Tuesday, February 8, 2011

11 months ago today...

 Here is a repost of Bekah's diagnosis story...It was 11 month s ago today...

To begin the story of when Bekah was diagnosed with T1D or Type 1 Diabetes (also known as juvenile diabetes) I will take you back to November. I had to take Bekah in to the doctor because she had not passed the hearing screening at her school. It turned out that she just had a wax build up but I did have the doctor check her weight because she was looking quite thin to me. She had grown an inch and lost 3 pounds. She had just had a nasty bout of the stomach flu so I chalked it up to that. When we went in for the retest on her ears she had gained back two of the three pounds therefor my worry was put to rest.

As 2010 went along I kept noticing that Bekah was getting thin but I figured it was because she was growing and was probably going to have a thin build like my mother-in-law. It was just one of those things that makes you go "hmmm" but not something you rush your child to the doctor over. I had noticed that she was having issues making it to the toilet from time to time before wetting herself, not a lot just a couple of occasions and it wasn't like her but again just something that makes you go "hmm" but nothing to be alarmed over. After all she is a busy kindergarten-er and has a lot on her mind. My older kids would get a little busy at that age and forget to "go" on time. The last week in Feb. Bekah got a little droopy (for lack of a better term). Saturday, 2/27 she went to a birthday party and cried in the car on the way home, and then told me her tummy hurt. I figured she was getting sick. Bekah has had very few cold and viruses in her life. No ear infections or reasons to be on antibiotics. Her symptoms from a virus etc are usually just to lay low for a day or so. I'll find her under a blanket on the couch and she tends to have little appetite but wants to drink. It is almost always recommend to drink lots of fluids when you are sick so I never bat an eye at her wanting to drink a lot. This was the case most of the week. While most times she is back up ready to play with in 24hrs, this time she just didn't seem to bounce out if it. She was getting so skinny and now I began to worry. Was she depressed? What happened at that birthday party? Was she anemic? She is drinking a lot, could it be diabetes?... no we don't have any family history that is silly. What about Leukemia, I can't even go there... I wrote emails to both my cousin and my prayer partner (you know the person you go to at any time knowing they will faithfully pray) I will post them here:

To my prayer partner:

I'm worried about Bekah. She has not been herself. She has grown and gotten thin but she seem unusually skinny to me. Maybe because I have had extra padding is why it seem alarming to me. The thing that worries me the most is she doesn't play. She sleeps and then when she gets up she is usually found lying somewhere curled up in a blanket. 6 yr old little girls are supposed to play!! She seems sad. The only thing that keeps coming to mind is that she was at a birthday party last weekend and she cried in the car on the way home and for a while after we got home. I thought maybe she was getting sick. I asked her what happened at the party and she said nothing. She wouldn't tell me why she was crying. She was playing with my niece at my parents house before the party and then after it seemed her demeanor changed. It could be a coincidence that she was coming down with something and has been fighting it off all week. She doesn't get sick. She usually acts like she has been all week for a day and then she perks up and is better. When you talk to Daddy next will you ask Him about her? Let me know what you hear. I don't know if I need to take her to the doc. How long do I let it go with out doing something??

To my cousin on Sunday 3/7/2010:

Please pray for my daughter, Bekah. I'm not sure what it is yet but something is wrong. She has had no energy for over a week. Doesn't want to play. I keep finding her instead of drawing at the table like she used to always do, curled up under a blanket somewhere half asleep. She has gotten extremely skinny too. Her clothes are hanging off of her. I'm calling the doc in the morning. My mommy instinct feels like it's bad. I'm scared.
Every time I turned around she was sleeping on the couch. On Saturday I had a mini melt down. I cried as I held her on the couch, "I feel like I am losing you" (I had no clue then how close I really was to losing her). I took her to Target and the Dollar store to buy some crafts and activities to try to get her to bounce back or snap out of what ever was going on. She could have been a poster child for depression but in my gut I knew it was something bigger. Monday morning I woke up and immediately called the clinic to get Bekah in to see our doctor. I was disappointed to learn that her regular doctor was rounding at the hospital and not seeing patients that whole week. I decided to wait to see her until the following Monday. I was afraid that another doctor wouldn't take me seriously and Bekah doesn't do well with strangers so a different doctor might not be the best idea for her. As part of my plan to help her snap out if the depression we planned a princess tea party for her and a friend as an early birthday celebration for her friend. Bekah perked up a little for the party and then she feel asleep on the couch. I was planning on her going to school. I'm not sure what I was thinking now that I look back. She was practically in a diabetic coma and I was going to send her to school. All day I had been feeling anxious like Bekah really needed to see a doctor and had even called our pediatrician's medical assistant twice to see if our doc would see her, but this was the last straw. I called and got her in at 3:00 with whomever had room. (I found out later that just as I was making that call our regular doctor was making a plan to get Bekah in with her)

Here is what I posted on Face book:

Taking Bekah to the clinic in a few min. She has not been herself. Extremely tired for over a week. She sleeps a lot and never wants to play. You can see how pale she is from the tea party pics.

7 hours later here is what I posted:

I just want to wake up and the nightmare be over. Bekah is in the PICU at Emmanuel right now. She has been diagnosed with type 1 diabetes. I had to make the difficult decision to come home and leave her with Jason because David can't be there and he needs mommy at night. To top it off someone got a hold of our bank... acct number and stole our money. I'm tired and scared but I know God is bigger than this!

Here is what transpired in those seven hours. The doctor that we saw was very kind. My first and biggest concern was her weight. I asked him to look back in her record to see what she weighed in November. She had lost 12 pounds! From 58 down to 46lbs. I knew it was more than just a growth spurt but had no idea she had lost that much. He then did a urine test and a BG test. The meter said "HI". Having had gestational diabetes, I knew that wasn't good. He told us that Bekah had Diabetes and he sent us to the ER. "Don't go anywhere else just straight across the street," he warned. In the ER we were met by some fairly nice nurses. They had a very hard time placing an IV because Bekah was she dehydrated. The 5th time was the winner! It was so hard to watch as she tried to be good but could not help screaming because the pain was so intense. The last nurse to try looked at her and said "your job is to say peanut butter and jelly sandwiches when I tell you" Just as she went to poke she gave Bekah the signal and together we yelled, " peanut butter and jelly sandwiches!" and the IV was successfully placed. That became our saying each time she had to have a poke etc. We'd say peanut butter and jelly sandwiches together. (we still do some times)

An ambulance came a few hours later and took us to Portland to Emanuel Children's Hospital to the PICU. As Bekah was being wheeled in to the room I met eyes with a woman in the room. It was one of those moments that you know spans both the physical and spiritual realm. It was as if I knew this lady. I knew I had never met her but I "knew" her. She turned out to be Bekah's nurse and the best nurse we had the entire time. I asked her about David being there. (He was just over a year old and still nursing around the clock) For his safety and I totally understand why, he was not allowed. She did let Jason sneak him back for a little while so I could decide what to do. I couldn't leave Bekah's side. I couldn't leave David either. He would be a mess and I knew that Bekah was with Jason and the angel that God had sent to be her nurse. It was one of the most difficult decisions of my life but I knew I needed to go home and regroup. I was a mess. Jason was the stable one who could keep her smiling and all I could do was cry.

It was the longest drive of my life. I kept looking for reasons to turn around or thinking of where we could try to sleep at the hospital. Once I got home I laid David down and began to sob. I felt sorry for myself, Iwent through the huge guilt of "I should have caught this sooner" and "I am her mommy how could I let this happen" etc. I felt sorry for Bekah and the new life she would have to lead. Shots daily seemed so unfair. There were so many fears that I was going to have to face. First of all I have a huge fear of needles, I am a baby when I get shots. Now I was going to have to give them multiple times a day. Jason's best friend from high school was a T1D and he took his own life by overdosing on insulin. I have a fear of what it can do but know it is necessary for Bekah to survive. It was in these moments of despair that I released it all to God. "You are strong where I am weak, I need your strength" (that is the very short version). I laid my head down and slept for an hour or so. It was time to get ready to go back to the hospital. I was ready to face the day anew and dive in to our "new normal" This is our life and I was, still am, determined to make it the best it can be no matter what!

My FB post that morning:

Last night I did the shoulda woulda coulda thing and went through what I ate while preg etc. You moms know the drill. I'm running on an hour or so of sleep but I am ready to face this day and find our new normal. No going back, it is what it is and we will do the best we can with what we have to face. God loves my baby girl more than I do and we will find a way to glorify Him in this!

I took David to my parent's house and couldn't get back to see Bekah fast enough. The amazing nurse we had the night before was no where to be found but what I did see when I walked in to the room sent joy through my whole body. My sweet little angel girl was sitting up in bed eating an egg and cheese omelet. Soon we were out of the PICU and on to the regular floor. We had to share a room but tried to make the best of it. The next step was education so we could manage all of this at home. Overwhelming is an understatement! The next few days were challenging to say the least but I think that is for a different blog.


  1. Heidi, your strength through all of this has been so inspiring to me. I had NO idea what T1D was like, and it's been such a revelation of what you and mom's like you have to face and deal with every day.

    A bad comparison that I think always think of is that it's like having an newborn. You have to constantly care and be aware of them and their needs, and you never really sleep well (at least I don't) for that fear in the back of your mind of SIDS, or illness that you don't recognize because they're so young. Except for you, those daily struggles are never grown out of.

    I know it doesn't compare at all to what you face, but that's all I have to relate it to. Know that I pray for you, and think about you and your family often.

  2. Everytime I read this, I get a little teary eyed. She is strong, I can tell..

    I believe honestly- That God gave her this for an incredible purpose. It doesn't seem fair sometimes to have to deal with health things every day. But God doesn't give us anything that we can’t handle. God sees potential in your little girl and strength in her and you. You get to battle it together. Maybe this is just away to become closer to our savior....
    Hugs to you guys, God never lets go.

  3. "PEANUT BUTTER AND JELLY SANDWICHES!!!!!!!!!" I am going to yell that with my kids everytime the going gets tough from now on Heidi. Thank you for this post. Although, I hate knowing that you and Bekah...and your family...endured this tough time, I appreciate your thoughts, your perspective, your perserverance.


  4. Well Heidi, I have to be honest. I have only read half of this...and I can't read anymore right now. This Thursday will be 2 years since Ally's dx so it kind of hit home for me. For now, I'll say thanks for posting this and send you big HUGS! (And I promise I'll come back to finish reading it soon.)

  5. Oh Heidi. Gets me every time! Just think about where you are now... How far you've come. It's hard to remember... ((hugs)). I've gotta go wipe my eyes!

  6. Brings me back...and the tears flow!