Now that we've been home from the hospital for almost four weeks, I'm finally getting around to writing about this whole experience with Elijah. Mike and I truly lived our absolute worst nightmare as parents. But, Elijah is an amazing little boy and we've had the support of our wonderful family and friends-not to mention an incredible medical team, so Elijah is doing great now! We are truly blessed!
Starting back in early to mid-June, I began to notice that Elijah's head seemed to be larger than normal. I switched him to 3-6 month clothes, but all of his shirts and onesies were tight going over his head and he had already outgrown a 3-6 month hat. This is a picture of Elijah with Mike on Father's Day (June 15). Although he was wearing a stretchy hat and it seemed to fit, it just didn't look right to me.
On Monday (the day after Father's Day) I asked several friends at a MOMS Club event if they thought that Elijah's head looked big. People thought that it looked big but not abnormally so (at least from what they said). That night while I was giving Elijah a bath, I mentioned it to Mike. I know that some babies just have
big heads but the size of his face didn't seem proportional to the rest of his head. I measured his head and it had grown 6 cm in a month and a half. At two months, his head circumference was 39 cm (25th percentile) and it had grown to 45 cm in only 6 weeks. I looked up the measurement online and he was in the 99th percentile. I knew that wasn't normal since the rest of his body hadn't grown that fast, so we started looking up more information. The first thing that came up when we looked up "rapid head growth" was a link to autism. Although autism isn't typically diagnosed until a child is 2 or 3 and starts to display different behaviors, a link has been found to rapid head growth in infancy. We figured that would be a challenge but something we could definitely deal with. As we continued our search, we read more about
hydrocephalus and figured that was probably what he had. Elijah was scheduled for his 4 month well-visit with the pediatrician the following week, but I didn't want to wait that long since we were supposed to leave for Wisconsin at the end of that week for a two and a half week vacation. I e-mailed our pediatrician Monday night, explained what I noticed and the measurements I had taken, and she said that it could be an indication of hydrocephalus. She said that she could get us in for an appointment that week if we didn't want to wait for his well visit, so we scheduled an appointment for Tuesday afternoon. Since I was sure something was going to be wrong, I had Mike come along to the appointment. Our pediatrician said that hydrocephalus is something that can usually be treated with a
shunt, but it depends on the cause of the hydrocephalus. I didn't say it, but I was definitely concerned that he had a tumor once she said that. The doctor wanted to get Elijah in for a CT scan (under sedation) at Children's Hospital but they couldn't schedule him until the following week. Again, since we didn't want to wait that long, we got in for a head ultrasound on Wednesday morning. On Tuesday night I called my mom and explained what was happening. I figured that Elijah was going to need surgery and we'd need help with the girls, so my mom was able to use a free plane ticket and come here on Wednesday afternoon. We're so lucky that she could come at the drop of a hat.
On Tuesday night I called my friend, Lorinda, who is a nurse at Children's Hospital and asked her what she knew about the neurosurgeons. As it turns out, she works on the same floor (but in a different unit) as Neurology. She called the Neurology floor and got a recommendation for a good surgeon. Lorinda heard that
Dr. Smith was amazing but we weren't sure we'd be able to get an appointment with him. Our pediatrician said that we'd go for the head ultrasound in the morning and that they'd probably send us home and call her with the results. Then she'd set up our next appointment. That process seemed ridiculous, so Mike figured that if we were going all the way in to Boston, we should try to see a neurosurgeon while we were there.
Unfortunately, Elijah's ultrasound was scheduled for June 18th, Isabella's 5th birthday. I didn't want the girls to spend the day at Children's Hospital and be there when we got upsetting news, but Mike didn't want to leave them with a friend all day on Isabella's birthday. We decided to bring them along knowing that my mom could meet us at the hospital that afternoon. Lorinda also said that she could meet us for the ultrasound. When we arrived in Radiology, Lorinda came down and then our friend, Margaret, showed up since she works in an adjoining hospital. Lorinda called in reinforcements since she knew Margaret was working that day, too. I was really touched that they were both there to help and support us. We're lucky to have such wonderful friends who are also great nurses! Lorinda introduced us to an amazing nurse educator from the Neurology floor who was able to give us some information on hydrocephalus and set up an appointment later that morning with Dr. Smith!! We had this scheduled even before the ultrasound was done.
Lorinda and Margaret hung out with the girls during the ultrasound. Mike and I are no radiology technicians, but we can tell when a big white blob doesn't belong in the middle of a brain scan! Mike asked the tech what it was, and she said that we needed to talk to the doctor. That's never a good sign. I can't even describe the pit in my stomach when I looked at that screen. The image is reversed so the white blob you see is actually the tumor on the left side of Elijah's brain. As we learned later, the black bean-shaped space on the left side of the screen is Elijah's right
ventricle that was swollen with excess fluid. There were also fluid filled cysts between the tumor and the skull that were contributing to the hydrocephalus.
Thankfully, we left that ultrasound knowing that we were going to meet with a neurosurgeon later that morning. Lorinda had to head back to her floor, but Margaret was able to stay with the girls while we met with Dr. Smith.
The first thing Dr. Smith said was, "This is treatable." That was a relief since he said there are times that they tell parents that there's nothing they can do. I couldn't even imagine that! He said that Elijah would definitely have to have surgery to remove the tumor and the fluid-filled cysts because it would be fatal if we did nothing. He wanted to admit Elijah to the hospital that day knowing that he would have many appointments leading up to the surgery. He also wanted Elijah to be monitored in case he had a seizure or other symptoms. Up until that point, he hadn't had any seizures. We also determined that Elijah's "soft spot" was actually quite firm. Thankfully, since Elijah is an infant, his
fontanel was still open which is why his head was able to expand so much. Dr. Smith scheduled Elijah for an
MRI that evening to get a better idea of what type of tumor it was. We left the office knowing that the plan to help Elijah was in the works. We really liked Dr. Smith since he was so honest and straight-forward but also confident that he could help Elijah.
While I got Elijah admitted to the hospital, Mike took the girls to pick up my mom at the airport. A nurse tried to get an IV started on Elijah several times with no luck. During his two week hospital stay, he got dozens of pokes for IVs and blood draws. I hated that! On Wednesday night Elijah was sedated for an MRI. They needed to keep him perfectly still for the scan so they gave him anesthesia and
intubated him so that they could monitor and control his breathing (if necessary). The MRI took longer than we expected because they ended up scanning his spinal column, too, to make sure that the tumor hadn't spread. Since the MRI ended around 9:30 PM, we knew that we wouldn't get any information until the morning. That made for a long night! Lorinda and Margaret came back to help my mom entertain the girls during the MRI. Lorinda rounded up two stuffed animals from her floor for the girls in honor of Isabella's birthday. Sienna named her black bear, Freddy (With her fist in the air, she told Margaret, "It's a good name!"), and Isabella named her panda, Pandy. Despite the awful day that Mike and I had, I actually think that the girls had fun on their adventures with Lorinda, Margaret and Nana. Elijah and I began our hospital stay (I didn't go home at all for the entire two weeks) and Mike took my mom and the girls home, but he came back the next morning.
Dr. Smith came in the following morning to share potentially good news with me. He said that the tumor was contained and it hadn't spread to the rest of the brain or the spinal column, thankfully! He also said that he believed that it was a rare
choroid plexus papilloma which is not cancerous. Choroid plexus papillomas are benign neoplasms of the choroid plexus, a structure made from tufts of villi within the ventricular system that produces cerebrospinal fluid (CSF). The tumor was obstructing CSF flow which was leading to increased intracranial pressure (ICP) and causing hydrocephalus. From the look of the MRI images, the tumor appeared to have clear and defined edges which would make it "easier" to remove. Dr. Smith's main concern was that those types of tumors have a high risk of bleeding, so he wanted Elijah to have an
MRA (magnetic resonance angiogram) done to see what the blood supply was like to the tumor. Knowing that Elijah would likely need a blood transfusion during the surgery, Mike immediately went to the blood bank to donate blood for Elijah. Dr. Smith told us that he wanted to put together his "A-Team" to take out Elijah's tumor safely and successfully. Although it was only Thursday at this point, he planned to do the surgery the following Tuesday (partly because he was away at a conference Fri-Sun). He wanted to have
Dr. Orbach, an interventional radiologist, perform an
angiogram to
embolize or cut off the blood supply to the tumor. If that could be done successfully, it would make Dr. Smith's job much easier and safer. He also wanted to perform the surgery in the special
MR-OR-the world's first-of-its-kind
Intraoperative Magnetic Resonance Imaging (MRI) system in a pediatric hospital. Suspended from ceiling tracks, the 15,000-pound magnet travels from behind doors in the operating room's wall to take images before, during and after an operation. With this technology, surgeons can determine the extent of a tumor while the patient is undergoing surgery and ensure its accurate removal. Now we know why Children's Hospital-Boston is ranked #2 in the country behind Johns Hopkins for both regular pediatrics and neurosurgery-according to U.S. News and World Report!
The plan was to monitor Elijah over the weekend, but we knew that there was a possibility that his ICPs would increase too much and that he would have to have a surgical procedure to place
external ventricular drains (EVDs) to help alleviate the pressure until the surgery. From the time Elijah was admitted to the Neurology floor, I was told to let the doctors and nurses know if I noticed any changes in Elijah. Of course I was watching him like a hawk, but I didn't like that added responsibility of telling the medical personnel that something was wrong.
Friday, June 20
Elijah seemed okay all day on Thursday and Friday, but I had a feeling that something wasn't right as Mike got ready to go home to see the girls Friday evening. Luckily, Lorinda had stopped by after work and she was there when I noticed that Elijah was crying in a strange way, he wouldn't settle down to go to sleep, his heart rate kept dropping, and his right eye wasn't constricting and dilating normally when we shined a flashlight in his eyes as it had been doing earlier in the day. Elijah also had several staring spells which may have been some minor seizures. I had the neurosurgery residents come in and examine him, and I called Mike to come back. They decided to transfer him to the ICU for further monitoring and they did a
CT scan to see if there was, in fact, increased pressure. Mike made it back to the hospital in record time. We met the whole ICU team and the Chief Neurosurgery Resident told us that they would do the surgery to place the EVDs. Since Dr. Smith was away,
Dr. Madsen performed this surgery. As they were about to wheel Elijah away for the surgery, one of the OR nurses said, "I'll treat him like he's my own." I can't even begin to explain what that meant to me at that moment. I saw that nurse after the surgery and told her how much that comment meant to me. I hope that she tells other parents the same thing! Margaret had also stopped by after work, so both she and Lorinda were with me during the CT scan before Mike got there, and they stayed until Elijah was out of surgery and back in the ICU at midnight.
After the surgery, they did an
EKG to make sure that Elijah's heart was fine-which it was. Here he is hooked up to all of the EKG leads.
The newly placed "antennae" or EVDs. They were able to control Elijah's ICPs so that the extra fluid drained into two bags.
I was able to nurse Elijah in his twin bed-sized crib and I slept with him most nights (or at least tried to sleep).
June 22
Hanging out with Dada in the ICU
On Monday, June 23, Dr. Orbach was able to successfully embolize Elijah's tumor. By threading a catheter up through Elijah's right femoral artery in his groin and through his aorta to the base of the tumor, he was able to shoot a glue-like substance (NCBA-not sure what that stands for) into the tumor to cut off the main supply of blood to the tumor. There were several risks involved with this procedure. He said that Elijah could have had a stroke or Dr. Orbach could have damaged some healthy brain with the glue-like substance if it didn't go directly into the tumor. Luckily, neither of these things happened and it worked really well.
Although my mom was holding down the fort at home, my sister, Katy, offered to come from Sacramento to help with the girls and do the driving back and forth to the hospital. Mike's mom and sister, Tracy, surprised us by flying in from Pennsylvania and Ohio. We were so glad to have all of this amazing family support. The girls had a blast with their two grandmas and two aunts.
Monday, June 23
Grandma (Mike's Mom), Nana (my mom) and Aunt Katy visited Elijah after the embolization
One day Aunt Tracy did a special "Spa Day" with the girls. She used my foot spa and gave each of the girls a foot massage with lotion and a pedicure and manicure. They each got to choose any colors from my stash of nail polish. This was a treat since I usually only let them wear light pink or clear nail polish! When we got home from the hospital, Isabella had put a special sign on my bathroom door which read "Fancy Sdor" (Fancy Store). We definitely have two girly girls!!
The finished product!
Aunt Tracy and Grandma took the girls on a shopping spree at Kohl's and Claire's for their birthdays. The girls picked out new pajamas, some new outfits and all sorts of fun accessories at Claire's. Check out Isabella's beautiful magnetic earrings and new Tinkerbell nightgown with detachable wings!
Grandma and Aunt Tracy took the girls strawberry picking with my MOMS Club. I'm bummed that I missed it this year, but they shared some of their strawberries with us.
Grandma was brave enough to let Isabella do her hair.
Aunt Tracy and Grandma planned a special "Bee Day." They watched the Bee Movie, made bees out of construction paper and made peanut butter and powdered sugar "bees"!
Isabella adds the wings
The last night before they left, Aunt Tracy and Grandma took the girls to T.G.I.Friday's for dinner. 
The girls each got to order a cup of "dirt" for dessert. Holy cow!!!!
Sienna liked playing "baby" with Aunt Katy, and Isabella pretended to be a puppy. Sienna, the baby, "ate" lots of pretend ice cream and Aunt Katy had to rescue Isabella, the puppy, from "eating" chocolate since chocolate is bad for dogs.
The girls modeled their new pajamas with Aunt Tracy.
Last night with Aunt Tracy and Grandma
My mom took most of these pictures which is why she's not in any of them, but the girls had lots of fun with Nana, too!!! She came earlier and stayed a bit longer than everyone else, so she was here when we brought Elijah home from the hospital. She made play dough with the girls and took them to various playgrounds and playdates with my friends. She got to "play ponies" with Sienna every morning when they woke up. My dad flew out for two weeks, too. He likes to keep busy when he's here, so he completely reorganized our shed. Thank you to our amazing families for all of your help! We couldn't have done it without you! No wonder the girls were bored out of their minds when everyone left. They had to go back to hanging out with their boring old mom!!!!! It took a few days to get back to normal.
