Jolene did pretty darn well with her "Ad Lib." The doctors removed her feeding tube on Friday morning (the 29th) and after that it was all up to her to see if she could eat enough to stay hydrated and then increase to eating enough to sustain and grow. The doctors had a minimum threshold set that she needed to meet, otherwise the tube would go back in. Jolene far surpassed the bare minimum and did much better than we expected. Eating is hard work though...very frequent (but smaller) amounts, applying pressure to her chin to lessen the gag reflex, holding her upright to help with reflux, lots of burping (and she's a "difficult burper"), keeping her awake (because eating really wears her out), etc, etc.
Come Monday, we anxiously awaited the rounds from Jolene's doctor to see what she thought of the weekend's efforts at feeding. Dr. Wong and Jolene's OT came in to talk with me fairly early, and said they were very impressed with how everything had gone. They asked if we were happy with her improvements and if we thought she would continue to improve, given what we had seen/had worked with over the weekend. They also asked if we thought we could handle everything at home, given the extra attention that Jolene would need. My answers: yes, yes, and yes! So then the magic word was uttered: discharge! We would be going home on Monday, June 1, exactly two months after our journey began.
Monday was not an easy day, however. Jolene needed vaccinations, a hearing test, a reflex test (to see where she was developmentally since laying in a hospital for two months can really slow down natural developmental milestones), a car seat test (she had to sit in her car seat for an hour and a half while hooked up to all the monitors, just to make sure she could tolerate it), and visits with the dietitian, case worker, and what seemed like a million other people. By the end of the day Jolene was just plain done with people messing with her, but we loaded her up and left for home around 6:30pm.
Our little Jellybean continues to improve her eating and we will go once a week to the pediatrician to check her weight and adjust her feeding as needed. We are praying that with hard work we can get her to where she needs to be not just to do okay, but to thrive! This first week at home has been exhausting but absolutely wonderful. You never really know how much you take for granted until you don't have it...to have our family all together under one roof is so nice. We are all more relaxed, happy, and at peace.
It's been an amazing ride, these last two months...never in my wildest imagination would I have thought I would have this experience. You always think it won't happen to you...but sometimes it does. While Jolene's two months in the NICU was nowhere near what so many other families have to endure, we have seen our fair share of craziness and we would never wish half of what Jolene has been through on anyone, let alone a newborn baby. But, through this experience we have gained a great perspective, a new appreciation for many things, and an awe at how great God is and how precious his miracles are. We thank each and every one of you who has been on this journey with us, prayed for us, and worried about us and for us. You have given us strength and motivation and we are very grateful. I will post updates periodically on Jolene's progress!
