Tuesday, February 12, 2013

Should I blame diabetes?

....probably not, but I can't say that the possibility hasn't crossed my mind.

We're currently in the fourth week of hospital admission with our daughter. The reason: Infantile spasms, a rare form of epilepsy (apparently there are only about 20 new cases per year in Denmark). We first noticed something not right a coupleof days after she'd had her 5-month vaccination. Her whole body would be shaking in cramps for 10-20 sec. after which she'd need a few seconds to return to her normal self. Our first contact with doctors and hospital had them concerned, but without any possibility to make a diagnosis because Amanda was perfectly fine in their hands and we had no documentation for her seizures. When we got that, we returned to the hospital the next morning, exactly a week after her vaccination. While I sat waiting for the doctor to have time to view our video, she had two seizures in just 10 min. Once the doctor and nurses came around and saw the video, Amanda has another seizure, the third in as many hours, and suddenly everything went very fast. 

The day of the admission and the following ones, numerous tests were run to find a possible cause, but so far nothing has been found. In this investigation, I obviously cannot help but consider the possibility that the spasms could have something to do with my diabetes, e.g. a consequence of one of the severe hypos I experienced while pregnant with Amanda. The fact that I myself suffered from absence epilepsy for a few years as a child, also brought my thoughts to it being something genetic. I'm also inclined to think that the vaccination had something to do with this, if not as a cause then as a triggering factor, but so far we don't know, and may never will.

All we can do at the moment, however, is hope that he doctors will soon figure out a treatment plan that can keep her seizure free until she, hopefully, will outgrow this. Today is Amanda's 6 months birthday, and this is not the way we'd hope to be celebrating it :-(

Tuesday, August 21, 2012

Welcome to the World, Amanda :-)

We made it! We made it through 9½ months of pregnancy with overall healthy numbers and measures for both me and the little one. What we didn't manage, though, was to convince the doctors that initiation of delivery induction at 38 + 0 was too early.

On Monday August 6th (37 + 6), I'd started my day as I liked to do with breakfast and a 14 km bike ride that I managed to get in just before the
rain started pouring. I was at my computer by 8:00 AM with a wish to finish as much as I could on the publication that I was working on. Since being at home in the last months of pregnancy, I typically would work on data analysis or paper drafting in the morning and then take a long walk with our dog after lunch. On days when I felt a need for a nap it would typically be just before or after lunch. On that particular Monday, though, the weather forecast had shown that the rain should abate around the time of lunch, so to have the entire afternoon open for the long dog walk - and because the gray and rainy weather outside was making me sleepy, - I decided to take a nap at 9:00 AM. Before lying down, my BG was 5.1 (92), having dropped just 0.7 (12) points within the past hour. I knew that I had a tendency to drop over the morning, but at that point it had been 3 hours since my breakfast bolus, and I considered it safe to take a 1 h nap. I set my alarm clock for 10:00 AM, but all I remember is that I hit snooze, then nothing until Jimmi was home with me at 13:30 PM! :-( At that time, I was able to test and had 1.6 (28) staring back at me. Jimmi was very concerned, also for our baby - at that point, my brain was still too foggy to remember how very pregnant I was. He'd called the paramedics, and even though my BG had already climbed to 4.6 (83) at their arrival, I was still very affected by the hypo, and hence we were all off to the hospital for a check-up.

At the hospital, they immediately started an IV on me - even just with saline - and initiated CTG monitoring of the baby. She was affected by the hypo as well, showing a much slower heart rate than she typically would do, so with no room for discussion I was admitted and they were practically ready to cut her out of me with minutes notice. Having both recovered for a few hours, the baby's heart rate was back to normal, my BG was cruising at much higher levels than usual, but at least the doctors backed off a bit, deciding that they probably didn't have to start delivery induction until the next day. Even though I tried, I could not convince the morning round doctors that it would be Okay to wait until Thursday for the scheduled induction to start. They wanted to start right away, so we only managed to push their schedule to start late afternoon instead of in the morning, as this would give us a chance to go home on a temporary leave to pack some things and get a bit of rest (I'd only gotten some 30-45 min of sleep that past night).

Tuesday afternoon was the initiation of a long and not very successful attempt to induce natural delivery. From the beginning, my cervix was about 2 cm long and very closed. 6 suppositories later that hadn't changed significantly and because I was not willing to agree on a c-section until there were no other
opportunities, we proceeded to insertion of a balloon catheter which should mechanically force open the cervix. The first attempt was a painful flop, as the catheter fell out during a toilet visit because the doctor had not been able to fill it as much as required because it hurt like H... The next day (now Saturday!) took a longer discussion with the doctor, who said something different from the doctor who had checked on me over night when the catheter had fallen out, but the end of the discussion was that we should be transferred to the maternity ward and I should be started on a contraction stimulating IV. The plan was that either this alone would be enough to help the baby settle in my pelvis so that she could add a bit of pressure to the cervix to make it open enough for the midwife to break my water, or if that didn't happen, then at least hope that the IV would enable insertion of a new balloon catheter for the night. It ended up being the last, this time much less painful, and the balloons were filled as they should. The doctors were encouraged by this and were almost certain that if my water didn't break by itself overnight, then at least it could be broken the next morning.

On Sunday morning (12.8.12) Jimmi and I were hopeful that the whole thing would soon come to an end and that natural delivery could finally be induced. Unfortunately, the examination after removal of the catheter revealed that induction of natural delivery was not going to happen, and because they had started that process they also wanted to finish it, so c-section was the only way out - we got just 1½ h to get used to that. I had an emotional meltdown when they announced this. It was exactly what I'd feared would be the end of it, because from the very beginning I had felt that our baby would be better off staying in my uterus for another week or two.

Fortunately, the spinal sedation wasn't as unpleasant as I'd imagined, and Amanda screamed her lungs out in protest the minute she was pulled
out. She was just 2745 grams and 47 cm, so a very lean little baby. Her blood sugars were perfect all the way, only her stomach and intestines needed a couple of days to get to work properly so we had to stay in the hospital for a few days afterwards.

Amanda, 2 days old, still with a stomach tube, but chilling peacefully with her dad :-)

Sleeping beauty, 5 days old :-)

Friday, August 03, 2012

Point of no return

Yesterday, we had the final pre-scheduled hospital appointments of my pregnancy. It was meant to just be with the midwife and a pump nurse if needed, but because we had so much that we needed to talk through with the midwife it ended up taking most of the morning anyway.

The midwife, who's followed me from the beginning was back on duty yesterday, and while doing the heart rate monitoring on the baby we expressed our concerns and frustrations with the decision of induction that we felt had been forced upon us last week. The midwife was very understanding, and ended up checking which doctors were on duty to get us into an additional consultation. Fortunately, the doctors that have been following me along this journey were back after their summer holiday, and with both of them being chief physicians they had a lot more knowledge and nerve than the ones we saw last week.

The OB took us through their main reason for sticking to the 38+0 rule, which was new to me: According to her, the function of the placenta will typically drop more or less dramatically after 38 weeks, and this drop in function seems to be more severe and with a quicker onset in PWDs. Both of the doctors were rather surprised though, when we showed them the information we had about the procedure in the two largest national hospitals. Apparently it was new to them that type 1 diabetics elsewhere in the country could be allowed to await natural induction of delivery all up to their due date, so I hope that if we change our mind about trying for a sibling for junior in a year or two, the procedures will have changed in Odense as well to allow this type of approach if there are no problems or complications.

In the end we felt like they listened to our concern, and they agreed that postponing the induction a couple of days wound hurt anybody. It's a small, but more acceptable compromise, I think. They offered us a bit of influence and we accepted it. My feeling is still that the little one is not ready to be born just yet, but now at least she may not be out until around 39 weeks. I'll still have to check in for another ctg on Tuesday, but the full examination and start of cervix maturation will not take place until Thursday the 9th of August. This will be the point of no return even if it might still take days before active labor commences.

Friday, July 27, 2012

Oh baby!

Yesterday, we had our final grand check-up before the doctors were to decide, when they want to schedule induction of delivery. In Denmark this is normal practice, though there are significant regional differences, with some hospitals hoping for natural delivery commencement and others playing it safe with induction weeks before term. We belong to one of the latter kind. What started out as a great day was turned into utter feeling of frustration and tears :-(

Our day started at the midwife for a CTG on the baby and a blood pressure check on me. The little one still has a perfectly normal heart rate and activity level, and my BP was just as stable as it as been all way through - 110/73. Next up was the ultrasound weight scan, which again showed that Junior is still following her own growth curve with average tummy and femur measures, but a slightly smaller head. Her weight was estimated at 2,386 grams, which is on the lower normal side at 36 weeks - and which will leave her at just about 3,000 grams at the time when they want to induce delivery.

Now, how can you not be happy and totally in love with this little one?

Junior at 36 + 2, 260712

Having made a couple of adjustments to my pump settings based on the sensor output and having my weight and urine checked, the final stop was the doctors' office. Unfortunately, being vacation time, yesterday meant a consultation with two new doctors that we've never seen before - not optimal when you want to make your final points about delivery induction before they make the decision. My feeling with these two docs, as well as the ones we saw a couple of weeks back, was that they weren't really listening to our thoughts and concerns. Whenever we tried to ask for personal explanation to their 38 + 0-rule, we got a general answer along the line of "the risk of complications increases significantly and we cannot justify jeopardizing the baby's life". Not a single personal reason. It seemed like they only refer to their own, and in my mind somewhat biased, experience. I mean, if they don't let people pass the 38 + 0 line, how can they know that the outcome will be so much worse on the other side? We left quite deflated with the message that they would call us in the afternoon once they'd had their end-of-the-day conference to set a date for me.

At 3:30 pm the phone rang, and I was told that they'd decided to go ahead with their 38 + 0 recommendation. I argued a bit with the doctor on the phone, and while she said that I could of course reject that decision, then she made sure to play on my feelings, making me feel like a bad parent/patient if I did not follow their recommendations. Both before and after that phone call yesterday I was an emotional mess because of course I don't want to risk complications for me or the baby, but I also have this strong feeling of 38 + 0 being too early for both of us. It's hard for me to explain, but it just does not feel right, especially with the baby's current size and growth.

Now that I've slept on it, I think that I'll ask the midwife at the appointment next week whether if I show up for the 38 + 0 appointment, I'll be able to reject their pills if the baby and I are still doing fine and there are no signs of any of us being ready for starting the induction process at that time, or if I have turn the appointment down in advance. In the end of course, I hope that the midwife will be able to come up with a recommendation that is more on my side of things, as I can only imagine that things will be easier if both me an the baby appear more ready for delivery to be induced.....

Tuesday, July 17, 2012

Showered and starting the count down

While you sometimes - especially when you're a kid or teenager - feel that you could do without their presence or well-meaning advice, other times it's the smallest things that makes you remember why and just how much you love your family. A couple of weeks ago was my sister's birthday and we'd been invited to a Sunday morning brunch. Our parents came over on Saturday and we all had dinner together at Jimmi's and my place, so we had already sorted her presents at that time. I say this, because it turned out that what Jimmi and I thought would be a birthday brunch for my sister, was actually a baby shower for us that my sister had arranged with both our families and a couple of our friends! Her reason: In her own experience, it had been incredibly hard to constantly have people dropping by with presents in the weeks after their daughter was born, so she hoped that by letting our families provide us with their presents now, we'd get a calmer first few weeks and be able to decide when we're up for visits :-) Have I mentioned how much I love my sister?

Today I'm 35 weeks pregnant, which means that after my appointment next week, the medical team will meet up to schedule when they think delivery should be induced. We've discussed this with our midwife on a few occasions, and while she's seems open-minded and supportive of our wish to not force on delivery if it's not medically necessary, she also took the time to explain to us the likely reason that the OB had seemed rather dismissive, when we asked about this possibility last week. It seems like the "induction at 38+0-rule" is based primarily on experience - and since it almost always work well then they are hesitant to make any changes because, if something should go wrong it may be difficult for them to determine if what went wrong would have also gone wrong had the induction taken place at 38+0 and not later. I fully understand that argument, and I may also feel like just getting things over with at that point, but as both junior and I seem to be doing perfectly well currently, and the little one is actually estimated to be on the lower side weight-wise, I do have some difficulty coping with the fact that she may not be allowed to mature more than 3 weeks more inside of me.

It may just be the fact that in this case I may not have much to say about the course of actions that makes me feel uneasy about it. I don't know, it just seems strange to me that when there are absolutely no indications of diabetes-related complications for junior or me that they'll still insist on inducing delivery no later than 2 weeks before the official due date. The little one is still growing steadily, but their continuous measurements have kept the medical team very attentive because apparently the little one's head measures slightly smaller than what the median measures are, while the tummy and femur measures are always spot on. Because every thing else seems to be perfectly normal (heart rate and activity level), I find it a bit difficult to be really worried about this - after all we don't know if this is just genetic variation, because none of us were ever measured to this extend and unless something seems completely off, no one measures a newborns head anyway.

Only time will tell, and we can almost start the count down.....

Thursday, July 05, 2012

Twisting and turning - but growing well?

"Diabetics tend to get big babies" - a very common line among medical professionals. And sure, our babies may be building up more body weight if our glucose levels are too high. After all, insulin is a hormone with anabolic effects and as soon as our little ones start producing their own, they'll just produce more if the blood running from our system into theirs is too sweet.

Still, I think that there are other factors contributing to a baby's weight, regardless whether the mom is a PWD or not. Not least the genetic pool.

I'm now 33 weeks along and have switched from biweekly to weekly check-ups at the hospital. Last week was a full day (well technically only half a day) of midwife (CTG), ultrasound, doctors (OB and endo are fortunately sitting at the same table at every appointment), pump nurse, eye photos and blood tests. Since the beginning of May, the ultrasound appointments have been dedicated to measuring the baby's weight and growth. All three of those appointments so far have shown steady growth, with tummy and femur measures right in the middle of their standard curve, but with a slightly smaller head, resulting in an overall lower weight estimate for our baby (10-20% below the center of the curve, but still within the "normal" range). Last week, the midwife had estimated the baby's weight to be around 1,600 g and the subsequent ultrasound came back at 1,571 g. This had the OB a bit concerned - even though the little one is still following her own growth curve - so she ordered another ultrasound before the next scheduled one, "just to make sure".

At today's CTG-appointment, the midwife estimated the baby's weight to 1,800 g. Next week will then be another ultrasound to measure it, but while I'm not too worried about the baby not growing well, I obviously cannot just forget the OB's worries about it. I asked around in a forum of pregnant and mommy PWD's, and was comforted by the fact that far from all had had big babies. Also, the fact that my now 6 months old niece was also estimated to be a bit too small, but came out at 52 cm and around 3,500 g at 41 weeks comforts me, as it makes me think that maybe it's just part of my genetic makeup (both my sister and I had similar lengths and weights, and none of us were born "on time", but a bit after our mom's due dates). Or maybe it's just because the little one is so active? ;-)

Friday, June 08, 2012

Continuous adjustments

Between trying to manage my health for the sake of our growing baby and a busy social calender, I've been working hard to complete as many work-related projects as possible. This has made time for blogging and blog-reading limited, but today I found a new post from one of my fellow pregnant D-bloggers in my mail. It reminded me not only to post a bit myself again, but also how different each and every PWD is in terms of treatment goals and wishes.

Jacquie's post was about how, in the process of pregnancy, she has changed her view on desirable BG and HbA1C values originally sown by a statement of her endo in the early days of her diagnosis. Pregnancy has made Jacquie wish for even a temporary membership of the "5-point-something" HbA1C-club. In the context of pregnancy I fully understand that wish. However, I must say that being a member of that club, which I've been for the better part of the past 15 years isn't always a pleasure.

The perfectionist in me has always strove for close-to-normal values, especially as technology improved and I started testing more frequently to get better HbA1C-results. The first 4 years of my diabetic life I had one of the brick-size meters taking 120 sec. to come up with a result, but in 1994, as I won a trip to the final matches of the World Cup in football (or soccer as you American prefer to call it :-)) in the US, my parents and I decided that it was about time to look for a smaller and faster meter. This became the start of me testing more frequently, and even without much attention to it, I soon found myself with HbA1C-values in the 5-6-point-something range. From then on, my competitive mind wanted to stay there.

I've managed to stay in that HbA1C range, which also made for a carte blanche to get pregnant whenever I felt like it. However, the low HbA1C levels at times also represented numerous hypos, some even requiring assistance from friends, family, colleagues or even paramedics. For many years, I've actually worked hard with my CDE to slightly increase my HbA1C, but I haven't been too successful at it. Also, 5 years ago, an additional autoimmune diagnosis entered my records, namely that of hypothyreoidism.
It had probably been going on for a while before I finally got into treatment, as during the process of drug dose titration, I experienced a lot of the issues regarding BG regulation that I'd been experiencing on and off for years before. This, along with study and career choices, made me postpone any attempts to start a family, despite Jimmi desperately wishing to.

When I got pregnant, my HbA1C was at 5.4 and steady for the first three months. Then it dropped to 5.0, and because I knew how many hypos had brought about that number, I certainly didn't feel satisfied, but rather a bit defeated by diabetes and how pregnancy continuously changes all the rules of play in the day-to-day diabetes management game. Last week, my HbA1C came back at 5.1, and this time I feel slightly better about it as the number and intensity of the hypos have decreased over the past months. Yet, I still have work to do to try to slightly increase my overall levels in order to make the hypos less frequent. My insulin needs has gone up - currently about 50% - but I'm still very sensitive to physical activity as well as lack thereof, so it's a delicate balance to dose correctly at all times. It seems like every time we evaluate my sensor downloads some rates and ratios are adjusted upwards while others are adjusted downwards - there's apparently no common sense for the direction of adjustments yet.

Last week, we had another chance to spy on our baby. The ultrasound tech was then convinced that we are to expect a baby girl, and she's fortunately growing just fine with tummy and femur measures perfectly matching the center of the standard curve. Her head measured a bit smaller, so overall she was estimated to be in the low normal weight range, but following the growth curve perfectly well :-)

Junior at week 28 + 2 :-)

I hope that she'll continue like this, and that I - hypos aside - will continue to feel as well as I do now. Then we'll see if I'll let the doctors go ahead with their principled requirement for induction of labor in just 8½ weeks from now :-)