Everyone keeps telling me to write down every part of Leo's experience so far. They say writing is therapeutic and a great way to keep a record to look back and remember the details that fade with time. I think my biggest hesitation is that I don't really want most of these memories. I'd like to forget most of the things I've seen and heard and felt throughout all of this. Putting this all into words adds another element of reality to it all. This has been the hardest, most overwhelming experience we've ever had. And that's just as his parents. Leo is doing the hardest part. Despite my aversion to writing this all down, I decided I wanted to update those of you who have been praying for Leo so faithfully after all these months. I hope to one day personally hug and thank each person who has ever uttered a prayer on his behalf. He is worth it, trust me. He is worth your prayers. He is incredible, and the world deserves to know him.
Let's start from the beginning. The last post regarding Leo was simply his diagnosis. Leo has gastroschisis. We have known that since my 19th week of pregnancy. What we didn't know or expect was that I would have to deliver via emergency C-section 2 months early. I went into the hospital with some unexpected health problems. They admitted me and determined I had developed severe preeclampsia and needed to deliver. Leo's heart rate was dropping and my health was going south. They prepped me for surgery and had a team ready for Leo. Jeff held my hand during the entire operation, and when Leo came out he was much smaller than they expected. 2 lbs 10 ounces of tiny fighter. Unfortunately, my symptoms did not subside but actually worsened. As they were transferring Leo to the Children's NICU, I was being treated for HELLP syndrome. I was in one hospital, and Leo was being treated in the other.
Because of his size and the large amount of organs that were still outside his body, they were unable to perform the operation to put the organs inside his abdominal cavity.
For the first month of Leo's life, he was in an incubator with a clear temporary silo holding his organs suspended above his abdomen. It took two different surgeries on that first day to get this silo on. In most gastroschisis cases, after a relatively short amount of time, the organs descend into the body and there is a final surgery to close the skin overtop. However, Leo was still too small for any of his organs to fit inside. His temporary silo was not made to hold up for that long and started to break. They took him into surgery immediately to put on a semi-permanent silo. That was his 3rd surgery. This semi-permanent silo held his organs in place but was stitched to the muscles under his skin and would act as an extension of his own body. His body has been growing granulation tissue and new skin overtop of his organs and taken the place of the silo.
Throughout this entire process, Leo has also had very difficult lung issues. Being premature and having been on a ventilator for quite a while, Leo's lungs suffered additional damage. He is currently receiving a significant amount of respiratory support through a nasal cannula. However, his team of doctors decided today that he would benefit from having a tracheotomy. Leo will have his 4th surgery to put the tracheostomy in place within the next week or so. No date has been selected yet.
Leo has fought so hard and defied a lot of odds. He has such a strong personality already. He is quite the flirt with those pretty nurses and even yells and growls at the doctors. He loves books. He could listen to us read to him all day. He even has the nurses reading to him. He also gets to sit up and play in his boppy and loves reaching for things. His favorite game is reaching for my face when I lay my head next to his. He has this sense of wonder in his eyes and such a playful smile.
I can't thank you enough for the prayers you all have said for my family. Leo is a miracle and he has come so far, but he still has a long way to go. Please keep praying for him. Thanks for all the love and support.