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 2, Labor & Delivery

From this point on, I might start inventing details, but I'll try to keep them interesting.  Hopefully my doula, Kim will be able to provide me some details to fill this in. So much has happened since the L&D event, and during most of my labor, I think my mind escaped to another dimension.

So, there I stood at 10 p.m. Wednesday night, in the bathroom, leaking and bewildered. I got on the phone with Kim to give her a heads up.  I told her I'd call Dr. Tate, per my instructions. Brian, well, I can't recall what it was he found necessary to do - perhaps dash upstairs to alert my parents - but he asked me to put my drippy self back in bed with the boys and try to get them to sleep. I'm not so sure he was thinking straight, but I gave it a go.

My parents had driven up the day after I originally thought I was in labor.  After a couple uneventful days, we had been really hoping they'd get to see a baby while they were up.  Just in case, we promised them a visit if they missed out. I wasn't thrilled about the time of day this was taking place, but at least we were for sure on the road to a baby now!

I called Dr. Tate, and his response slightly disappointed me, but looking back, I should not have been surprised. I had envisioned staying home and trying to get some sleep, or a hot shower and waiting until labor really kicked in. At the moment I wasn't feeling much contraction activity. Doc T wanted me to go in and have the baby checked to make sure there was no risk of cord prolapse, etc. It's good that he wanted to play it safe. By his reputation, you'd think he was a big radical risk-taker, but that's just from those who haven't studied the facts. He has a fantastic record with Vaginal Births After (Mulitple) Cesarean (VBAC, VBAMC, VBA2C etc), breech babies, multiples and other non-standard births.  What's unique about him these days, is he knows how to handle anything that comes up, with solutions other than C-Sections.  He can turn babies, use forceps or vacuum, dive into emergency surgery, or whatever is needed. He believes in labor and birth and in a mother's body's ability to do what it was made to do. His approach this night wasn't like I've heard before from other doctors, though.  Typically they would barrage me with all the scary possibilities and risks - I would feel like I was being scared or manipulated into a course of action.  All of my encounters with Doc T during the labor process were full of sweetness, confidence and compassion with a tone of reasonable caution. He never led me to feel manipulated, and told me outright he believes in informed consent, such that he gives the facts and his opinion, but it is my decision. I always felt valued and respected.

After my talk with Doc T., I called Kim back to let her know the plan.  We were going to keep her posted on the triage results and call her in when needed. She reassured me that we could take this step by step and make decisions for ourselves based on what felt right, such as whether to officially check in, or leave to do some walking after triage.

Mom was up by now, and we chatted a bit.  She remarked at the similarities to her third labor - a pasta dinner, followed by some stretching exercises, followed by water breaking. The similarities unfortunately did not end there, as we would find out later.

Brian had the car loaded up and we hit the road. We hadn't gone far before the contractions picked up to a regular pattern.  I think we picked up some breakfast, but I can't recall for sure. By the time we'd stopped at a gas station to pick up illicit snacks and drinks for the labor room, I was getting very uncomfortable and contractions were 3 minutes apart.  By the time we were within 10 or 15 minutes of the hospital, I knew I would want Kim with us soon, so I texted her, asking her to come in.

We got checked in and set up in a triage room. My water break was confirmed and I had a sterile speculum exam. At some point we were moved to our labor and delivery room. I paced around the room for a while, stopping occasionally to lean on a chair or the bed.  Eventually the nurse was nervous enough that she got me pinned down to strap on the monitors. Elijah's heart rate was doing well. My contractions were regular and getting stronger. At this point I loose almost all sense of time.  For a little while, at least, I was able to participate in conversations and watch some Super Bowl commercial candidates that CareerBuilder.com had out for voting. Shortly after, I checked out.

I lived the next 8 or more hours two or three minutes at a time.  The pain became unbelievable. I'd always had really bad menstrual cramps that would have me curled up in bed groaning, if I had the luxury. I was anticipating that labor would be largely like that or slightly worse, followed by some more intense or even excruciating pain right before and during delivery. I figured I'd want to work the circuit of defiantly shedding my monitors to sway in a hot shower, or pace the floor. I assumed I'd work up a big appetite and want to graze on my hidden snacks and drinks. Whoa mama, was I wrong!

The pain rocketed to about a 15 on a scale of 10 and I felt pretty much paralyzed.  I didn't want to move, even a little.  It seemed like any time I changed positions, it triggered an even worse contraction. I tried standing and swaying with Brian and hated it - I felt like I was being suffocated on top of having my uterus twisted into knots.  Of course, he's almost a foot taller than me, so that's not particularly comfortable in any state. I tried leaning on the bed, which was so-so, but the contractions made me want to squat, and against better judgement, I hadn't trained for that. I spent a good deal of time on the ball, leaning on the bed.  That worked out fairly well because Brian sat on the other side of the bed and holding my hands and saying calming things to me between contractions and Kim sat behind me, coaching me through contractions and squeezing my back. I could effortlessly make minor position adjustments and stretch my back. Much of the time, though, I had planted myself somewhat Indian-style on the bed, grappling at my own back and, for some reason, often supporting much of my weight on my fists.  I knew I should try to relax my entire body, but something about that felt good.  I tried to focus on keeping my face and lower body relaxed.

At first, Kim's coaching seemed a little esoteric, as she was encouraging me to "go deep", but soon it completely clicked and became a tangible and effective pain-coping ritual. I could tell when I was losing control of the pain, as my voice would get higher and I'd feel more panicky. When in control, I prepared for the contraction by relaxing my body and clearing my mind, and as the surge came on, I began to groan in a low voice, and as it built, I would groan harder and deeper, while visualizing all the energy being directed down and out and being put to work preparing the way for baby and moving him towards birth.  I was thoroughly shocked and stupefied by the intensity of the pain - and the completely bizarre and feral noises I was making.

A well-meaning nurse kept popping in and would comment about hearing me out in the hall and ask if I wanted pain medicine.  That was a bad thing for me.  I already would struggle pretty severely with self-doubt at the apex of contractions, wondering how I could possibly endure another.  Having pain relief dangled in front of me really weakened my resolve. I never let go of my goal, though.  I wanted to birth a completely unaffected/unmedicated baby, and I held onto that, even with my weakest grip. I wasn't sure if time had slowed or completely vanished. I felt locked in a loop of torture and relief that seemed to have no end or beginning, and almost all other reality had vaporized. As each contraction would wind down, I would hear voices fading in reminding me to let go and relax and I would take a deep breath and try to blow away the residual pain and all I could gasp was, "ICE!" Brian would calmly hand me the cup of ice chips - those wonderful, delicious, delicate pellets of hospital ice - and I would crunch down on a few and feel my mouth rehydrate and the cool trickle of moisture down my throat, and then fade back out to await the next test.

Finally, when I was feeling entirely wild-eyed and beat-down, someone came in to check me.  I was so nervous to hear the answer.  If it wasn't a significant amount of progress, I didn't know how I would go on. It seems like she dug around for an eternity, which had me bracing for utter discouragement. But when she stood straight and said I was a 7, I rejoiced.  I was in transition!  About that time I first noticed the sunlight. Brian and Kim cheered me on - I was almost there! For a while, Kim would occasionally ask me to describe location of the pain. For the longest time, I was not sure if the pain was becoming more "cervical" or not. Near this time, I felt like I had to pee really bad, but was in a bit of a panic because I didn't think I could get out of bed through the contractions.  Brian found a pan and I managed to get out of the bed, and am pretty sure I missed the pan anyway, with the little that I could squeeze out. Oh well, one loses concern for these things. I think I finished the job later when I started pushing.

Soon after, my mind began to chant, "Where's Tate? When's he coming?" Every time the door would open I looked hopefully in its direction, hoping to see my doctor walk in. The pain had begun to include definite sensations of bottom pressure, and my contractions were ending in a much different, almost relieving sensation, accompanied by a wild roar of a vocalization. The seemingly omniscient "Doc T" strode in with his entourage some time after 9 a.m. In my mind, I leapt up with joy to see him and threw my arms around him with relief. In reality, I belted out a wolfpack battle cry.  He sat on my bedside and place my foot on his chest, ready to check my cervix. I felt a slight panic when I realized he was waiting for a contraction. As he examined me, I reflexively pushed at him with my foot. He instructed me to pull my knees up instead of pushing them out, which required a complete rewiring of my brain.  Whatever he was doing amplified my pain about ten times, which I didn't think was possible.  He stood up and announced I was a 9 and was already pushing and couldn't help it and that I'd be ready to push in about 15 minutes. This was around 9:30 a.m. People milled around as the minutes passed and I thought I was going to pass too.

I was lucid enough to answer that I did want a mirror. I amused myself realizing that I paused to marvel at how perfectly the mirror was placed. I crumbled into another contraction. Doc T tucked away his tie and checked me again. I realized then what he meant by pushing.  I realized the sensation I'd been feeling at the end of my contractions was my body pushing. Doc T suited up in his protective gear and started digging at my birth canal again.  That made me push like mad, but I had to be coached that I was fighting myself by making noise and not pulling on my legs hard enough.  I was afraid to hold my breath, like I'd burst a blood vessel or something. I thought I was pulling hard, but found I could go further.

Pushing felt great. It's hard for me to say that and segue to saying it felt EXACTLY like pooping (like I read it would feel), but I guess there's something at least slightly rewarding about relieving myself of feces too. However, to continue with the TMI streak, large poops hurt.  This didn't register as pain. Tate was dumping oil down the pipe and massaging and stretching some part of my birth canal.  While he was doing that, it made me have to push.  They kept telling me not to push when I wasn't having a contraction, but I couldn't tell anymore when I was having a contraction. Doc T stepped away for a moment (I think to ready some forceps due to a brief decel), and I sat there marveling at the mirror, seeing a tiny circle of Elijah's head, wondering impatiently when I was supposed to push again. It felt like 10 minutes later (but clearly wasn't), that I decided to push, thinking maybe I was feeling the urge again. This time I held my breath and I wrenched my knees up. In the mirror I saw Elijah's head lurch out and Doc T lurch forward. There was commotion and I wasn't sure who was saying what to whom, but I couldn't stop. A moment later, the rest of Elijah sprang forth. Brian jokes that Elijah came out like a fighter pilot ditching his craft and the cord stretched taut like a rubber band springing Elijah back. So, on January 14 at 10:09 a.m. I pooped out my 8lb 13oz, 20", APGAR 8/9 son in 13 minutes!

Doc T offered an ever so slight reprimand and started mumbling about the damage. I wasn't physically aware of what he was talking about. I didn't have a chance to feel that "ring of fire" or the 4th degree tear or any of that. I was on a high with my sloppy new baby on my chest and it was amazing. I felt powerful and alive. Elijah and I stared at each other as I squeezed him and smelled him and babbled about how beautiful he was and "Hi, I'm Mom," and who knows what else.  There were after-birth things going on below, but I paid no mind. I started wiping him down, and noticed some of the "stuff" wasn't wiping off.  Knowing that babies are frequently born with all sorts of spots and rashes, I casually asked, "What are all these spots?" It quickly became apparent that he was covered from head to toe in red and blue blisters. Nobody had a clue what it was. I was about to see if he'd try to nurse, but he sounded really gunky, so they tugged him away to suction him.

They were taking some time with him, and in my daze, I wasn't aware that there was any significant concern with him, so there I lay, splayed out on the table, with nothing but a dislodged nursing bra, a cell phone and a very bright light in a formerly private place. I passed the time texting since-forgotten messages to since-forgotten recipients, as Doc T tried to put Humpty Dumpty back together again. After a bit, Brian told me he was going to accompany Elijah to the nursery for observation. There we go again, having our new baby whisked away. But, he came into the world the right way and I got to spend some time with him, so...okay. The stitching seemed to take forever and I seemed to have lost my gladiator toughness, because I kept yelping at the needle pokes, and Doc T tried to keep up with the numbing medicine.

Once I was all stitched up and the crew was packing up, I found myself bewildered again. This was supposed to be hugs and pictures time. There was supposed to be a milky-mouthed baby in my arms, and cheesy grins, hugs, high-fives and thank-yous all around. I lay there with no covers, no baby, no husband, completely tongue-tied, while everyone busily cleaned and charted.  I hope I at least thanked Doctor Tate. He provided me a priceless gift. Brian and Kim were fantastic too. I can't imagine how I could have plowed through that labor without them. Without Kim, I would have been an out-of -control mess and that would have put Brian in a very challenging and disconcerting position, trying to figure out how to meet my needs and help me cope with the agony. I very well might have crumbled into strategies that might have lead down a very different and unfortunate path.

A kind nurse finished cleaning me up and got me situated with a very welcome ice pack. Kim stayed with me while we waited for me to be moved to my recovery room and the next leg of my unwelcome adventure.