Needing some support :(

Diabetes and Pregnancy Trying to Get Pregnant
1

Hello to you all. I am new to this site, and after reading extensively through the posts, I am SO glad that I found you all. My name is Lora.. I am a 25 year old T1 on the Omnipod pump. I was diagnosed just before my 21st birthday while stuyding for finals in undergrad... yes that was EVENTFUL! Anyway, I have been with my husband for about 10 years - married in June of 2009. He has been with me through this emotional/physical rollercoaster of diabetes. He also happens to be a paramedic which makes things extremely handy when I have an episode. I am what my doctors have labeled as a "brittle" diabetic. I have the highest of highs - sometimes my glucometer will just read "high" - and the lowest of lows - low 20s. It seems like no matter what I do, I just cannot get a grip on it. My a1c last year was 12.4.. my a1c this past month was 10.1.. I know that is horrible, but I am really working on getting it down, and it's definitely an improvement.. right?!

Now to the pregnancy issue... Yes, I was one of those girls that just-so-happened to watch Steel Magnolias right after diagnosis.. It sent me into a emotional tailspin.. I thought, I am going to be that girl - I have the wost luck! I felt like I would never be able to have a baby.. That it wasn't fair to my husband (then boyfriend) to sentence him to a life without children because of my inadequacies. I felt so, so low. After a few years of coping with the fact that my life had changed forever due to my diagnosis, thoughts about children weren't at the forefront of my thoughts. Now, however, the topic has risen between my husband and myself. I know that my a1c needs to get WAY under control, but I thought.. this is something I can do.. I tried to be positive and think to myself that I can do this! So, I made an appointment with my specialists to discuss the potential. My endo said that I needed to be around a 6 for at least 6 months and she wanted to run a full chemistry panel to make sure there were no issues with my kidneys/liver etc before giving us the okay to TTC. The chemistry panel came back great.. although it said I had low CO2.. weird? - Side topic.. anyone know what this means? Anyway, off I went to the OB with my positive outlook and encouragement from my endo.. When the conversation started with my OB, she asked me what my endo said.. after I relayed the information she flat out told me that I would have to seek another doctor - a specialist with high risk if I were even thinking about getting pregnant, but that in her opinion, I had NO business even thinking about pregnancy.. that if I were to get pregnant today, she would suggest an abortion for me. That even if I got my a1c in range.. that the statistics were high that my baby would have developmental issues, I would go into kidney failure or die.. Now, I knew that I would hear some pretty tough things, but I guess I was expecting something a little different.. I mean, EVERYTHING she told me was EXTREMELY negative.. abortion? really? After going home to crawl under my covers in the dark and crying my eyes out, I am now able to talk about what happened, my situation, and reach out for a support group.

I don't really have that much of a support system that UNDERSTANDS what exactly I'm going through and feeling.. My mother suggested a hysterectomy.. My husband says he doesn't understand why I'm so sad (my doctor wrote me a prescription for lexapro - haven't really noticed much of a change).. he says he loves me child/no child.. diabetes/no diabetes.. but I desperately feel the need to make this happen for the both of us.. He has ALWAYS talked about wanting kids.. Just one of those guys that was born to be a daddy.. and I feel a deep desire to at least try and do this for the both of us.

SO.. please tell me your stories of success.. please give me your wonderful advice.. I desperately need it. Thank you in advance. Once again, I'm so glad I found you!

2

LoraB, I am not even a member of this group but I read your post and had to respond....so I joined. Hey, I have 3 kids, I can do this :) Listen, first and foremost let's just talk about your levels. There are many people on here who talk about their great control and their levels and it is inspiring, but I promise there are just as many, if not more, that are like you and I and just can't get things right. I am 36 and have been Type I for nearly 22 years and I was "High" yesterday and 38 and then back to "High." Yep, in one day! We can talk more if you ever want to, but awhile back I adjusted my basal rates and it made a HUGE difference (and I have been titled "brittle" since the late 80's). My issue is really about bolusing for food, but I digress. You need to know that we all struggle, we all get depressed, we all have a tough time with the fact that we will always battle this. No one, and I mean NO ONE understands this if they aren't diabetic, nor can they. You can come to me anytime with anything and if nothing else, I'll always listen.....or read. I'm willing to bet there are many others on here who will say the same.

As far as a baby goes, I will admit I am not a professional baby doctor or anything, but I would say to take that horrible negative experience and throw it out the window at a high speed on the hiway. Are there concerns and challenges? Yes, we have concerns and challenges eating at Taco Bell for Pete's sake. However, there are so many diabetics who have had children without any issues. Find another doctor, get referrals from friends and online and make sure they know you are diabetic before you see them. I pray that you meet the right doctor for you and your family!

Diabetes affects the hormones in our brains. Depression is almost a given in any Type I. Many people on this site have been on antidepressants for years and years. I'll be the first to confess that I've taken 2 simultaneously for years. You have valid feelings and real concerns, but it sounds like you have a husband who supports you and will stick with you. Read my blog (if you've made it this far you might be interested) about depression and see the replies. I'm sorry if this was a bunch of wooey to you but it's from my heart and it strikes a chord with me and I REALLY hope that you can shake it off and be and do whatever you want to.

Are you a diabetic or do you simply have diabetes? Sending all my positive thoughts......Todd

3

I'm so glad that you found us Lora!!

Pregnancy with type 1 diabetes IS doable. There are many of us on this forum who did it! I have a five month old, perfectly healthy son!!! It is a lot of work, but if you are ready to put forth the effort, then it is possible!!

First, listen to the ENDO and NOT the OB-GYN. One thing he/she said is true: you will need to see a high-risk OB-GYN, but that is true just because you have type 1 diabetes. We all see high risk OB-GYNs (called perinatologist). Some people see a regular OB-GYN and then only occasionally see the perinatologist -- others only see a perinatologist.

The only thing that I know of that means that you should not get pregnant is if you already have complications (eyes, kidneys). Also, there are some doctors that will recommend an abortion if you get pregnant with a really high A1c, but that is not standard (at least I hope not!). I have heard many success stories when women got pregnant with very high A1cs and still managed to deliver healthy babies.

BUT you do need to lower your A1c one step at a time. I was never able to get below 6, but my endo let me start trying to conceive when I had been below 6.5 for a while. Notice that I say my endo "let me" -- for us it is normal to wait for your endo's permission to try to get pregnant --- what we call the green light!!

Actually I could really relate to reading your story. I was diagnosed at the age of 21 while in college. I wasn't yet dating anyone seriously, but the issue of future pregnancies weighed heavily on my mind. People made ignorant comments about how it was too bad that I can't have kids. I knew it wasn't true, but still it put me in tears many, many times. In truth, I developed a fear of pregnancy. It took me a few years to overcome that after I was married, but I managed :)

For now, you should focus all your energy on getting your blood sugars in range as often as possible. Choose one time of the day to focus on. For me the biggest thing that helped was logging. I tried to get my A1c below 7 for years and it didn't happen until I started writing everything down. I write down my blood sugars, boluses, what I eat, etc. Then I take this to my endo and she has a lot of data to help change the settings on my pump and make suggestions.

Another thing that really helped me was to buy a good scale and weigh all my food. I got into this good habit before pregnancy and I then realized how many time I was underestimating my carbs. Now I continue to weigh my food when I eat at home. (During pregnancy, I always ate at home OR ate out and brought my own carbs! I would bring bread, rice or pasta with my that I weighed at home. No one ever made a comment :-) )

Many of us found that the secret to lowering the A1c was to work on your postprandial (after meal) numbers. If you go high after eating for a couple hours, then that means that you are high for at least 6 hours a day. Many of us found that it helped to wait after bolusing before eating (start with just 10 minutes, then 15 minutes, ...), BUT you need to be VERY careful about lows then. When you first do it, measure your blood sugar every 5 minutes and if you see a drop of more than 5 mg/dl, then eat immediately. For me, it took about 20 minutes to begin to see a drop.

You will also want to make sure that you are not overreacting to lows. If you have a low and you swing too high afterwards, then cut back on the amount of carbs that you are using or try treating with ONLY glucose tabs or fruit juice (to avoid overtreating and to make sure you are getting very fast-acting carbs). I used to treat my lows with chocolate. I was sad to give up that habit, but a low treated with chocolate meant a high a few hours later -- a low treated with glucose tabs and fruit juice didn't.

You will need to find a new OB-GYN. Did you ask your endo for a recommendation of a high-risk OB-GYN? Often they work together and she could recommend one. Sometimes the perinatologist will not see you until you are actually 12 weeks pregnant (so don't be surprised if you can't get an appointment). Then you will just need to find a regular OB-GYN that is supportive.

This is probably obvious, but: Until your A1c is lower, be very, very careful NOT to get pregnant. High blood sugars in the early weeks of pregnancy (before you would even know you are pregnant) can cause damage to our developing babies.

I hope that you are able to get over the ridiculous stuff that the OB-GYN told you. Feel free to send your mom some links to our site about all the successful, healthy pregnancies with type 1 diabetes!! You will need to work really hard, but it is SOOO worth it!!! Apart from very careful blood sugar management, I had a very smooth pregnancy.

4

I too was diagnosed type 1 at university, I was 23 (2000) at the time and it was a bti of an adjustment, but luckily noone ever told me I couldn't have children so I never considered that being a problem. My control for years was terrible and in 2006 I moved to Canada when I married a Canadian and ended up living in a small isolated town. This meant I was only seeing a GP who I just went to to ask for prescriptions. My diabetes management was all guess work. In 2008 we moved to a slightly larger town and I started seeing a diabetes educator nurse (CDE) as well, although she was still in training. I also saw a nutritionist but still really didn't understand how everything worked. In 2009 I got pregnant and was referred to a high risk Ob-Gyn in a town 5 hours away. When I went down to meet him with an A1c I think of around 10.5 he put me in hospital for 5 days to completely overhaul my insulin regime. Through the whole pregnancy I saw him once a month but had to email him an blood glusoce log every week for him to make adjustments. He also had me see the nutritionist while I was in the hospital and she was the first person to ever teach me about carb counting and matching carb units to insulin. She wrote out a carb intake plan for me to stick to throughout the pregnancy and that made things a lot easier for me. By the end of my pregnancy my A1c was down to 7.0 which is the best I had achieved since diagnosis. My son arrived completely healthy at 35 weeks (although he was already 8 lb) and is now a very active 22 month old. During my pregnancy my Ob-Gyn told me he wanted me to get onto an insulin pump before I considered getting pregnant again. This resulted in my first and only visit to an Endo since I have been in Canada (he is about 12 hours drive away). He did the approval forms I needed for my insurance and I started on my pump in October 2010. This year I got pregnant for the second time and for the last two months have had my A1c down to 6.4 which is amazing for me. My Ob-Gyn is really happy with this and I continue to work closely with my pump educator/CDE (who is in the same town as my ob-gyn) and a nutritionist (also in that town) to keep things in control as much as possible. It is a lot of work and even with my control being much tighter this baby is tracking even larger than my first! My ob-gyn expects I will probably deliver early again as my waters broke so early last time and if this happens once the chance of it happening again is high, we get to spend this Christmas in a hotel room so we are close to the hospital but I know his baby will arrive safely and healthy too. If I can do this you can absolutely do it too!! Get a new ob-gyn, work hard on your basal rates and CHO ratios and monitor your carb intake. You can absolutley be a wonderful mother and give your husband beautiful healthy children!!

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Hey Lora,

I want you to know that I joined TuDiabetes just so I could comment on your thread. I saw a snippet of it on twitter. Anyway, I just want you to know that if you want a child it is COMPLETELY possible to have a successful pregnancy and a HEALTHY baby at delivery. There are lots of horror stories out there but what you need to hear are the success stories.
My age at diagnosis was very similar to yours. I was diagnosed at 20, married at 22, and conceived my first child at 25. When I was diagnosed, my doctor didn't bother to take my A1c because he knew it would be bad. Instead, he gave me three months on insulin and then took my first one. I think it was about 12% or in the high 11's. He was a pretty good doctor but he had been doing it for a long time. His nurses were wonderful and they worked with me very closely in monitoring my blood-sugars and insulin doses. I had to convince my doc that I needed the insulin pump. He thought of it as a badge telling everyone that you're a diabetic. I thought it was a way for better control. I struggled with morning highs (dawn phenomenon) for a whole year. One year and two months after I was diagnosed, I was put on the pump. It helped tremendously. My doc retired and I found one that was AMAZING.
He was very aggressive with my insulin doses and prepared me for conception by helping me to get my A1c down. I met with him often. My a1C was about 6.0-6.5 when I conceived my first child. It got better with the pregnancy as I was checking my blood sugars frequently and correcting any highs often.
My first child was born a healthy 8.5 pounds at 38 weeks. He was delivered via c-section due to labor distress.

My second child was an even more successful experience. I was put on the CGM for absolutely ZERO out of pocket charge. My insurance company approved it because of the pregnancy. I think I was on it for a little while before too. Anyway, my a1c at conception was 5.8 or something awesome. Not meaning to brag but it was something I REALLY WORKED HARD FOR. And it paid off in two beautiful babies. My second son was a scheduled c-section at 38 weeks. He weighed 8 pounds 10 ounces and neither of my kids had any insulin or blood sugar problems at birth.
They both had jaundice but that was something pretty easy to handle.

I will tell you that it was pretty tough work It was something I had to think about constantly. I checked my blood sugars nearly every 2 hours for 9 months- maybe longer. The CGM was awesome because I never had to wake up in the night to check unless something was wrong with it.
As the baby grows, your insulin needs are increased. Dramatically. By the end of the pregnancy, my basals were at about 300% and my carb ratios were also very low- like 1:4. As soon as the baby comes out, your insulin goes right back to normal. That's kind of weird but it works out okay.
I had to do 24 hour urine collections a few times each pregnancy.
I worked with three doctors throughout the pregnancy. My OBGYN, my diabetes doctor, and a high risk specialist at one of the bigger hospitals. I saw my Diabetes Dr. every 3 weeks, my OB every 6 weeks and toward the end of the pregnancy, did non-stress tests twice a week. I also increased my Dr. visits (to the other 2) more toward the end of the pregnancy. I think they were checking the fluids and such.

I know this is long- but I just want to support you.

I had an experience sort of similar to what your OB told you but get this, I was 8 months pregnant! He had never met me before. He measured my baby 1 week before I was to deliver and told me everything he SHOULD NOT HAVE. He said my baby was "macroscopic", and that I could kill him with one high blood sugar. He said that I should never have gotten pregant in the first place, etc.

THEN, when I faxed him my sugars, insulin doses, and changes that I'd made in the last TWO WEEKS ALONE. He recanted everything he'd said. said I was doing great and that the baby would be fine.
WHAT A JERK. HE NEVER APOLOGIZED.

My point in telling you that is that you can do it. No matter what they tell you. BUT you need to get supportive docs that are on your side. I told my OB before my second pregnancy that I wanted to see THE SAME doc specialist the entire pregnancy because of my previous experience. He arranged it that I would see the specialist at my hospital and that it would be the same one each time. It was a much better experience and everything was great.

You can do it!
I am here to support you.

email me if you need

sugarfreesweetie@gmail.com

lots of love

Jen

6

Todd -

"Are you diabetic or do you simply have diabetes" - wow. That really resonated with me. I can't thank you enough for your supportive and encouraging words. It's nice to know that I'm not the only one going through the highs and lows. I will definitely read your blog, and hopefully find another sense of support with the sense of sadness this whole isse brings me. Thank you again.
Lora

7

Thank you SO much for the advice! I have too, have found that after eating is the worst time for my highs.. I'm now keeping a log, and plan to take that to my Endo. Hopefully, this will shed some light if I need to change my IC ratio etc. I haven't asked my Endo to reccommend a high-risk OB-GYN, but I have an appt in Dec., and I definitely will!

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Curious, what did you limit your carb intake to? Your story is so inspiring.

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Jen,

THANK YOU THANK YOU THANK YOU. Seriously. This is exactly what I needed. I am so happy for you that you have two beautifuly children. I am REALLY trying to keep my numbers as low as possible - I checked 20 times yesterday - so that my story can be similar. It just seems SO hard, even when you are checking that often. I am experiencing headaches pretty much non-stop since I have been lower. Do you experience something similar to that? I attribute it to my body not being used to being so low - when I say low, I mean below 125.
Again, thank you for your response... it really means a lot.
Lora

10

The nutritionist created a chart for me based on my pre-pregnancy weight and size (I am 6' tall) which worked out to the following: Breakfast 3 1/2 CHO units (each unit = 15g CHO), Lunch 5 CHO units, Snack 1 1/2 CHO units, Dinner 4 CHO units, snack 1 1/2 CHO units and Bedtime snack 1 CHO unit. The meals were further borken down on the chart into types of CHO units (fruits, grains and starches, dairy) and included guides for other foods (fats, proteins, vegetables). Having it set each day and always eating the same amount made the control on MDI a lot easier as my days were more consistent. Obviously not all carbs hit you the same way |(something I have learned even more since being on my pump) but I learned which things would react too much or too little and could combine foods to give even more consistency. If you are working with a nutritionist they should be able to divise a similar plan for you to get you started at least. :)

11

Lora -

Be patient with your body. As you approach your "new normal", you're body IS going to have some adjustments, including feeling hypo at perfectly reasonable blood sugars (by medical standards). Headaches may be a symptom that you have as well. Never was with me, but we are ALL different. I think that's why the one-size-fits-all recommendations/threats/horror stories we sometimes get from doctors are so very, very frustrating.

Also, be patient with yourself. Even when you are seriously trying to do everything right, there will still be Very Bad Days. That doesn't change once you're A1c's are regularly below a certain level. I have had sudden bouts of insulin resistance that last for a couple of days and then things go back to normal. For no good reason!

I have been tightly controlled for a looooong time, after surviving college with HORRIBLE A1cs and rarely, if ever, testing. Even when I started REALLY working on things, I had a terrible time getting my A1cs under 7. That's when I went on a pump. That being said, knowing what I know now, a lower A1c would have been possible on shots - I just didn't have the right tools or knowledge base at the time.

I don't want to brag, but just offer perspective. I haven't had an A1c over 6.2 in seven years, am 39 and nearly 30 weeks pregnant with my FIRST child. My A1c is 5.0 right now, which seemed like a fantasy just a few short years ago. It is hard work, but so very, very worth it. And yes, I still have the occasional high blood sugar (or 10) with a 5.0 A1c, but I don't suffer from lows and hang out around 70 all day.

The most important thing, at first, was making sure I went to bed with a blood sugar of 90 or a little lower, and waking up around 70, which meant typically 7-8 hours of perfect readings, which is ONE THIRD of your average day.

You can do it, too. You're young, haven't been diabetic all that long, motivated and it doesn't sound like you have any diabetes-related complications that would make pregnancy more difficult or downright dangerous on your body (like it did in Steel Magnolias).

Much love and support, and come back with questions at any time!

Casey

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This post makes me wish you lived near me! I have an amazing endo who is a type 1 on a pump and has had two kids while on a pump. I am 10 weeks pregnant with a current a1c of 9.7 and am using u500 highly concentrated insulin in a pump. I was recently turned away by the maternal fetal specialists who managed my diabetes during my last pregnancy (I have a 15 month old) because they are not supportive of my use of a pump. They would like me to continue split dosage shots between long and short acting insulins and flat out told me the pump would not work for me. The 10-12 shots a day were really hard on me and NOT WORKING due to my extreme insulin resistance. They could not have been more wrong!! My sugars are beautiful now,,I found the right endo! I can't wait to test my a1c in a few weeks, I feel confident it will be less than a 7. I had it down to a 5 during my last pregnancy. I am type II but my endo is amazing, a type i and would never treat you the way your docs have. The director of the metabolic center where I go used to be an ob/gyn before he became an endo,,they are wonderful with pregnancy. Please look for a pregnancy friendly endo.

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You are welcome! I am so glad that it has helped. I agree with what CaseyK has said too! Good advice. You will need some time to adjust to the new levels. But, you will feel better when your A1c is lowered. Keep at it but don't get too discouraged. Look into the CGM. You may be able to be approved as a tool to help with conception.

Good Luck!

14

Do NOT listen to all of the negativity...surround yourself by positive people. I get scared about my kids getting diabetes, too. However, my mom doesn't have diabetes and two of her kids do. There is no telling what your kid will and won't have. My aunt has an autoimmune disease that is very rare, and she swore she would never have children in fear of them getting the same thing. She had one little girl who is the most precious thing ever! She is seven years old, healthy, and we can't picture life without her. Find a doctor who will support you and let them know that you want to get under control. I would be upfront and tell them that you are struggling with a lot of the negativity. I was also diagnosed at age 20 in my last year of college. Roughest year of my life. My husband and I have been together for 10 years also. We have a lot in common! You found a great place on here! Everyone is so helpful and positive!