As I sit here at the computer I feel like I'm supposed to share our story but I feel overwhelmed at what to share and where to start. Where do you even start this kind of story?
On Easter Sunday I held a baby boy who was getting over a virus and was a little tired and not very hungry. I held a baby who had recently been diagnosed with three chromosome abnormalities...one of which explained his hearing loss and delays. (1p36 deletion syndrome)
On Monday I sat in Dustin's pediatrician office and talked about my concerns with his eating and asked if she ever had any concerns about his heart because heart problems are part of the syndrome that he was diagnosed with. She ordered an X-ray at Cooks hospital and so we went there as quickly as we could.
On Tuesday our pediatrician called to tell me that the x-ray showed that Dustin's heart was large and that we were scheduled to see a Cardiologist at 2:00 that afternoon. We were just supposed to get an Echo but after the Echo we went to do an EKG and after that we sat in the Dr.s office. When the cardiologist explained what the words dilated cardiomyopathy could mean we were blindsided,devastated, and speechless.
On Wednesday morning our girls played with the brother that they have come to adore and then we sat them on the couch for a picture. In my head it was the last picture of the three of them. It was the last picture of Dustin at home. It took everything inside of me to hold it together. At 8:00 in the morning we checked into Cook Childrens Cardiac ICU and watched as our boy was hooked up to machines, sedated for a PIC line (line that went from his leg to his heart), and filled with strong medicines.
For the next 10 days we rode on a roller coaster of highs and lows. We had Dr.s who were encouraging and Dr.s who sucked the joy and hope right out of the room. We had countless friends walk into our room unannounced to encourage us and pray over our son. We had nurses pray over our son. We had worship music blaring. We had text messages reminding us of what Gods word says and what God's character is. We had grandparents running the home. We had family come in to help unannounced. We cried out to God constantly. We had moments of great strength and moments that we just clung to each other and sobbed.
On Saturday we were given the all clear to come home. That doesn't mean that this fight is over though. After 10 days of intense medicines flooding Dustin's system we had hoped to have an echo that showed a heart whose function has greatly increased. What we find instead is a heart that maybe has a tiny bit better function. We are praying that God will use the 6 oral medicines that he is on twice a day to begin to miraculously improve the squeeze and relax of his heart muscle and decrease it's size. We are so thankful for the improvements that we see externally. Dustin was eating better when we left the hospital. He went in with a bmp of 700 and left with one of 90 (100 or less is normal). The entire visit Dustin's heart rate, oxygen levels, and blood pressure remained stable. He has sinus rhythm which means that his heart beat is normal. He has begun to make a ton of noises in the last few days....he now knows how to complain with baby talk. He actively played with his first toy in the hospital.....like he grabbed it and meant to shake it back and forth and then put it in his mouth. He has been laughing and smiling more than ever before. When we took him out of his car seat when we got home he just laughed and laughed. He was so happy to be home!
Right now the heart inside Dustin is the best heart for him. On April 20th we will go see his cardiologist to see how Dustin is doing and we will begin talking about getting testing done in either Dallas or Houston to see if Dustin is a candidate for a transplant in the future if his heart becomes too weak to do it's job. We are praying that his genetic syndrome will not keep his name off of the list but we are also praying that he will never need a transplant. Because quite honestly the idea of someones worst day in their life just possibly giving us the best day of ours is just too weighty to think about. We are praying for a miracle. We are praying for healing of our boys heart. It's not too late for God to step in and do his thing!
Today has been our first entire day home. It has been a roller coaster. Dustin's eating has not been as good as it was in the hospital. He seems like he is constipated which could be from adding formula to his milk, could be from being a baby, or it could be from his heart beginning to fail again.....no matter how many times I say over and over in my head Mark 5 vs 36, "Don't be afraid; just believe" or a million other verses that are running through my head I am just terrified. I just want to take the last two weeks of the Weber book and rip them out. I don't want this to be part of our story. I do not feel like I am strong enough for all of this. I just want to Dustin to have 1P36 deletion syndrome without the heart problem part. I just want to go to hearing aid appointments and therapy sessions.
Please pray for a miracle
Please pray for peace
Please pray for no more eating problems
Please pray for strength
Please pray for sleep
Please pray that we can trust God
Please just continue to keep us in your prayers
And thank you to each of you for wrapping your arms around us and loving us so well. Every text, every hug, every prayer, every tear, every word of encouragement, every worship song sent, ever gift, every bible verse sent....they have mattered. They have helped keep us going when we felt that we couldn't take another step!