Planning for a baby and looking for support

Hello Everyone!
I am 28 years old and have been a T1D for 16 years. When I was diagnosed and pregnancy was discussed, I did not really pay attention nor knew what to ask aside from “would my baby have diabetes?”. Now that I am older I am ready to dive into the topic of T1D and pregnancy. I have been seeing a lot of negative stuff (same every one else has been saying), and while it is important to understand the risks I would like to see more “solutions” or to see what others’ journeys have looked like. I cant believe that I have known about this site for so long and today was the first day that I took the time out to thoroughly look through it.
My diabetic career hasn’t been a pretty one. I have been in DKA more times than I can count (probably in the double digits). To get on the insulin pump my endos told me I needed to get better and in just one month I went from a 14 A1C to a 7.4% which was amazing but that was when I was diagnosed with diabetic neuropathy. I think a part of me is scared to get back under control and for something else to go wrong. I have been inconsistent with my care, I have struggled with depression and keeping myself healthy, I know that I need to do better but it is so hard! Now that I want to have a baby, I need to finally overcome my struggle and be consistent. This is why I am giving myself some time, planning for a positive test at the end of next year. This is why I want to start doing my research, get back on the wagon and start my work NOW.
While looking for research I realized that there is a lack of representation for us T1D future moms, which is why I came up with the idea of starting something. I want to document my journey from the beginning. I welcome any suggestions, advice, support from everyone (positive things only please-- not to be confused with withholding the truth). I found out about the Balancing Pregnancy with Pre-Existing Diabetes book and welcome any other suggestions for other books to read. If anyone is planning on embarking on this journey and needs a buddy as well.

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Hey there, I highly recommend the book Type 1 Diabetes and Pregnancy by Ginger Vieira and Think Like a Pancreas by Gary Scheiner. The combination of the two books helped me get a handle on my basal rates and bolusing. As you said, you defintely want to get everything under control before having a baby. Find a great endocrinologist that you like and work closely with them. You can do it!

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Hey Jessica! Thank you for suggesting book.

Thank you so much! I got the Type 1 Diabetic and Pregnancy book, it has been really helpful! Just waiting on Think Like a Pancreas to come in.

Hi good morning, I came across your post and OMG your story sounds so similar to me. I’ve been a Type 1 diabetic for 38 years i was diagnosed at the age of 2 years old. I had a lot of ups and downs with my sugars where like you i was DKA so many times i lost count. but about your concern of wanting to have a healthy and safe pregnancy. I had 5 pregnancies but ended up losing 2. but thank god i was able to bring 3 healthy babies into the world. my oldest is 10 years old, my 2nd born is 5 years old. my youngest is 11 months old. I had a few set backs of low and high blood sugars it happens but as long as you and your doctor work together you can have a healthy and safe pregnancy. I use to always have people say you poor controlled blood sugars so why would you put your life at risk by getting pregnant, but i proved a lot of people wrong and now i have 3 beautiful healthy kids with no health issues. so when the time is right it will happen just don’t rush yourself and just make sure you start working on taking better control of your diabetes.

I’m an RN, CDE and T1 x47 yrs and understand your realizing u want something more. As a kid I was in dka a lot as well, then became rebellious and did what I wanted. I was always being told I wasn’t going 2 make it out of my teens. I was depressed, anorexic, and started developing background eye changes. Needless 2 say I’m still here w 2 grown kids. In my career, I’ve specialized in working w high-risk pregnancies bc I felt I could help others like myself. Putting off pregnancy until u improve your control is smart. I did the exact thing and read all I could. The one book that really helped was from the ADA. I think it was called Pregnancy and Diabetes. U can go online or call 2 find more info. Also chk w JDRF.
I got my A1c to 7 but my docs told me that was still 2 high. Under 6.5 is recommended but I know realistically it’s hard bc of all the hormones and stress. Fastings, 80-120 and lots of bg monitoring. W me, I obsessively tested about 10-20x day, watched everything I ate and journaled everything. Every diabetic pregnancy is different. Important 2 remember. On posting boards, women will post their perfect bgs and non diabetic A1cs. You’ll feel horrible about yourself and terrified. Don’t. After having 2 kids and working w a lot of T1s, everyone is truly different. I’ve been called Brittle since I was a kid bc I was so hard to manage, even though I did everything I was told. Pregnancy made it worse but I knew I had 2 for a healthy outcome. My 2nd was easier. Some of the things I had were rescue lows that happend so fast, I didn’t know what happened. It was new bc I never got that low. I developed preeclampsia both times which I notice happens a lot w T1 mom’s. But these r my things, and may not happen 2 u. The good news, bc I continued 2 maintain tight control, the eye changes healed, and I haven’t been in dka 4 over 30 yrs. When I first held my daughter I never wanted 2 leave her and didn’t want my issues 2 b hers. I credit both of my kids 4 keeping me straight. I do have gastroparesis, thyroid disease and chronic pain, but I know it’s bc of all the yrs and yes probably some of my past caught up. I’m not complaining bc i’ve accomplished more and survived despite dire warnings. I’d b interested in hearing your outcomes. Good luck.

I just joined TypeOneNation - I am pre planning for baby #2. I am 28 and have been a T1D for 21 years. I was naive with my first baby not realizing how much being diabetic would affect everything. My endo was okay with conceiving at an A1C of 7.0. My first was born at 34 weeks, spent 27 days in the NICU with breathing issues, but she is one healthy spunky little girl now. This time around I’ve switched endos, done a lot of reading, and am trying to get my levels in much tighter control. I’m not sure where you’re at with your pregnancy journey now, but I hope the best for you!!

My 2nd pregnancy went well until I got to 30wks.
I had preeclampsia w my first and w my 2nd, I developed HELLP syndrome which is related to preeclampsia. It’s rare but can be fatal if not treated. I had an emergency c/section @ 35 wks. We thought his lungs were developed but like your daughter he had respiratory distress syndrome. He spent 2wks in the NICU on a ventilator. As you know, it’s one of the worst things to see your newborn hooked up to machines and tubes. Not knowing if they’ll make it. The guilt I felt was unbearable and I carried it for yrs. My son is now 23, healthy, and I wish he’d get his own place. Something I never thought I’d feel when he was young.
I’m so glad both of our babies turned out great:)