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.

If you start using the potty, I'll laugh at your poo with you.

Scrubbing poo out of the carpet before breakfast is not the best marker of a good day. That's OK. I'm keeping my eyes on the Prize.  We are planning our escape to an undisclosed location *.* at an undisclosed time. Having bumbled through the morning with my free-day-at-the-children's-museum virus, I put the kids down for a nap. Tip-toeing to the toaster (sing that in a squeaky voice), with my non-napping baby in one arm, I almost wish someone was witness to my deftness as I yank the toaster lever up, sending my horribly wonderful toaster pastry prize into the sky, high enough for me to snatch it with the same hand. Mmm. The only thing more rewarding than evil treats is managing to gobble them without the boys noticing.

Junk-snacking is not a great idea. This bug already botched my new workout routine after only one trip to the gym! I figured I'd be nice and not share our boogers with them. Interestingly, it seems the last time I had a bug was also the last time I blogged. I'll try not to make that a habit. I've also been "partying" with an over-clocked thyroid, which doesn't make me the friendliest mama on the block, and...also has me constantly seeking a sugar fix.  Oh leetle vacation, where are youuu?

If anyone is keeping a list of things moms/wives don't care to hear, I have a few you can add.  They range in severity from "*sigh*" to "OMG I don't ever want to hear that again."

1. Toddler saying: Mooooooom! Change me! Change me! (accompanied by a squishy trail of special effects)
2. Husband saying: Your toothbrush is awesome!
3. Toddler saying: Dad! Let's play poop! (proceeds to crawl between dad's legs, saying "poooo-oop!")
4. Toddler in bath hollering to me in next room: He he he! I'm tickling myself mom!
5. Toddler to dad: Take! I taked your penis and now you have a 'gina! (I think we're a little obsessed with "down there" right now)
6. Pre-schooler saying proudly: Look! I made a golf club. (holding up carefully torn page from a book)

So the other day, my sweet love sent me a business-romantic meeting request for a 7-hour "special event" that requires a sitter. I don't really care at this point if it's grocery shopping. He's made it so...intriguing, so...mysterious. I'm ready to grab my cart and go! Actually, he's a great "picker", so I know it will be cool.

Guess I'll go Neti the Drooling Yeti (i.e. irrigate my sinuses).

I need a Tuesdayectomy

Apparently the unpublished price of admission for Vacation Bible School is one fever for each participant, to be distributed immediately to said participant's doting mother. Well, I haven't had Ian and Isaac's fever *yet* but I did acquire a sore throat and a certain bleariness. I suppose it was worth it to observe Ian's carefree joyful participation, albeit his own version of participation - mainly consisting of bunny hops and skillful dance moves around his peer group.

Elijah has been working on some sort of rash for a couple of weeks. At first I thought it was a heat rash because he had little red bumps in his elbow and neck creases. However, since then, its covering his whole body and he's itching like crazy, since last Friday night, at least. Not sure if it's an antibiotic allergy, a virus or just dry itchy skin. The skin under his Tegaderm is breaking down and he scratches at that a lot too. We've experimented with different dressings - Bioclusive and now some Duoderm under his Tegaderm.  I've also wrapped his chest in 3" Kling and made little "wife beater" tanks out of some tube gauze to keep it all contained. All wrapped up like that and sporting some socks on his hands to disable the grabbers, he looks just like a little prize fighter.

Between Isaac's fever and Ian's fever, we took our first overnight "micro-cation" since Elijah was born. We drove up to Dalton Saturday night and stayed in a hotel so we could spend the next day in Chattanooga. Ian had been begging us for  weeks to stay in a hotel. We grabbed Chick-Fil-A on the way up and arrived in time to swim in the pool before bed. The indoor pool deck was incredibly slippery and Isaac slipped and fell three times while walking carefully. The last time, he hit his head and we decided we'd had enough of that. We instead went "swimming" in the room. Our room had a giant whirlpool bath in the corner of the room, so the boys splashed in there for a few minutes.  We actually managed to get Ian to sleep in his own bed. When Brian rolled in the spare bed, Ian thought it was the coolest thing ever and immediately claimed it. The boys jumped on it a bit and when Brian said it was bed time, everyone tried to pile into our Queen-sized "King" bed (we were told it was a King, but sure seemed small). We had to resort to the conniving tactic of starting to offer the extra bed to Isaac to engage Ian's jealousy switch. Ian ultimately decided to take the bed and slept there all night, though only under the condition that I draped an arm down over him.

Sunday, we had a non-adventurous brunch at Five Guys, before continuing to Chattanooga. I forgot to mention, we chose Chatt because Brian's dad is doing some work in Murfreesboro, and it was a good halfway point to hang out. However, he, unsurprisingly was quite a bit faster readying himself than our circus of five, so he actually met us at our hotel. In Chatt., we grunkled** into a walking bridge, so we parked at one end of it for $3, loaded every possible contingency item into our stroller and headed for the bridge (**The term grunkle is a word of Skinner-family origin, meaning to fortuitously encounter something while traveling). It was so hot we were afraid we'd been forgotten at the Second Coming.

Near the foot of the bridge was a sign for a glass bridge to the right. I had to experience that. I hefted the stroller up the ramp and onto the bridge. I paused at the apex and told Ian to climb out of the stroller and look down. I wish I could describe all the thoughts his expression conveyed, but he very quickly found and planted his feet on a spot supported by a steel beam. He was intrigued, but cautious. It really was an interesting experience to stand on such an elevated glass floor. I wonder how that Grand Canyon walkway would be.

We went halfway over the walking bridge and decided it was far too miserable to be outside, so we turned back and decided to go to the aquarium nearby. On the way to the aquarium, we collectively tripped and fell into an ice cream shop. While there we asked a local what our boys might like to do and they pointed us to a kids' science center that was in "walking distance." That was "walking distance" like our bed the night before was a "King." It was a cool place though, and the boys had a blast. The first area had some water activities and a play structure and they could have happily stayed there all day.

For dinner, we went out of our way to go to Famous Dave's. It was glorious and amazing BBQ when we ate there in Omaha, but now we see why so many have closed down. Oh well, that's out of my system now.

On our way home, we were reminiscing about our day, and all the fun we had. We asked Isaac if he had fun that weekend and he said, "yes."  We asked him what his favorite part was and he exclaimed, "Chick-Fil-A! Num num num!"

Yesterday went by in a blur. Not often a day goes so quickly. At one point, Ian was keeping Elijah and me company while I nursed Elijah to sleep. Ian told me, "When I growed into a little baby, I had to go to the doctor and he measured my heart beat and I almost didn't need a poke.  Then I camed home and got bigger and growed teeth and now I have 20 jokes and I need to grow down to a little baby again." I'd like to hear the professional analysis of that. Too funny.

Today has more than made up for yesterday's quickness. Last night, not even a good dose of Benadryl gave Elijah a good sleep. It was one of those nights when I question if I got any sleep at all. Isaac is definitely Two. Lots of big Big BIG emotion. Sometimes he starts wailing and I have no idea why and he won't or can't tell me and will only shriek, "hold me hold me hold me." If I set him down so I can do something so selfish as pee, the wailing starts up again and doesn't stop until I pick him up again.  It gets a little hairy when both Isaac and Elijah insist on being held.  This evening, after Isaac woke up from his nap doing his perma-wail, I finally had to "bribe" him with a peanut butter and chocolate (Nutella) sandwich. He quietly breathed "mm hmm," at the suggestion, so I dove into action. I had previously tried to assess the situation to no avail. "Are you scared?" "No." "Are you hurt?" "No." "Are you lonely?" "No." "Are you hungry?" "No." "Tell me what's the matter, sweetie." "No." So, I had to pull the chocolate out of my bag. "Mm hmm."  Yes! A "yes!" Quick! Somebody get me the Nutella!

The anticipation of a gooey chocolate sandwich apparently did some magic, because I'd no sooner put my knife to work when Isaac cracked a giddy smile and said, "You're happy, Mom!" He ate his sandwich in his typical solemn demeanor. I took the opportunity to change Elijah's diaper and as I turned toward the trash can, I stubbed my toe, yelping a little in pain. Isaac exploded in laughter.  Enjoy, Captain Schadenfreude. This one's on me.

This week has been a blast

Spring is here and the diapers haven't even melted yet. Every morning I've been playing Waffle House with my new cast iron two-burner griddle. The item apparently on the boys' menu is pancakes. I mixed it up one day and made them SpongeBob Eggs.

Isaac ate his right up, but Ian only wanted to talk to his. I finally cut it into pieces and said it was a Sponge Bob puzzle for his belly to do.


Elijah had his PET/CT scans last Tuesday. They looked quite clear and he will start his maintenance course of chemo on next Tuesday - yay!  That means we have to go up only once every 3 weeks.


I'm a million years behind on my documentation, so here is a quick run-down of items for the personal archives - no story line, no fancy transitions - nothing.


One day, I hear from the shower, "Bong! Bong!" "Ouch, Ian! That's not a bell!!"  I'll let your imagination fill in the details.


Ian has the most adorable new word.  I'll use it in a sentence.  "Ian, where are your shoes?" "I don't underknow." He does have a way of phrasing things quite effectively. We've had the pleasure of entertaining a stomach virus at our house this week. Ian told me his tummy hurt. I asked him if it hurt like he had to poop. He laid on the floor and said, "It hurts like I want to lay right here until I get up." That's pretty much exactly my sentiment.


I taught Ian about Elijah's soft spot on his head. I described that it is a place on his head that has no bone yet. When Brian came home,  Ian said, "Elijah doesn't have any bones there. I gived him one of my bones so he could be safe."


While playing outside one evening, Isaac looked up at the crescent in the sky and exclaimed, "The moon is chomped!"


Ian likes to make random announcements to invisible spectators. One time while playing blocks with him, Ian stood up and faced his audience saying, "Hi, my name is Ian. I'm building a tower and this (motioning) is my best friend, Mom."


While on a walk, we acknowledged Ian's friendly gesture of waving to a passing car. He said, "I was a gentleman!"


Actual Seuss line: This one I think is called a Yink. He likes to wink. He likes to drink. Ian's version: ...he likes to drink and have fun with the guys.


Ian coughed & said. "I'm ok." He coughed again and said, "I'm ok again." He coughed a third time & said, "I'm ok a six time."


I'm really anxious for Isaac to decide to potty train. Every so often I bring up the subject. During a really messy change, I asked Isaac, "Would you like to try using the potty? Having poop in your diaper must feel so uncomfortable." "No." "What if I got you a little potty just your size?" "No." "We have a little green potty and a little white potty with stickers!" "(pointing to the supplies) Get mine clean diaper!"


One time Ian inspected Elijah's toes and kissed his head and hugged his belly and said "I'm just right for him." And, he sure is! He adores his baby brother and takes the best care of him.


I think that about covers it.


Brian's dad has had the enjoyment of rolling into town during our "potty relay" week. We're probably loads of fun, but I'm sure glad he's here! He's keeping the boys alive while I lie curled up in bed, trying to contain my innards. When the big boys woke up yesterday, I told Ian to go find Grandpa and he'd make them breakfast. Ian replied, "No, I'll find you and you'll make me breakfast."  I tried to remind him that Grandpa loves cooking and, "he'll make it just like you like it." "No, he won't!" Ian protested. "He'll make it too spicy!" Later in the kitchen, Ian was still not convinced, as Grandpa started some pancakes. "Look, Grandpa is making you tasty pancakes!" "No! He'll make them crunchy!" I'm not sure why that would be a problem. As I mentioned in a previous post, he seems to have a taste for blackened pancakes.


The three oldest men in the house have gone off in search of Pedialyte and Preggie Pops, two delicacies for our nauseous, dehydrated selves to enjoy. I was going to nap with Isaac and Elijah, but Elijah decided I would stay up. Ahh, the best-laid plans. 

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.