Well, I'm going to try anyway.
Marissa Suzanne Herman was born on November 15, 2015, and right away, she was the easiest baby EVER! She was so good at going with the flow. She slept well, and she was SO happy ALL THE TIME. Marissa's doctor even joked that she read the handbook about being the 3rd child, and she knew that she had to be a cooperative baby. As I did with Adriana and Eric, I began taking pictures of her each week.
November 22, 2015 - 1 week old
I know I took this picture, but I don't know where it went. I'll keep looking...
November 29, 2015 - 2 weeks old
December 6, 2015 - 3 weeks old
December 13, 2015 - 4 weeks old (1 month)
December 20, 2015 - 5 weeks old
December 27, 2015 - 6 weeks old
January 3, 2016 - 7 weeks old
January 10, 2016 - 8 weeks old
January 17, 2016 - 9 weeks old (2 months)
January 24, 2016 - 10 weeks old
January 31, 2016 - 11 weeks old
February 7, 2016 - 12 weeks old
February 14, 2016 - 13 weeks old (3 months)
February 21, 2016 - 14 weeks old
February 28, 2016 - 15 weeks old
March 6, 2016 - 16 weeks old
March 13, 2016 - 17 weeks old (4 months)
March 20, 2016 - 18 weeks old
March 27, 2016 - 19 weeks old
April 3, 2016 - 20 weeks old
April 10, 2016 - 21 weeks old
Marissa was truly the happiest baby. Everywhere we went, someone commented on it. She smiled all of the time. Scott and I are in the process of having a house built. When we first met our salesman, he talked about how much he loved our baby. From then on, whenever we would see him, he would refer to Marissa as his favorite, and he would tell other people that he had never seen her unhappy.
And then something happened. Marissa got sick. Someone in our house was sick from March 12 until the end of May. When it hit Marissa, it started as what seemed to be a bad cold. Her pediatrician told me that it was a good thing I was nursing her because it was helping her to not get too sick. She said she had seen some horrible cases with babies this year.
I wanted to take Marissa's 22-week picture, but she wouldn't smile. She just felt too yucky. I couldn't imagine taking a picture of my smiley baby without her smiling. It just wouldn't be her. I thought I could just wait a day or so and she would be really happy again, and I would just take her picture a little late. That didn't happen. Days went by, and I couldn't get Marissa to smile. Days turned into weeks. I was so worried about Marissa feeling miserable that I lost track of time. The days became such a blur.
On May 15, my dad had a retirement party. I remember my dad commenting that Marissa felt very warm on the back of her neck. When I would take her temperature, though, it was normal. Still, I knew she wasn't quite herself.
Sometime during the week, Marissa started doing this weird thing where she would drop her head. One time, I was talking to Scott while I was holding Marissa. He was holding a knife because he was cutting some food. Marissa dropped her head and came within inches of hitting the knife. That scared us, but we just thought it was a weird trick she was trying out. On May 22, Scott was holding Marissa at a restaurant while we ate. She dropped her head and hit it on the table.
On May 25, the vomiting started. My mom gave Marissa the tiniest amount of Jell-O. She gagged, then she threw up EVERYTHING. This went on for days. For a little while, she threw up every time she ate anything. This got better. She stopped throwing up if she just nursed, but she continued to gag and throw up every time she ate the smallest bit of solid food. I looked up information online, and I found that some babies' digestive systems just aren't quite developed yet. The advice was to just try again in another week. Just to be safe, I also took Marissa to the doctor. The doctor decided that it was a virus, and it was weird that she wouldn't eat solid food, but it was a good sign that she was at least nursing again. She was still grumpy most of the time, which made me sad.
June 12 brought a new symptom. Marissa started doing this weird body movement. She would make a weird face and throw her head forward, almost like her body was folding in half. It was violent, and it looked like she was in pain. She would then scream. This would happen over and over for about 5 minutes.
I called the pediatrician. The nurse agreed it was weird, but didn't know what this could be. She said if it wasn't better by Wednesday, I should call back for an appointment. It wasn't better.
On Thursday, June 16, we went to the doctor. Of course, Marissa didn't have an episode for the doctor to see, and I didn't have a video, so the doctor had to go only by my description of what was happening. She thought that it was acid reflux, which Marissa had for a brief time as a newborn. She thought it sounded like she was trying to squeeze in her stomach because it hurt. I thought it was more of a pain in her head, but I trust our doctor's judgment. She prescribed Prilosec and said to call if it wasn't better by Monday.
Nothing improved over the weekend, so I called the doctor on Monday morning. Marissa was scheduled to have an upper GI on Wednesday. I didn't realize how bad this all was until I called to tell my mom that the upper GI was scheduled. I mentioned that Marissa was sad all the time. My mom said, "but she still smiles, right?" I thought about it, and I was so overcome with sadness as I said, "not much." My happy little baby wasn't happy anymore. I couldn't believe such happiness was gone, and I wanted it back! I wanted my sweet, smiley Marissa back!
Wednesday, June 22, was the day of the upper GI. Since Marissa won't take a bottle, they had to put a tube down her nose and into her stomach to get the barium in her stomach. They then used an X-ray machine to take pictures as the barium traveled through her. In between taking the X-rays, Marissa was allowed to rest. She either nursed or just wanted to be cuddled. She was miserable. At one point, as they were taking an X-ray, Marissa had an episode. I hated seeing her in pain, but I was so happy that we would know where the problem was. I told the X-ray tech that whatever part of the stomach the barium was going through right then, that's where the problem was. She said she would take it to the doctor right away. But, at the end of the upper GI, nothing showed up. Nothing was wrong with her digestive system. I was glad to hear that she was healthy in this area, but I was so sad that we didn't know what the problem was.
I called my mom on the way back home. She asked me what I thought it was, since we know now that it isn't her digestive system. I said that I really think it's something in her head. My mom said, "then you need to demand that they get her into a neurologist."
That night, after the kids were in bed, Scott and I sat on our phones all night, looking for answers. We would type in every symptom we could think of to try to figure out what was wrong with Marissa. Finally, Scott said, "it's like her stomach is spasming." So he typed in "baby muscle spasm." A few minutes later, he said, "I think I found it." He handed me his phone. At the top of the page, it said "Infantile Spasms." I read the description, and I knew he was right. It sounded exactly like Marissa. One of the things it mentioned was developmental delays. At this point, Marissa was 7 months old, and she wasn't rolling, sitting, or eating solid foods. I started reading things like, "my daughter is 2 1/2, and she doesn't walk or talk yet," and "my son still uses a feeding tube, but now he can roll over." I then read the worst statistic. In one study, 31% of the participants died by age 3. The treatment for Infantile Spasms was a drug called ACTH, and it suppresses the immune system. Babies would get sick from other illnesses, and since the immune system was suppressed, a simple illness would kill them. Fortunately, there was a new medication that could treat Infantile Spasms, but not all kids respond to it.
I called the pediatrician on Thursday morning. She said that Infantile Spasms were really rare, and Marissa doesn't fit the description of a typical child with the disorder. Still, she said she would trust my instinct and get her an appointment with a pediatric neurologist. She said she wanted to do blood work just to rule out anything else. I agreed to this. I took Marissa to get her blood drawn later Thursday morning. All of Marissa's blood work was normal.
On Friday morning, June 24, Marissa went to see her neurologist, Dr. Conrad. The appointment started with an EEG. After the EEG, we saw Dr. Conrad. Dr. Conrad confirmed what we already knew: Marissa has a seizure disorder called Infantile Spasms. At this point, I had a video of one of Marissa's episodes, and when Dr. Conrad saw it, she said that it definitely a spasm. The EEG also showed that Marissa has a hypsarrhythmia, an erratic brain pattern. Finally, Marissa has developmental delays. These are the three characteristics needed to diagnose Infantile Spasms.
I cried and cried. My poor little baby. We decided to put Marissa on the newer medication. She would take 4 mL of Sabril twice a day. This is a powder that I have to mix so Marissa can take it with a syringe. This medication would not suppress her immune system, but it can cause vision problems. Marissa will need to see a pediatric ophthalmologist regularly, so that if she starts to have problems with her vision, we can catch it right away. If she does start to have problems, she will stop taking Sabril in hopes that her vision won't get any worse.
Marissa started taking Sabril on June 28. On June 29, she woke up laughing! Then she started rolling over. This is her favorite thing to do now. She rolls like crazy! She pushes up with her arms and moves all around the room. She laughs and laughs as she goes.
Marissa ate baby cereal on June 30! She loved it, and ate all that I had made for her! We were going to see my parents that day, and we left later than planned because Marissa ate for so long. Everyone was thrilled that we were late!
After a week on Sabril, Marissa had another EEG. It showed that Marissa's hypsarrhythmia had improved, but it was not completely gone. The doctor increased the dose to 8 mL twice a day. Marissa absolutely HATES taking her medicine. She spits, cries, and thrashes around. But, she hasn't had a spasm since July 4, and that one was very minor. We have another EEG tomorrow (July 13) to make sure that the hypsarrhythmia is gone. Marissa also has her ophthalmologist appointment on July 18. Finally, she has an MRI on July 28. The MRI will tell us if there is a cause for the Infantile Spasms. The prognosis is better if there is no structural reason for the spasms, so our hope is that the MRI shows nothing.
Regardless of what the MRI shows, we are so thrilled with the progress so far. Our Marissa is back! Our happy, smiley, sweet girl is back with us. She laughs all of the time. She smiles at everyone she sees. She is so happy! Scott and I love watching her laugh and smile. It is so great to see her medicine working! We feel hopeful that Marissa will be fine. We know that she may have some struggles, but we feel like she's going to be happy, and that's what we want most for our little girl.
July 3, 2016 - 33 weeks
Since Marissa is happier now, I felt like it was time to get another picture of her.
July 10, 2016 - 34 weeks
I think it's going to be really important to keep up with Marissa's development, so I will be back to update her progress regularly.