Our stay in the hospital lasted 3 nights and 3 days. It was awful. A little personal info about me that you may not know: I hate blood. Really truly can't even stand the word. I can't tell you how many times I've passed out while having my blood drawn. So it was no surprise that I almost passed out on a couple of occasions while learning how to do blood glucose (bg) checks. I'm pretty used to it by now, seeing my baby's blood 12-15 times a day starts to desensitize a person. However, if I'm not feeling well or am really tired, getting a "bleeder" still makes me all gooey. In fact, just thinking and writing about it makes me all gooey and I am now going to save this and take a break!
Ok, I'm back. The first night was just being up all night while the nurses tried to bring his blood sugar down. They had one "bed" (some sort of fold out thing that shouldn't be used for anything more than to torture a prisoner through sleep deprivation). Our first day was for starting to learn about diabetes and how to care for it. I don't remember a whole lot about that day. I have snapshots of things here and there. I remember trying to get Ashton to eat (his appetite still had not come back), I vaguely remember moving out of the NICU. For some reason, I was up all night the night before we went to the hospital, so I was barely functioning anyway, without even considering the whole emotional drain.
Chadd and I decided that I would go home and sleep for the second night of our hospital stay. Prior to this I always thought that there was no way I would ever be able to leave my baby at the hospital. But as exhausted as I was, I was useless. I hadn't retained any of the information that was given to us that day. I couldn't see straight. I couldn't read the book that they gave us. I knew that I had to sleep so that I could start learning how to take care of my son. So I went home.
The next morning I showed up with Starbuck's for me, and McDonald's for Chadd and Ashton. I remember at this point our nurse, and how great she was at painting a visualization of the things that were going on inside Ashton's body. I was able to start studying and doing blood sugar tests. I also remember giving my first injection. I cried, but I don't think I threw up. Chadd slept at home that third night, and I stayed with Ashton, in a very quiet hospital where it seemed like time moved slower than the rest of the world.
I hated being in that hospital, but I was terrified to leave. There were no nurses at home. No emergency call button. No one to reassure you that you were doing fine. I was leaving the hospital more clueless this time than I was when I first gave birth to Ashton. I was bringing home Ashton and Betes. I had no idea what I was doing, but it didn't seem too bad because I had Chadd with me.
And then Chadd had to go back to work.
The hardest part, at the time, was finding the confidence to believe I was doing the right thing. For all that they know about diabetes, and for how far and fast they have come with understanding and treatment of this disease, the day to day care still comes with a lot of guesswork: If he was at a borderline blood sugar on the insulin scale, should I go higher or lower with the dose? Was there too much leak back from the injection site? Did he have enough to eat? Will the extra 1/2 a carb skyrocket his sugar? Can I sleep for three straight hours or do I need to set my alarm to check him in two?
We have come so far in how we understand this disease in Ashton. We are not fools enough to believe that we have a real handle on anything, diabetes is too unpredictable. But our guesses and intuition are based on a lot of experience of trial and error. I'm happy to say that we have had more good days than bad. And even though the bad days are far between, there are still times when I just don't know what the hell to do and I fell like I've just been let out of the hospital.
Monday, August 25, 2008
The Guilt
I am a "by the book" kind of mom. If the rule says, "no peanut butter until the age of 2 (age 3 if history of allergies)," then the kids didn't get peanut butter until the age of 2- and not a day earlier. I breast fed, and always did "back to sleep." There were no blankets and pillows in the bed, never put the children around second-hand smoke, cut grapes and hot dogs into microscopic pieces, took a CPR and first aid course, and blah, blah, blah. Some people may think that it's unnecessary to follow arbitrary rules, but I need to do it. I need to know that I did everything within my ability to keep the kids safe and healthy. But for awhile, I thought that I gave Ashton diabetes.
I had always had problems with my periods, but went on a birth control pill as a teenager and that really seemed to help. I went off the pill 3 months before Chadd and I got married (that's another rule: be off the pill at least 3 months before attempting to get pregnant.) We were ready to start our family. By the time our wedding rolled around, I was already having problems. It took another year for me to get a diagnosis.
I was diagnosed with polycystic ovary syndrome (PCOS). PCOS occurs in about 10% of women of childbearing age. There are many symptoms of PCOS, not all of the women get the same ones, here are the ones I was fortunate enough to have:
I had always had problems with my periods, but went on a birth control pill as a teenager and that really seemed to help. I went off the pill 3 months before Chadd and I got married (that's another rule: be off the pill at least 3 months before attempting to get pregnant.) We were ready to start our family. By the time our wedding rolled around, I was already having problems. It took another year for me to get a diagnosis.
I was diagnosed with polycystic ovary syndrome (PCOS). PCOS occurs in about 10% of women of childbearing age. There are many symptoms of PCOS, not all of the women get the same ones, here are the ones I was fortunate enough to have:
- amenorrhea (complete loss of period)
- infertility (due to amenorrhea)
- rapid weight gain/obesity (usually carrying the weight around the waist)
- acne
- hirsutism (increased hair growth)
- high cholesterol
- anxiety/depression
PCOS messes with a woman's hormones. A typical woman with PCOS cannot process insulin, which gets stored up in the body, and that extra insulin appears to produce excess androgen (a mostly male hormone), and that gives all the wonderful symptoms like gaining weight like a guy (all around the gut-think "beer belly").
I was finally diagnosed with PCOS and I started fertility treatments. After awhile I couldn't take it anymore. I wasn't getting pregnant and I hated myself; I couldn't look in the mirror and I was completely miserable. We decided to stop trying to get pregnant and just treat the PCOS. My primary care physician referred me to an endocrinologist who put me on Metformin (birth control pills are a long term treatment, which is why I didn't know I had PCOS in the first place). Metformin is used to treat Type 2 diabetes, because it helps the body regulate its insulin. Thus, it helped me regulate my insulin, and then all of the other symptoms started to reverse. After 2 months of Metformin, I started to lose weight and my acne started to clear up. After 3 months I was pregnant!
Fast forward to June 16, 2005: We were in the hospital, it was the middle of the night, and the doctor was in the room checking on Ashton, there were nurses everywhere, and I was a wreck because I thought that I gave this disease to my son. I told the doctor that I was on metformin when I got pregnant (remember- it's a drug that treats insulin resistance) and I wanted to know if I was the cause of his newly diagnosed disease. He assured me that I was not and we spent the next few days learning about possible causes for the disease (the medical community knows that this is an autoimmune disease, they just don't know what actually causes the body to attack itself).
Still, when it was time for me to stop the birth control pill and go on the metformin to get pregnant with Lorelei, I was still apprehensive. But I followed all the rules: took my vitamins, made all my doctor appointments, and nursed.
Monday, August 4, 2008
The Beginning
I guess I would have to say that our life with diabetes started when I was pregnant with Ashton. During my pregnancy, Chadd was head of his department for collecting funds for the Juvenile Diabetes Research Foundation's annual walk. (He works for Ford Motor Co. which is a huge supporter of JDRF and has donated tons of money for research to develop a cure.) I did some fund raising (though I didn't put too much effort into it, I must admit) but I did learn a lot about the disease. We participated in the walk, which took forever because I was 7 months pregnant and pretty much stopped to take a break at every bench we passed. After that, I simply forgot about it.
Fast forward approximately a year and a half later. Ashton was cranky- really cranky. He didn't want to eat. I thought that maybe he just had some kind of persistent tummy ache. Maybe he was teething. Then Ashton started being so sleepy. He was very tired. I remember being at my best friend, Jillian's house, for a BBQ. I had Ashton sitting on the counter trying to get him to eat a potato chip. What kid doesn't want a potato chip? I said to Jillian, "He has all these diabetes symptoms. I don't know if I'm simply just freaking out because I'm a first time mom and know about this disease or if there is actually something wrong." Ashton took an amazing 4 hour nap that day. I ignored that uneasy feeling inside of me; he must have been exhausted from the BBQ.
Ashton was so thirsty. I remeber that he once went through a gallon of milk in 3 days. I spoke to a nurse at the pediatricians office and she told me that because it had been so hot, he might just need the extra fluids. It had been really hot, so I chose to go with that answer and once again ignored that uneasy feeling. A few days later he woke up and his diaper had leaked- a lot. That must be natural, he is drinking so much that it has to come out. The next morning it happened again, but he was completely soaked in urine, and I noticed that it was sticky. I knew at that point I had to stop ignoring that uneasy feeling. I got him washed up and tried to get him to eat. Even though he had slept solidly through the night, an hour after waking up, he started to fall asleep on me. I immediately called the pediatrician's office and said, "There is something wrong with my baby." They got me right in. My mom went with me. The doctor ordered blood work and we went over to the hospital to have it drawn. Ashton still hadn't eaten that day and he looked miserable. We walked by the cafe and my mom said, "I want to get something for him. Do you think he'll eat a cookie?" I said that they didn't look good (which they didn't) but I was thinking in my head, "my baby has diabetes. He can't have a cookie."
At 10:30 that night, Chadd and I were already in bed, when the phone rang. It was Ashton's doctor. He told us that Ashton had diabetes and that his blood sugar was very high and we had to get him to the hospital immediately. We didn't know how to get to the hospital that the doctor wanted us to go to (they had pediatric endocrinologists), and he didn't want to take the chance that we would get lost, so he sent us to the hospital we knew of, the one where Ashton was born, and waited for transfer by ambulance. I called my parents and told them about Ashton and that we were on the way to the hospital. They showed up right behind us.
Ashton's doctor had called the hospital and told the emergency staff to expect us, and they were ready when we got there. They hooked Ashton up to I.V.'s and tried their best to comfort us while we waited for the ambulance to arrive. I went into the bathroom and threw up.
That was June 16, 2005. Ashton was 19 months old.
Fast forward approximately a year and a half later. Ashton was cranky- really cranky. He didn't want to eat. I thought that maybe he just had some kind of persistent tummy ache. Maybe he was teething. Then Ashton started being so sleepy. He was very tired. I remember being at my best friend, Jillian's house, for a BBQ. I had Ashton sitting on the counter trying to get him to eat a potato chip. What kid doesn't want a potato chip? I said to Jillian, "He has all these diabetes symptoms. I don't know if I'm simply just freaking out because I'm a first time mom and know about this disease or if there is actually something wrong." Ashton took an amazing 4 hour nap that day. I ignored that uneasy feeling inside of me; he must have been exhausted from the BBQ.
Ashton was so thirsty. I remeber that he once went through a gallon of milk in 3 days. I spoke to a nurse at the pediatricians office and she told me that because it had been so hot, he might just need the extra fluids. It had been really hot, so I chose to go with that answer and once again ignored that uneasy feeling. A few days later he woke up and his diaper had leaked- a lot. That must be natural, he is drinking so much that it has to come out. The next morning it happened again, but he was completely soaked in urine, and I noticed that it was sticky. I knew at that point I had to stop ignoring that uneasy feeling. I got him washed up and tried to get him to eat. Even though he had slept solidly through the night, an hour after waking up, he started to fall asleep on me. I immediately called the pediatrician's office and said, "There is something wrong with my baby." They got me right in. My mom went with me. The doctor ordered blood work and we went over to the hospital to have it drawn. Ashton still hadn't eaten that day and he looked miserable. We walked by the cafe and my mom said, "I want to get something for him. Do you think he'll eat a cookie?" I said that they didn't look good (which they didn't) but I was thinking in my head, "my baby has diabetes. He can't have a cookie."
At 10:30 that night, Chadd and I were already in bed, when the phone rang. It was Ashton's doctor. He told us that Ashton had diabetes and that his blood sugar was very high and we had to get him to the hospital immediately. We didn't know how to get to the hospital that the doctor wanted us to go to (they had pediatric endocrinologists), and he didn't want to take the chance that we would get lost, so he sent us to the hospital we knew of, the one where Ashton was born, and waited for transfer by ambulance. I called my parents and told them about Ashton and that we were on the way to the hospital. They showed up right behind us.
Ashton's doctor had called the hospital and told the emergency staff to expect us, and they were ready when we got there. They hooked Ashton up to I.V.'s and tried their best to comfort us while we waited for the ambulance to arrive. I went into the bathroom and threw up.
That was June 16, 2005. Ashton was 19 months old.
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