She did wonderful, only getting upset from her lack of liquids and food the last hour we waited before her sedation.
When they did her blood work, it showed that she had low calcium and sodium levels- both signs of dehydration.
Previous blood work showed her electrolytes at a good level- because she was given as much as she wanted to drink at all times.
This is one of the dangers of diabetes insipidus. Without something to drink, she will dehydrate faster than anyone would expect, due to her body's inability to conserve water.
They had her hooked up to IV fluids during the MRI, and she was actually in a really good mood after waking up. She usually is so happy and sweet when she's properly hydrated.
I've been thinking about Mommy instincts lately.
So often, when a mother has a concern about a child, she's given a lot of advice, either through friends, the internet, coworkers, or family members. They are all well-meaning, but I sometimes find it very disturbing how often mothers are told to ignore their gut reactions when it comes to their kids.
I can give a million examples from my journey with Evan how going with my gut reaction has benefitted him.
But for the purposes of this blog post, I'm going to use Kayla, because I feel the need to emphasize the fact that she was born with no complications, had a dozen perfectly fine well baby checkups, and has always been within the range of "normal" in her development. I feel she is a better example because OF COURSE Evan was going to have medical issues related to his Omphalocele. We knew that, and were prepared.
"Go with your gut" is often the best advice I hear for mothers with questions on our support group for Omphalocele babies.
I feel it is far less likely to be said to mothers of children with no known medical issues.
When I started feeling concern for Kayla's excessive thirst, I started googling.
"Excessive thirst toddler".
It was the first step prior to seeing her doctor. I wanted to see if there could be any simple answer out there, and as a veteran medical condition googler, I knew I would be reading a lot of unhelpful advice posted on message boards.
The ones that stuck with me (in a bad way) were the comments from other mothers advising one another : "of course your kid drinks a lot, you offer the cup to them, they're going to drink. You should limit how much you offer." Or this gem: "Don't give in to your child's demands, they're just wanting to delay bedtime (or whatever, there were several supposed reasons)".
All advice for children under the age of 3.
I found that very disturbing.
Now, I'm all for sharing experiences and advice. But I whole-heartedly believe that it should be followed by the caveat- "all children are different. What worked for me may not work for you. Go with your gut."
One of the questions the kidney doctor asked me was - "have you ever limited her liquids?"
My reply?
"Yes, but only for a short time. It never felt right."
Let me elaborate.
I limited her liquids for about an hour. I already knew from experience how upset she got every time her sippy cup was empty and she went to get a drink.
I felt, for lack of a better phrase, in my gut that her reaction was not normal, and that limiting her liquids was not the right thing to do.
I am a big fan of Dr. Sears and his (and his wife's) books on attachment parenting. I read all the advice when Evan was in the hospital. Using many of the techniques outlined (sometimes modified due to our unique situation) I formed a bond with Evan that helped me to understand him and his needs. While he was connected to tube and machines, I held him, I watched him, I became intimately familiar with his behaviors and I connected with him. I understood his needs, and it benefitted us both.
I believe that practicing attachment parenting helped Evan through the hardest bumps.
So when I had Kayla- I held her. I nursed her. I listened to her needs. I developed that "mommy gut feeling" that tells us when our babies need something from us.
The signs can be small, almost imperceptible.
Kayla needed to drink. She ate well, but still drank enormous amounts. Why should I limit her liquids? It wasn't hurting her. I gave her water mixed with juice to prevent her from drinking too much water (it can happen). I rotated the types of juice and added pediasure, milk, and just gave her liquids at all times.
It was easier than trying to fight it.
Sometimes, when something is "easier" because it keeps your kid happy, it really is the best path to take.
Diabetes insipidus is the diagnosis- cause unknown at this moment. It is most likely a problem with her pituitary gland. This includes the possibility of a pituitary tumor.
There, I said it.
I didn't want to, because it's a scary thing to say.
However, I should be hearing from the doctor about the MRI results this week.
Hopefully today.
Waiting sucks.
