I am starting this page in hopes that we can ease some more of the burden that Sara and Kevin have been feeling in the past week or two. Graysons story so far from his moms words: On December 3, 2023- I went into preterm labor at only 23 weeks 1 day gestation. I had previously had a medical procedure that we were told had 0 risks and unfortunately the risk we didn't know about was that Grayson was about to make his appearance a lot sooner than expected. By the time we had got to the hospital, I was 9cm dilated and we had many, many obgyns come into the room and tell us to terminate the pregnancy or to have a vaginal birth and Grayson would be born sleeping. Grayson was still breech and was kicking his way out. I kicked all the doctors out that day and the only person we will never forget, the director of the NICU at Pennsylvania Hospital told us the best chance that Grayson had at survival was to have a CSection. We told them to wheel me down to the OR and get Grayson out. His heart was beating strong and we knew that he was measuring 2 weeks ahead. We knew he could do it. Grayson was born at 12:06 and weighed 1lb10oz, 12.5 inches long and was perfect. I wasn't able to see him for 12 long, painful hours. We did IVF for two years and I endured many, many different surgeries and procedures, hundreds of needles and pills. Our first egg retreival resulted in many many embryos and we ended up with 21 viable, healthy embryos. PRAISE GOD.🙏 Because of my PCOS, I ended up with pretty bad OHSS and the recovery took over a month. We were finally ready to have our first embryo transfer and on July 13, 2023- we transferred the most textbook, perfect looking embryo, graded a 6AA which we were told they rarely see and that was our Grayson boy. I was the closest to pregnancy I had ever been in my life. On July 17, 2023- I saw a cardinal and knew it was a good sign. My mom passed away when I was only 5 years old and she makes her presence known through cardinals. On July 15,2023- my father who passed away came to me in my dreams and told me I had a present on the way as he sat in a chair and there were tons of beautiful flowers and bright colors all around him. Wherever he was looked so prettty. On July 18, 2023- I took a pregnancy test, the calmest I have ever felt taking one and it was positive! Our first embryo transfer worked! I prayed so hard and manifested for this moment for years. I was so happy for our Miracle. Everything was perfect with our pregnancy, our scans were good, our 20 week appointment brought up 0 concerns and we were having a perfect pregnancy, so we thought. I was very very sick after the procedure I had done and I was advocating for myself and was told it was just my low iron. My heart was beating 150 beats per minute and even higher at times consistently and It was so severe I couldn't sleep. It wouldn't slow down. Because I wasn't being heard, I had a new obgyn appointment coming up but had to wait because I was pregnant and a new patient. We never made it to that appointment though unfortunately and Grayson was born. I was nearly septic by the time we got to the hospital. On December 15th, the doctors sat down and told me to unplug Grayson's ventilator so I could hold him for the first and last time because they didn't think he'd make it through the night because of how sick he was. We called our Army in, all our immediate family showed up, we prayed and cried. I told Grayson to let me know if it was too much for him and he said, watch my strength. We spent that whole weekend with him and he fought and pushed through. Thank you God. On January 25, 2024 we were transported to CHOP, which we were told he wouldn't survive the transport- but he did. He was very sick and was not tolerating any food. On January 29,2024- Dr. Laje performed an Exploratory Laprascropy on Grayson where they found a contained preforation and his intestines were matted to his liver. He unattached his intestines from his liver and fixed the preforation temporarily with an ileostomy bag. Grayson remained critically ill for 72 hours. The first 24 hours after, they had to call a code blue on him. We called the Chaplin to his bedside and prayed over him. Grayson made it through those 72 hours, Thank you God. I waited 26 days to hold my baby in my arms. It was the worst pain I could have felt not being able to hold him. Grayson swelled up weeks after he was born and has never recovered from that. Kevin and I searched for answers and we were not finding them. Now, we finally have answers after months of none. We did genetic testing and Graysons came back negative and they told us there were no more genetic tests they can run on him and had offered him all of them. Grayson had been gaining 200g every night for weeks leading up to the doctors wanting to do a MR lymphangiogram. On Monday May 5, 2024 Grayson went in for this MRI as we had finally got his oxygen back down from his high requirement and got him in. There they found that Grayson's lymphatic system was not working properly because of the high pressure from the ventilator. He has Severe BPD, chronic lung disease from being born early. The pressure from the ventilator caused the half top of his lymphatic system to be "stuck" which is why his head has been so swollen. The bottom half of his lymphatic system is moving backwards, so instead of going up where it should be, the flow is going down. Grayson again was very very sick. Our only option at saving his life was proceeding with a LEET, Lymphatic Exchange Transfusion Therapy intervention. Dr. Dori, here at CHOP came up with this intervention in 2018. They insert a artifical drain to Graysons thoratic duct to try and regulate the flow and then they replace it with fluids such as blood product or anything he is needing. Only a small amount of babies have had this and it brings mixed results. CHOP is the only hospital that does lymphatics and it is still very very unknown and they are still trying to learn more about the system. We gave them consent and off to the OR he went on May 9th. They did a cardiac catherization to measure the pressure in his lungs and heart and everything came back good. They were able to put the drain in with no complications. This was working really well for Grayson (he had his eyes open and his swelling had gone down tremendously) until his swelling came back and the had to take him back to the OR where they found out the drain was no longer working. They took Grayson back to the OR for another MR lymphangiogram in hopes of reconnecting the drain which was unsuccessful on May 28th. Currently we are waiting for the lymphatic and NICU team to meet and decide if Grayson would be a candidate for a very risky procedure in hopes they would be able to get his swelling under control and be able to continuously drain his lymphatic system. This has only been done on a handful of babies and the future is really unknown.