Happy Birthday to Me

August 23...my birthday. Forever the day I will remember as the day I learned my mother had cancer. Once again, it was a long torturous day. My mother was sent in for more testing, and we spent all day waiting to talk to a doctor. I got a call from my friend Jen around 8:00 am with the recommendation from her neurosurgeons - skip the de-bulking surgery and go straight to radiation. I was devastated by that news - it sounded to me like they were saying my mother had no time left.

My brother had spent the night at my parents' house with my father, and the two of them had arrived bright and early at the hospital at 6:00 am, hoping to catch Dr. Powers first thing in the morning while on rounds. Jeremy had run home the night before to put his daughters to bed before they left for vacation. He also canceled his trip to California and had packed all of his stuff so he could spend the week down in Rockville with us while they were out of town.

We were told Dr. Powers would be in around 9:30 or 10:00, so I raced over in the morning with the baby while our babysitter, Christin, took care of Micah, and Elliot took care of Maya. Around 11:30 or so, Elliot walked over to the hospital with the baby so I could nurse her again. He was only able to stay a short while because our babysitter had to leave at 1:00, so Elliot raced home to be with Micah and I kept Maya at the hospital. Our babysitter's younger sister, Mackenzie, came to the hospital to sit with Maya while we continued to wait for the doctor. Over the course of the day, the Niedelmans and the Kayes stopped by again to visit (and found themselves on baby duty).

It was nearly 6:00 pm when Dr. Powers finally came in to speak to us. He very carefully informed us that my mom had a substantial tumor, likely cancerous. He talked about the different options, and suggested that debulking surgery would buy us some time. At that point, he suggested that we transfer her to Hopkins for the surgery. As he explained it, the surgeon was merely the "technician" in this circumstance...what mattered was the protocol, and the surgeons at Hopkins worked in tandem with the neuro-oncology team, and would understand how best to surgically lay the foundation for the oncologists to execute their job. He suggested we see a Dr. Brem who would work closely with Dr. Grossman, the oncologist. He set in motion the transfer to Hopkins, and back to waiting we went.

In honor of my birthday, Elliot had baked me a cake. We asked the nurse if we could put my mom in a chair and have her sit in the ICU waiting area with us so we could have dinner together, cake, and time with the grandchildren. Our WONDERFUL nurse arranged the entire evening! We ate some food from Panera, chocolate cake for dessert, and my mom was able to hold the kids on her lap and sit with us.

Amazingly through all of this, my mom was more herself than she had been in months. She was chatty, smiling, and her sense of humor was back. It was good to see my mom again, and despite the bad news of the day, it was a good birthday.

The "C" Word

It was a long day. We got a call around 8:00 am asking my father to come by to sign off on some consents, so he left my house and went to the hospital early. I decided to wait a bit at home, and asked my father to call when the doctor arrived. Jeremy arrived at the hospital as early as he could get there - Jen and the girls were headed off on vacation, and Jeremy was due to leave for a trip to California, so he had planned to bring his dog down to leave at my parents' house while he was away. He stopped there first to leave the dog and pick up some clothing and medicine for Dad.

I arrived at the hospital around 9:30. We were initially told that Dr. Slotkin would be by to talk to us. We spent all day waiting - waiting for tests, waiting for doctors - just waiting. My mom was in the ICU, and no children were allowed there. Luckily, there was an ICU waiting room on the floor, and we were able to keep the baby there all day. Elliot came and went a few times with Micah, my friends Heather and Laurie came by for a few hours each to sit with the baby, and my parents' friends Gail and Steven and Suellen and Greg and Arleen and Lorin came by to sit with us. After a long day, no doctors showed up at all. Instead, we were told that Dr. Powers would be by in the morning to talk to us.

As the day progressed, I grew impatient. As is typical of me, I wanted information, and quickly, so I called my friend, Dr. Jennifer Berkeley, who is a neurologist. She trained at Hopkins and currently working at Sinai in Baltimore, and she was able to come by the hospital. We gave her permission to review mom's records, and she informed us that my mother's tumor was the worst possible tumor - likely a glioblastoma. She told us that the neurosurgeon would likely recommend de-bulking surgery to reduce the tumor, followed by radiation and chemo. She asked for permission to bring a copy of the scans to work in the morning and get a second opinion from her neurosurgery colleagues. She said that there was always a chance that the tumor would appear to be a glioblastoma, but could always be something more treatable, like Lymphoma CNS.

Needless to say, we were devastated, although we continued to hope that Dr. Powers would bring us other news in the morning.

Scary times

Today (well, Saturday) I called to check on my mom around 5:00 pm. My father answered the phone, and immediately I could tell something was wrong. Initially, my father insisted everything was fine, and handed the phone to my mother. I asked her how she was and why Dad sounded so off, and she informed me that she kept falling and cracking her head. Actually, she informed me with...irritation in her voice...that Dad kept "dropping" her and he gave her several large goose eggs on her head, and that he was annoyed because he couldn't go run any errands because he was worried she would hurt herself.

I offered to go over with the baby and sit with mom while my father ran out. I arrived around 4:45, and went upstairs to the bedroom to hang out with her. Shortly after I arrived, my mom needed to go to the bathroom, so I helped her up. I was amazed by how much she had deteriorated over the prior few days - she could barely stand and walk, and couldn't get to and from the bathroom (or balance on the toilet) without significant assistance. She kept leaning towards the left when she walked, and the way she moved her left arm looked...wrong. It was as if she kept missing her mark with her left arm. I was very worried that she wouldn't be able to safely stay at home before her neurology appointment on Thursday.

I spent the next few hours trying to convince my mother that she should go to the hospital. I called a friend of mine who is a neurologist and asked whether we should go to the ER, and she suggested that an earlier workup wouldn't hurt. Our friend Arleen stopped by to see the baby around 7:30 or 8, and together we convinced her that a trip to Suburban Hospital was the best option - to get a full workup and have all of the scans run before her appointment later in the week.

It took us about 1 1/2 hours to get her dressed and out to the car. Poor Maya - she was so upset and shrieking and screaming in her car seat while we took care of my mother. We arrived at the hospital around 10 and the ER staff would not allow me to bring the baby back. Luckily, my house was minutes away, so I ran home, nursed the baby, and left her with Elliot. I hoped that she would fall asleep and make it through the night (since she is unable to drink from a bottle).

They did a quick evaluation and ordered a CT scan to see if any of the falls had caused injury. Around 1:00 am, they came in to tell us that the CT scan showed swelling on the brain, indicative of a tumor. We were told we would meet with a neurosurgeon, and we specifically requested Dr. Powers.

Shortly thereafter, Keith, the PA for Dr. Powers, came by to do an evaluation. He explained that my mother had a tumor in her brain and the pressure and swelling had caused my mom to lose the vision in the left half of each of her eyes - a condition called hemianopsia. He said that, and the weakness on the left side of her body, likely caused my mom's balance issues. At that time, he indicated that the tumor could likely be malignant.

He put in orders for a CT scan with contrast to delineate the tumor and an MRI with contrast for the morning. I ran home at 3:00 am to get some food for all of us, and returned around 3:30. I met my mom and dad in my mom's ICU room, and my father and I stayed until 4:15 am. Because of the late hour, I brought my Dad home with me, and he spent the night on our couch.

Checkup Time

Today we took the kids to the doctor. Maya needed a weight check, and Micah was due for his 18 month checkup. It was a bit chaotic trying to coordinate the visit with two kids...naturally, the appointment was smack dab in the middle of Micah's nap time, and just as we were getting ready to walk out the door, Maya decided she was hungry. The car ride to the doctors was a bit of a challenge...Maya started to shriek bloody murder a little ways into the trip, and I felt awful. I knew she was hungry and wanted to be nursed, but there was nothing I could do to calm her down until we got there. Thankfully, it was only a 15 minute drive, but the poor little thing cried for most of the trip.

We arrived and were seen rather quickly. We saw a different doctor than we usually see (there are 5 doctors in the practice, and we really like 3 of them and usually see one of them, but this was the only appointment we could get). I had heard that this doctor is very pro-breastfeeding, but she can be very opinionated (well, really a hard-ass with a not-so-nice bedside manner), but I figured that was no reason to avoid her. I had one experience on the phone with her that left a bad taste in my mouth about a year ago, but Elliot had a good experience with her one time when Micah was sick.

She started off checking out Maya - who is doing great! She gained weight (she was about 6 lbs 6 ozs), so gaining weight exactly as she should. She took her measurements (Maya was in the 25th percentile for both height and weight) and looked her over and told us we did not need to return until she is 2 weeks old. I raised my concerns about breastfeeding and supply, and got the same speech I always get ("she is gaining weight so don't worry about it"). I wish I could be that confident...Micah was gaining weight, too, until he was 5 weeks old and outgrew my supply. I really hope things are different this time around. It does seem that my supply is more abundant than with Micah, but I have a hard time believing that it will all work out.

Then we moved on to Micah. Naturally, Micah was grumpy (since we woke him up early from his nap). He was also hungry since we were approaching snack time, and he has been out of sorts since the baby came home. He wanted something to eat/drink, and I went to offer him his milk...and the doctor snapped at me. She gave me a lecture about how I should not allow Micah to drink his milk on demand, and he should only be permitted to drink at meals, and she would not let me give him any milk while she was in the room. Micah was crying and misbehaving, and she basically told me he needed to learn a lesson and behave better. Needless to say, I was fairly irked at her.

She examined Micah, and we pointed out a rash that was popping up on his legs and belly. She asked if he had a fever the past week, and we said he had not. She said it could be a post-viral rash, but most post-viral rashes are preceded by a high fever. She checked his throat and said it was red, so she ran a strep test (since strep can also come with a rash). She told us not to worry about the rash at all and that it would likely go away. We also discussed the chronic congestion and coughing, and she suggested that we try Micah on Zyrtec for allergies (ironic...since all the other doctors insist children cannot have allergies until they are 2 years old). She also said that Micah might have a sinus infection and she took a nose culture. She suggested that if his congestion had not cleared up by Tuesday, to give her a call and she would put him on antibiotics. Now, for his stats...Micah weighed 22 lbs (7th percentile) and measured 33 inches (75th percentile).

We then started to discuss Micah's language development and eating habits. We talked about the foods he eats, and she again gave me a hard time about the choices I'm making. She kept mentioning obesity (hello...did you see that my son is in the 7th percentile for weight?) and gave me a very hard time about the fact that sometimes I let him eat graham crackers. She also made me feel horrible that he won't eat vegetables (unless I hide them) - she actually told me I should try exposing him to them (ummm...what does she think I've been doing?). She asked Micah a few questions (and, of course, he said "no" to all of them), and he would not perform his "tricks" on command (I said can you show us your belly? and he said no). I've been trying not to be so insulted about her comments...I think we work really hard to give Micah organic foods and make sure he eats healthy. He does not eat sugared snacks or drink any juice. He eats fruit three times per day, and we make sure he eats proteins and whole grains, and we do our best to sneak some veggies in there as often as we can. We make most of his food and try to keep him away from processed foods. We do not eat any fast food, and he has only had junk like french fries a few times in his life. If we give him things with sugar, it is homemade jelly, peanut butter, and the occasional graham cracker. He has had cake one time (on his first birthday) and ice cream twice.

After our discussion, it was time for Micah's vaccinations. What we thought was going to be a single vaccination turned into three...apparently, the prevnar vaccine just came out with a newer version that is broader in scope than the prior vaccination, so he needed one more booster (even though we thought he had completed the series). They could not find the record of his final H1B vaccination (although I KNOW he had it), but without proof from the doctor, he would not be allowed to go to school. The third vaccination was the only one we expected to be getting - the DTaP. Poor Micah cried through all three shots - he was a mess! He clung to me screaming "Mommy" - it was NOT a good day. Luckily, I got him calmed back down afterwards, but I felt terrible for my little boy. He had a really rough day!

So, all in all, a good appointment...but I think I'm not a huge fan of this doctor.

What's in a name?

Many of you have been asking about baby Twoey's name...and I am happy to report that we DO have a name for her! Before I announce her name, however, I thought I would drag you along for our naming saga.

I think I have mentioned before that it is Jewish tradition to name children after loved ones/family members who have died. Elliot and I decided that we would like to name our daughter after our beloved grandmothers...my grandmother, Berenice, who died in January, and his grandmother, Esther, who died many years ago. We also felt we could easily name after my other grandmother Belle (who died while I was pregnant with Micah) because her name also began with "B." So began our search for "B" and "E" names.

Another issue for us is that we were looking for "B" and "E" names that were either Biblical or had a Hebrew (or possibly Yiddish) origin. We quickly realized that the options for the letter "B" were quite limited...we identified the names Beyla (my grandmother, Belle's name in Yiddish), Batya, and Bari. We both disliked the name Batya. Elliot did not like the name Beyla (although it was very much growing on me) and I was a bit iffy about the name Bari (but it was rapidly growing on Elliot).

We then looked at E names...there were so many that I liked, but Eliana was by far my favorite. Elliot liked the name...but was concerned that it was too similar to his name...he did not want to be Ellie and Elliot (again, in Jewish tradition, naming after someone ALIVE is almost like wishing them dead...it is a superstition). I completely understood that, since the names really are quite identical and have the same exact Hebrew root.

So then we kept looking for more names. I also had a great aunt Hilda I loved like a grandmother, and her name began with an "H" so we considered "H" names...and we fell in love with the name Hannah. Unfortunately, we did not think it flowed well with our last name, so we were a bit hesitant about the name. Nevertheless, Hannah Beyla was a top contender for a name for me. We also looked at "I" and "A" names (because the Hebrew letter used for "E" is also the same letter used for "I" and "A" names). We came up with Alayna and Alana and Isabel. One of the things we liked about the name Isabel is that it contained Grandma Belle's name IN the name, so we could easily honor 2 grandmothers with one name. For a long time, Isabel was our top contender...we thought we could call her Izzy (or even Belle or Bella if she preferred). We were thinking Isabel Hannah could work perfectly as a name...but I was sad because I very much wanted to honor my grandmother, Berenice, and I felt the name did not accomplish that goal (and we previously honored Grandma Belle with Micah's middle name). Then, horror of horrors happened...okay, I'm being dramatic, but the Social Security list of top 100 names came out, and Isabella was ranked #1. That did it for me...I became very uncomfortable with choosing a name as popular as Isabel! I thought our daughter would be one of 50 Izzy/Isabel/Isabella/Bellas in her class if we selected that as her name. My name was extremely popular while I was growing up...and while I love my name, it was often a challenge being one of 4 or 5 Jessicas in a bunk or a classroom. I was never JUST Jessica - my name had to come with a last initial, or a nickname, or a descriptor. Because of my experience, it has been my preference NOT to pick an extremely popular name for my children.

Ironically, in all of this discussion, we actually agreed on a boy's name (that we did not need). Funny - we had such a hard time choosing a name for Micah - if we'd had a boy this time, we definitely would have named him Asher. But, I digress....

So, we went back to looking at Hannah...we did not like Hannah combined with Bari (it sounded too close to the Hanna Barbera cartoons), and we still did not like it with our last name. We thought about Bari Hannah, but I was still iffy about the name Bari. We tried on Bari Eliana, but Elliot was a bit unsure about Eliana. We discussed Hannah Beyla and Beyla Hannah and Beyla Eliana...but Elliot was resolute in his objection to the name Beyla (and since my grandmothers did not get along, I was not sure my grandmother Berenice would feel honored by naming my daughter after Grandma Belle).

In the back of my mind through ALL of this was the thought that I STILL loved the name Maya...the name we would have selected for Micah had he been a girl. I brought it up numerous times, but Elliot always pointed out that we did not plan to name after our "M" family members this time since we already did that. And yet...I just loved the name Maya more than anything else we discussed, even though the name Bari would most honor my grandmother.

When my water broke, we still had not settled on the name. On the way to the hospital, Elliot seemed to think we were choosing between Isabel Hannah or Hannah Isabel, and I said I was not really comfortable with either of those names. We discussed Bari again, and Beyla, and all of our other names. We even went off on a tangent with a few S names, but that muddied the waters. I brought up the name Maya again, and Elliot said he thought it was off the table. Labor then got too intense for me...and we did not discuss names again until after she was born.

For the next few days, we referred to her as either Twoey or Nona Me' (pronounced nonah-may...a play on No Name!). I was certain our fear/joke that the name Twoey would end up on her birth certificate because we couldn't agree on a name was about to become reality!

We were thinking about Isabel initially, but I just couldn't wrap my head around the name, and Hannah was not working for me as a first name. I kept thinking her name was Maya...or possibly Beyla. My mom was in love with the name Bari, but I was still a bit unsure of that as a name. I love unusual names...but was not sure if it was TOO unusual.

So, there we sat at the hospital...and every time someone asked us what her name was, we said "we don't know." We debated and debated, and we negotiated and negotiated...and we were not making any progress. By Saturday, we were still all over the place but Bari Eliana seemed to be the top contender, but I couldn't let go of the name Maya, and I was leaning towards Maya Bari. I could have been sold on Beyla Eliana, but Elliot was completely not open to the name. So, we decided to open up the names for discussion/input from some of our friends/family. Much to our surprise, people were evenly split between the name Maya and Bari. A few more people seemed to prefer the name Maya, but I was surprised by the number of people who really loved the name Bari.

Ultimately, we could not reach a final decision, so we decided to combine them and choose all three names...Maya Bari Eliana. We are currently calling her Maya, but we *may* still decide to drop Maya, or we may choose to call her Bari instead of Maya - we are sorting that out over the next few weeks.

So, there is our saga...and now I can officially welcome our new daughter, Maya Bari Eliana into the world!