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 perinatologists, 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.