across the table
"At the age of 3, Lilly told her grandmother that her throat was closing up after eating at a Chinese restaurant. The epi pen was administered.“
"This was one of my favorite maternity sessions, simply because this Mama was so excited to capturing her pregnancy. Previous losses gave them gave them such gratitude for this growing baby in her belly and it showed in her eyes and in her smile."
"Creating sauce from fruit is so delicious and perfectly simple. It's the perfect way to welcome summer into our kitchens.
You can add it to ice cream, shortcake, pancakes, french toast, angel food cake, biscuits, oatmeal or just lick it directly off the spoon.
April 30, 2019
Sarah Jane has been a fussy little girl. Over Easter weekend she spent much of her weekend screaming and yelling and complaining an awful lot.
It was then that her pale skin was noticed by me and a few others. But we didn’t think much of it and we certainly blamed her sour mood on the GIANT MOLARS about to protrude from her gums.
Wednesday evening, a fever developed, no other symptoms except fatigue and fussiness. By Thursday, her fever became higher, I called the doctor’s office, we both agreed that her temp was a bit high to blame on molars but decided to wait until Friday to see if the fever subsided. (we both felt this was likely a virus. Once upon a time, Anna had a high fever for four days straight, no other symptoms, it was a virus.)
On Thursday evening, we found it difficult to bring her fever down, we would rotate between ibuprofen and Tylenol, sometimes her fever staying over 103. At one point, she was sitting on my lap, when I tried to sit her up, she just went back into me, seemingly unable to sit herself up. I called Friday morning, we scheduled an appointment for 11:45.
Friday morning, she stopped eating, she stopped napping, which is unlike her and was just generally very unhappy. We entered the office and she just cried while in the waiting room, only calm resting against my chest. She cried while being weighed and then just cried and cried.
The doctor came in and asked several questions and asked if she’s always this pale.
“No, she’s not.”
She checked her ears, they were clear. Her chest sounded good. Everything seemed fine except she was SO.PALE.
We did a flu test, just to rule it out and then the doctor talked to us about anemia and mentioned bone marrow and saying she would run blood tests if the flu test came back negative. In the meantime, we tried to get Sarah Jane to pee on a potty chair, just in case we needed to test her urine. (she never did, she fell asleep, diaperless, on my chest and lap.)
The doctor came in and said it wasn’t the flu. “I’m ordering these blood tests, you’ll need to go here (a location, very close) and get her blood drawn and we’ll get the results today and I’ll call you as soon as I know something.”
We got in the car. I held my breath as we drove over, we waited, chatted with nice people, she had her blood drawn. Once we got back in the car, something shifted in me, like a feeling that everything was so far out of my hands. That feeling that within a few hours, our lives could change and there’s nothing I can do about it. My mind went back to how crazy it was that I even got pregnant with Sarah Jane, I often wondered if God had some sort of plan with her because I still can’t believe I got pregnant with her.
We picked up lunch. We came home, laid Sarah Jane down for a much needed nap. I sat on the couch, ate my lunch, Eli and Clara came home from school. They ate some of my lunch. (that made me happy.) Eli disappeared and Adam and Clara went to clean her room.
My phone rang.
My mind couldn’t process that she already had the results. Something in me just knew…I just knew.
I don’t know how a doctor can make these calls. I truly believe they have such difficult jobs, dealing with precious children and mama bears and hospitals and insurance and logistics.
“her bone marrow isn’t producing red blood cells and we need to know why and she needs treatment right away, she is severely anemic. I’m going to make arrangements and you guys will need to pack up and head to the hospital.” She mentioned levels and problems and other test results and all I could think of what that I was the sole person receiving this information and I needed to translate to Adam and our families and OH MY GOD, NO. I can’t even think. What is happening?
“How serious is this?“
“It’s very serious. She needs to receive treatment right away. We need to figure out what is going on.“
“What kind of insurance do you have?“
“We don’t have insurance. Adam lost his job and she lost insurance on April 1, 2019.”
(didn’t see that one coming, did you?)
“Okay, I’ll call you back.“
I texted Adam, who was still upstairs with Clara. “Will you come here?”
He did. I told him what I knew which I feel like wasn’t much and I BROKE DOWN. Then Clara came down and came and hugged me, like the best hug in the world. I tried acting brave but pretty much failed but that’s okay because I’m fine with my children knowing that I’m human and that I get scared and I have big feelings.
She recommended I try thinking about something else…”that’s what I do,” she said She is such a wise little girl.
I called my mom. Broke down, fiercely. “What can we do?” (what a powerful, supportive, amazing question.)
I walked throughout my house, trying to pack. Pack what? For how long? Where is everything? Why am I so disorganized? Why didn’t I do Sarah Jane’s laundry? Why is my house a disaster? Why didn’t I call the doctor because she was so pale? Why don’t I have a real job, with real insurance? I just beat myself up. Round after round after round.
The doctor called back, just a few minutes later. She told us Riley’s was the hospital. She’s already spoken with the hematologist. They have a bed. We need to go to the ER there.
She called again.
Now let me say this…
For those of you, sitting at the doctor’s office with your little one, waiting for a check up, getting frustrated that your pediatrician is taking so long…
They’re not sitting somewhere trying to piss you off. They are literally doing everything to help a child and they’ll never tell you that and they’ll keep their cool for you…but the amount of time and care and love that was shown to us, it can not be measured. And I know this isn’t just for us, this happens all of the time.
So, the next time you’re upset that you’re little one’s nap time is getting delayed…that’s not a big deal. Just take a deep breath and say a prayer.
We talked to the kids (hard.) My parents arrived and we drove to Indianapolis.
I’m not going to get into the next few hours because it was a long, typical ER visit in a major US city. Sarah Jane was exhausted and hungry and had a full diaper, her fever was 101.9 and yet we just waited and waited and waited.
And while we waited…ambulance, ambulance, helicopter, ambulance, helicopter.
And that was sobering, for sure. But our girl needed help and it needed to be soon.
Finally, we received a room in the ER, we talked to soooo many nurses and doctors, she had a catheter, an IV, so many blood tests. At 3 in the morning, we had our room on the oncology/hematology floor.
She needed a blood transfusion, that began at 4:30am. Thankfully, she slept through much of it. (the transfusion lasts four hours)
Finally, the hematologist and her team of residents came in and talked to us at great length letting us know that they’ve ruled out cancer. That they believe this was caused by her diet.
About Sarah Jane’s diet…Sarah Jane is a very picky eater. She loves milk. She refused to drink anything but milk. She would eat bananas, clementines, breakfast bars, homemade protein balls, some cereals, bread, cheese, pretzels (rarely)…and that’s basically it. (oh and pouches)
After the transfusion, they did a blood test to check her levels. A few hours later, we learned they were good enough to go home.
Before we were out of the parking garage, Sarah Jane fell asleep, staying asleep almost the whole way home.
Sarah Jane will be doing iron therapy for the next 2-4 months. This is taking large doses of iron twice a day. Since returning home, she has developed a cold and just seems miserable. She’s not sleeping, barely eating but is drinking juice and not just milk. (juice is recommend to take with the iron.)
So, did Sarah Jane’s low hemoglobin cause a fever? No. The fever was coincidental…it truly was the reason we brought her into the doctor’s office. Without that fever, I’m not sure what would have happened, but I can tell you that I’ve never been so grateful for a fever in my entire life.
Today, she’s still not well. We visited our angel pediatrician. If she remains this fussy, we may retest her to see if there is some other cause for the anemia but for now, we wait, we pray and we try our very best to get a good night’s sleep.
I truly believe we have incredible care. I can not express how grateful I am for Dr. Mueller at Associated Peds for her thorough care on Friday. And then we have Dr. Campbell who has literally been an absolute Godsend, her support and care have gone above and beyond anything I could ever imagine.