I want to keep updating this because, well honestly, it’s just good for me. I find a release of tension, a peaceful clarity, and new confidence as I write my thoughts out. In a way, it helps me move forward. While I put language to where I’ve been, it helps me to see where I’m going. Okay, you get the picture.

Asa has been home for almost a month now. I’ve been having a hard time figuring out what to say regarding his time home so far because it still feels so new to us. We’ve found routine in his scheduled feedings via his g-tube, his medicine doses, his respiratory treatments, his appointments, etc. Upon the homecoming of our baby boy, I became a nurse and our house became a small hospital. Asa and all his equipment has found a place in our bedroom and scattered around the house are his supplies. Actually, it is all quite organized. I cope with stress by being organized and being as prepared as possible. But it’s tough to prepare for something so unknown.

Pictures: SOME of his equipment and organized systems I’ve created to keep my sanity. Everything is labeled, I have a few binders, and I have multiple calendars that are all color coordinated. Brings me so much peace haha. The set-up next to the crib is not as pretty/neat as I’d like it but with all the cords there is no way around it.

The night before he was discharged, after our toddler Koa had gone to sleep, I stood in our bedroom wondering where everything would go and how it would all fit. We hadn’t received even half of his supplies yet (and I thought we had a lot already) so I couldn’t officially find homes for everything. I laid the supplies I had so far on my bed and stared at it all for about an hour. I finally broke down in tears; not of joy that Asa was coming home, but because I was completely overwhelmed. As excited as we were that our NICU days were over and for Asa to be home with us, even more so I was exhausted and nervous for what life at home would look like. In a way, I wanted Asa ‘fixed’ before he came home. I feel bad for even writing that. I was just completely overwhelmed that it was entirely up to us to keep him alive. So what did I do? I drove to Wal-Mart at 10:30pm to get different sized storage containers, labels, and the like. Then I drove to the NICU at midnight to see if Asa’s nurse had time to sit with me to create a log of all the equipment we were getting and brainstorm with me how to organize it all. I had scoured the internet for any insight into what all of this home equipment would look like and I seriously could not find anything pertaining to his specific equipment. The weeks leading up to his discharge I was looking for pictures, tips on organizing, different people’s set up, what traveling in the car looked like, etc and found nothing. I even found a mom of a special needs child on Instagram and asked to see what her baby’s oxygen and feeding tube equipment looked like. She was so kind and has become a new friend. She even made a live video showing it all, saying the rest of her 6,000 followers might be interested in seeing it all as well. I was so grateful!

Throughout our NICU stay we formed relationships with Asa’s reoccurring nurses and doctors. There was one nurse inparticular who was my favorite. Her name was Nicole AKA Coco and I loved the way she interacted with Asa. She had more nicknames for him than we did haha. My favorite nickname of hers was chicken nugget. She’d say, “You’re the most chicken nugget out of all the chicken nuggets”. One of her colleagues and I were talking about this nickname one day and he said, “She is so weird for calling him that, I think she is just hungry”. Coco was a reoccurring nurse for quite some time and then we stopped seeing her because she wasn’t being assigned to Asa. However, as a gift from God, she happened to be our discharge nurse. She was the one who walked all of us out the front door of the hospital and into our car!

The day before discharge was another sweet gift from God. We had never met this nurse before. As we started talking, she told us that she, too, had a special needs child at home. There were some similarities to our children and it was so comforting connecting with another mom in person. She was able to prepare us a bit on going home and about having a special needs kiddo from a mother’s perspective, rather than a physicians perspective. We exchanged numbers and we are going to have a playdate soon with our toddler and hers!

The first night home with Asa was so special. He was finally where he belonged, at home with his family. No more late night trips to the hospital to see my baby, he was right there in our bedroom! It was also nerve-wrecking. His sleep apnea alarm went off in the middle of the night. It’s so loud that I thought it was the fire alarm. We also had a little earthquake a bit ago. I shot up out of bed and ran different scenarios through my head on how to get both kids to safety by myself, as Ryan was at work. I panicked, wondering how I would move all of Asa’s equipment in an emergency situation like that. It still freaks me out.

Over the next couple weeks we grew comfortable with all his equipment and already it has become second nature. The first few solo visits to doctor appointments were rough while managing all the cords and alarms (I only cried 3 times during the first one haha) and now we are getting confident enough to take him on family walks.

We’ve also had some incredibly sweet and unexpected gifts. One morning I woke up to a text from a neighbor telling me that she had seen a street-sweeping ticket on our car from earlier that morning, and that she had taken care of it. She paid our $50 ticket for us, knowing that we had our hands full at home. & our home church has gifted us two different times of house-cleaning services, the best gift a mom could ask for! Another was a redemptive gift from God. While Asa was in the NICU, some of my stored breastmilk had become contaminated. They ended up throwing away 80oz of hard-earned liquid gold. Since being home, my supply has dropped due to a number of reasons. I couldn’t produce enough to keep up with his requirement so I started using formula to supplement. He got constipated and uncomfortable with this change and I desperately wanted to be able to give him the nutrients from breastmilk. I reached out to a friend, asking if she knew of any milk donor places that didn’t pasteurize the milk and she said she’d look into it and get back to me. A few days later she tells me that she actually found someone she knew who had some extra at home. That woman who I had never met before wanted to give it to me. I was overwhelmed with gratitude that she wanted to give me some of her supply. Turns out, her baby was born the day before Asa which means her body was making the type of milk that Asa needed for his age. AND, how much of her supply was she able to give to me? Exactly 80oz. God gave it back to me, or Asa rather. When I picked it up from her house, I got back in my car and wept the entire way home. I couldn’t believe the specific ways God had used people to bless us. I also cried, surprised by how hard it was to see a normal baby. She happened to have two sons, the same ages as mine. When I walked in her living room her toddler was playing and her baby was laying in a bouncer, no monitors attached to him. I envied her quiet night and the simplicity of normalcy, what we should have had.

Also, she says this whole experience has been redemptive for her as well. She was not able to breastfeed her baby and was forced to pump and bottle feed him. She has said that being able to help feed Asa has brought a positive purpose to her unwanted situation. The following week after giving me 80oz, she told me she had miraculously come up with another extra 80oz she could give me. So what was taken from me was given back two fold. Thank you to this sweet, new friend.

Another gift is that Asa qualifies for in-home nursing care. This is a government funded program that helps families who have children with special needs! His nurse started last week and she has been so helpful! She goes everywhere Asa goes. During her shift she comes to his appointments with me, helps takes care of him at home so I can focus on Koa, and even sits in the backseat of the car with him to make sure he’s okay. She’s definitely an interesting person (the kindest way I could put it), but regardless the service is incredibly helpful.

Since the beginning of this journey I have experienced a lot of isolation. It’s a weird mixture of it being intentional but also lonely. Intentional because I can’t just bring Asa anywhere I go, so I’m home most of the time. I don’t want to risk him getting sick and his equipment is so cumbersome it’s just easier to stay home. Also intentional because I feel socially awkward. My head feels foggy due to little sleep and over crowded with medical jargon, questions, observations, appointments, etc that I rarely have space left for normal conversation with anyone other than Ryan and my closest friends. This isolation is also lonely. Not in a feel-bad-for-me kind of way, but just as a natural byproduct of isolation. However, put me in a room where I’m talking about Asa’s condition and future with a doctor, surgeon, specialist, or nurse, and my head fog turns clear as day. Weirdly, in that type of setting is when I feel the most clarity and normal. Lucky for me, we have about 2-3 appointments a week so those are basically my social outings haha.

For some reason, when I think of these last few months, I always imagine a picture of a small boat with a surprisingly over-sized, deep keel. A keel is what sticks down into the water from under the boat. It prevents the boat from being blown sideways in the wind and it helps keep the boat sitting upright. The boat represents the way I feel in all of this, incredibly small. The keel is what lies beneath the surface. Even though I may feel small, I am more than stable. I do not blow with the wind and I will not tip over. My keel is Jesus. Not only is it Jesus himself but it’s the depth of my history with Him. He’s never proven to not be good in His nature to me. He has never left me, never let me down, and he has carried me through more dark tunnels that I would like to admit. And I always see the other side. He is faithful, loving, and kind and I’ve never known him not to be. There’s a quote that sums this up perfectly, “Deep roots are not reached by the frost”.

So there it is, Asa has been home for a few days shy of a month and this is what it’s been like. He’s currently 2 1/2 months old but we feel like we started over at the newborn stage with him when he came home. He’s gaining weight perfectly, he grows cuter and cuter each day, and he’s been a champion with transtioning home.

Koa has also been amazing at stepping into the role of big brother. He shares all his most prized possessions with Asa by putting them in his hand and patiently waits for Asa to grab it (which he doesn’t lol) and Koa squeals with excitement when he sees him.

Ryan has also been amazing. He is so present at home with all of us. He’s still making us laugh all day long, even being cooped up inside for so long. He cooks most of our meals, takes Koa out of the house and does something fun with him every day, and is still courageously being honest with me about his own personal experience through all of this. In a weird and beautiful way, Asa is exactly what our family needed. Ryan and I are more connected than we have been in a long time. Not just a ‘oh we’re having fun together and everything is fine’ kind of connection, but a true, raw, sharing-the-depths-of-your-heart-and-process kind of connection. Days before Asa’s birth, Ryan and I laid awake in bed. I broke the silence by bluntly saying that I felt disconnected from him. I partially blamed this on the crazy pregnancy hormones and how insanely exhausted I felt, but we knew we had felt that way for a while. Life moves on day after day and we get stuck in routine. It was the most real conversation we had had for a while. It didn’t solve anything, it just brought it to the surface. Since the days following Asa’s birth, all of this has drastically flipped. I’m a bit surprised by that outcome though because it seems like in most cases, the stress we’ve gone through would continue to disconnect two already ‘disconnected’ people. We had nurses tell us that they loved watching us in Asa’s NICU room because we were on the same team and so supportive of one another, which is not what they normally see. I get how that happens though. Stress, anxiety, fear.. they all have a way of isolating us. Our 3rd marriage anniversary is this week and we have so much love to celebrate.

I’ll end it there. I need to update this more often so I’m not cramming so much into one entry, but I know I’ll read this years from now, thankful that I took the time to write it all out. There are some big things up ahead, but with confidence I say that it’s all going to be okay. Our family will hold tight, weathering this storm together.