As I stated in an earlier blog entry, we found out that I was pregnant with our second child in late February and weeks later, Atia was diagnosed with leukemia. So there I was in the middle of my first trimester, facing the biggest crisis of my life.
Truth be told, the excitement and joy of being pregnant quickly faded into the background. Atia's health was my number one priority. I was so consumed with her illness and managing my own fear and grief that I had a hard time eating and sleeping. At times, I even forgot I was pregnant - such a complete 180 degree difference from my pregnancy with Atia.
Being pregnant created some complications when dealing with Atia's treatment. Because she was receiving chemo and chemo is released through excretion (urine, stool or vomit), I was advised NOT to change Atia's diapers or clean her up after vomiting. If I absolutely HAD to, then I was to wear gloves (doubled up, two sets) to create a barrier. Then, while washing my hands afterward, I was to scrub with a vengeance. Chemo exposure while pregnant can be damaging.
The first day that Atia received chemo and was violently ill, I was unable to comfort her. I couldn't run to her, pick her up, cradle her in my arms and stroke her hair while reassuring her that everything was going to be OK. I had to stay on the other side of the hospital room while my husband and various nurses cleaned her up - it was an indescribable experience for me laden with guilt, anger and overwhelming despair. It wasn't fair - I'M her mother, I should have been the one cleaning her up and comforting her. I WANTED to be the one, but I couldn't.
I had been banned from diaper changing duties. It was an almost ridiculous concept. Though I was able to adhere to those rules while in the hospital, when I got home I didn't have the luxury of a team of little helpers that appear when I pressed the "call button."
During the first few months of Atia's treatment, I struggled to "fit in" visits to my OB/GYN. I ended up missing and rescheduling a few (something I NEVER did during my first pregnancy).
Due to my stress and disinterest in eating, I lost several pounds during my first trimester. Luckily, the baby wasn't affected by things outside of my belly. It was pulling all the nutrients it required to grow and thrive from me.
In late April, we had our 1st trimester screening - the one most commonly know for Down syndrome testing. I had my blood drawn and never thought anything more about it. On May 12th, 2009 (less than a month after Atia was diagnosed), I receive a letter stating that I tested positive for some type of dormant gene, but it had nothing to do with Down syndrome.
I was so confused. What the heck?!? Hadn't I had taken this same test when I was pregnant with Atia and nothing had come back abnormal. Yes, yes! I HAD taken this test before.
I called my OB/GYN's office and asked for an explanation. I was told that back in 2007, when I was pregnant with Atia, the test only screened for a few genes. Now, the test screens for 254 of them.
So, OK, fine, I tested positive for something (which I still didn't understand), but what did it mean? Well, the recommendation was that Steve be tested for the same 254 genes. If the results showed that he too had dormant genes then they had to be compared to mine to identify whether this posed a mild, moderate or severe risk.
Once again, I was scared. The same question kept repeating over and over again in my head: "Could there be an issue with THIS baby too?"
Steve had his blood drawn and we received the results on June 9th, 2009. NEGATIVE. He tested negative for any recessive genes. Phew!
We chalked that experience up to being an unnecessary distraction that redirected our attention away from what really mattered - Atia's illness and treatment. Though there may be value in knowing whether or not your baby is facing a "biological crisis" (my doctor's words), there is a price to pay - extreme emotional distress.
As we continued to fight Atia's leukemia, the pregnancy once again became little more than white noise. I was certainly growing and experiencing typical discomforts here and there, but I didn't have the luxury, time or energy to pay much attention.
On our 20th week, we had the standard comprehensive ultrasound - the one where you find out the gender. It was a BOY! We had guessed it was. This pregnancy felt so much different than Atia's, including the way I was "wearing the pregnancy" (my growth was mostly contained to the belly area, as opposed to the last pregnancy where I grew EVERYWHERE).
As we were happily chatting during the ultrasound, I noticed that the technician seemed to be taking her time scanning and scanning and scanning. Finally she said, "Do you see this?" She was pointing to an image on the screen that we couldn't make out. She explained that we were looking at the baby's brain and what she was pointing at was a suspicious growth. Then, she moved the ultrasound paddle just a bit and said, "And here's another one." She had identified two bilateral choroid plexus cysts. Not one, but TWO!
My OB/GYN explained that this finding was not completely abnormal, but needed to be taken seriously because it could be a "soft marker" for a more severe issue. She arranged an appointment with the Maternal-Fetal Medicine group at Northwestern Memorial Hospital, which specializes in high-risk pregnancy. Two days later, there we were having a level 2 ultrasound performed. It was terrifying.
Again, so many thoughts swirled through my mind. Under our current circumstances, could we handle another child with a medical condition and special needs? Was this issue severe enough that the baby may not survive the pregnancy or very long thereafter?
Because we had no one to watch her, Atia was with us. The ultrasound was long and thorough. Steve and I held our breath the entire time. We couldn't believe that we were sitting there having this done while our very sick daughter with leukemia lay curled up on Steve's lap. The stress of the situation, on top of Atia's recent leukemia diagnosis, was unbearable. Steve and I felt like throwing our hands in the air and giving up. We felt cursed!
The technician didn't say much. The silence increased our anxiety and fear. Finally, at the end of the exam she said, "I can't tell you much, because I'm just the technician and the doctor needs to be the one to give you the final diagnosis after his examination, but... I didn't see anything." Steve and I exhaled... RELIEF!
The specialist came in, performed a quick ultrasound exam and reiterated what the technician had said. The official report stated, "No bilateral choroid plexus cysts were noted." He went on to explain that these types of cysts are common in pregnancy. Most of the time they are undetcted and simply dissolve on their own. Had we had our 20 week ultrasound appointment THAT day, instead of two days previous, nothing would have appeared and we wouldn't have been in his examination room.
We had survived another scare and were thankful. The specialist wrapped up the exam and said, "As far as I'm concerned, you have a perfectly healthy baby boy growing. I wish you the best... and don't worry about this anymore." So, we didn't.
We also didn't tell many people about it. Everyone was already so distraught over Atia's situation that it just seemed like too much to share. Plus, the issue resolved itself.
So, Steve and I kept it to ourselves in an effort to shield our friends and family from any additional "scares" from the Lutarewych family.