“For You shaped me, inside and out. You knitted me together in my mother’s womb long before I took my first breath.”
After our first miscarriage, I was laying in bed attempting to find sleep and struggling with our loss when a voice in my head said as clear as day “He is coming.” At first it was as though someone was leaning over me and whispered it directly in my ear. Initially I thought Adam had come into the room, but a quick glance showed he was in another room. I have always wanted to believe the Holy Spirit was true. This piece of theology was taught from a young age that as Christians we believe not only in the Father and the Son, but also the Holy Spirit. In my lowest of lows a message of hope and truth was delivered. For the next five years I would hold on to this nugget. I knew our son was coming; I trusted. And at times I doubted. But I trusted and I kept holding on to this truth and I needed to be ready for when he did come. I didn’t know how, I didn’t know when, but he was on his way. Never would I have thought our son would also bring his sister. But that’s the magnitude of God’s love. It was because I wanted to be prepared I continued to dream of the moment our son would be home. Preparation of our home was always on my mind, but preparation of our hearts kept both Adam and I living with our eyes open for his arrival.
And then, Jake and Gabby were here coming through the gift of adoption. Arriving three months after we saw their profile and felt a stirring in our heart we became their mommy and daddy. Two different cultures, ethnicities, and worlds began the work of becoming a family. God wasn’t just forming Jake and Gabby; he was forming two families’ hearts.
The following day after Jake and Gabby were born, it became very apparent there was major concern with Jake’s feedings. He had been moved to Olathe’s NICU floor for more observation. At this time, we were at the hospital, but parenteal care was not turned over to us yet. The kids’ birth mom was staying one more night and were sharing care. This meant we took shifts with Gabby in our room and then taking turns being with Jake on the floor down below. Adam and I desperately wanted to be sure our birth mom felt respected.
We were concerned, but at this point were too naive to be really scared.
“For You shaped me, inside and out.”
An NG tube was placed to insure Jake could feed safely. Every time he would be fed with a bottle, he would spit it up with it going through his nose and out of his mouth. Something was definitely wrong, but it wouldn’t become clear until more extensive tests could be run.
We found refuge in the nursing staff as they took care of Jake, but we were becoming frustrated with the molasses speed it seemed was being taken in figuring out Jake’s mystery. Not having ever been sick or actually in need of medical attention other than yearly check ups, we were quick to put our complete trust in the doctors. But it became very evident we needed to be Jake’s health advocates. And the sooner we figured out how to do this, the better off Jake’s care would be.
That last sentence may seem like it has a strong tone to it. But until you have a had a child with medical needs, you won’t understand how limited a doctor’s time is. And unfortunately the squeaky wheel gets the grease.
The twins were born on a Tuesday and by the next Monday morning we still didn’t have answers as to what was going on. It was Monday morning where Jake became upset and pulled out his NG tube causing the end of the tube to come out in his mouth. An uncomfortable sight for anyone, but an alarming sight for us prompting us to push hard for answers. We were tired of hearing our doctor say that Jake “calls the shots. He runs the show.” We were confident we knew what show Jake was running, but we didn’t think he was getting the shots he deserved. Thank God the right team was in place that morning that allowed action to be taken to work on getting us moved to Overland Park regional.
Overland Park’s transport team arrived late morning. We were informed to not follow the ambulance in case they had to turn on the lights.
Turn on the lights?! Why would they need to turn on the lights?! Is our son more fragile than we thought??
The medical team quickly assured us there are times when the lights need to be turned on for a variety of reasons, not necessarily because our son required immediate medical attention. I will be forever indebted to this transport team. They took the time to calm my nerves and answer any question I had. I did my best to not look to hard at all of the control, air valves, and connections the incubator had as they placed our two day old son in it. I trusted them. I had to.
We ended up staying at the hospital for another hour or so to eat lunch and then take Gabby to her first check up. Both Adam and I were stressed, but quickly found some reprieve when our sweet daughter peed all over the doctor’s bed when we undressed her for her weight check. We needed to laugh or we were going to cry.
After we found our way to Overland Park Medical and to our son’s room, we were met by the doctor we had at Olathe explaining we were now in a place that could explore more what Jake needed to help him with his feedings. I found myself sitting there hearing what the doctor was saying, but feeling numb. Why was this happening? His twin sister was born healthy? What does this mean for our little guy?
During our stay we were absolutely loved with meals provided by loved ones. The first evening we were there our friends Brooke and Andrew brought supper to the hospital cafeteria. The fellowship they provided was much needed after a very stressful day and for them to listen to us as we word vomited all over them was the best support they could have given us.
Over the next few weeks we would be gifted meals through a dear church friend (she even brought Joe’s for us!), family in the Kansas City area, and former classmates from high school and college days. They didn’t need to say anything. The fellowship was a gift in and of itself to keep us grounded.
During his stay, Jake was visited by a telegeneticist based in Arkansas. This particular geneticist visited Jake by way of screen time hence “tele”geneticist. He literally rolled into Jake’s room and could zoom the camera into measure the different parts of Jake’s body; the distance between his eyes, length of fingers and toes, etc. It was fascinating to watch him. We would eventually learn that Jake had no known syndromes or disorders that was causing him to not swallow.
Twelve days into his time in the NICU it was determined Jake would have a g-tube placed in his abdomen that would enable him to feed. It would be another week of learning how to use the pump, measure his feedings, and working on increasing his feeds before we were allowed to go home. We would still not receive answers why our son was not swallowing.
We were in the hospital for twelve days. I wanted to bring our newest members of our family home to share their gift with friends and family so badly. I was incredibly frustrated when my plan wasn’t coming to fruition. It wasn’t fair. Sounds really mature, doesn’t it? But it was while grabbing a quick snack from the parent’s room (a sacred place for sure), my reality was put in its place. A dad of a newborn was in the room washing his wife’s breast pump. After a bit of warm chattering he told me they had been there since the beginning of September and would be leaving until their child’s due date. In December.
Our son’s lungs were fully developed. Our son could regulate his own body temperature. Our son’s heart was healthy.
After this interaction, I found myself much more patient with our timeline. God is good. God was (and is) protecting Jake and blessing the hands of those who are caring for him. I had to let them do their job. We would be coming home soon.
October 4, 2017. Our family’s homecoming.
Three weeks of Jake and Gabby.
They were finally coming home.
“You knitted me together in my mother’s womb long before I took my first breath.”
Since his time in the NICU, Jake has had a full gamut of doctor’s appointments to figure out why he is still not swallowing. We’re getting closer to answers, but this has been truly a journey of learning, advocating, and loving on them.