When my husband and I started to Louisville on December 2, 2016 we had plans for a quick follow-up visit to the doctor, dinner, last minute Christmas shopping, and back to Campbellsville before either of us turned into a pumpkin. We had a small scare the week before over Thanksgiving break and the ER Physician suggested follow-up with my regular doctor just to be safe.
At the doctor’s office that day, my blood pressure had not fallen into what was considered a normal range, so my husband and I were sent to Labor and Delivery Triage for blood work to be performed. Since it was Friday, the doctors were kind enough to squeeze us in so that we would not have to make the long trek from Campbellsville for the results again on Monday.
While we waited for the results, Justin (my husband) and myself continued to plan our evening. Honestly, we were growing a bit impatient, but remained lighthearted on the brink of an enjoyable evening together and another stress-free weekend before our holiday plans ensued.
Just before we had put the final details together for our evening, the doctors entered our tiny triage room. Four doctors, as well as a few other staff filed in—one after the other. Justin and I were smiling, ready for our discharge instructions. Once the door was closed, I immediately noticed the countenance of each of the medical professionals. It was a very heavy seriousness that is difficult to explain. In that moment I can remember swallowing as my throat closed up slightly. I looked at Justin in the few seconds before anyone spoke and I saw a fear that I know he would not have wanted to me to recognize. There was without a doubt about to be some bad news broken to both of us and it was very evident that no one wanted to do the talking.
The attending physician sat on the end of my bed and began to share the results of my bloodwork. I could feel at least a dozen eyes on me as she spoke. With each new detail I experienced a jolt. We would not be leaving the hospital until the baby was delivered. I was 23 weeks and 5 days along in my pregnancy and had been diagnosed with early onset severe pre-eclampsia. The doctors explained that pre-eclampsia is a disease of pregnancy in which the only cure is delivery. About 1 in every 8 pregnancies presents with pre-eclampsia, but typically symptoms do not present and progress until after week 28, or well into the third trimester. When the symptoms present this early, the likelihood that it will develop into a very serious condition, H.E.L.L.P. Syndrome, increases. H.E.L.L.P. Syndrome is life threatening for the mother and very dangerous to the infant because it means a very, very early birth for the child.
The doctors outlined a plan for us that was essentially to keep me as healthy as possible for as long as possible to avoid delivery prior to 28 weeks. If my health digressed quickly, however, we would need to be prepared to deliver our son in the 48 hours that followed the diagnosis.
Just as the medical professionals had filed into the room one after the other, they filed out. I waited until the door was closed behind them to let the fear hit me. The tears came slower than the flood of decisions that needed to be made. We needed to call our parents, make work arrangements, and the nursery was nowhere close to being completed. We didn’t have a car seat and had not even had our first shower—what was the little guy going to wear? So many thoughts to sort through, but ultimately the greatest priority was trying to absorb all of the information that was being presented to us about what the first few months of our son’s life would be like—if he survived.
We switched rooms nearly half a dozen times in the week that we were in the hospital. Justin probably slept a total of 3 hours in 3 days on chairs pushed together or benches that were obviously not meant for sleeping. We met with Neurologists, Maternal Fetal Medicine MD’s, Optometrists and Ophthalmologists, and a handful of Neonatal Physicians and Nurses. My health unfortunately did not improve, so an ultrasound was performed to estimate the baby’s weight—1 pound and 6 ounces. His survivability rate was less than 30% if we did not make it to 24 weeks. I was given a series of steroid injections in anticipation of his early delivery and it was a day to day gamble with both his health and mine. The anxiety was at times crippling. Minutes felt like hours and at one point I had rendered myself physically speechless after a severe panic attack with debilitating tremors. I had been trying so hard for days to convince my body that I was not going to be sick, and that in spite of the odds my son was going to be born term; however, it seemed that my body was literally turning against me. No matter how hard I tried to will the circumstances away, reality kept throwing elbows into my gut.
On December 6th,2016 the Maternal Fetal Medicine MD and his staff had decided that my condition had worsened to the point where it was necessary to take our baby by emergency C-Section. The H.E.L.L.P. Syndrome had brought us to bloodwork each hour and blood pressure being taken every 5-10 minutes. The spots in my vision were now blurs and my headache was excruciating. My liver and kidneys had begun to shut down, platelets were reaching a dangerous number, and my blood pressure had me on the brink of seizures. If we waited even a few more hours, it could cost me my life. My concern at that moment, however, was not my life—but my son’s. He was now 24 weeks and 2 days, so his chances were slightly improved from our last consult, but it was not the kind of ending that I was hoping and praying we would receive. With our families surrounding us, the doctor reached into his pocket and took out a folded sheet of paper that he handed to Justin. It was an article outlining some of the most recent research correlative to our circumstances. He was somber toward us as he explained what would more than likely be the outcome for us. It was going to be exceptionally doubtful that both Jon and myself would make it out of this scenario. I listened in a way that allowed me to absorb the information but remain emotionally detached.
Again, the doctors left the room. Then our family left Justin and I for a few moments before another crew of medical staff would file in with paperwork and surgery prep. It was at this point that we decided it was time to name our son—Jon Luke Watson. Everyone to which we shared his name said it was a strong name. To this day, I could not agree more. I trembled as I was taken to surgery—afraid that I would never see my husband or mother again, or have the chance to know whether my son survived. It was a fear that made my 28 year old body age 10 more years in a matter of seconds. The kind of worry that I would not wish upon anyone. The last thing I remember are the kind faces of the Anesthesia team, talking me into a deep sleep.
When I awoke I did not open my eyes for several minutes. I could hear voices but none that I immediately recognized. When I heard Justin’s voice I opened my eyes and searched for him. I had only one question, but was afraid to ask…What about Jon? Before I could ask, Justin took out his phone and showed me a picture of Jon Luke. He was 1 pound and 7.5 ounces and 11 ¾ inches long. I had survived and so had our son. Apparently, that was all that I needed for the moment because only minutes later I fell back asleep. I had lost a lot of blood and was very weak, so the doctors did not allow me to get out of bed to go and see Jon until two days had passed (and two transfusions). Justin and the grandparents had all been to see him and brought me plenty of pictures and updates.
On December 8th, 2016 I finally met my son. Justin wheeled me to the NICU and we sat at his bedside. I looked at Jon Luke in front of me and felt Justin behind me with his hand on my shoulder and it was the first sigh of relief that I had felt for almost a week. It seemed like everything was going to be okay.
When we went back to the hospital room we continued to try and process what was going to happen once we were discharged. How could we possibly leave him here and go back to Campbellsville? We were having discussions about hotels and apartments in Louisville or driving back and forth from Campbellsville to Louisville everyday when a social worker came to talk with us about the Ronald McDonald House. If I am honest, I did not have high expectations for a public boarding house but I would have stayed anywhere to be close to our son while he was fighting so hard for each and every breath. I had heard about the RMH, even volunteered and donated for the cause in high school, but never really knew all that they did. Boy, do we know now.
Leaving Jon at the hospital was unbelievably hard. I remember being in physical pain when we were discharged. It was nearly 10 pm in Louisville—a city that can seem quite intimidating at night to someone who is not a native. It was freezing outside. Though the RMH of Kentuckiana was only a few blocks from the hospital, I had time to shed a few tears of physical pain and sadness for the tiny life that we had to leave behind. Justin helped me from the car into the building and in an instant there were twinges of comfort. The receptionist was kind and because it was Christmas time there were Christmas trees scattered around the house, decorated with flickering lights and homey touches. I was not physically able to take the tour, so I was given a chair to sit upon in the main living room while one of the staff showed Justin around. When they returned to take us to our room, we passed a volunteer group baking Christmas desserts in the kitchen on our floor.
There are so many experiences that we could share with you about how RMH of Kentuckiana acted as a “home away from home” for us during our son’s NICU journey; but Christmas 2016 seems like a good example. Jon Luke was born December 6, 2016 and less than a week later it was discovered that he had a very aggressive infection in his blood. The next few weeks were very hard for Jon Luke physically. The doctors tried several different antibiotics to try and keep the infection from progressing, but it was a very critical situation. In addition to all of his breathing difficulties, his tiny body was very, very sick. He was not gaining weight. Justin and I were on edge, exhausted, and spent most of our time at Jon’s bedside so that we could stay informed. There were some days where the staff even suggested to us that it may be best for us to “stay close” or not to leave the hospital. On Christmas Day 2016, however, we received a phone call from the doctor. That day, one of the cultures had finally been negative, which meant that the infection seemed to be responding to the antibiotics. We had been waiting for the first “high” of the NICU roller coaster that the doctors and nurses had described to us…and it came on Christmas Day!
Something else makes this day particularly special as well, especially in regards to our time at RMH. Since we were not going to make it home for Christmas, my husband’s family was going to come to Louisville and we were going to spend some time at the RMH. When they arrived, we all had a wonderful dinner together in the main dining area, cooked and cleaned up by loving volunteers. We then went upstairs to the 3rd floor common area, already decorated for Christmas– with baked goods made by volunteers directly behind us on the counter of the 3rd floor kitchen just waiting to be enjoyed by a family just like ours.
As we began to exchange gifts, my sister-in-law passed out identical boxes for everyone to open at once. When everyone opened their boxes they stood up and held up their new shirts against their bodies. Each one read “Team Jon Luke” “Fight Like a Preemie”. There was a tiny superman emblem and boxing gloves emblem on the front and then each person’s name and relation to Jon was personalized on the back. I had two boxes to open. The first was for me, it read “Mommy” on the back. The second was a onesie for Jon, with his name on the back. I smiled as I began to cry and I remember that Justin started to cry a little bit as well. But that was not the end…just as we began our “Thank You’s” our family handed us a series of other gifts that had been sent from family and friends. As we counted the unbelievable substantial amount of money and read the overwhelming number of cards from our loved ones I could almost feel the ground beneath my feet, once shaky, now starting to feel more firm. Justin and I realized in a very prevalent way that we were being held up—and held together by a support group beyond what we ever could have imagined. The RMH was a huge part of that support group.
Looking back RMH of Kentuckiana was so much more than a boarding house. It truly provided the opportunity to heal, not just physically, but emotionally. The staff were hospitable, the rooms were clean and comfortable, and I could always count on being well fed. I felt safe, even when my husband was not able to stay with me at night. Best of all, it was within walking distance of our precious baby boy. Knowing that I could be at his side in minutes if something were to happen (which did take place) was the greatest assurance a mother could feel.
Thank you, Ronald McDonald House of Kentuckiana. There is no possible way that our family could ever repay the kindness that was shown to us for the 120 days that we spent at your facility. Someday, however, we hope to give back to your cause so that the families who will enter your doors broken, can continue to leave restored, just was we did.
Ashley, Justin, and Jon Luke