A Diagnosis, But Not an Answer

Recently, we received the report from the Sudden Unexplained Death in Childhood (SUDC) Research Program on the cause of Natalie’s death and I wanted to share it with you. As you may recall, the original autopsy from 2007 listed the cause of death as “acute bronchitis and bronchiolitis.” This came after seven months of investigation that involved microscopic analysis of brain tissues, heart, and other vital organs. At the time, the Medical Examiner told us that her diagnosis came because there was nothing else wrong with Natalie. She said “I had to put something.” Needless to say, this hardly gave us much confidence in the diagnosis. When we googled bronchiolitis, we learned that it is an illness with a steady progression over a period of days to weeks before it becomes life threatening. This did not fit Natalie’s symptoms or her sudden death.

Now, after years of going through all of Natalie’s prenatal, pediatric, and post-mortem records, as well as a detailed family history and description of events leading up to her death, Dr. Krous, the head researcher for the SUDC Research Program, has shared his opinion with us. He wrote, “In the final analysis, none of Natalie’s pathologic findings are sufficiently severe, either singly or in combination, to be considered lethal. Therefore, based on the information available at this time, we consider Natalie’s cause of death to be SUDC.”

SUDC is a diagnosis of exclusion. It means they don’t know. There is no reason why Natalie, a happy, healthy little girl just stopped breathing and quietly died in her sleep. No reason. No reason.

On the one hand, it is reaffirming that my instinct at the time was that her illness (which seemed like a cold) was not severe enough to be lethal. Therefore, I didn’t miss something and there was nothing I could have done. It’s a start to putting my mind at ease.

However, it is also infuriating because we are left with nothing, no explanation, no answer for why our precious girl left us.

We are extremely grateful to the SUDC program for the time and effort they put into finding an answer for us. SUDC is rare, but we are not alone. I invite you to watch this video to learn more about it:

Since SIDS research spread the word about putting babies to sleep on their back and other simple safety measures parents can take, the SIDS rate has been cut in half. Perhaps one day, with the important work of Dr. Krous and the SUDC Program, the same will be true of SUDC. It won’t bring Natalie back, but it might help save another child and another family from having to endure the tragedy we have to live with every single day. (I’m never comfortable asking for money, but if you can, please consider sending a donation to the SUDC Research Program in Natalie’s memory. You can donate through their website. There, I did it.)

Christopher and I remain ever grateful for your love and support, especially in those first terrible months after we lost Natalie. It is hard to believe that we are now 4 1/2 years from that time. Much has changed in our lives — we now have sweet, little Gabriel, who is rapidly approaching the age Natalie was (he’ll be that age on December 28 this year), and our beautiful Roslyn is a 3rd grader and a wonderful big sister again. And much has stayed the same — we will never stop missing and longing for our Natalie Joy.

Five Birthdays

Last Friday, July 29th, was Natalie's birthday. She would have been 6 years old. This marked the fifth birthday we have had to endure without her. It seems incomprehensible that five birthdays have come and gone now without our beautiful little girl. I found her birthday extremely difficult to get through this year. Unlike years past, when the days leading up to the birthday were hardest and the day itself was relatively OK, this year was just really, really hard. I kept thinking how Natalie was born on a Friday and this year her birthday was on a Friday. Six years have come and gone since I gave birth to her in such a quick, joyous delivery that I actually giggled when she came out. Six years, my goodness.

My brother Bob was here visiting us this year and so he and Gabriel and I went blueberry picking to honor Natalie's birthday (Roslyn was at camp and Chris was working). We picked over 12 pounds of berries and enjoyed each and every one of them. Gabriel had fun reaching and grabbing them off the bushes from the backpack. It was an overcast day and perfect picking weather.

I wanted to make a cake for her birthday - blueberry cake, of course. I spent days searching the internet for a recipe and searched through what seemed like hundreds of them - cheesecake, pound cake, regular cake, this cake, that cake. I couldn't decide. I was frozen with indecision. It was like I was paralyzed. And so, I didn't make any cake. Grief manifests in different ways and for me, this year, that's how it came out. We ended up having fresh blueberries over ice cream. Chris helped me make peace with my indecision by reminding me that that's how Natalie liked them best - just plain, pop 'em in your mouth and enjoy. He is right. We lit six candles but did not sing "Happy Birthday." It is not a happy birthday when your Birthday Girl isn't here anymore. How can it be? Instead, we all had a moment of silence, a moment to remember, a moment to cry for our beloved Natalie Joy.

Today, now over a week later, I wanted to pick more berries to build up our winter's supply in the freezer. We went back to where we picked last week on Natalie's birthday, but they were closed - "all picked out," the sign said. I was so disappointed having driven all the way up there. Gabriel was getting antsy in the car. The only other place I could think of to go is Rocky Point, but that's in Warwick, quite a long drive from Franklin, MA, where we were. Then I noticed directions we'd printed out to Harmony Farms in Greenville, much closer and on our way home. So we drove there and I was amazed at the abundance and fabulousness of their blueberries. It was even better picking than last week! Clusters of huge, sweet, perfect blueberries. I let Gabriel out of the backpack and he had a blast roaming up and down the rows of bushes, picking his fill, falling down, getting back up, being the amazing little boy he is. And, Roslyn was my wonderful helper, my big girl. We had a good time. Harmony Farms, we'll be back!

Happy Birthday Gabriel

Gabriel turned 1 on Tuesday, May 10. I woke up feeling giddy. Just so happy he is here with us (still) and that he made it to his first birthday. He is such a happy boy. We celebrated just us four with one of Gabriel's favorite dinners - cauliflower, edamame, kale, and macaroni casserole (basically it's a healthy mac & cheese, light on the cheese). He ate voraciously and hummed as he did. I made a really wonderful dark chocolate cake with a homemade vanilla custard and a light chocolate glaze on top. He loved it -- especially squeezing it through his hands and making a mess he can be proud of.

As Gabriel gets older, there are more and more triggers of my memories of Natalie. He is like her in so many ways. They have the same sweet temperament. He is so easy-going. He loves pulling the books and videos off the shelf and dumping them on the floor. And you can't deny he looks so much like her. At other times he looks so much like Roslyn, too.

Happy Birthday my beautiful boy! Mommy loves you so much!

Relief

It was a long night last night. Gabriel's Angelcare monitor went off for the first time (we've only had it for a few days). Thankfully, the Snuza monitor didn't go off, which means Gabriel did not stop breathing; he had just scooched himself to the far end of the crib. Nevertheless, it was enough to cause Chris and I to worry as we futzed with the equipment at 3:28 in the morning. I don't think either of us got much sleep.

But what relief to wake up this morning and hear that "tic" sound on the monitor, which signals there is movement - Gabriel is still breathing. Oh, thank goodness! We made it through this first anniversary with Gabriel and he is OK. It may seem silly to think something bad would happen on this day again, but nobody ever said grief was rational.

Now, I'm heading out to sit in Natalie's garden while the sun is still shining there. Maybe even clear out some old dead leaves and stuff. I miss my baby girl.

Heading now into our fifth year without my precious girl.

Grief x2

Tomorrow will be four years since my beloved daughter passed away. The pain, when I have the strength to really let myself feel it, is still so intense and raw. I have gotten better with four years of practice at pushing it to the back when I just don't have the energy. It's always there, but I have more control over when I let it out.

This year, I have the added pain of losing my mother. It is like grief x 2. Double the grief. These days, I ooze grief. Here's my mom holding Natalie in January 2007, shortly before Natalie died. My mom was the last one in our extended family to see Natalie. She made the long trip from Las Vegas many, many times to visit us and be with her granddaughters, who she loved so much.

My mom was always such a loving support to me, especially after Natalie died. She would always call, and later she would email me pictures of the little arrangements she made with candles and little jizo dolls from Japan. They were so sweet and touching. My mom felt the pain of losing her granddaugter so much. She said she wished it had been her instead. She said that's how it should have been. She is right. Natalie's early death was not the natural order of things. Now, sadly, my mom has passed, too. And now I feel more alone with my grief than I ever have. I miss you, Mommy. And my precious baby girl, you are forever in my heart. I love you, and I miss you so much, sweet Natalie.

More About Gabriel

Now, I'd like to tell you more about my spectacular little boy. I am mad at myself for letting so much time slip by, but, if you read my other post, it was a rough year. I let a lot of things slide. One thing I did not let slide, however, was taking the time each and every day to enjoy my little Gabriel. From the moment he was born, I have done my best to live in the NOW, not in the past and not for the future. Gabriel has been a joy every day. He has such an easy-going personality. I am ever grateful for this because I don't know if I'd have the stamina to handle a difficult baby at my ripe old age. Gabriel was a great sleeper for his first four months, averaging one wake-up per night, which usually required a feeding and then back to sleep. Somewhere around the four-month mark (this coincided with my mom's arrival to Providence), he started waking up more and more. Now I don't even bother to keep track or check the time. I just roll over, feed him, pick him up and snuggle him, or do whatever it takes to get him back to sleep. Usually it's pretty easy and I find I'm not as tired as I would have expected given the frequency. Maybe I'm just adapting.

In his first several months, Gabriel was growing and gaining weight so fast, he was off the charts. By his 2-month checkup, he weighed over 16 lbs! Of course, he was big from birth, but he was gaining about 1 lb. per week for awhile there. I was starting to worry he'd be bigger than me by his first birthday. Fortunately, he slowed down and now he's still in the 90th percentile for weight and off the charts for length (maybe he gets the tall genes from my mom's side of the family... time will tell). We'll find out how he's doing at his next checkup (9 month) on Feb. 9.

Gabriel is smiley and has the best giggle. He loves his big sister and wiggles with excitement whenever she's around. He loves Cheerios, something he can now easily feed himself, and is slowly getting on board with other foods. Yo Baby peach yogurt is a special favorite. He is the pickiest eater of my three babies, which is interesting to me. They are all different. Like Natalie, Gabriel is quite a drooler and has been seen sporting the "diaper bib" that many people used to think so funny when Natalie wore hers. Hey, it works better than replacing cold, wet, soggy bibs every 10 minutes.

A Major Scare
Shortly after Gabriel was born, we bought a little device called a Snuza. It's a tiny little movement monitor that clips onto his diaper and rests against his belly to monitor his breathing. It it goes for 20 seconds without any movement, it sounds an alarm. Shortly after Thanksgiving, I had put Gabriel down for a nap in his crib. (He sleeps with me at night, but we were encouraging napping in the crib now that he is more mobile to keep him safe.) Because he could roll over from his back to his belly, I was checking him frequently throughout the nap. I had found him completely face down on the mattress a couple of times, and turned him over so he could breathe easier. About two hours into the nap, I was just starting dinner and heard the Snuza alarm go off through the regular sound monitor in the room. I bolted up the stairs, and found Gabriel completely face down in his crib. I immediately scooped him up and shook him to wake him up. A couple seconds went by and then he opened his eyes. I am fairly certain that he had stopped breathing and that little Snuza and my quick reaction may have saved his life. I don't even want to think about it. Suffice it to say, I was freaking out. I called the pediatrician and they have arranged for Gabriel to see a sleep specialist. The appointment was originally scheduled for last week, but we had a big snowstorm and it was cancelled. Now, we wait until Feb. 2 to meet with this doctor and see if there's anything we can do to figure out why little Gabriel may have stopped breathing. Is there a neurological malfunction in his brain that caused him to not turn his head so he could breathe? Why does he tend to sleep completely face down? Is there any possible connection that could explain why Natalie died? Is it a genetic problem our children have?? These are all questions we hope to get answers for. In the meantime, it's been stressful for me and Chris whenever Gabriel is asleep. Increasingly, he wants to roll over and sleep on his belly. At night, I cannot let him do this and often end up wrestling with him, both of us sleepy, to keep him on his back or at least slightly cocked to the side. For naps, we no longer use the crib, but strap him into a little recliner chair so he can't roll over. He doesn't like it sometimes, but that's the way it must be for now. Oh, when will the universe give us a break!!??

Here are pictures of our little Gabe, the cutest little guy in the world!

A sad goodbye

2010 turned out to be a very difficult year. Aside from the joy of welcoming baby Gabriel to our family in May and Roslyn's general wonderfulness, it was a rough year. Two weeks after Gabriel's birth, my mom had to be rushed to the hospital after becoming so dehydrated from a bad bout of diarrhea and vomiting that she almost died. She recovered, but unfortunately, the experience left her mobility greatly impaired. This, on top of being diagnosed with Parkinson's in April, was not good. My brother spent the summer with my mom at her home in Las Vegas (no, I'm not from there... she moved there from Michigan, where I grew up, in 1997), and together we made her realize that she could no longer live alone. She had to come to Providence, which is something Chris and I had been trying to convince her to do for years. She arrived in mid-August following some other medical issues that required further testing once she got here. She had her tests and by mid-September, she and I were sitting in the office of the chief oncologist at The Miriam Hospital listening to the unbelievable diagnosis: "You have a large malignant mass on your duodenum... prognosis is 5-7 months. Surgery is not an option because it has spread to the liver and other organs... Chemotherapy is not likely to be helpful, but is an option for you..." My mom and I have a good cry. She decided to go ahead with the chemo... she felt to do otherwise would be giving up. She needed to fight it as best she could. Sadly, the doctor's prognosis of 5-7 months became a reality of 5-7 weeks and my mom passed away on October 23. My brother was able to return from Korea, where he lives, to be with her and we were both by her side when she took her last breath. Another traumatic experience that haunts me. And another grief I must bear. Rest in peace, beloved mother.