Up the duff with diabetes http://www.type1mum.net/blog/ One woman's journey into the labyrinth... en Copyright 2008 Tue, 26 Feb 2008 09:57:54 +1000 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss Diabetic Mastopathy - My experience Diabetes and Lumpy Boobs - My experience of Diabetic Mastopathy [* Note: If you discover a lump in your breast, please have it checked as soon as possible. The lump I found turned out to be Diabetic Mastopathy but since writing the article below in early 2003 I have had friends in their late thirties diagnosed with breast cancer. It's still a risk for for women with Type One Diabetes and the sooner it is detected the better.] FIVE YEARS AGO I NOTICED A LUMP in my left breast. All the warning bells went off in my head and time stood still as I thought, "Shit, this can't be happening to me...". My boyfriend at the time tried to reassure me by saying, "Oh no, it can't be cancer. You already have diabetes." Nice thought but I was way too cynical by then to believe him. I was almost thirty at the time and had been living with diabetes for 18 years, with my HbA1Cs hovering around the 9-10 mark. Later I was to discover that this level of blood glucose control and duration of diabetes is typical in the 13% of women with diabetes who develop the breast condition "Diabetic Mastopathy". Back then however, I knew nothing about diabetic mastopathy. I was sent to a radiography centre to have my lump checked and I was highly traumatised by the process. The radiographers shaking their heads after each test and saying "oh this doesn't look good" before bidding me farewell, did nothing to quell my initial state of panic. It was only a fluke that before my next appointment with the breast surgeon to decide what to do, I stumbled on an article on the American Diabetes Association web site titled, "Painless Lumpy Breasts Seen As Little-Known Diabetes Complication". Spot on. I'd found it. I was sure this was me. The article explained that in mammograms and ultrasounds (the typical methods for diagnosing breast conditions) Diabetic Mastopatjy looks suspiciously like cancer although there is no link whatsoever with cancer. Fine Needle Aspiration, often the next diagnostic method in the doctor's bag of tricks, can be difficult to perform due to the thickness of the breast tissue. It can be hard to get enough tissue to make a diagnosis. Armed with this new information I reported back to my breast surgeon, waving print outs from the internet at him with glee. I cited scientific journals and told him that I did not believe I had breast cancer, but a condition referred to as "Diabetic Mastopathy". He shook his head and said that he hadn't heard of it. My Fine Needle Aspiration results had come back showing loads of immune cells but no cancer. He said that this in combination with my age meant the chance that this was cancer was very very slim. However, he urged my to have the entire lump removed (excision biopsy) just in case. He was a nice fellow and I respected him, but I decided to go against his advice. I'd had had it up to here with my diabetes by then. And the idea of a surgeon cutting into my breasts "just to make sure" was just too much for me to handle. I'd just gotten my confidence back after years of laser for severe retinopathy, and years of not wearing short skirts or showing my legs in public because I was embarrassed about the scars on my shins from my other rare diabetes-related condition – necrobiosis lipoidica diabeticorum. I was very busy with life and work, just trying to keep my head together. Even the time all these appointments was taking up was driving me nuts. I talked to my GP about how I felt and she agreed that at my age and given the Fine Needle Aspiration results I was probably in the clear. I might have made a different decision if I'd had children or a partner who relied on me. But I was single, I was exhausted and, quite frankly, my breasts were one part of my body that I actually felt good about. After all this, it took me more than five years to muster the courage to go back and get my breasts re-checked. It was less about the trauma and more the utter frustration of having to deal with medical professionals ignorant of my diabetic breast condition that was putting me off. That and the thought of having to go through the shitty inevitability of dodgy looking mammograms and ultrasounds. So it was an absolute relief and a blessing to find myself at the Wesley Breast Centre in Brisbane, this time being cared for by women. Female doctors, radiographers, nurses, volunteers and lots of lovely women sitting around sipping cups of tea and looking out for each other. I demanded to see a doctor before agreeing to any tests. I wanted to explain the Diabetic Mastopathy situation and to tell them not to panic. To my delight and relief the doctor said straight up, "no problem, we know all about Diabetic Mastopathy here". She also said that until I got a definitive diagnosis, I would have to put up with doctors doubting me. If a core biopsy (just a few strips of tissue taken out, but not the whole lump) came out looking like Diabetic Mastopathy, I would be in the clear and wouldn't have to get my breasts screened again until I was 40, just like other women. Sheer joy and jubilation! Well, I did have the core biopsy. It wasn't much fun, and my mighty diabetic breasts even managed to bend a couple of their needles, but it wasn't too bad. The pain went away after a few days and there are no scars. I now have my diagnosis and the test results to prove it. Diabetic Mastopathy. My breasts have changed over the last five years. The fibrous thickness has increased and still no one is able to tell me how this condition might affect my ability to breast-feed. (*see below) I remain disturbed about the level of ignorance that still exists about this condition amongst GPs, diabetes specialists and even some breast specialists. And it makes me sad that I now meet women who have had their lumps removed. Sometimes more than one. By doctors unaware of the textbook advice, "treat conservatively". I even met one woman whose GP had advised her in ignorance to get her whole breast removed. My advice to women with Type 1 diabetes who find a lump in their breast is this: Do get it checked out. But try to find a specialist breast clinic. If you are asked to have an excision biopsy, ask instead if you can have a core biopsy. Cross your fingers and if you are in the clear, rejoice in the fact that you not only don't have to get your breasts checked again until you're 40, but that you have lovely firm breasts! Hell, why not? For everything else we have to put up with, we might as well enjoy this sag-free consolation!
* Note: The Diabetic Mastopathy did not effect my ability to breastfeed. Since writing this article, I have given birth to two children. I breastfed my daughter until she was nineteen months old and I am still breastfeeding my son, who recently turned two. Breastfeeding my children is something I have found to be a lovely thing but I did need extra support to get breastfeeding established due to my diabetes. My daughter was taken to special care for blood glucose monitoring for one and a half days after her birth and this separation, plus the fact that she was born at thirty six and a half weeks gestation, without a sucking reflex, meant that I needed to cup feed and express my breast milk for her while she learned how to nurse from the breast. I got help from a lactation consultant for her birth and for my son's I organised a breastfeeding-friendly paediatrician to care for him. For more information on my experiences with breastfeeding and pregnancy in general, see my blog, Up The Duff With Diabetes.
PS Since writing this article I have had my breasts checked again at the Wesley Breast Clinic. And now that I am forty they will be checked each year. I discovered that the lumps had actually shrunk a little. Nothing had changed apart from the breastfeeding, so perhaps the breastfeeding had actually resulted in a shrinkage of the lumps? Also, I had been concerned that it might be really difficult as I aged for the breast specialist doctors to interpret my test results ie to spot cancer if it was to develop, due to the fact that Diabetic Mastopathy looks similar to cancer in ultrasounds and mammograms. When I asked the breast specialist about this at my appointment she said two things. 1. The diagnostic technology they now use is superior to what was available at my initial diagnosis and it is improving all the time. This allows them to see in more detail what is going on in the breast. 2. The specialist breast clinic I go to has a team of very experienced breast specialists who examine the ultrasounds and mammograms and together they are able to have a very high degree of accuracy

References

Wilmhurst, D., Facts About Diabetic Breast Disease All Women Should Know, Conquest, Diabetes Australia, Autumn, 2002. Painless Lumpy Breasts Seen as Little-Known Diabetes Complication, News Release from the 57th Annual American Diabetes Association Meeting, Massachusetts, June 1997. This article was first published in Yada Yada, the newsletter of Reality Check, which is now the Type 1 Diabetes Network. ]]> http://www.type1mum.net/blog/2008/02/diabetic_mastopathy_my_experie_1.html http://www.type1mum.net/blog/2008/02/diabetic_mastopathy_my_experie_1.html linkPage Tue, 26 Feb 2008 09:57:54 +1000 Photos

We ended up doing things in the traditional order, but if my endo had given me the green light when I hoped he would, there may have been a visible bump in my wedding photos :-)

Ah the joys of pregnancy oedema and house-hunting!

Just a little bump

Getting bigger... but where is Michael's head?

The best feeling in the world. First cuddle with Michaela.

Born before her suck reflex had developed, tube fed for two days, cup fed for two, both of us learning, this photo shows beloved six day old Michaela latching on.

Home from hospital at last! Me with my darling Michaela.

Blissed out on Daddy's chest

Seven months pregnant with bub 2. Michaela and me at our favourite local park. Photo taken by my good friend, James

Eight months into my second pregnancy... the blood glucose meter is never far away

Will's first day on planet earth

First tentative cuddle

One day I will manage to photoshop the breast pad out of this picture :-)

Dad and Will share a joke

Will's favourite hang out and our most well used piece of baby equipment, the sling.

snuggle, buggle, wuggle... my two boys

One of many raspberry blowing competitions

Bliss

yummy

yummy, yummy

Not the smiliest of photos but at least we're all together!

Gerberas for sale! Photo taken late July 2007

Those two boys!

]]> http://www.type1mum.net/blog/2007/08/photos_1.html http://www.type1mum.net/blog/2007/08/photos_1.html linkPage Fri, 03 Aug 2007 22:21:24 +1000 Write your own story http://www.blogger.com/ or if you want to add your own story to this site, email me at ma@type1mum.net.]]> http://www.type1mum.net/blog/2007/07/write_your_own_story_1.html http://www.type1mum.net/blog/2007/07/write_your_own_story_1.html linkPage Wed, 18 Jul 2007 19:21:06 +1000 Ask a question, make a comment ma@type1mum.net or contacting me via my page in the Tu Diabetes community. If you've got any feedback or information to share, it would be great to hear from you! cheers, Mary Anne]]> http://www.type1mum.net/blog/2007/07/feedback.html http://www.type1mum.net/blog/2007/07/feedback.html linkPage Sat, 07 Jul 2007 19:14:50 +1000 Pregnancy and diabetes blogs and stories ma@type1mum.net. It would be wonderful to have a range of personal stories to share. Cathy Daelman's story from the Realitycheck web site The Sweetest Thing - Vanessa's tales of pregnancy and mothershood with diabetes Diabetic Mommy's birth stories section features a number of type one births and Diabetic Mommy's blogs and projects page contains links to a couple of type one blogs that include pregnancy. Managing the Sweetness Within Lyrehca's blog site chronicles her esperiences with fertility issues and IVF, her pregnancy, birth of her son in April 2007, and continues with her experience of new motherhood with type one diabetes. Tu Diabetes Community's thread on pregnancy and type one diabetes People post to this thread giving snippets about their own experiences. Includes links to a couple of pregnancy blogs and a yahoo group for women who are pregnant or trying to conceive with type one diabetes. Type One Diabetic Pregnancy This site is incomplete but includes links to several type one diabetes and pregnancy discussion groups]]> http://www.type1mum.net/blog/2007/07/pregnancy_and_diabetes_blogs_a.html http://www.type1mum.net/blog/2007/07/pregnancy_and_diabetes_blogs_a.html linkPage Sun, 01 Jul 2007 15:59:31 +1000 Valuable books and web sites Diabetes-specific

***** Diabetes and Pregnancy, Women's Experiences and Medical Guidelines

Miranova Publishers, ISBN 0 958 71423 1, available through Diabetes Australia and many libraries. The book you just have to keep going back to for thorough information on pregnancy and diabetes, as written by Josephine Costa (the type 1'er who initiated the project), Alison Nankervis (endocrinologist extraordinaire with a special interest in diabetes and pregnancy) and 17 women with pre-existing (type 1) diabetes who give accounts of their own experiences during pregancy, giving birth, breastfeeding and the first few weeks with their newborn babies. In each of these sections, medical comments are given by Alison Nankervis after each woman's story and as "summary advice". An invaluable resource to help you prepare and to help you realise that you are not alone in this gruelling-at-times labour of love.

***** Can I have a healthy baby?

A succinct but excellent booklet on what to expect and how to prepare for a pregnancy with type 1 diabetes. Especially good as a starting resource or resource to give partners, friends and family when you're pregnant or thinking about becoming pregnant with d. One of the best things about it is the fact that it contains quotes from women with diabetes who've had babies and was thoroughly reviewed by these women as well as medical professionals before it went to press. Produced by the Australasian Diabetes in Pregnancy Society and Reality Check, in conjunction with Diabetes Australia - Victoria. A downloadable version is available at www.realitycheck.org.au

***** www.diabeticmommy.com

This site might just boost your morale if you are feeling stressed, especially during that gruelling first trimester. It was the only site devoted to pregnancy and diabetes with an online discussion forum that I could find during my first pregnancy. There are a lot of people with gestational diabetes and type 2 diabetes and only a few type 1's posting to the forum which is a bit of a bummer for type 1's. But then again, quite a bit of the information is valuable for all. I found their thread on induction, including how to convince your doctor to let you wait a bit longer if everything's going well, particularly useful. Pregnancy in general

***** Up the Duff! The real guide to pregnancy

Viking, ISBN 0670882895 Kaz Cooke's absolutely sensational, informative and very funny book on being up the duff with L Plates! This has actually been my favourite book because it's so chock full of useful info and gives a realistic view of the joys, horrors and practicalities of pregnancy. It's a week by week guide that even my partner could not put down for weeks! This alone in my opinion is a reason to go out and get a copy :-) He wouldn't read anything else. But Kaz's book got the big thumbs up and has him in the know as my most important supporter. Published in the USA as "A Bun in the Oven" by Ten Speed Press; in the UK as "The Rough Guide to Pregnancy" published by Rough Guides; and in Spain as "Embarazada" published by Ediciones B.

***** What to expect when you're expecting

By Arlene Eisenberg, Heidi Murkoff, Sandee Hathaway. Angus & Robertson, ISBN 0207190798 This book is harder to digest than Kaz's book, but very, very informative. It gives a month by month overview of pregnancy and includes useful sections on antenatal testing, choosing a good practitioner to work with, how to get the maximum nutrition, what to avoid during pregnancy, dealing with illnesses and chronic conditions, what to do if something goes wrong, breastfeeding, first weeks with baby, tips and moral support for the pregnant dad ;-) and oh my god - preparing for the next baby!!!

***** Essential Baby Web Site: www.essentialbaby.com.au

This is a fabulous site. It has an outstanding discussion forum with discussions on everything from being a young mum, older mum, caesars, vbacs, high risk pregnancies, partners, birth stories, diaries, childcare, pregnancy tips, baby names, miscarriage, trying to conceive and much more. The site has the most user friendly forum technology that I have ever found and is populated by intelligent women with some fabulous knowledge and a variety of attitudes. The site gets over 250,000 individual visits a month so the resources on tap here are quite staggering. You can also sign up for a week by week pregnancy guide here, shop for maternity clothes and baby gear, and learn about a range of topics that will be of interest to you during your pregnancy and beyond. Breastfeeding

***** Breastfeeding booklets from the Australlian Breastfeeding Association (ABA)

These helpful booklets are sold at the fortnightly meetings of the Australian Breastfeeding Association all over Australia, at a low cost, and they are also avaiable from the association's store, Mothers Direct. The organisation also publishes a wonderful book, free to new members, which combines all their information booklets, called 'Breastfeeding, Naturally'. Parenting With Diabetes

When You're a Parent with Diabetes: A Real-Life Guide to Staying Healthy While Raising a Family

By Kathryn Gregorio Palmer I have not read this book yet, but it sounds wonderful. Kathryn, whose partner also has types one diabetes, talks about her own experiences raising two boys. The book also contains information on pregnancy and birth with diabetes, adoption as an option, and covers issues that can affect parents with diabetes as their children move through the different phases of childhood and adolescence. Read Manny Hernandez's review of Kathryn's book on TuDiabetes. ]]> http://www.type1mum.net/blog/2007/07/valuable_books_and_web_sites.html http://www.type1mum.net/blog/2007/07/valuable_books_and_web_sites.html linkPage Sun, 01 Jul 2007 14:29:28 +1000 Over one year later Wow - Once again I can't believe it's taken me so long to get back to this diary to finish it off. Life is busy with a beautiful fourteen month old boy and an energetic and imaginative three year old girl to look after. It's exhausting at times, but life is also indescribably gorgeous. I feel incredibly lucky to have my two precious little ones in my life and very grateful to my medical team, my friends and most importantly my wonderful life partner for their support during my two pregnancies and beyond. At my endocrinology appointment a couple of weeks ago I found out that my kidneys had recovered from the second pregnancy. The protein was 0.26, pretty much the same as it had been just prior to conceiving my son and even better than it had been prior to conceiving my daughter! So my kidneys have seemingly bounced back. Great news. Sometimes I feel as though I have three children. The third is my diabetes. I'm always needing to check... just what is this third child up to now? It's a wily child, an unruly child, and often it gets neglected in the busy immediacy of having to look after my two real children. My most recent HbA1C was 8.9 which is not great at all. Partly it's because I tend to eat late these days and fall asleep before being able to check that my blood sugar is settled for the night. Often my sugar levels are quite high on waking. My baby boy sleeps near me. When I wake to feed him at night the last thing I feel like doing is turning on the light to test my blood sugar. But that's what I need to do to get my blood sugars down again. That and to record my bsls. That is what has always helped. I guess tackling ye old tendency to under-insulinise would also help. But it does take some disciplne. I've had a couple of dreams lately about having an actual third child, but have no logical intention of doing so. I'm thirty-nine for a start. Perhaps this third child actually is my diabetes? I owe it to my children to get my diabetes under control again so that I can be around for them and healthy for them for as long as possible. http://www.type1mum.net/blog/2007/02/over_one_year_later.html http://www.type1mum.net/blog/2007/02/over_one_year_later.html 2nd Pregnancy Sat, 17 Feb 2007 15:46:22 +1000 Being on a drip.. grrr... At the risk of casting a shadow on what was a truly beautiful event, it was quite horrible at times, being hooked up to the insulin dextrose drip for the two days before the birth, day of the birth and morning after. The first issue was that the midwives could not find me a mobile drip. I knew in advance that I wanted to keep as mobile as possible before and after the birth. Partly because it helps you recover quicker, also because being immobile and having a caesarean (also probably having diabetes and kidney disease) increases your risk for developing DVT (Deep Vein Thrombosis) post birth. Mobile drips (where you can walk around but take your drip with you) were available at the hospital, but it was difficult for the nurses to track one down for me. It took them a day, so I was immobile. I think people thought I was mad (when I finally did get the mobile drip) the night before the birth and the morning of the birth when they saw me wandering the hospital corridors attached to my drip. But I was determined to be as fit as possible. Even the one day lying mostly immobile had affected my body making me feel a bit stiff and weak! The other thing that happened to me that seems to have faded into insignificance now but was actually scary and potentially life-threatening at the time, was that I was given a massive dose of insulin via the mobile drip accidentally on the day my son was born. Partly the problem resulted from the fact that the midwives did not seem to know how to operate this drip. For the entire time I was on the drip (thirty six hours before the birth and at least a day after) an alarm would go off intermittently indicating that there was some error. Some midwives would try to sort it out themselves. Others would get another midwife with more expertise to come an help, while others would simply flick at it and seem to be pressing buttons almost randomly to make the drip stop beeping! It was totally disconcerting and resulted in me not getting much sleep at all the night before the birth. But the scary incident happened on the day of the birth. The alarm went off to notify the midwives that my drip had run out of insulin. The midwife attached the new bag to the drip and entered the two required numbers into the drip machine. One was the amount of total insulin in the bag. The other was the hourly rate at which the insulin was to be infused. We did not realise it but she had gotten the two numbers wrong. Result: I was given a huge dose of insulin in a short time. The machine would have gone on giving me this amount (something like 60 units an hour) only the machine beeped again, causing the midwives to come in yet again and realise what they had done. So they switched the figures and set the machine up properly. The worst thing about this was that although they fixed the rate problem, it didn't dawn on them that they had just given me a massive dose of insulin. I started to have a hypo that felt like the bottom was dropping out of my universe and then my partner who luckily was there at the time, realised what had happened. I skulled a lot of lucozade and was eventually okay, but it was quite upsetting nonetheless. My obstetrician apologised to me the next morning and said that she would make a recommendation to the hospital that a protocol would be set up for this machine that would require two nurses to be present whenever the drip was being set up or an alarm was being tended to. It's so difficult in these situations, as the nursing staff are often under a lot of stress and time pressure due to staffing limits, but as my obstetrician said, had it been, for instance Morphine, that was in the drip, it could easily have been life-threatening. The other foul thing about being on the drip was the sliding scale used to determine how much insulin I should be having. It was really hard to come to grips with this after so tightly controlling my own blood sugar levels for so long using the pump. My sugar levels did definitely increase due to the two steroid injections but perhaps not as much as my doctors thought they might. On quite a number of occasions I was told that I would be given an amount of insulin by infusion based on the sliding scale calculations that was way smaller than what I would have given myself on the pump for the meal I was about to eat. I knew my sugar levels would rise considerably after this and it was extremely stressful knowing that this would pass over to my baby and more than likely result in hypoglycemia in his early hours. On a few occasions I gave myself injections of fast acting insulin to lower the sugars that I knew would result from the sliding scale method. I was not meant to do this but felt compelled to in order to avoid massive highs passing through to my baby. I also avoided eating some of the sweeter foods. My doctor assured me that the insulin dose required would be so high and the sugars so hard to control that what I ate would not make an impact, but I disagreed. I'm not sure that I would have done anything differently. But it was difficult relinquishing control at this time and I think in retrospect I probably would have tried to keep my pump on and adjust my own levels during this pre birth steroid period (in conjunction with my doctor). I feel I might have had a chance at keeping my sugar levels better controlled than they were. http://www.type1mum.net/blog/2006/09/being_on_a_drip_grrr.html http://www.type1mum.net/blog/2006/09/being_on_a_drip_grrr.html 2nd Pregnancy Sun, 17 Sep 2006 11:46:11 +1000 Beautiful Baby Boy! I can't believe it has taken me this long to write about my precious baby's birth... but there you go! Life with two little children is very busy!! My darling baby boy was born at 7.30am on 28th December, healthy and beautiful with his long eyelashes and full head of gorgeous dark hair. Thanks to my wonderful paediatrician, as soon as he was seen to be healthy and breathing well, he was placed straight onto my chest for a profound, loving and relaxed cuddle. Skin to skin contact with my beautiful boy. He just lay there for the longest time, curled up and content. As soon as I got to recovery I put him to the breast and he nuzzled and fed beautifully straight away. We fed him a syringe worth of the breastmilk that I had expressed for him in the previous week and he drank that too. This was to give his blood sugars a boost. As planned and suggested by my lovely obstetrician, my baby boy was taken gently out of me, his head lying on my tummy for awhile before he was totally born. So gentle.It was as natural a caesarean as I could have hoped for. To my delight, I was able to bring him back to my room with me rather than having him whisked away to Special Care for a day and a half which was what had happened with my daughter. I tested his blood sugars while the nurses watched at regular intervals and was advised by my paediatrician to make sure he got 30ml ** of expressed breast milk with each feed (every three hours) after he had fed from the breast. This amount was calculated based on his weight and was to ensure that his blood sugars were kept up. He was an amazing drinker and drank quite massive quantities really for a newborn! The steroids I had been on for the day and a half before his birth had indeed caused my blood sugars to be higher than I would have liked at times and I am sure this was reflected in the fact that he suffered hypoglycemia on day one. Still, his hypos were not severe and in fact most of them may not even have been hypos but the normal lowish blood sugar of the newborn. He was getting plenty of breast milk and his sugars stabilized. I was determined to avoid him being fed formula if possible, so was pleased to be able to keep him topped up on expressed breast milk and milk direct from the breast. Mind you, this involved me expressing quite a lot at each feed when my own stores of expressed breast milk from the previous week ran out. I managed quite an incredible amount of colostrum for day one but at one feed I couldn't quite get enough, so my wonderful paediatrician appeared with some Neocate formula. It contains amino acids rather than the whole protein so is used for instance in highly allergic babies who need formula. We used this once or twice. After his blood sugars had been stable for awhile I stopped the expressing and fed just from the breast. Interesting in hindsight how nerve wracking this was for me. I so wanted to make sure that his sugar was high enough and I couldn't see just how much he was getting from my breast. But going just to the breast was exactly what we both needed now and soon we were both confident. How lovely to be breastfeeding again. To feel all that lovely Oxytocin flowing though me again. I was the happiest person on the face of the earth. http://www.type1mum.net/blog/2006/09/beautiful_baby_boy.html http://www.type1mum.net/blog/2006/09/beautiful_baby_boy.html 2nd Pregnancy Sun, 17 Sep 2006 11:14:50 +1000 Steroids after all! Well, in an interesting twist of fate it looks like I'm getting a dose of steroids after all to give bub's lungs an extra helping hand in case he needs it. Not sure how I feel about this. A bit relieved I guess as I was worried about having a baby who wasn't quite ready to come out and this should at least help the lungs. But I'm pissed off that they are leaving it to the 11th hour to give me the steroids (just 36 hours before bub's birth) as it will almost certainly play havoc with my blood sugar levels and mean that bub will be born with a greater chance of hypoglycemia and that I will be hooked up to a drip for several days for insulin rather than being able to stay well-controlled on my pump. I would have preferred to have had the steroids a week before the birth to give my blood sugar levels a chance to restabilise. I mentioned this to my obstetrician a month ago before she went on leave and I mentioned it to my endocrinologist and the ob looking after me while the other one was away. No one seemed to agree with the idea of having me in hospital earlier. I think they think of the hassle factor ie this way there is just one hospital admission. But if we're really doing this to avoid bub having to spend unneccessary time in special care due to retained fetal lung fluid, shouldn't we also be doing what we can to avoid bub having to be in special care due to hypoglycemia? When I talked with a diabetes educator who had been a great supporter of my pregnancy on the pump last time (when no one in my city had had experience with it) she agreed that giving the steroids a week before the birth would probably be a better option. But with my obstetrician overseas it was virtually impossible to organise this. I'm concerned about the effect of the steroids on my kidneys and my breast milk. I'm concerned about extreme highs and lows which could be dangerous for me and the baby. I hope it will all be managed well, but it's still a bit nerve-wracking. So there you go, I'm heading off to hospital tomorrow night to get my first dose of steroids. I'll be remaining there until the birth a day and a half later, and then for up to a week after that. Wish me luck... http://www.type1mum.net/blog/2005/12/steroids_after_all.html http://www.type1mum.net/blog/2005/12/steroids_after_all.html 2nd Pregnancy Sun, 25 Dec 2005 18:35:27 +1000 Visit to my ob (just back from overseas) I saw my ob today. Just back from her overseas jaunt.. She thought I looked good (I was wearing my look good outfit and probably should have chosen something more middle of the range! No seriously, it makes a difference to the comments I get. One outfit and people say, wow are you having twins? and you look tired and the other outift and they say, wow you look great.) Anyhow getting carried away. Upshot: Initially she started talking about moving the dates back a bit so bub could be older than just 37 weeks when born. Then by the end of the appointment, after seeing that my ankles were swollen with the beginnings of oedema and my blood test results were drifting onto the downward slope, she said her gut feeling was that next Wednesday was actually the right date to go with. I have to get blood tests done tomorrow morning and she is going to talk with my endocrinologist and the paediatrician and then phone me to let me know the decision tomorrow afternoon (Christmas Eve). I suspect it will be all go for next Wednesday. I felt some relief at being closer to a decision, but after speaking with the paediatrician on the phone this afternoon I felt anxious and a bit sad again. He mentioned that retained fetal lung fluid and even hyaline membrane disease could both be present in a baby born at 37 weeks, although it wasn't common. The ob talked about being able to deliver my baby slowly even with a caesarean, letting his head lie for a minute on my tummy on the way out and giving him a bit of a squeeze as she pulled him out of me. The squeezing helped with removal of lung fluid she said. Doing everything as gently as possible and removing the placenta gently too. It was so good to have her talking about gentle and nurturing things in the context of a caesarean. I guess even in this high medical intervention situation I felt listened to. My desire for the most natural thing possible was being heard. She also said I should be able to get up to see my baby the night after he is born being wheeled up, which was reassuring to hear. I can't overstate how wonderful it was to have my desire for the most natural birth possible (even though it was a caesarean!) taken into account. And to have my obstetrician so willing and eager to work with the lovely, breastfeeding-friendly paediatrician. She had suggested him to me herself when I told her I was exceptionally keen to breastfeed. I also so appreciated the obstetrician I'd been seeing while my ob was overseas telling her how important the cord blood collection was to me and giving a really detailed handover to her when she got back from overseas. The paediatrician (at the appointment I had with him a couple of weeks ago) also spoke about the possibility of the baby being able to be with me on the ward if he was doing well. Wow. How different that would be. Still I fear for him being born early. I hope he will be alright and I really wish I had been able to be even better with my blood sugar control. The last HbA1Cs have been 6.4 and 6.5. Higher than I had with my daughter. Certainly not in the non-diabetic range. Hmmm. Fingers crossed. I would have my expressed colostrum with me. Hopefully together with my expressed or fed straight from the breast milk this would be enough to keep his blood sugars up. Once again, fingers crossed. We will see. Wow - We still haven't named him. We have been having a shocking time agreeing on boys names. Girls names were easy! Only four days to go... http://www.type1mum.net/blog/2005/12/visit_to_my_ob_just_back_from.html http://www.type1mum.net/blog/2005/12/visit_to_my_ob_just_back_from.html 2nd Pregnancy Fri, 23 Dec 2005 19:15:33 +1000 started expressing breast milk today! Yay! What a feeling of accomplishment it was today to find that I was able to express 4 ml of colostrum (early breast milk) for my baby! I am doing this so that if he needs a blood sugar boost or is unable to feed from the breast enough after the birth to keep his blood sugars up we will have a chance at feeding him breast milk rather than formula. I don't think formula is the worst thing in the world by any means, but given the fact that exposure to cow's milk protein or lack of breast milk _might_ increase bub's chances of developing type 1 diabetes, I'd like to avoid the cow's milk formula if possible. When my daughter was born she was fed formula straight away before her blood sugar levels had even been checked. I was shocked and disappointed as I had expressed my wish to breastfeed and avoid formula if possible. Apparently what happened with my daughter is not even standard practice. They only give formula if the baby's blood sugar level is low. Anyhow... I will probably have no more than 30ml of expressed breast milk stored for my baby by next Wednesday so they might still say he needs more. Or maybe by some miracle he will feed really well from the breast straight away and be brought to me for feeds regularly. Who knows. It's tricky too. I don't want to sound radical with respect to the breast milk and bonding issue. My main concern is that the baby is doing well, breathing and everything else wise and I would never want to jeopardise his blood sugar levels. Being born just on 37 weeks there is a chance he will have retained fetal lung fluid and need oxygen for between 3 hours and 3 days. Being separated from your baby after the birth can be so traumatic. The staff last time were very good apart from the formula incident (paediatrician's decision) but feeling out of control and that your wishes are not being taken seriously and heard can be very upsetting. Anyhow... once again... very excited to have got 4ml of colostrum this morning. Had intended to start collecting colostrum 2 weeks before the birth but have only gotten around to it now one week before. At first I found no milk was coming out. Then only a drop or two. At first, the colostrum was dripping onto my hand but not into the little medicine measuring container I was using to collect it and I didn't actually see it. I was about ready to give up in defeat when my lovely and well-seasoned husband came to my aid to help and encourage. I realised I needed to hold the container right up against my skin and that some milk was actually slowly trickling out. It gave me the confidence to continue and I'm glad I did. Today I tried to visit the special care nursery after my ultrsounds and CTG monitoring, but was told by the midwives at the ultrasound place that the special care staff were too busy to see me. In the end I went up just to peek in through the window. Just to get a feel for where my baby would probably spend its first day at least. I went to ask a receptionist where the nursery was and then just burst into tears. That was when the special care nurse came out and saw me. She was friendly and caring but I feel pretty soon in some way dismissed me. I can't put my finger on it, but as I now have to go and lie down (I've been on my feet all day and my ankles are swollen) I will paste what I wrote about the experience to a friend of mine in an email... Tomorrow at 1pm I'm due to see my ob who just arrived back from overseas today. It's going to be an important appointment as we'll deciding whether or not to go ahead with the caesar at 37 weeks. It's going to be interesting to see what happens with the expressed breast milk in my case. They give babies of diabetics about 20-30 ml per feed (eight feeds a day) of formula and I bet (unless my paediatrician tells them to do otherwise) they will say the colostrum we have collected is not enough and needs to be supplemented. In my understanding colostrum works completely differently so that it's actually some active components of the colostrum that cause gluconeogenesis (ie causes the baby's liver to make it's own sugar) so surely a much smaller amount is required to increase the baby's blood sugar? I can't believe how difficult it was to just have a chat to a staff member in special care today. It was only the fact that I went up 'illegally' that I was able to talk to someone. The midwife downstairs was just so rude to me, saying that they only organise tours for public patients and if my doctor thought it was important for me to visit special care they would have organised something for me etc etc etc. I tried explaining that all I wanted to do was see where my baby would probably spend at least the first 24 hours of his life (as I will likely be bed-bound for that period and unable to visit and will not have time prior to the caesar to meet, visit or talk with anyone) and that I also wanted to ask them how they would like me to supply the expressed breast milk to them to feed the baby. But I'm sure all they saw was 'trouble-maker'. Grrrr!! I don't want to scare you... the people up in special care are generally very lovely and perhaps they thought I wanted to deprive my baby of enough glucose for it's brain or something, but it never ceases to amaze me how hard it is to feel that you have rights or even valid input into your baby's care. I think the woman was even suspicious about the quality of the expressed breast milk we are freezing!!! grrr... sorry I'm raving. I also had two very nice interactions. The woman who did my scan was my favourtie and complimented me on everything as usual (she always says how well I look and how well bub looks and tells me I'm doing a great job with my diabetes) and the consultant who I asked to see was lovely too. Hope you are having a good day :-) http://www.type1mum.net/blog/2005/12/started_expressing_breast_milk.html http://www.type1mum.net/blog/2005/12/started_expressing_breast_milk.html 2nd Pregnancy Thu, 22 Dec 2005 20:27:26 +1000 Braxton Hicks at 36 weeks Headaches this morning and last night. Crampiness and very frequent Braxton Hicks contractions for the past two days (but seems to have eased off now). My ob noticed a fair bit of uterine action in my CTG scan last Thursday, asked me if they were regular and said 'oh well if you go into labour this weekend we'll have a baby!' My old ob has been terrific and I feel very reassured and lucky to have her looking after me at this time. I appreciate her up front, honest, tell it like it is, manner this time around. She's been very supportive, helpful and understanding about my desire to collect cord blood for stem cells. The thought of going into labour earlier than even the planned 37 week caesarean is something I truly have not given enough consideration to. I assumed my mum could drop everything and drive the one hour to be here and look after my daughter until my husband's parents arrived from interstate. But talking to her on the phone yesterday makes me think this is not to be the case. She works full time and I don't think would consider leaving work as an emergency if need be. This has thrown me into a panic. I now have offers from a few friends to look after my daughter if I go into labour early which is lovely, but none so far are really great options for her. ie no one has offered to come here and stay at our house for say 24 hours, where she will feel more comfortable than at their house. And none of them have looked after her for an extended period of time. My friends are also about to go into labour themselves or else have one or two children of their own to look after, so asking for their help at this time is also pretty hard. So far I still don't seem to have the oedema and my blood tests last week are still good, but 'drifting'. I am due to get more today. See my ob tomorrow and have a growth scan on Thursday. In addition to the two days of cramping (which I have assumed is probably just normal: baby pushing more against my cervix with a few more braxton hicks thrown in type thing) I am now really vague in the head. Spacey. Perhaps it's a bit panicky. It's hard to concentrate. Will get my blood pressure checked at the Chemist today just in case. I have sent details of my daughter's routine to my mother in law, am depressed that so many of the things I really wanted to get done before bub 2 arrived are still not done, but there you go... and to be honest I feel guilty that I have not given enough consideration to the new baby. We still have no agreed upon name and I am waiting to get baby clothes sent up from my in laws. We sent ours down to my sister in law when she had her baby a year ago. So I'm a bit stressed that bub doesn't even have much to wear yet. Apart from that I guess everything's fine. I'm off to finish packing my hospital bag.... http://www.type1mum.net/blog/2005/12/braxton_hicks_at_36_weeks.html http://www.type1mum.net/blog/2005/12/braxton_hicks_at_36_weeks.html 2nd Pregnancy Mon, 19 Dec 2005 11:05:42 +1000 35 weeks - still feeling good Well it's 36 degrees celsius here today and I'm 35 weeks pregnant, but I feel positively spritely compared to how I felt at this stage with my last pregnancy. When I saw my docs last week my blood pressure was still good (130/80) and there was only the mildest of oedema (no more than most women experience). I don't think this has changed but it will be interesting to see what happens at my doctors appointments tomorrow. Last week my protein had gone up to .96g per day, but this was still at least three times less than it was this time last pregnancy. I had put on a bit of weight (now up to 62kg) but this is only 10kg so far this pregnancy which is pretty good and doesn't necessarily indicate oedema. My last HbA1C was 6.4. I've had 6.3, 5.7, 5.9, 6.5, 6.1 and 6.4 this pregnancy. But last pregnancy I think I ranged from 4.9 to 6.3. So my sugars are a bit higher. Partly this is due to the hectic nature of looking after a toddler. But partly this is also due to me being quite preoccupied with getting things done, which makes me feel a tad guilty. I suppose if I was only concentrating on my diabetes and the pregnancy it's possible I could have got even lower bsls. It would have been nice to have kept the Hba1Cs under 6.0 (non-diabetic range). My doctor tells me not to worry, it won't harm bub at this stage. The baby appears to be spot on normal size and doing well. Getting the control as tight as possible just before the delivery though will be a worthy goal, he says, as this will reduce the likelihood of my baby having hypoglycemia in the early days. I had intended to start expressing breastmilk today but have been a bit lazy (busy) on that front. I hope I can collect some colostrum in advance though as it will help to keep bub's blood sugars up in the first couple of days, especially if I am unable to feed from the breast straight away. In terms of steroids, I have decided not to have them unless my ob strongly encourages me to when I see her when she returns from overseas (five days before the booked caesar). I've decided this mostly because my endo, whom I trust more than anyone, really thinks it's unnecessary. Other reasons are that I prefer to avoid a drug if I can, I don't like the idea of having to spend up to three extra days in hospital hooked up to a drip (for insulin, as steroids can cause a huge increase in insulin requirements), and the fact that if it was to be done it would have to be done in the days before bub's birth and I don't really trust 'the system' to keep my blood sugars under control by drip (therefore risking hypos in the newborn). Quite frankly I also hate being 'at the mercy of nurses' (although many of them are excellent), I also hate the thought of being away from my two year old daughter any longer than is necessary, and basically I think I'd rather get other things done at that time than be admitted to hospital if possible. Having said all this, I would do it in a flash if I knew in advance my baby had a high chance of requiring days of oxygen after the birth due to immature lungs or retained fetal lung fluid. Both my endo and my former ob (whom I'm now seeing) seem to think I'm much better having the baby at 37 weeks, when I've been booked in, rather than trying to push it to 38. The fact that the two of them will be around that week and on leave when I am at 38 weeks is an important factor to consider. But on the other hand I feel wierd too having my wee one extracted this early. Perhaps I should just count myself lucky. http://www.type1mum.net/blog/2005/12/35_weeks_still_feeling_good.html http://www.type1mum.net/blog/2005/12/35_weeks_still_feeling_good.html 2nd Pregnancy Wed, 14 Dec 2005 19:21:30 +1000 33 weeks - When to have the baby? When to have the baby and whether or not to have steroids for a 37 week delivery to ensure the lungs are mature. I laugh when I read the subject title for this post as I realise that bub could just decide to make his own early entrance and surprise everybody! But I just wanted to follow on from my previous 33 week post where I rave about whether or not to have bub right on 37 weeks or wait a bit longer.... According to one of my doctors... 'They are just as good out as in at 37 weeks. Trying to wait until 38 weeks could be riskier for you and the baby. You are booked for the caesar mid-week (Wednesday) when there will be plenty of staff around (paediatrics etc). You don't want to be going into labour on New Year's Eve when there are fewer staff and people are pissed'. (NB The last bit was said as a joke but stilll...) Endocrinologist on the topic of steroids... 'I wouldn't bother. Chances are they won't be necessary anyway (ie bub's lungs would be mature enough anyway) and it's a hassle for you (two extra days of hospitalisation) and will muck up your blood sugars. If we did do it the best way would be to admit you two days before the caesar, give you two courses of steroids and have you on an insulin/dextrose IV infusion and a sliding scale to keep tightest possible control of your blood sugar levels. http://www.type1mum.net/blog/2005/12/33_weeks_when_to_have_the_baby.html http://www.type1mum.net/blog/2005/12/33_weeks_when_to_have_the_baby.html 2nd Pregnancy Sat, 03 Dec 2005 08:39:32 +1000