It's the gift I am so grateful and blessed to have deep within me.
It's the reason we are Annabelle's parents.
Saturday was her most difficult day. She was so very tired with sudden mood swings and energy / lethargy spells. I was worried about what would happen next, my intuition told me something was about to happen (as I promised you all days ago it would!). We moved forward with our weekend plans and stayed in with the neighbors. We let all the kids run, play, laugh and make messes the best they could. They played, we held a glass and cheers to parenthood. All the kids slept so well Saturday night.. Annabelle slept a little too well.. she didn't wake until almost 9am Sunday. Annabelle is rarely up past 730a, at the latest. The morning went well but shortly after noon I could tell something was off again. She slept the entire afternoon.
Move forward to Monday. My heart was in my stomach as our nurse and I debriefed over the weekend and I explained what to expect behavior wise from Annabelle during the day. She promised to keep me updated and I headed to work on pins and needles. The day was perfect. (what?!) No issues what so ever, in fact, Annabelle was extremely full of energy, she played outside a ton, rode her bike, had an appetite and ran to me with a huge smile and happy. I was relieved the day went well - we headed home and moved about a Monday night, with a twist. It was daddy's birthday and Mady had dance class. Madelynne hitched a ride to dance class while the rest of us went out to dinner! Happy Birthday AK and papa (AK and his daddy share a birthday)!
Bedtime was uneventful and a delicious martini made much needed sleep easy, (for me, not Annabelle of course). Tuesday was a rush to get out the door on time. Madelynne was running late for school and Annabelle . . . . . she was in our bed. She had joined us around 430am moaning, crawled between AK and I, and watched TV as we began the day. She didn't want to get dressed.. she didn't want to eat, she didn't want juice, she just wanted to lay in mommy's bed. On the way to our nurses house, she cried until she fell asleep. My stomach sank once again. I kicked myself for being so naive thinking we were out of the woods just because of one good day. Every fiber in my body screamed "Take your baby home Ashley, turn this car around and snuggle her all day". Validating a gut instinct isn't always easy, and deadlines, meetings, work and payday can't wait - I dropped my pale little girl with heavy eyes off to her nurse and drove to work silent. And broken.
1230pm my phone rang and it was our nurse. I wanted to vomit when I read the number, I knew at that moment what was going on. She explained that Annabelle wasn't well. She had a fever, will not drink anything, won't move and then while I was on the phone I could hear her retching (trying to vomit, although she can't because her stomach & esophagus are sewn together).
I assured her I was on my way. Gathered my work things faster than I knew possible and ran out the door shaking from head to toe. The drive felt like an eternity but the breath of fresh air when I finally got to my baby girls side was worth the race. She looked terrible. She was so pale, lethargic, barely able to move her head around.. I was so nervous to move her. More than that, I was nervous her temperature would move further than from where it already was. The nurse and I talked for a short bit until I felt comfortable gathering Annabelle, our things and loaded into the car.
Every bump feels like a speed bump when you have an ill child in the back seat. Every moan she could manage, cut me even deeper that I even left her that morning. Annabelle never fell asleep.. she eventually stopped moaning and just stared off. I could call her name and talk to her occassionally, if I was lucky she would look her eyes into my direction - she mostly just looked off, with an open mouth and the saddest eyes.
Every bump feels like a speed bump when you have an ill child in the back seat. Every moan she could manage, cut me even deeper that I even left her that morning. Annabelle never fell asleep.. she eventually stopped moaning and just stared off. I could call her name and talk to her occassionally, if I was lucky she would look her eyes into my direction - she mostly just looked off, with an open mouth and the saddest eyes.
About a mile from our house she began to get very uncomfortable and nervous. She started crying and yelling "Mommy!Mommy help. Mommy!!!!!" I couldn't do anything but promise we would be home soon... then the seizure began. Let me just tell you, the horror and pain to watch your baby girl seizing in your back seat when you can't stop the car, or help her, is absolutely sickening to witness. We were so close to home, I didn't stop.
My eyes focused too heavily on her in the back seat than they did on the road, but we made it home safely. I pulled a limp, barely conscious, 30lb body out of the car to find she had lost control of her bowels during the seizure. The carseat, clothes etc were covered.. We made our way upstairs and I stripped her down in my bathroom. Her temperature was rising. 101.7. A quick bath and Tylenol, and we both laid in bed. I watched her little exhausted body as it took deep breaths and gentle exhales from dreamland. Lord, be with this baby girl - help her thru whatever battle she is fighting right now. We only have days left until we get help, please please help us make it there!
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Around 5pm her temperature was lingering around 100.4, I gave Motrin.
9pm her temp moved to 102.6. The fear that filled my mind was that I wouldn't be able to control her temperature at home. We had been alternating between Motrin and Tylenol and overlapping each all day without any success in bringing her temperature below 100.
As her temperature began to climb, her behavior became erratic. She was running around the house, laughing, hysterically laughing and playing, yelling at Mickey Mouse and teasing her sissy on a level that scared me to death. I would call her name and struggle to gain her attention.. I knew she wasn't consciously 'Annabelle' and something neurologically was going on. With a harder push of fluids, we decided she needed to get in bed, in her cool bedroom with the fan on and rest so the medication can begin to work and her body cool down. We laid in our own bed with heavy hearts, praying and fearing the worst for the evening.
Around 10:15pm, a heavy urge told me I needed to go check her temperature and see how she was doing. I yelled from Annabelle's bedroom to AK "Hunny! We have a problem! Run the bath water quick!!" She was hardly conscious even as I yelled her name and shook her around. I carried a limp, hot child to our bedroom and took her temperature several more times to be sure I was actually reading the thermometer correctly. To our disbelief, she was reading 105.8 degrees. My kid was cooking.
As the bath water ran and we undressed her from her diaper and shirt, I felt all over her body. My heart literally stopped when I got to her legs and feet - they felt like ice. The rest of her body, including her hands were burning hot but her calves and feet were cold to the touch and grey. They looked chalky grey and blue. I squeezed them and the color disappeared faster but didn't return. Gosh I wish I would have taken pictures now, but at the moment I could hardly breathe let alone think about anything past breaking the fever.
Annabelle couldn't walk, she could hardly hold her head. She wasn't in pain or complaining, she simply looked to the wall and never said a word. I carried her in the bathroom where she mumbled she wanted me in the tub with her. What do you say to a child when they have that request?! AK held Belle and I climbed in the cool tub (Ohhhh it was so chilly!) he handed me Annabelle and she didn't mumble a word. I thought for sure she would cry from the discomfort or cold water. She didn't say a thing. We poured water over her little back as she laid over my chest. We told her over and over how proud we were for being brave and repeated more times than I can count, 'you're doing so good Annabelle, it's almost over, tomorrow is a better day sweety."
During her bath she was able to mumble the words, "Mommy, sing a song?".. I racked my mind and couldn't think of anything appropriate. The only song that came to my mind was, "This girl is on fire!" haha. AK just shook his head and laughed to Annabelle, 'your mommy is nuts little girl'.
She smiled.
I exhaled.
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After the bath, her fever began to come down. Very slowly but at least it wasn't rising. Soon, she was asking to watch TV and start to talk to us again. Her feet and legs regained color and circulation. We reconnected her to the pump to continue pushing pedialyte and she laid in our bed until we felt comfortable putting her back into her own bed.
During the night we continued to overlap medications, change fluids and change her diaper. Annabelle is potty trained but either due to the amount of fluids she was on or an association with the fever, she wasn't able to hold her bladder during the night. Each time we were up with Annabelle, she needed to be changed. She slept like a rock, never really rolled over - she just laid on her back like an angel, absolutely exhausted from the fight it was taking her body to weather this storm.
The next day, her temperature remained around 99.1-99.5, that evening it stayed steady around 100. Today, she hasn't run a fever and she is back to her normal self.
I talked to our doctor and we discussed what happened. She wasn't surprised, nor was I. She shared my frustration that there really wasn't an explanation for what happened during the last 36 hours. THIS IS WHY WE NEED A DIAGNOSIS! HOW ARE WE SUPOSED TO PROTECT, CARE AND HELP THIS CHILD IF WE CAN'T EVEN EXPLAIN TO AN EMERGENCY ROOM DOCTOR WHAT IS WRONG?! Everyone keeps asking why I didn't take Annabelle to the hospital, my doctor and I discussed the entire scenario and she praised me for our decision, and agreed that a hospital would not have been able to provide any more safety for Annabelle than we were at home. (Heck, I'm certain she's safer under my care than ANY hospitals at this point!)
We talked for a long time over the phone and I explained my main concerns:
Our doctor explained specifically, the presentation of possible Raynaud's Phenomenon. She expressed multiple concerns that this could be the explanation of the circulation issue, but it's just so uncommon for toddlers to have Raynaud's Phenomenon. Regardless, everything we witnessed, documented and Annabelle experienced is just more validation that our trip in less than two weeks will be exactly what we need for answers. That being said, if this 'spell' begins again or we have any indication something in her body or neurologically is going to shift as it did this week; we have very strict instructions to get in the car and drive. Drive straight to the hospital we are visiting. Do not pass go, do not waste our time in a Virginia hospital. We are instructed to call our doctor and she will make contact with the hospital to inform them we are in route and need help ASAP.
At least now, we have a firm action plan. Let's just hope I can make the call in enough time that we can safely travel the day it will take to get to the hospital.
Annabelle's nurse has stayed by her side every day. She is our true angel here on earth, sent directly to Annabelle from heaven. She's been able to lay next to her and give her all the snuggles and love we can't while we are away. She's kept me updated on her vitals multiple times x day while I am at work. Her BP, heart rate, and temperatures have remained stable since the spell has ended.
Her appetite is slowly returning.
Her strength is very slowly returning.
I haven't noticed any concerns with circulation.
She has not had a BM since defecating due to the seizure.
She is still receiving extra fluids via pump between feeds but otherwise she is back to her normal self.
We're left exhausted, our heads spinning, heart racing, heart broken, worried and confused. This child is going to give us grey hair, well before we are ready!
.JPG)
My eyes focused too heavily on her in the back seat than they did on the road, but we made it home safely. I pulled a limp, barely conscious, 30lb body out of the car to find she had lost control of her bowels during the seizure. The carseat, clothes etc were covered.. We made our way upstairs and I stripped her down in my bathroom. Her temperature was rising. 101.7. A quick bath and Tylenol, and we both laid in bed. I watched her little exhausted body as it took deep breaths and gentle exhales from dreamland. Lord, be with this baby girl - help her thru whatever battle she is fighting right now. We only have days left until we get help, please please help us make it there!
Around 5pm her temperature was lingering around 100.4, I gave Motrin.
9pm her temp moved to 102.6. The fear that filled my mind was that I wouldn't be able to control her temperature at home. We had been alternating between Motrin and Tylenol and overlapping each all day without any success in bringing her temperature below 100.
As her temperature began to climb, her behavior became erratic. She was running around the house, laughing, hysterically laughing and playing, yelling at Mickey Mouse and teasing her sissy on a level that scared me to death. I would call her name and struggle to gain her attention.. I knew she wasn't consciously 'Annabelle' and something neurologically was going on. With a harder push of fluids, we decided she needed to get in bed, in her cool bedroom with the fan on and rest so the medication can begin to work and her body cool down. We laid in our own bed with heavy hearts, praying and fearing the worst for the evening.
As the bath water ran and we undressed her from her diaper and shirt, I felt all over her body. My heart literally stopped when I got to her legs and feet - they felt like ice. The rest of her body, including her hands were burning hot but her calves and feet were cold to the touch and grey. They looked chalky grey and blue. I squeezed them and the color disappeared faster but didn't return. Gosh I wish I would have taken pictures now, but at the moment I could hardly breathe let alone think about anything past breaking the fever.
Annabelle couldn't walk, she could hardly hold her head. She wasn't in pain or complaining, she simply looked to the wall and never said a word. I carried her in the bathroom where she mumbled she wanted me in the tub with her. What do you say to a child when they have that request?! AK held Belle and I climbed in the cool tub (Ohhhh it was so chilly!) he handed me Annabelle and she didn't mumble a word. I thought for sure she would cry from the discomfort or cold water. She didn't say a thing. We poured water over her little back as she laid over my chest. We told her over and over how proud we were for being brave and repeated more times than I can count, 'you're doing so good Annabelle, it's almost over, tomorrow is a better day sweety."
During her bath she was able to mumble the words, "Mommy, sing a song?".. I racked my mind and couldn't think of anything appropriate. The only song that came to my mind was, "This girl is on fire!" haha. AK just shook his head and laughed to Annabelle, 'your mommy is nuts little girl'.
She smiled.
I exhaled.
After the bath, her fever began to come down. Very slowly but at least it wasn't rising. Soon, she was asking to watch TV and start to talk to us again. Her feet and legs regained color and circulation. We reconnected her to the pump to continue pushing pedialyte and she laid in our bed until we felt comfortable putting her back into her own bed.
During the night we continued to overlap medications, change fluids and change her diaper. Annabelle is potty trained but either due to the amount of fluids she was on or an association with the fever, she wasn't able to hold her bladder during the night. Each time we were up with Annabelle, she needed to be changed. She slept like a rock, never really rolled over - she just laid on her back like an angel, absolutely exhausted from the fight it was taking her body to weather this storm.
The next day, her temperature remained around 99.1-99.5, that evening it stayed steady around 100. Today, she hasn't run a fever and she is back to her normal self.
I talked to our doctor and we discussed what happened. She wasn't surprised, nor was I. She shared my frustration that there really wasn't an explanation for what happened during the last 36 hours. THIS IS WHY WE NEED A DIAGNOSIS! HOW ARE WE SUPOSED TO PROTECT, CARE AND HELP THIS CHILD IF WE CAN'T EVEN EXPLAIN TO AN EMERGENCY ROOM DOCTOR WHAT IS WRONG?! Everyone keeps asking why I didn't take Annabelle to the hospital, my doctor and I discussed the entire scenario and she praised me for our decision, and agreed that a hospital would not have been able to provide any more safety for Annabelle than we were at home. (Heck, I'm certain she's safer under my care than ANY hospitals at this point!)
We talked for a long time over the phone and I explained my main concerns:
- Inability to control her fever, not to mention the temperature it reached
- Erratic behavior that we have never seen, between temperature shifts
- Circulation to her feet at the temperatures peak, also something new to Annabelle
Our doctor explained specifically, the presentation of possible Raynaud's Phenomenon. She expressed multiple concerns that this could be the explanation of the circulation issue, but it's just so uncommon for toddlers to have Raynaud's Phenomenon. Regardless, everything we witnessed, documented and Annabelle experienced is just more validation that our trip in less than two weeks will be exactly what we need for answers. That being said, if this 'spell' begins again or we have any indication something in her body or neurologically is going to shift as it did this week; we have very strict instructions to get in the car and drive. Drive straight to the hospital we are visiting. Do not pass go, do not waste our time in a Virginia hospital. We are instructed to call our doctor and she will make contact with the hospital to inform them we are in route and need help ASAP.
At least now, we have a firm action plan. Let's just hope I can make the call in enough time that we can safely travel the day it will take to get to the hospital.
Annabelle's nurse has stayed by her side every day. She is our true angel here on earth, sent directly to Annabelle from heaven. She's been able to lay next to her and give her all the snuggles and love we can't while we are away. She's kept me updated on her vitals multiple times x day while I am at work. Her BP, heart rate, and temperatures have remained stable since the spell has ended.
Her appetite is slowly returning.
Her strength is very slowly returning.
I haven't noticed any concerns with circulation.
She has not had a BM since defecating due to the seizure.
She is still receiving extra fluids via pump between feeds but otherwise she is back to her normal self.
We're left exhausted, our heads spinning, heart racing, heart broken, worried and confused. This child is going to give us grey hair, well before we are ready!
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