After delivery, it took a while for me to get transferred to a recovery room. What a different experience it was to be offered even crackers and juice. I wasn’t terribly hungry, but I ate them slowly out of principle. I felt like my blood sugar was low, or more perhaps like my blood was low. I also suspected my lungs and stomach had become lazy, because when I’d sit up, I felt a sensation like my upper innards were trying to fall into my newly vacated abdomen, and that was a bit nauseating. I was very anxious to go see Elijah, so when Brian told me I could come to the nursery to try and breastfeed, I summoned the will to keep my organs in place while I transferred to a wheelchair.
My parents were in the nursery adoring our polka-dotted Elijah and talking to the nurses. Mom and Dad are both nurses, so they speak the language. They were helpful to us in a thousand ways while they were here, and one of them was their ability to break the ice with the staff. Brian and I would leave the nursery sometimes not quite sure what to make of one of the nurses and we would return after leaving my parents to work their medspeak magic, and voila, the nurse in question had become friendly and hospitable.
Elijah had an oxygen mask nearby, to occasionally give his oxygen saturation a boost. He was breathing fast and his chest was retracting. We tried to nurse, but the poor guy couldn’t breathe through his nose. The inside of his mouth looked mangled with sores. The little toughie was staying remarkably calm, though.
I can’t remember exactly how or when his transition to the NICU occurred, but he was moved there in fairly short order and fitted with a feeding tube, IV and nasal canula for oxygen. I remember becoming very fixated on pumping. Since he was starting off with soy formula, providing him healing and protective milk was very important to me, particularly in my helpless-feeling state. Nobody had a clue what was wrong with him. We were suspecting these sores were in his nose and throat, causing the airway constriction and discomfort, but we weren’t really considering anything internal at this point. I was not sure how to think or feel. He was strong in utero and handled labor and delivery like a champ. His APGARs were 8 and 9. He did not seem like a sick baby. My mind framed him like a healthy baby with a stuffy nose. He just needs a little help until these sores heal. I sure wanted to hear a name for these sores.
Three days of round-the-clock pumping, holding, praying, kissing and rocking passed for me. Three days of pokes and prods, tape and bandages, scans and exams passed for Elijah. It was time for me to be discharged. I broke down, not knowing our options, mourning the inability to be wheeled out of the hospital in an overloaded wheelchair, proudly displaying my new little bunny. This was the first time it really sank in that this could take some time. This was when I started to feel like a completely inadequate parent to all three of my children.
We were graciously granted accommodations in a “room-in” room across the hall from the NICU. It was a very small, very basic room. It had one small bed for both Brian and I, and now we are Spooning World Champions. There was also a small closet to keep all our belongings and supplies in. Thank you, Tetris. Completing our cell was a bathroom, bedside table, recliner, television, and a clock that perpetually said three o’clock. A really awesome nurse hooked me up big time. Think of it like being a female washing up on a desert island with a crate of Maxi Pads – not a situation you’d hope to find yourself in, but one you’d come to see the value in once you’d come to terms with your fate. SuperNurse brought in towels and all sorts of post-partum care supplies, eliminating my concerns on that front. My parents came in with tons of groceries that kept us fed three meals a day for the remainder of our stay there.
Allow me to digress for a moment to rain praise on my family. Almost all of our immediate family lives in Florida, except my brother, who flies from California to all parts of the world and back, as a medical escort and flight nurse. However, I know as fact that he would have jumped on this wagon in half a second, were he nearer. My parents, my husband’s parents and my sister all volunteered a week of their time to come up to Georgia, and they set up a rotation so that we would have nonstop help for weeks after Elijah’s birth. Other members of the family have supported this rotation in other ways from home. They have deep-cleaned and organized our house, and maintained it through the 2- and 3-year-old “storms” we have at home. They’ve kept our boys at home, in their routines, in good company, and drove them up to see us each day while we were cloistered. They shopped and cooked. I can’t imagine the additional stress we would have felt without their help. My parents have provided a special level of support, because, as I eluded to in a previous section, they went through a very similar situation with my sister. My sister was born with a heart condition that required major surgery as a newborn. My parents have been able to empathize with the fear, helplessness, loneliness, grief, stress, frustration and pain of having to leave my new child’s life completely in the hands of God.
Not to get ahead of the story, but my husband’s mom has provided an invaluable support to us too. We wrestled with all sorts of arrangements, trying to figure out the perfect balance to divide our time between Elijah and our boys at home. We live 6 miles too close to get into the Ronald McDonald house. The boys are forbidden from the hospital for flu season. We had strangers offering up basement apartments and friends offering extra rooms in their homes. Finally, we spent a night or two at home and were moved by the healing powers of dinner at our own table, a soak in our own bath, and sleeping snuggled up with our boys in our own big bed. The boys responded so well to that arrangement; they handled goodbye in the morning so much better than a midday goodbye at a park, because they knew we’d be back for the night. But we still needed an arrangement for the day. Brian’s mom responded by moving her home-based business up to our house to stay long-term until we are settled back home with Elijah.
Now, back to our time in the hospital cell. I found it a little bit comforting to be in a teeny room. Maybe it’s like a scared animal quivering in a log. Something felt safe about its smallness. I don’t care to relive in this account every dreary-long day in that room, nor do I care to spill the poison of the mistreatments and injustices we felt. It was quite a roller coaster with frequent ups and downs of fear and hope. I was pumping every three hours around the clock. It was a chore, but gave me a feeling of involvement and duty. The pump, though high-grade, was inefficient and uncomfortable. As soon as I finished (after 30 or 40 minutes), I would dash the milk over to Elijah’s room. I would change him and hold him for at least an hour, believing strongly in the comforting and healing abilities of kangaroo care. The nurses spoke many times of how he screamed and was in terrible pain, but I never witnessed that behavior the entire time I held him. That convinced me that he needed to be held as much as possible. After a few days, I was completely bleary-eyed and the lack of sleep was heaping mud on my emotional train wreck. Brian and I started off trying to be with him together, to have 4 ears to listen to the updates, then soon switched to alternating schedules to give the other some nap time, even though I still had to get up to pump. Even that was not sustainable. After regular lectures from the nurses to get some sleep, I painfully chose to allow Elijah to be formula fed for one or two feedings at night. I felt like a terrible mom for it, but knew I wouldn’t be much good to him if I ended up sick. My milk supply was keeping up almost exactly with his feedings. Finally, after 4 or 5 days, my milk really came in and I started getting ahead so he would never need formula.
All sorts of specialists from around Atlanta were in and out of Elijah’s “room” – Infectious Disease, Dermatology, and more. Finally, one doctor said “Blueberry Muffin Baby”. An extraordinary number of tests were run on the little guy. One by one, they’d come back negative, and each sigh of relief would carry us through the rest of the day. Finally, they decided he wasn’t contagious, so no more harassments about gowns and gloves. A chest X-ray showed what looked like pneumonia in his lungs, so he was on antibiotics just in case there was infection. After a few more consults, another doctor said it looked like a form of Langerhan’s Cell Histiocytosis. Since his skin was healing so well, they were hoping it was Congenital Self-Healing Reticulohistiocytosis – something that would just go away on its own. That was a huge, though premature sigh of relief.
My face leaked constantly that first week. I cried out of fear. I cried out of relief. I cried when I left my older boys. I cried when I left my new one. I cried when I pumped “just” 10mLs. I cried when I pumped a “whopping” 60mLs. I cried when Elijah got poked. I cried when he smiled at me. I cried that our boys had not yet met their new brother, and tried desperately not to wonder if they ever would. I cried hardest of all when Brian returned to the room from his visit with Elijah and told me a specialist from Children’s Healthcare of Atlanta at Egleston looked at Elijah’s case and was pretty sure the LCH was in other parts of his body and that he wanted him transferred to CHOA Egleston and would probably need chemotherapy. I immediately pictured my fragile newborn looking even more hairless and emaciated, suffering worse from caustic drugs. They moved quickly on the transfer, that same Saturday. We didn’t even have time to pack. I went with Elijah on his Angel II Neonatal Transport ambulance. Brian packed up the room and followed.