Saturday, August 8, 2009

Our 11th Anniversary...Woo...Hoo... :(

So many. So many babies being diagnosed. It is breaking my heart. It’s hard enough to have a child diagnosed, but a baby with Type 1 is just a different world. They cannot communicate to you and tell you how they feel. They can be incredibly hungry from a low and all they can do is cry. They can have an awful headache from a high, and all they can do is cry. It is sometimes such an impossible situation.

I was there. 11 years ago today J was diagnosed at the tender age of 8 months. The helicopter took him away and my husband and I followed it in the car to the hospital. When we finally got there he was laying in a hospital bed, swallowed up by the enormity of it all. He was wide awake when I walked into his private ICU room. He looked at me and said his first word, Mama… his little voice cracking from dryness. We met with the endocrinologist on call and he gave us our first lesson on diabetes. He said, “Having a baby with diabetes is like asking you to run a marathon you haven’t trained for…uphill.” But in the same breath, he promised us the world. He said there would probably be a cure in 5-10 years, that J would lead a normal life, and that we would leave the hospital EXPERTS on diabetes with complete instructions on how to care for J. The catch was, after this on call endo left, another endo never came calling, and this hospital had dealt very little with type 1, much less a baby.

We were put in the hands of a nutritionist who knew diabetes mostly from a Type 2 perspective. For the purpose of this post, I’ll call her Wacko. She immediately commanded me to give J half of the formula I was feeding him at the time, and more meat. Lots of jars of plain meat. HELLO! J hated meat jars of baby food. (Don’t all babies?) She forbade me to feed him fruit jars and said vegetables were fine, as long as he had a shot after each jar. The woman really was a wacko. You can’t tell a baby, “Hey honey, you are going to eat half as much as you were before, and meat galore!” I think it is a good time to note as well that J, because of the ketoacidosis, was about 15 pounds when first brought in. The last thing he needed was less formula. To top it off, Wacko the Nutritionist actually yelled at me twice. Once because she came in and J had only eaten half of his jar of meat. (The kid was gagging for goodness sake!) And another time because I was feeding him his formula a half an hour earlier then she had scheduled. (Reality check, babies make their own schedules.)
Unfortunately, our only education was a book Wacko gave me. She said I couldn’t leave the hospital until I read the first 7 chapters and that there would be a test. (Liar! She never even looked to see if I opened the book.) J was there about a week and then they just sent us home. No sliding scale and absolutely no idea what we were doing. I asked the nurse how we were supposed to know how much insulin to give him and she said, “Call your pediatrician.” Our one saving grace was the social worker. She pulled us aside before we left and confided in us she was just filling in here and that UCSF was much better equipped to help us with J. She promised to try to get approval from our insurance to move us there. One week of 5 phone calls a day to J’s pediatrician, and Ryan and I were about to lose it. My sweet pediatrician was Indian with a very thick accent. It was so hard to understand what he was saying and he freely admitted to us that he was guessing and we needed a specialist. Then the call came, UCSF was approved, and our life changed…for the better.

They said, “Forget everything they have told you. Your baby eats what he wants, when he wants, and we will make the insulin work around that.AHHH, nirvana! They had a full diabetic friendly team at our beckon call, and they had worked with a few other babies before. They immediately changed both the long and the short acting insulin and we left that office on a high from relief.

What is the moral of the story? It is okay to go endo shopping. It is okay to look around and find someone who you trust. Yes, 11 years ago our new endo fell into our laps and that was nothing less than a miracle. One of the biggest lessons I have learned over the last 11 years is we need to fight for what is best for our children. You are not stuck with what you are given. And if your doctor says something you are not sure about, it is ok to speak up and say, “Whoa! Why are you doing this? Why is this change being made?” My endo freely admits that I know what is going on better than she, and before she makes changes she asks me what I think. Yes, she knows more than I do, but I am included. If I think a change needs to be made, and she doesn’t, she EXPLAINS why. If you do not have a voice… talk to your doctors and tell them how you feel. If that doesn’t work, go shopping for a new one.

You will meet many doctors, regular doctors and specialists, that have no idea what to do with your child. Speak up. When your child is in the ER with an ear infection and they want to take away your insulin control of your child, and you don’t want them to, don’t let them! They have NO IDEA! I will check my child’s sugar; I will give him his insulin. I have taught many nurses in my day how to use a glucometer. Case and point: J had the stomach flu when he was 3 and ended up in the ER because he couldn’t keep anything down. He needed fluid through an IV. When he was admitted I told them, “He needs insulin now, he has ketones.” They told me, he didn’t need insulin, only fluids. They said the fluids will dilute the sugar and he’ll be fine. I put my foot down, “Uh, no, he needs fluids and insulin.” They came back with a syringe with 10 units of insulin in it, the nurse was just about to give it to him when I jumped up and said, “What is in that syringe?” When she told me they almost had to call security. J had never had more than 3 units of insulin in his life. They finally got hold of my endo and were told, step back, you hydrate him and Mom will take care of the diabetes.

Okay, disclaimer. Yes, listen to your doctor, but if another doctor wants to take over, make sure they talk to your endo first. I am not advocating doing your own thing no matter what the doc says… I am advocating communication. And of course, don’t quit an endo until you have interviewed and found someone better qualified and who has agreed to take you on.

As mothers of diabetics we need to take ownership of the fact that we live and breathe these children’s insulin and carb intakes. We can’t let anyone take us out of the picture.

I don’t know where this is all coming from, but I just feel like it had to be said. God bless all of you mothers, with Type 1 babies, and with Type 1 children. It’s not easy, but with each day we grow stronger. I used to hate it when people would say how strong I am, but you know what…I am strong, I am surviving, and I am stronger today than I was 11 years ago.

I don’t know how this soap box suddenly appeared, but I am stepping off now.

Does anyone know of a support group for people who don’t know how to write short posts?


  1. Amen to everything you wrote here... such important information for Mommas of type 1 babies. I've had to stand up for Elise a few times to the CDEs (the actual doc is great), and now they finally realize that I know better how to treat my baby than they do.

    And keep on writing those longs posts, you have too much wisdom to share with the rest of us to make them shorter.

  2. There have been so many improvements since J was diagnosed. I wish there was a cure, but there isn't...yet! I love you guys!

  3. God bless your journey...and thank GOD He placed in the hands of a new endo team!

  4. Wow, I can't imagine having to manage a type 1 BABY. You are STRONG and AMAZING. Your experience keeps leading me back to your blog, and I always agree with everything you have to say!

    Thank goodness for a new Endo back then....I can only imagine.....

  5. Step up on that soap box any ol' time, girl - it's a story that needs to be broadcast loud and clear! I'm shocked by how many stories I've heard in the last 4 years of HORRRRRRIBLE endos/nutritionists/CDEs and such, and it makes me ever more thankful for the wonderful ones we get to deal with. (Your story also makes me ever so thankful that my DD was 8 years at diagnosis, not 8 months - YIKES)
    I wish there was a way to clone the kind, helpful, understanding medical staff and send them out to replace all the WACKO ones that are out there - the ones who treat kids like they are pages in a book instead of actual human beings.
    So, here's wishing you a happy 11th D-versary - 11 years of health and strength and keepin' on, despite the roadblocks and the wackos. :)
    BTW, if you find the "short blog post" support group, could you point me in that direction? I need the "short comment" division;)

  6. Great post! I love what you said. I, too, have been really surprised in how little nurses at our clinic know about Type 1. Scary actually. way to advocate for your boys!!

  7. Wow- 11 years! Congrats!
    I, too, am surprised at the lack of BASIC knowledge among some nurses of this disease! So frustrating!

  8. Soooo sorry to hear about your initial medical experience. Yuck!! Having a baby with type 1 is definitely a challenge! I've gotten to where I just check his blood whenever he's cranky, so at least I can rule that out! It's something I think about day and night. I can't wait until he's old enough to talk. Any baby/diabetes coping skills or helpful hints you'd like to share?

  9. You are simply amazing in my book. How you ever manage everything is astonishing. I love reading your blog. If they offered a cereal for T1D...your picture would be on the box! Oh, and whack diabetes with a big stick. That's what pinatas filled with litle toys and sugar free candy were made for!!

  10. I want to thank all of my new friends in the blog world for your love and support and your sweet comments. Lora, I'm brainstorming my best thoughts. Could you email me and I'll send them along?

  11. Oh my gosh! 10 units of insulin????? My stomach still hurts from reading that. Way to go for speaking up. We learned to do that when my second was in the hospital and had 4 surgeries in 4 months.


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