Three, Two, One, Vinblastine

Yesterday (Friday), Elijah *finally* had his last planned dose of chemo. In three weeks, he will have a full-body PET scan, and if it is at least as good-looking as his previous scan, then he will go to an observation schedule of check-ups every month, then every three months, then 6 months, then annually. He has about an 80% chance of staying well, says Dr. B. He would be likely to relapse sooner than later, so they will probably leave the port in for a few months. Dr. B. said after three years, his chance of relapse dramatically decreases.

The interesting thing Dr. B. said about the PET scan is that it does not have to be completely clear - just mostly clear. That takes a load off anticipating the scan. Now, after all this, am I excited? Meh. I'm quite glad the little guy won't have those nasty drugs in his body, but this hasn't really felt like a "weight-lifting" moment. Brian reminded me that it's a good thing. Our big-sigh-of-relief moments had been coming after re-inflated lungs and such. His progress has been so protracted that a last dose of medicine is pleasantly anti-climactic. Plus, we are probably holding our breath a little bit for the scans. Plus we have been in "cope" mode for so long that our leaps for joy are probably more like tentative skips. Plus we generally feel great about his condition and don't expect any surprises. Plus, the only thing that will change in our routine is the absence of medicine; we will still take monthly jaunts to visit our clinic friends.

I have a nearly-irresistible urge to skip his last week of Prednisone. I am to give him 9 more doses over the next 4.5 days, to accompany his chemotherapy. That stuff makes him absolutely bonkers. Then, there is the Zantac to protect his tummy and the Hydroxyzine to help *us* sleep, because none of us can rest with his steroid-induced Brownian motion. So, that's the hard part of 10 milliliters of repugnant liquid to get a twitchy, cantankerous toddler to swallow. If I'm sneaky, I can get the first gulp to take him by surprise. He fights the second squirt, pocketing some in his cheek long enough to convince me he's swallowed, then blow-holes it before erupting in a spirited cackle. On the third attempt, his face is whipping side-to-side so quickly, I can scarcely locate his mouth. I visualize my next move, waiting until he pauses, and I launch my medicine missile. Typically, I then shuffle to the sink to wash my empty syringe, hoping he'll absorb enough from the puddle in his ear to do the trick.

Wait Lifting

As I wait again in the family waiting area for a NICU surgery to wrap up, I'm reminded of the difficult lessons I'm learning. The first is patience. I'm learning that God has a timeline and I'm better off letting go of mine and embracing His. I have a matryoshka doll of "waits" bobbling in my mind. I have the big waits of wondering when my baby will be healed and when he will be home. I have littler waits nested within of when will the chest tube come out? and when will the doctors trust our breastfeeding to grow his body? There are surrounding waits of when will the NICU let us back in so I can see my baby? and when will the doctor tell me about the last scan?

My whole day is a succession of waits, big and small. I'm not good at waiting, at least not through all these unknowns. If God could just send me a messenger to say, "Elijah will be fine and you will be home together soon," I could wait in peace; If I knew it would all work out, I could endure almost anything in the meanwhile. Over the last 8 weeks, I think I've been decompressing a bit. My 6-week hopeful mental deadline came and went with no homecoming. I've let go of trying to guess when we'll have him back and have relaxed into knowing he is where he should be. He'll leave when the time is right. I'm trying to lift my waits to God and believe that the "whens" don't matter next to God's will. Our world is in His hands.

As I sit here moping, I tear up a bit when I see a father across the room hang up his cell phone and burst into a relieved cry, "She's okay!" The family circles up for hugs and a prayer of thanksgiving. It was his daughter's surgery I was waiting on to get back to see my son. He was waiting for her life. As my waits are put in perspective, I want to jump up and join the group hug to celebrate with them.

My second, and equally-challenging lesson is relinquishing my self-reliance. Floods of offers for help have come in from friends, family and acquaintances. For the first weeks, I couldn't think of what I needed, aside from stability for our boys, which family was providing. I wasn't sure there was anything to need. I felt bad because I could tell people genuinely want to help, but I've been so autonomous I couldn't come up with anything. Finally, someone, not knowing the wisdom of her actions, practically forced help upon us. We, very uncomfortably, accepted lunch for a week from near-strangers.

I felt very humbled, if not a little uneasy, to have meals delivered to the hospital each day by people who spent the time, effort and money to cook or order them. Quickly, though, the blessing manifested itself. The warmth of a tasty meal, delivered in love, nourished our hearts and bellies. We had something wonderful and reliable to look forward to each day. That gave me the courage and humility to ask our devoted church members for a few meals we could keep in our deep freezer for those evenings when we don't have enough juice left to cook. Someone passed out 42 casserole pans in church and from that day we have not had to cook a single dinner!  What a blessing and a relief!

I don't know why I developed my independent nature. It's been too important to me to solve my own problems and meet my own needs. It doesn't make much sense to me, because in the other direction, I'll do just about anything for just about anybody for the sheer joy of helping someone. I like to be a contributor. So, why is it so hard to be a recipient? Why is it so uncomfortable for me to feel so indebted to so many people and to know I could probably never repay each person, and *gulp* could probably not even list each person that has helped us. Why do I feel the need to repay deeds that were done without expectation, and perhaps even causing offense if I tried? If I were to think as a giver, I would want my recipient to feel at peace with my gift - to feel relief from the burden that has been lifted by my gift - and to go about her day, free to focus on what matters.

As I write these words, I'm seeing a big blinking arrow pointing to some important truths. People need people. We weren't meant to handle everything on our own. Sometimes a harder lesson than learning to give is learning to receive - to accept what we need from those who freely give. Most importantly, I'm reminded to daily accept the gift of life that God had freely given. We each need to accept it with gratitude and peace, understanding that we will never deserve it, earn it, or be able to repay it. We owe no debts; we've been freed to focus on loving Him and each other. What a blessing and a relief! 

Pleasantly Bored

Okay, so how many different ways can I document my daily routine? Got up. Pumped. Got dressed. Ate. Stuffed frozen milk in a cooler. Got kisses from the boys. Said goodbye. Said goodbye some more. More kisses. Said goodbye one more time. Drove to hospital. Pumped. Woke up munchkin at 11:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchkin back. Pumped. Went to lunch. Woke up munchkin at 2:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchin back. Pumped. Mildewed (Huh? OK, when I was growing up, every time I asked my dad what he was doing, he said "mildewing". I never "got" it, but I think I'm catching on now). Woke up munchkin at 4:45. Changed diaper. Detangled wires. Attempted breastfeeding. Put sleeping munchkin back. Pumped. Got slightly reprimanding looks for encroaching on shift change. Grabbed drink and snack from caf. Drove home. Ate dinner. Pumped. Crammed in playtime with boys. Got ready for bed. Pumped. Read stories. ZZZzzz.

The awesome part is sometimes I mix it up a bit and change a diaper after breastfeeding or get a lunch date with a brave and kind soul who stopped by. There are also cool little details I didn't bore you with, like, I took his temperature. Ooh today he gets an Xray. Say, maybe I'll change his clothes.


At the hospital, a boring day is a great day. Today is a really, really great day. The less action this boy can stir up, the sooner he'll be home.

Home. Home. Where my other funny little boys are. I have more fun with these little guys in the sliver of time I get with them during the week. Last night we read The Monster At The End of This Book. That was always one of my favorites as a kid. Last time we had read it was shortly after Christmas, and I think Isaac was a little scared of it. Maybe it was Dad's voices that did it. This time, Brian read it once and Isaac took it and "read" each page, saying "Monter at end of tory. (Looks at Brian) Turn page?" After a few more stories and clicking off the light, snuffly little Ian volunteered to pray. "Dear God. Fank you for God. Please bless everyfing. I want mommy to clean my nose. Bless the trucks. Aaaamen!"

Daddy's A What?!

Here I sit in my favorite (*gag*) waiting room, shut out of NICU once again for a surgery, bored, but grateful it's not for Elijah. Two TVs are blaring sports and trash TV. Really, I couldn't be less interested that you don't know who the father is. Might as well use this time to write an update on my new strange life.

I just signed consent for a new chemo treatment (which apparently we're not going to do after all), and am contemplating lunch. I had a very pleasant day yesterday. All the staff are nice, but I really clicked with this particular nurse. We shared our obsessions with new pens and paper, containers, and high-fat candy bars. I lamented about my milk supply. She meticulously documented the day. While mixing one of Elijah's feedings, she inadvertently dribbled some milk out of a syringe. "No worries, I have plenty," I playfully jabbed. "Oh, snap!" she replied with a wince. Good times. She was the first nurse we interacted with when Elijah was transferred to Egleston, and she really helped put our minds at ease and instill confidence in us about his care. She's the only one we've had who pulls up a chair and leans in and ask questions when a doctor comes in to consult with us. Consequently, she's often there late to finish her charting, but we really appreciate her attentiveness and skill, in addition to her fun personality.

The boys at home seem to be settling into the abnormal as the new normal. Every evening, when we come home from our respective "jobs" - Brian from work & me from the hospital, the older two are sitting on the steps by the door, waiting to say "surprise!" or are dashing through the entryway, happily cheering, "Mommy! Daddy!" Grandma Cummings has one of the generously-donated pans of food heated up in the oven and tells us all about their day's adventures. She is not alone in her interest to get Isaac potty trained.  That boy's sport is the defecathalon. Trying to gauge his interest, I asked Isaac the other night if he'd prefer to poop in the potty or in his diaper. Ian chimed in with, "Igick wants to poop on Daddy. Daddy's a potty." I learn something new every day.

Grandma was particularly impressed yesterday when Ian used Lincoln Logs to add head lights to his monster truck. He used a long one across the doors as a cross beam and placed short logs on each end as lights. He did a demo for us when we got home. It actually was quite cool. Then he lined up some Hotwheels and drove over them. Later on, he rigged one of his Jamestown settler's cannons under the hood so his truck could blow smoke. After we crawl in bed at night and turn off the lights, Isaac tells us he's afraid of monster trucks. Ian corrects him that monster trucks are not scary; they're nice. And they like to be petted.

Ian's 3-year-old imagination grows more vivid every day. One time, after accidentally leaving the door cracked open, we caught Ian coming in from the garage. Brian asked him if he'd gone into the garage by himself. "Yes." "What did you do in the garage?" "I did cartwheels in the garage. And I hurt myself." Most days, when we ask him what he did that day, he replies that he "played at Miss Emily and Luke's house" or "played with Collin and Jayla". We know he can't reach the gas pedal on the car yet, so he's full of wishful thinking.

Apparently, even 22-month-old Isaac can get his fill of Ian's embellishments. Ian was trying to tell us last night about how sad he had been. He said, "I was sad. Very very very very very...very very..." and after the umpteenth "very", Isaac curtly interrupted with, "very sad."

Trying to add normalcy where we can, we took the boys to church last weekend. That probably wouldn't be their first choice of normalizing activities. OK, I'll drop the baloney - it was for us. The service was infused with the sweet songs of several children's choirs. I thought that would spark Ian's interest, so I stood him on my knees and enthusiastically whispered, "Look! The children are singing!" Always the diplomat, Ian bellowed, "The children are hurting my ears!" Sometimes, Ian is a little more clever with his words. The other day, Ian held out a toy he was done with and said, "Hold this, Dad." "Please," Brian suggested. "Yes you may!" Ian cheerfully replied. Foiled, Brian took the toy.

The Elijah Cannon: Part 4, Treatment Begins

I was amazed by the size of the CHOA Egleston NICU, the quietness of it, the professionalism, and the hosptality. We could tell immediately that they had "it" figured out here. They understood that the experience was more than a baby in a bed - that each baby comes with a family, and each family comes with fears and needs. We were almost immediately grateful for the transfer. We came to realize that we never really had that "left to dangle" feeling. It seems like down almost every hallway, someone would stop to introduce themselves and genuinely address our emotional and physical needs. A social worker spoke with me first and let me cry out Elijah's story on her shoulder. She addressed the issue of finding a way to spend time with each of my children that I could feel good about. She provided us resources for trying to find a place to stay and ways to try to get financial aid. Then a chaplain met with us. Then an ambassador. They've all been very accessible and in regular contact. Every nurse and doctor explains what they are doing to Elijah, as well as what steps they are taking to ensure his comfort and safety. If we are away, they call us on our cell phones to keep us posted. They treat Elijah with gentleness and compassion and us with respect. They encourage our involvement in his care and help us feel important to the process. They've done the neatest "extra" things too. They gave us a journal to write in, and occasionally, the nurses write a note in it from them or from Elijah. I was also given some Mommy Love Squares - crocheted squares I can wear close to my heart and leave with Elijah so he has my scent near him when I'm away. One nurse also made Ian a big brother book out of photos she had taken of Elijah, and wrote a story in it and illustrated it with some stickers and scrapbook supplies.

The facility has sleep rooms, handed out nightly on a lottery basis. We tried that for a couple nights, until we decided it was more beneficial to sleep at home. They have showers, lockers, laundry machines, a work out room, pumping rooms for breastfeeding moms, a business center, a snack room, a library, classrooms and more. Parents get very discounted meals and parking, and breastfeeding moms get free meals.

By the following Monday, Elijah had a Central Venous Catheter surgically implanted, a bone marrow biopsy taken, and an X-Ray, PET scan and MRI. Tuesday, he started chemotherapy with Vinblastine to be given weekly and Prednisone given daily. The tests confirmed lung, lymph, bone marrow and possibly spleen involvement. That was hard to swallow, but by then we already knew that the initial treatment would be the same, regardless. We also understood that this chemotherapy was different than cancer chemotherapy, in that with cancer, treatment starts aggressively, whereas with LCH, treatment is started slowly and built up as needed. His side effects were expected to be minimal with the low doses he gets.

Elijah had been intubated for the surgery, but when they tried to extubate him, he didn't do very well, so they put the breathing tube back in. A bronchoscopy showed significant swelling and lesions in his upper airway, which were restricting his breathing ability. He also got a blood transfusion to try to give his system a boost. After his first dose of chemo, on Tuesday, January 26, his skin actually seemed to look a little worse, which wasn't an unusual response. Wednesday night, our pastor and some church elders came in to pray with us and Elijah for his healing, and read from James 5. It's ironic and reassuring that the passage speaks of the great prophet Elijah's faith.

I don't know why, of all the times I contemplated it, I chose that night to finally show Ian and Isaac pictures of Elijah. I'd been trying to hold off for Elijah to look "good", but enough people convinced me that at least Ian could understand and "handle" the idea that Elijah needs some special medicine and help from the doctors and nurses. I did choose one of his earlier photos, when he had more spots, but just a feeding tube. The boys loved the pictures and didn't seem at all concerned about how he looked. It felt so good to "introduce" their new brother to them. Ian said, "Come out of the picture, baby Elijah!" He hugged the picture to his chest for quite a while, occasionally looking at it or kissing it. The next morning I got some tape and Ian taped the photos to the wall. Throughout the next days, he would occasionally move them all to a different wall. Sometimes one of the boys would pull down a picture and carry it around for a while.

Shortly after, we were talking to one of the neonatologists, and he arranged to sneak Ian in for a visit. Ian thought it was very cool to wear the special mask, and he climbed up on the chair at Elijah's bedside and gently touched his leg and belly. He seemed captivated. He looked all around at the machines. Elijah was on a ventilator at this point and Ian pointed to the screen and said, "This goes all the way to baby Elijah". He got down and inspected the bed and the drawers and wheels and buttons. He stayed so quiet and gentle. It's frequently hard to tell what Ian thinks of something. When we asked him what he thought of Elijah, Ian said, "He's good."

Friday was the first time I'd really seen Elijah smile. He must have grinned because he was hatching a plan. That night, he surprised us by losing a tooth we didn't realize he had. Then, on Monday, he extubated himself and was breathing more calmly than I'd ever seen him breathe since he was born. By Tuesday, his nasal canula was removed and he was breathing great on room air. That day, he had his second dose of chemo. Wednesday, he was moved into a regular crib. His tube feedings of breast milk were gradually increasing. Friday, we joined our church family in a day of fasting and prayer for Elijah's healing. That night, he was moved to the step-down unit. On February 9, he had his third dose of chemo and the next day, his Morphine was discontinued, since he hadn't needed any in a while.

By Friday, February 12, Elijah was in great shape. He was up to full gravity feeds and was having success with small bottle and breast feeds. He was spending a lot of time alert, happy and active. I felt pretty spoiled, coming in every day and holding him for hours, talking to him, singing to him, smelling him, and soaking him up. Very early Saturday morning, we got a very surprising call. Elijah was back on the ventilator. They weren't exactly sure what the problem was, but Elijah had been cranky, breathing hard, and grunting. They suspected sepsis. Hours later, we got another update that he was not septic, but instead had a pneumothorax. One of the LCH "bubbles" in his left lung had burst, causing air to escape from his lung into the space around his lungs, collapsing his lung. They aspirated the air out with a needle and observed him for a while, but eventually inserted a chest tube. Later, we were shown the X-Ray, and were amazed to see that the lung had collapsed over so far it was pushing his heart into the right side of his body. His body had compensated really well for the event; apparently he had gotten just a little pale and mottled, but didn't have a really severe reaction. That probably had a lot to do with the staff being so attentive and moving quickly to his aid.

Saturday, we had a big snow, for our part of the state. We couldn't safely get to the hospital to see Elijah, and maybe it was just as well, since we would have felt the need to go, even though he would have been sedated all day and not looking so well. Sunday, Brian, his mom, the boys and I all drove up to see him. We took turns keeping the boys distracted while the grown-ups visited with Elijah. He was pretty alert and seemed as comfortable as could be. We pretty much plowed through the fact that it was Valentine's Day, and Elijah's 1-month birthday. Holidays have pretty much shriveled up into meaninglessness these days. Brian and I did make a point the week before to try to have a dinner date, but we couldn't really shake the cloud over our head. We just talked about our poor little boys the whole time.

Monday, the 15th, around noon, Elijah was extubated and has handled that fine so far. The next step is to get the chest tube out, when the X-Ray shows no more air in the wrong spot. His chest tube is currently on water seal, which means the suction is off. He handled his first full gravity feed, since his pneumothorax just fine.  I imagine, or at least the hope is, he'll progress to back where he was last Friday, and we'll start those scary/exciting discharge discussions again. It's relieving that this happened while he was still here, but it's very scary to think there might be other time bombs in his lungs, that we may carry home with us at some point.

My brain doesn't really know what to do with all of this. I'm craving a home life with the 5 of us together, but I fear it too. There will probably be months and years of wondering if he'll ultimately be okay. He's been a strong boy since birth, yet so fragile too, at the mercy of the beast in his body. I have no doubt, watching him go through all of this, recovering so well over and over, that God is holding His little boy in His hands and has plans for him. It crushes me to see what he has endured, not seeing an end on the horizon, knowing he's been a month on this earth and has experienced only the sights and smells of the hospital. I crave for him to know what it's like to have two bigger brothers kissing on him, and to spend his days and nights nursing at his mother's breast and dancing in his father's arms. Some days I feel assured it will happen. Other days, I make the mistake of reading too much about other kids' losing battles with LCH, forgetting that their fate has nothing to do with his, and dread that there will be a terrible backslide. He is an amazing little boy with an awesome God. I cling tightly to the promises that God is my strength and my refuge. I remind myself to be still and know that I am God. I feel fairly certain of what I can and cannot handle, but only God knows, and He will carry us through this journey, as He carries us now. He will be glorified through this.

I can already see some of the beauty in this. Completely unrelated social circles of ours, as well as those of our friends and family, have united to support us and pray for this little guy. Strangers and acquaintances from a web board I frequent spent a week bringing us lunches. Our church is still blessing us with dinners that we can pull out of the freezer and heat. We have received cards, emails, prayers and prayer blankets from around the country - the world even. We've been told of people who do not customarily pray, who are now praying for Elijah. Heaven knows this child's name! I choose to believe that little Elijah is surrounded by a bastion of mighty angels, sent from the Father, who loves this boy more than I could ever aspire to.

The Elijah Cannon: Part 3, I Always Knew Polka Dots Were Trouble

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.