Wonder: Unbalanced Location
While AJ was inpatient at Lurie Children's Hospital, I took total advantage. On one hand, I wanted to be there for and with him. On the other hand, I seen this as an opportunity to do, well, just about anything I wanted. I kept thinking, wow 8 hours to myself while the kids are in school, this is amazing. I didn't know whether to disappear from obligations completely or make up for lost time. The fact I had time to even ponder in my own thoughts was thrilling and exciting.
AJ was inpatient a total of 5 days, 5 hours, and 42 minutes. Don't ask me how I know this, I just know. Within that time, I made sure to get a good night's sleep, stretch out my workouts, prepare dinner every night, check on AJ twice a day by phone, schedule myself a doctor's appointment, have family over, and plan a trip. I also went out to be with AJ three times and stayed for about 4-6 hours each visit (Lurie's validates parking for $12 if its 6 hours or less, anything over is $43). Since this wasn't our first spontaneous admission into the hospital, I adjusted to this schedule quickly. This admission felt different, but manageable compared to the rest.
I mean, the driving an hour and a half each way to see AJ definitely depleted me of energy, but it didn't matter. If I felt a bit lazy or fatigue, I napped. I had time to do that now. It has been months since I've fallen asleep during the day. All I had to do was yawn or blink slowly once and I was incoherent for a good two hours. Sleep deprivation was certainly conquered in those 5 days. If I felt I was overthinking or anxious about Aj's outcome, I took it out at the gym. It wasn't so much about seeing the scale drop as it was about letting out steam. The freedom to just get up and go, was just a plus.
Also, the trip I planned for my family was much needed. It was Thursday morning and I was at Lurie's on the phone with Julius when we decided now was the perfect time to get out. I observed CNA's, nurses, feeding specialists, and doctors popping in on AJ to check vitals, start feeds, and change linen, diapers, and his position. Everything was so hands on and done with delicacy. I told my husband our son was living in baby luxury. All his hierarchy needs are being met. I also felt comfortable and trusted everyone I'd had an encounter with. It was time for us to stop sulking and stressing and go do something fun. IF something were to go wrong, he is exactly where he needs to be. So, I pulled out my laptop and before I could even begin my search, Julius mentions wanting to go to The Shed Aquarium. So, I got to work. We'd take the train there and back, get XL Ubers to travel while we're down there, and return home before 6 p.m.
Only, we ended up getting a call on Saturday notifying us AJ was ready for discharge. That his seizures were now managed with Keppra 2x a day and they felt comfortable with sending him home. I was taken back by this news since I had just spent Thursday with him, and no one mentioned anything. In two days, no one talked about a discharge date or how his seizures were under control. Respectfully, I told them I could not come today. I wasn't sure if AJ could bare our Shed Aquarium trip moments after leaving the hospital. I couldn't cancel our plans; deposits were made and so was my mind. I instead decided we'd cut our trip short and get on an earlier train to get home before 6 p.m. So, I told them I'll be there Sunday afternoon to pick him up. We then spent extra time chatting about what to expect from AJ when he comes home.
Sunday comes and surprisingly we're all in a great mood, even August. We got on the train at 10:30 a.m. and made it to the Shed Aquarium by noon. We all really enjoyed ourselves and agreed that the 4D Shark show was one of our favorite things to see. I'll never forget, my husband turned to me and said, "Thank you for pushing me to do something different. I had so much fun today.". Something about that comment just made me feel so appreciated and valued. Not to mention, we couldn't find any flaw about our day and still laugh about how we all ended up sleep on the train ride back home after playing a game of iSpy. Looking back, Julius and I joke about how dangerous it was for us to be sleeping on a train with two little babies. I keep reminding him of how he literally wakes up at the sound of a pen drop. Criminals don't stand a chance against him. The babies were 100% safe and protected.
While AJ was at Lurie's I was able to meet with Lurie's ENT and Genetic Specialist team. Both were amazing at what they do, and I was enlightened with some new information. The Ear, Nose, and Throat team let me know they diagnosed AJ with Laryngomalacia. They were referred by hospital staff due to AJ's cough, mucus, regurgitation, and baby acid reflex. All the symptoms associated with laryngomalacia. It's described as soft tissue of the larynx that fall over the airway causing it to flop. The terminology is new, but it is associated with Strider cry. Something AJ has had since birth. Not a major concern at this time, but as AJ ages if it continues to progress, he will need a surgery. The conversation between the two Genetic Specialists and myself was by far the best encounter I've had about his condition. His case was always presented to me as Partial Trisomy 18 when conversing with his Genetics Doctor from UIC. However, at Lurie's they described it as 'Unbalanced Translocation of 4 &18'. Still very rare, however, because the two diagnoses are similar, they gather information about one to learn more about the other. For AJ, he has some facial abnormalities, epilepsy, a heart condition, developmental delays, impaired vision and hearing, minor clubbed feet, and a corrected mandibular jaw. These complications are associated with children who have Trisomy 18, which is why they group the two together. Since AJ has Partial, certain things may not present themselves at a certain time, or if at all. So, the best terminology to describe AJ's condition would be 'Unbalanced Translocation of 4 &18'. Not sure why, but it was reassuring to hear. It just confirms that I am on the right path of allowing AJ to define his own past, present, and future. As of now, AJ is back to his normal feeds, sleeping better at night, and engaging during the day. He has since gained 4 lbs. and I have started giving him my frozen breast milk, while I try to build up my milk supply again.
In 5 days, I rekindled my relationship with myself, my love for adventure and spontaneity, joy within my kids and marriage, laughter, the importance of time, and the remembrance of curiosity and wonder as a child. This was the spark I need to feel refreshed and whole again. I am now able to explore, create, and write with the intentions I once had. Hope, optimism, and consistency.
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