The last few weeks have felt like a massive roller coaster ride. As you know from a few of my previous posts, our latest grandchild had a tumor. The surgeons decided to wait until she was at around 36 weeks gestation before bringing her into the world using a cesarean section delivery.
We were keeping a close eye out for hydrops. That’s when the tumor enlarges and takes on more blood flow. This can kill the infant since its little heart can’t keep up with the flow demand. Oddly enough, there is this thing called mirror syndrome. The mom responds as the baby does, so the mother’s life is also in jeopardy.
Scans showed fast tumor growth and an overabundance of amniotic fluid. Definitely stressful for all involved.
On Thursday, a week before the scheduled delivery, I flew out to Utah to learn Avalon’s schedule and watch her while the parents went to the hospital.
The plan was for me to stop work on Tuesday evening, but I couldn’t concentrate well on work. My team lead suggested on Monday afternoon that I stop at that point. I took her up on the offer, which gave me two days to pack and wrap things up in MA. As I trudged through the airports with my duffle, I realized I totally spaced on packing my luggage with wheels.
The week went well. I enjoyed time with Avalon and Shiloh and my children. Each dr appt CJ and Lauren went to reassured us a bit more that things were going to be okay. By the morning of the surgery, we were feeling pretty relieved.
Lauren was nesting hard-core. I think we did enough laundry for six months of baby clothes. Here she is about to leave for the hospital:
And here she is about to go into surgery:
We didn’t hear from CJ and Lauren for a few hours. I was starting to panic when we got the call that all was well. The surgery got a bit hairy when Lauren started to overbleed. The surgeons still aren’t sure why, but she needed a transfusion after losing 3 liters of blood.
CJ watched the entire process and Lauren could see the surgeon tools and heard them trying to figure out the problem. A bit unnerving, but they got through it as a team.
I was home with Avalon who was supposed to be napping. She didn’t know where her parents were, but I saw on the monitor that she was definitely not sleeping and was very busy taking care of her doll. She diapered it, rocked it, fed it, etc. Adorable.
When I got the call from the parents, Avalon saw her sister live for the first time. Here she is talking with her parents and meeting Maeva (pronounced May-va):
Since Maeva was born almost a month early, we were concerned about her strength and immune system. Apparently that was not an issue. She was a healthy 7+ pounder without factoring in the tumor.
It took an extra day, but Lauren was finally able to greet her child and touch her. Maeva has a strong cry and already shows that she loves to have her head stroked.
Initially, Maeva found herself adorned with lots of tubes and monitors. They were preventative, though. Soon she was breathing on her own and ready for surgery. The surgeons removed the tumor, and the nurses started mentioning her coming home after three weeks instead of the projected four to six weeks after birth.
Lauren and CJ were able to go home after a few days. They continued driving into the hospital (close to an hour away) daily for visits with the baby. Then they headed home to be with Avalon. Lauren went back to work (from home and also a brief trip into the office) four days after the baby was born. She is so hard core.
Things seemed to be going along beautifully. Lauren and CJ were able to hold Maeva during visits. She has the cutest little pout.
The rest of the siblings and families and I celebrated by going to a really fun water park in Kamas.
We were amazed at how dark Maeva’s hair was initially. I remembered our blond CJ started life with dark hair, too, and shared this image with the kids. CJ is on the right, and Maeva is on the left.
The hair is now already lightening up, though.
All was well in our little world. We marveled at science. The surgeons did an amazing job with the stitches, and Maeva was getting stronger and didn’t seem too uncomfortable.
She has a really funny cry:
The hospital put a camera on her so those with access could view her 24/7. She was taken off the breathing tube and antibiotics but got a slight infection. They started another antibiotic run. No biggie.
Avalon enjoyed seeing videos of her baby sister:
We knew it would take about eight business days to get pathology reports on the tumor. I don’t think any of us really thought much about it. The tumor was gone, and only about 2.7 percent of this type of tumor are cancerous. And of those, they are more likely to be cancerous in a male than in a female. (More females than males have the tumor to begin with, but if they get the tumor, the males are more likely to have cancerous cells).
But then we found out that they found cancer. CJ and Lauren were told that the hospital would not do chemo. It really rocked our world.
We bonded as a family to deal with this devastation head-on. We researched, we hugged, we talked strategy, we made lists of questions for the oncologists, etc.
The next day CJ and Lauren were told that there were three possible outcomes:
- There was no cancer actually in the baby. (Optimal outcome).
- There were germ cells (this kind of cancer is a germ cell tumor or GCT), but they were not malignant. Those had the potential of showing as cancer in the future, but wasn’t there yet. (Another okay choice — not optimal, but deal-able).
- Cancer was all through the baby’s system, and there was no way to treat. (Definitely not optimal).
From the tumor findings and such, it seemed like we were leaning toward option 3. Not good at all.
We were told that the tests would be back the next week, but they must have rushed them. A week after birth, we found out that after scans and test results (all but one test had come back), they could find no cancer in her body.
There were still some cells that weren’t totally normal so we are in the Option 1 and Option 2 range. But so thankful it isn’t 3.
Maeva had her own innocent thoughts on all this cancer talk.
We will have to discuss language and manners in the future, but not gonna lie — I kind of agree with her sentiments here.
The abnormal cells they are seeing are considered cancerous so officially, Maeva does have cancer. But the medical team is researching treatment. And they should be able to target the cells at that point. The chemo treatments seem very effective according to research.
I know many people are praying for our family, and sending thoughts and best wishes. It means the world to me/us. The support felt is humbling and overwhelming. We are so blessed. Thank you for that.
This little girl has already shown what a fighter she is. She might even make it home from the NICU within two weeks of birth instead of the initially anticipated four to six weeks. As for now, she’s peacefully getting stronger day by day.
So there it is. The birth story of our third grandchild. Lauren coined her nickname.
Welcome to the world, magnificent (I added the magnificent part) Miraculous Maeva. We love you so much!