This email is being written about 5 days (make that a week) later than I had originally planned. Our friends and family have been an unbelievable support to us, and we really hoped to keep you all updated as much as possible. As we all know going into this, things never go quite as we plan, and we have continued to learn this each step of the way. I feel like we were able to communicate with some people, and then the rest of you spread the word to one another. The reason we know you know is the way you have all reached out to us in emails, texts, calls, food, and just lots and lots of love. Thanks for all the ways you have expressed your love to our little family. To each of you, thank you... for each call, text and email that may not have been answered. They have been read, and have made us feel loved and supported at every turn.
So, for our story.... Last Monday, we arrived at 7 am for our 9 am c-section. Due to a couple emergency cases, ours was bumped and I didn't go back to the OR until after 11. I was actually far more anxious than I thought I would be, and the actual surgery was pretty stressful for me. Everyone taking care of me was so amazing, and they all did everything they could to put me at ease. All I can say, is when a certain moment is discussed, and planned, and dreaded, and anticipated, for 6 months.... it is VERY intense when that moment is actually happening. Blake Danger made his entrance at 1205 pm on January 12. He came out a little roly-poly, just like his sister, weighing a little less, at 7 lbs and 12.5 oz. And also just like his sister, had strawberry blonde hair- only he had a FULL head of it!! We were able to see him right after he came out due to a window in the drape, but the NICU immediately whisked him away to take care of him. He was not crying when he came out, and we were very aware right away that the situation was pretty serious. They took Blake to the NICU almost immediately, and we were able to see he had a breathing tube in. He was awake then, and we could see him looking around, which was sweet. Rob went to be with Blake while they finished up my procedure, and my nurse/dear friend, Anna, and midwife Annie sat with me the entire time. I can't imagine them not being with me- they were talking to me and comforting me, helping me to stay calm and centered. They then took me back to my room to recover for a little bit, and Rob joined me back there. The NICU was getting Blake all set up, and Rob was able to come and show me pictures of Blake. The NICU doctors came to talk to us as soon as they were able, and told us almost immediately that Blakewas very sick. They confirmed with an X-Ray that his lungs were very tiny, and he was immediately needing complete respiratory support. By this time, I really wanted to go see Blake, but we had to wait until I started getting feeling back in my legs. Those minutes crept by for us... Rob was wanting to be with both me and Blake, and I know it was so hard for him to care for us both. (And he was and continues to be absolutely amazing, for all of our little family). By the time I was able to get up to go see Blake, I started to feel pretty nauseated. I got to go to the NICU and see Blake, hold his little hand, and talk to him for a minute. However, I was feeling very sick, and they had to take me back to my room. The rest of the evening was a blur... I was sick, and completely exhausted, and we had what feels like 20 different people needing to talk to us. We were able to talk with the neonatal nurse practitioner, and she talked with us pretty extensively and honestly about Blake's status. She was not able to tell us exactly how much time we had with him, but she did tell us that it was not a long time. His little lungs were getting as much help as possible and he was still not able to give his body the oxygen that it needed. She mentioned that they had drawn some blood, and were going to be running more tests throughout the night. They had taken some pretty extensive x-rays of his entire body, and were also waiting to get these read. Pretty shortly after this, a geneticist came in to talk to us. He felt that they were able to tell from the blood drawn and the x-rays that Blake had a condition called Hypophosphatasia. This is a very rare genetic disorder, affecting about 1 in 100,000 newborns, and it affects the way bones are formed. As we had already learned, it is very severe when present in a newborn, and not something that he could live with. Blake was making very clear to us, in every way, what he was capable of. We could see with our own eyes that he was working SO hard to breathe, and we knew that he would not be with us for long. This is obviously devastating... I'm not sure how I am even able to type this. It was a situation that we had been able to prepare ourselves for in some ways, but still did not make it any easier to hear, and see with our own eyes. By now it was 8 o'clock at night, and we are somehow supposed to get some rest. We were able to go back and spend some more time with our little man, before we went back to our room to try to rest. We slept for a couple of hours, but spent the night tossing and turning. The NICU nurse practitioner kept us updated on his condition throughout the night, and by about 4 am it was becoming more apparent thatBlake did not have much longer to live. We called both of our parents, so that they could come and see him, and made a plan to get Jane there as well. After much heartache and deliberation, we knew that we wanted her to meet her baby brother, who will always be a huge part of our hearts and our family's story. Jane was able to come, and we were able to take her to see Blake. She was pretty quiet about it, taking it all in, but we were so glad that they were able to meet each other. She left at about 8 or 830, and very shortly after, the NICU came to get us to tell us that Blake's little body was getting too tired. We went to the NICU to get him, and brought him back to our room. They took his breathing tube out, and left us to just be together. It was a precious time together, and is something I will cherish for the rest of my life. He passed away at about 925 on January 13th. We spent the rest of that day being together, making necessary plans, and just trying to get some rest.
We finally came home on Wednesday. As anticipated, it was really hard to walk out of that hospital just the two of us. However, it was pure joy to come home to our bright, beautiful, joy-filled, curly-haired Jane. I have often wondered in the past 6 months if I would rather not know what was going on with Blake... If I would trade the 6 months of what-ifs and tears and ups and downs, for blissful ignorance. However, right now, I'm thankful for the knowing. Even if it was so hard for all those months to live in the unknown and always wonder what my future held, I was able to really enter in to what possibly lay ahead of me. I had thought about leaving the hospital, about seeing his room, about how we would talk about this with Jane. And as painful as each of those things have been, I have been so thankful that I was able to prepare my heart just a little bit for them.
So many of you have asked about Jane... and have prayed specifically for her in all of this. Thank you. She has been amazing. She did great when she came to meet him- especially considering we drug her out of bed early to get her there. She was obviously very overwhelmed at all of the NICU equipment, and wasn't sure what to think, but she was sweet with him. She has since asked about him, and we have been able to have some really sweet conversations with her. The child life therapists at the hospital were really great in helping us know the best way to talk to a toddler about this. She seems to understand that Baby Blakeis not going to come home, but also knows that he is really happy where he is, and he isn't missing us the way that we miss him. We are early on in this journey, so continue to pray for us as we figure this part out. Blake is obviously a huge part of our story, and we want to honor him and remember him in our home... and want to know how to do this well. She is going to be going back to school 2 days a week this week, which I think will be great for her to get back in her little routine.
As to how we are doing... We are sad. We are hopeful. We are broken hearted... at times we are angry. We will always miss our Baby Blake, and he will always be a part of our family and our story. We are forever changed because of him. And our journey is kind of just beginning... We are continuing to take things just one little moment at a time, finding joy and hope in those moments without trying to look too far down the road. I am feeling pretty good- really thankful for some sunshine. Being outside and playing with Jane are medicine for my soul. Each day I feel better, and am needing less pain medicine, so that's always good :). Rob and I are continuing to learn about letting each other process and grieve in our own ways... but still feel like we are able to love one another, and just feel a huge togetherness in all this. I can't imagine walking through this without him, and am more thankful than ever to have him as my partner in all this.
And as always, we are blown away by our friends and our families. For the ways you have loved us and walked with us in all of this. For how you have known when to step back and give us time together, and when we needed you to show up with some food and make us laugh and feel normal. It honestly makes me tear up every time when I think about how well we are loved. I just don't have words for it... So don't go anywhere, okay? :) We need you guys. It's pretty amazing to know and feel the love of God for us through the people in our lives.
I have a print on my wall that I bought recently... and I'm clinging to it (among a lot of other truths) because I know it to be true. "The deeper that sorrow carves into your being, the more joy you can contain".
Love to you all.
Rob, Lara and Jane