing like she had triplets. At one point the fluid in Shannon’s belly became so great that it required what is called an amnio-reduction to remove the fluid that was causing Shannon so much pain. As Gabe grew so did the size of the tumor and so did the accumulation of fluid in Gabe’s skin. Our wonderful doctor, Marcy Rode kept a close eye on Gabe and his progress. Her, and all our other specialists, plan was to keep Gabe inside as long as we could to provide him with the best chance outside of Shannon but not leave him in too long and let the hydrops become worse. On June 30st, at almost 32 weeks, an ultra sound showed that fluid was now accumulating around the right side of Gabe’s lung. With this new finding we were told that it was time to be admitted to Lucile Packard for the remainder of the pregnancy. We were admitted on Wednesday, July 1. After several hours of close monitoring we learned that Shannon was 1-1/2 centimeters dilated and that the fluid around Gabe’s lung was getting worse. The doctors decided Gabe had been pushed far enough and it was time to deliver.
On July 1, 2009, Gabe was delivered via C-section to a staff of approximately thirty doctors and specialists that were going to give him the best chance at survival. Gabe’s delivery was very scary and doctors later told us that they didn’t think Gabe would even make it out of the delivery room. Gabe initially was in respiratory failure and required a tube in his throat to help him breath. Doctors also had to perform CPR, give cardiac medications and put a tube in his chest to get fluid out of his lungs. Shannon and I never even got to see Gabe and wondered if we ever would. But Gabe is a fighter, never giving up, surprising doctors and showing them all what he was made of; determination. Shortly thereafter we were told that Gabe was putting up a fight and that he was on a ventilator and wasn’t giving up.
We cannot even begin to recount every minute of every day that we have had with Gabe so far. However, I can say that every day is a blessing with Gabe and I have already learned so much from this little man. He truly is a miracle. We have watched and prayed as Gabe has endured four chest tubes, multiple breathing tube changes, countless IV’s, PICC lines, Arterial lines, catheters, two special ventilators, special breathing gas and too many medications to list. He has also had some degree of a collapsed lung or lungs for the past week. Gabe initially resembled a little Michelin man with all the fluid on his body but he has fought to lose the fluid and keep it off. Shannon and I found ourselves praying for things we never imagined we would be praying for; like pee for example when Gabe’s kidneys shut down for about a week. We have come close to losing Gabe several times now, but he always comes back fighting. He is also quite the little mystery here at Stanford. They have never seen a mass like his and are curious as to exactly what it is. When Stanford tried to type his blood they were unable to and our doctor said that he has never even heard of any known cases like this. So to this day his blood type is unknown and cannot be identified. Throughout the craziness that surrounds Gabe everyday comes calm from the wonderful nurses and doctors that care for Gabe.
He has a small army of nurses and doctors in his corner that watch over him non-stop around the clock. These nurses and doctors have formed a special bond with this little man that is hard to describe. Nurses at Lucile Packard Children’s Hospital have specifically signed up to only care for little Gabe. Doctors take special interest in Gabe’s fight, coming to his bedside often to check on his progress. We are very thankful for all of the wonderful care Gabe is receiving at Lucile Packard and couldn’t ask for more.
Up until this point we have been in a life saving mode and have made great strides forward towards getting Gabe to be stable. Yesterday we sat down with Gabe’s doctor, Doctor Bhutoni and discussed a plan for Gabe. The plan was that since Gabe had reached a point where we were no longer in a life saving mode, we should begin to try and figure out what is causing Gabe’s dangerous Hydrops. However, last night Gabe experienced a set-back. Gabe now has an infection from an unknown source. Doctors feel that it is most likely from one of the many tubes that have been placed in him to keep him alive. Gabe had been on a conventional ventilator but unfortunately Gabe had to be put back on the special ventilator called an Oscillator since he was becoming unstable again. This was heartbreaking for Shannon and I since he had been doing so well and were looking forward to trying to find the cause of his illness.
Gabe is now slowly improving and we hope that in the near future he will be well enough to begin the search for the cause of the hydrops so that it may be corrected. The doctors have said that when Gabe is healthy enough to leave the NICU, we will begin another journey to remove the two tumors that are on Gabe’s liver. It will be a long road with many hurdles, hoorahs and setbacks, but we are confident that Gabe will be causing trouble with his big sister in no time. From this point forward we will be trying to put in daily updates as to Gabe’s progress. Please continue pray for Gabe because it really does make a difference.
I would like to say thank you to our wonderful families for their love and support through these difficult times. Our families have been doing a wonderful job watching our little girl Kayla while we are here with Gabe. They have been there for us and whatever we need. Our friends have been absolutely amazing taking care of us during our stay at the Ronald McDonald House and the hospital, making sure that we have everything we need and more. You have let us know that we are definitely not alone on Gabe’s journey.
A HUGE thanks to the Palo Alto Fire Fighters for giving us what I need more than anything else, TIME. Thank you to all of the wonderful firefighters who have been working my shifts and allowing me to be here with my son and wife through a very difficult time. You have all gone beyond the call of duty to take care of me and my family and we are forever grateful. Thank you for your donations to help us with food and lodging while we are away from home. And thank you for taking care of my home, literally, while we are away. We cannot even begin to tell you all how very thankful we are for everything you have done and are still doing.
We look forward to you all getting to meet Gabe and see his progress first hand. We will continue to update his progress as much as we can and look forward to reading your comments in our blog. Thank you all so much all of your prayers, love and support of our family.