We were in the NICU for a total of 5 months, 13 days. ..166 days total. ..plus the 21 days I was at Ft. Sanders prior to Addie's birth. You would think having been there that long that we would have been more than prepared for her homecoming, but actually, we weren't entirely prepared when the big day started to become a reality. One, you just can't ever be entirely prepared for a new baby to come, especially when you're spending 90% of your waking hours in a hospital for half the year, but mostly, you can't allow yourself to look towards home too much because you're so afraid of being disappointed when it doesn't happen. It's better to just accept your environment and dream of "someday". The hard thing with that is, you wake up one day and the NICU has become your home, the nurses and staff are now your closest friends, and you share childcare responsibilities with 60 highly trained nurses 24 hours a day. So, suddenly when you're faced with going home, the exhiliration of having survived and the excitement of returning to your "normal life" (which is comical. Life will never be remotely the same again. ..) and your home is met in equal parts with sadness and a sense of being out of place. My days have been the same since mid-June. Wake up, drive to the hospital via Starbucks (a girl has to have one pick me up when everything else is going wrong, so that was my splurge), park in the parking garage in one of my usual 4 parking spaces on the 1st level, go up the B elevators, buzz into the NICU, speak to the secretary and anyone else along the way back to Addie's bedside, stay there until a late lunch (grilled cheese, Baked Lays, water in the cafeteria), back to Addie until 6ish. ..repeat a similar routine at night and that's the general extent of my world. You really grow to love the nursing staff, nurse practitioners, doctors, and respiratory staff; they are the only ones who will ever fully understand how dark some of our days and weeks were. They were there when "Addie was talking to Jesus", having to be resusitated multiple times a day. They were there when her sepsis almost took her away from us. They were there for every ventricular tap, heel stick, trip on and off the ventilator, surgery & recovery, infection, bottle. ..you get the idea. They witnessed the hell we've been through and the ugly realities we have had to face. Also, in the NICU, everyone knows Addie, her situation, and she is surrounded by other babies with extraordinary circumstances. Everyone knows how small she started and understands how "huge" she is now.
I didn't understand how comfortable I was in that environment until I broke down in tears at my first pediatrician interview. I walked through a "normal" pediatrician's office, surrounded by "normal", healthy children, and had to fill out pages of paperwork detailing Addie's 5.5 months in the NICU. As I wrote out the list including a PDA ligation, sepsis, grade IV brain bleed, Stage 3 ROP, NEC, hydrocephalus, ventricular taps, vp shunt placement, GERD, aspiration problems, nissen fundo and Gtube placement, severe hearing loss in her left ear. ..I started to lose it. I relived every terrifying moment. You don't realize how many devastating blows you've taken when you're in the middle of it. You just know that nothing ever seems to go your way, but you get through another moment, another day. In retrospect you start to realize how long and how rough the road has been. By the time I was sitting in the exam room waiting for the pediatrician, I was barely maintaining my composure, and sure enough, as soon as she walked in and said, very innocently, "Tell me about Addison", I started to sob. It was the first unsuspecting step into a world where we may always be different.
But in the face of all of that change, intense fear of being responsible for this amazing little girl & her healthcare needs, and feelings of being inadequate for any of it, the overwhelming sense of excitement and pure, unadulterated joy pushes you faster and faster towards the goal - HOME. I thought I knew what happiness was. I hadn't a clue until I met it in its purest form on November 12. Until we set her car seat down in our living room did I accept that we were going home. I just knew something would happen. I think I will remember the intense emotions surrounding that final week more than anything. The sense of disbelief when Dr. Buckheit said, "It's time to make plans to go home. Soon." The amazement when Kary read the orders that we were to room-in (trial run, spending the night in a hospital room with Addie to see if we can operate the machinery she was coming home with) that weekend. Everything from then until CPR class is a blur of last minute preparation, joy, fear, and the beginning of our good-byes. CPR class was the day that we were rooming in. I am so glad we had it, but it probably scared me even more than anything. Take parents who are already scared, and then simulate what to do if your worst fears come true. Necessary, true. Painfully scary, absolutely.
Rooming in wasn't nearly as bad as we had heard, but we definitely didn't sleep. That was the beginning of our sleepless nights with Addie, so I suppose it was only fitting. Addie came home without any monitors. I agreed to it, but that doesn't mean you don't feel a TON of anxiety mingling with the excitement when she is unhooked from her pulse ox and heart rate monitors for the first time. It was kind of a fun adventure for me. I truly had grown to love our nurses as some of my dearest friends, so I looked at it as a sleepover to allow enough time to do justice to the goodbyes. We were at the hospital so much, that it was kind of neat to get to be in our room in the nursery during shift change - the 2 hours when parents generally aren't allowed in the nursery - and another freeing thing is being able to be in our room in the nursery with Addie without wearing hospital gowns for the first time. The whole experience was just amazing. We got to sit on a bed with Addie, sit in a padded rocker with her, watch TV with her. ..there are so many miniscule things the 90% of the population that has happy, healthy, non-NICU babies take for granted. I remember dreaming of sitting with Addie on the couch, casually watching TV because we had nothing better to do.. ..and that dream was about to come true! Who cares that we didn't sleep.. .I got to spend some extra time visiting with Allison & Betty (two of our night shift primaries - love them both!!), spend my first complete 24 hours with Addie, and hold her & watch TV & sit comfortably (NOT in one of the hard NICU rockers!). I think we slept maybe 2 hours that night.. .maybe. Addie did NOT sleep well. Who can blame her?! She was in a new room for the first time in her life, and we had to take away everything about how she was used to sleeping. No more incline in her bed, no more comfy nest to sleep in, no more frogs, no more blankets; losing the monitors came with a price - we had to get rid of all of those things to help prevent SIDS now that we didn't have monitors to help us make sure she doesn't get herself into trouble while we're all sleeping.
The next morning, the check-out process began. We said our sometimes tearful goodbyes to our friends and NICU family. I can't tell you how exciting, sad, terrifying that final moment was. Kelly, Kyle, and I walked Addie down to the car. ..I honestly don't know that I felt anything at that point. I actually kept expecting something to happen so we couldn't leave. But before long we were to the car and saying our final tearful goodbye to Kelly. I can't say enough about Kelly. She was and still is like Addie's second mom. If I get hit by a bus, Mom & Philip know to call Kelly because she the person best equipped to take care of Addie. She took care of her from Day 1, and she was with us all the way through Day 166. Every day she worked during that time, she had Addie for better or for worse (more often for worse), and she did everything in her power to make sure she came home safe and sound and in one piece (Including all 10 toes!! We had to work hard to save one of them..). She carried me when I didn't think I could go any further. She made sure I had something to eat and drink when the days were so bad that I just didn't care about those things. When Philip went back to work after Addie's infection, she told me it would be ok, that I wasn't alone, that we were in this together. I will never, ever forget that statement or how much strength it gave me. I wasn't alone, ever. We were all in this together for Addie. That's when we went from parent / nurse to family. Kelly loves Addie as fiercely as anyone on this earth, and I love her for it. I didn't realize how hard that good bye would be. I threatened to put her in the car with us and take her home to live upstairs (I offered room and board!!!), but she just wouldn't go for it. Maybe I will wear her down eventually!
Our goal was to be home in time to feed Addie at 2 pm, and we were just a few minutes late. We arrived home to 10214 Canton Place Lane at exactly 2:10 pm. I sniffled most of the way home, but I didn't lose it until we set her carseat on the couch.. .I literally fell to my knees and just sobbed.. .Philip knelt down beside me, wrapped me up in his arms, and we cried together. They were uncontrollable, happy tears of relief, tears of triumph, tears for reaching a moment we honestly didn't know if we would ever reach. She was home. She was 100% ours for the first time. She was perfect, and she was home in time for the holidays. Nothing short of the sweet grace of God brought us here. He used so many people - doctors, nurses, nurse practitioners, respiratory therapists - in the right place at the right time to save Addie hundreds of times throughout her first 5.5 months of life. He used so many of you to carry me & Philip through - friends both new & old, strangers who happened to hear our story, friends of friends and family of friends - all praying for us, sending notes, prayer pagers, meals, and simply loving us to death so that we had the strength to fight alongside Addie another day. I can never thank you all enough, not in a lifetime of trying. Our battle isn't over - we still have to survive cold, flu, and RSV season. We still have a shunt that could malfunction at any time, and we still have terrible reflux we are coping with even after her fundo & Gtube placement. She won't take bottles, and we can't get rid of the Gtube until she can eat enough to maintain her weight and appropriate weight gain. We have come through so incredibly much, and we are so thankful. I just tell you our ongoing challenges because we still covet your prayers, and we still need your support. I will keep everyone updated through the blog. I have some wonderful moments to share since our homecoming, including Addie's first Thanksgiving and Christmas. Those will come soon! I promise to do better!
I will close with, "There's no place like home.. ..there's (simply) no place like home."
This was beautiful, Rachel!! I got teary eyed eading it! You are an amazing mom!! Hang in there... People are all still cheering for you and Addie!
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