Thursday, March 2 – 9pm est.
Nicole Johnson Baker – Miss America 1999, International Diabetes Advocate
Topic: Diabetes and Pregnancy
Nicole Johnson Baker, Miss America 1999, is an international diabetes advocate. She travels extensively promoting awareness, prevention, and early detection of the condition she shares. Under her consulting firm, Johnson Baker works as a corporate and government affairs advisor for patient groups and biotech companies, including Animas Corporation, Eli Lilly & Company, Liberty Medical and the American Diabetes Association. She spends much of her time engaging lawmakers at both the state and federal levels on all diabetes-related matters.
Johnson Baker serves as the first Ambassador for the International Diabetes Federation’s Life for a Child program, which advocates for endangered children with diabetes around the world. In 2005, Johnson Baker also launched a national essay competition and website called Diabetes Heroes,
which will continue for a second year in 2006. In addition, Johnson Baker co-hosts the weekly CNBC diabetes talk show, dLife, writes monthly columns for Diabetes Health magazine and has a web column on Georgetown University’s MyCareTeam website.
Her three books include her autobiography, Living with Diabetes, which, in part, chronicles her experiences as Miss America 1999. Her fourth book, a new cookbook, Mr. Food Diabetic Dinners in a Dash Featuring Nicole Johnson Baker, will be released in March 2006. Johnson Baker is working on her fifth book, her story of her successful diabetes pregnancy.
Pennsylvania Governor Ed Rendell appointed Johnson Baker in 2005 to the Governor’s Council on Physical Fitness and Sports. She also serves on numerous advisory boards including the National Institutes of Health (NIH) Council of Public Representatives, and is a past board member of the American Diabetes Association.
Johnson Baker holds a master’s degree in journalism from Regent University and is currently finishing an M.P.H. at the University of Pittsburgh. She and her husband Scott live with his three children and new little Ava Grace Baker in Pittsburgh, PA.
Chat with Nicole Johnson Baker Thursday, March 2, 2006
Jon: Welcome Nicole
Megan: Hi Nicole!
hvhagen: hello Nicole
sstrumello: Welcome Nicole
Nicole Johnson Baker: Hi there
swanny: HI Nicole
Jon: Welcome everybody to the Diabetes Talkfest Chat Room
swanny: How’s baby Ava tonight NICOLE
Nicole Johnson Baker: Did you guys know there is a guy on American Idol with diabetes? My daughter is addicted to the show and she informed me of this tonight…. 🙂
gina: YES NICOLE!
gina: there are two!
hvhagen: yes, he is a pumper, too
Jon: Our guest chatter tonight is Nicole Johnson-Baker, 1999 Miss America and co-host of Dlife tv
Megan: There are two people on American Idol with diabetes
sstrumello: We discussed that there are two
Nicole Johnson Baker: Oh – didn’t know there were 2
gina: hey amanda
gina: yep two
swanny: who are the two?
Megan: one sec
Jon: She is also an international diabetes advocate
sstrumello: Elliott and …
Megan: Kevin and Elliot
Jon: Nicole, are you ready for questions?
Nicole Johnson Baker: sure
sstrumello: Kevin, that’s it
Megan: Nicole- I just saw you in Diabetes Forecast with your Animas
Jon: Tonight’s topic is Diabetes and pregnancy
hvhagen: may I ask what your hba1c was at conception?
Nicole Johnson Baker: I am happy – my husband has the baby – kids are in shower mode and I am locked in my office….I am ready!
Carole: How is it that you’re so pretty and so nice and always available to the people with diabetes Nicole? I’ve seen you at several Children with Diabetes and JDRF events. You’re a pleasure to be around.
Nicole Johnson Baker: Yes – the Forecast article is great – I was really happy with that – especially that my Dr. was a part of it with me.
Megan: how long have you been pumping?
newdonna: Congratulations on your baby! I am curious to hear how your insulin needs changed during the delivery?
sstrumello: Nicole, do I understand that you live in Pittsburgh but dLife records in NYC? That must keep you busy on the road!
Nicole Johnson Baker: thanks Carole – that is very kind. I feel very fortunate to be a part of the diabetes community – I guess I try to make people feel special – and I try to attend as many events as possible. In recent years that has become harder, but I feed a passion for helping people realize that anything is possible and that they can accomplish whatever they wish – if they have good diabetes control
Nicole Johnson Baker: Insulin changes:
andrea: Nicole, were you worried that diabetes could cause problems with your baby?
Nicole Johnson Baker: During pregnancy – slowly increased to about 70 units a day. I started out at about 30.
swanny: Nicole, were you afraid to get pregnant because of your diabetes?
gina: is that the normal dose for someone during pregnancy
Carole: How often per day did you have to check bg while pregnant? I understand they expect very tight control – on the edge of low
gina: or people usually take more
Nicole Johnson Baker: It was a slow change – as the baby grew the insulin demands changed
Nicole Johnson Baker: I actually had a really cool thing happen……
Nicole Johnson Baker: <b>I started to make my own insulin naturally – this happens in about 20% of type 1’s. So I wound up taking about 20-30 units a day less than most women</b>
Nicole Johnson Baker: At delivery – my insulin demands were pretty low – because of all the work. I had 30 hours of labor.
swanny: are you still producing your own insulin… after AVA was born??
sstrumello: how was that measured … c-peptide?
Carole: 30 hours – ouch.
Nicole Johnson Baker: The sad thing was that the natural insulin went away at delivery…..it was because of the hormones in the placenta.
Nicole Johnson Baker: <b>it was measured by c-peptide and all kinds of other things…..they would take tons of blood from me!</b>
gina: is that normal for someone with type 1 to start producing their own insulin
gina: during pregnancy
Nicole Johnson Baker: only about 20% of women produce their own insulin
sstrumello: recent studies have shown that even longstanding type 1 patients have sustained “islet turnover”, the problem is autoimmunity kills off the new islets as fast as they are regenerated
swanny: how can other women find out if they fall into the 20 percent group?
Nicole Johnson Baker: DLife – tapes every 3 months for about 3 days. – that was a question earlier
jeff: Nicole I was wondering if Dlife had done anything on Diabetic Truck Drivers since the laws are changing for us I am starting the process now threw the FMCSA and just did 3 interviews one with NPR has Dlife done anything ?
Nicole Johnson Baker: the insulin production was part of a research trial I was in
Carole: Is it that you actually produce your own insulin, or you become more insulin sensitive?
Nicole Johnson Baker: Good one Jeff – I suggested it – hopefully they will do something in the future. It would be a great story
swanny: I’ll note it Nicole
Nicole Johnson Baker: Actually produced insulin – that is what I am told
sixuntilme: Have you found yourself taking better care of your diabetes as a result of being in the public eye?
Megan: how long have you been pumping?
jeff: Well I have just started process with the help of Katie Hathaway with the ADA and so far so good
Nicole Johnson Baker: the research is fascinating because it reminds us to encourage those with diabetes to keep their eyes open to all kinds of “cure” options
Nicole Johnson Baker: I have been pumping for about 9 years
Diabeticfoodcritic: Nicole, what is the likely hood of your children becoming diabetic? Do you know any stats on that?
Nicole Johnson Baker: I wear an Animas pump – IR 1250 – very cool
gina: minimed here
Carole: I always thought Mattel should have made a Miss America Nicole Johnson Barbie doll with pump and meter
gina: omg that would be so cute
hvhagen: What was you a1c at conception and throughout?
Megan: good idea
Nicole Johnson Baker: Genetics: My daughter, Ava, has the lowest risk gene – they told me her risk was about 1 in 500 compared with a 1 in 100 chance if she had the higher risk gene
Megan: good odds
Megan: in her favor
Diabeticfoodcritic: great odds
sstrumello: Diabeticfoodcritic, Joslin has some stats on the question, believe it or not, there is less risk inherited from the mother than from the father
Nicole Johnson Baker: Typically – GENETICS – the risk is about 3-4%, if the dad has diabetes it is about 5%, if both parents have diabetes it is closer to 10%.
Nicole Johnson Baker: we are on the same wave length 🙂
Diabeticfoodcritic: good to know just so you know I am guy 🙂
jeff: Nicole I will email You my information and a list of what I have been threw 1 being fired from my job for becoming diabetic and how I have had to write the white house to get the ball rolling
Megan: did being pregnant limit where you could put your infusion sets?
Diabeticfoodcritic: so curious about having a child with it
Nicole Johnson Baker: A1c – during pregnancy – 5.5-5.8%; before pregnancy – 6.5-7.2%; Last week – 5.9%
sstrumello: male here as well
sstrumello: I guess I should have noted that before
Nicole Johnson Baker: INFUSION SETS: Not really. At the end – last month – I really only put it in my hip area. My tummy was so tights and round it was hard to get the set to stay in. There is no risk to the baby though – no matter where the set it.
gina: Nicole, what precautions did you have to take before conceiving
Nicole Johnson Baker: sometimes my husband had to help me insert the set – it did freak him out. 🙂 Very funny.
Nicole Johnson Baker: Precautions: Well that is a good question….I couldn’t get any advice from medical professionals other than for me to take a multi vitamin and folic acid. They also said – have your diabetes in good control. That was all I heard! It infuriated me. I went to 4 different Dr’s.
Nicole Johnson Baker: I hope to write a book about it all – there isn’t anything out there for women with diabetes who are searching
Diabeticfoodcritic: do not forget to add the father point of view too Nicole 🙂
gina: I heard that you need to keep your A1c below 7 before trying to get pregnant
sixuntilme: Have you found yourself taking better care of your diabetes as a result of being in the public eye?
Megan: I would read it if I were to get pregnant
Nicole Johnson Baker: Really, the pregnancy was easy for me – I was lucky. No sickness, no complications, great diabetes control.
gina: because that is when you have more risk at defects god forbid
Nicole Johnson Baker: Yes – you should have your A1c as low as possible before getting pregnant.
swanny: which are worse for the baby… high or low blood sugars?… or does it matter?
Carole: Some moms say they took such good care of the diabetes during pregnancy that they needed to relax a lot after giving birth
Nicole Johnson Baker: baby sees every BG that mom has – so all need to be kept as close to the ideal range as possible
Carole: How are you enjoying motherhood?
newdonna: Nicole before you got pregnant, were you in “tight control” most of the time?
hvhagen: So a 6.7 is good to try?
Nicole Johnson Baker: well – I thought I might be able to relax a little after the baby, but I am breastfeeding — it is still very tough and time intensive. I still test about 10 times a day. Ava feels every BG I have.
gina: what do you mean she feels every bg you have
Carole: Does the breastfeeding reduce your insulin needs? Are you drinking lots of water?
gina: like she knows when you are high or low?
Nicole Johnson Baker: It is frustrating when I have highs – because then I can’t feed her. It is heartwrenching…..the highs make the milk too sweet and her pancreas works too hard. So I have to give her pumped milk or formula.
sstrumello: But Ava has her own beta cells, so she can self-regulate her own blood glucose better than you can!
gina: oh no!!
gina: wow that is so interesting Nicole
Nicole Johnson Baker: she doesn’t react to my lows, but you wouldn’t believe the crying when I feed her while having a high – now that is typically when I have not tested and I don’t realize it is high until I am trying to figure out why she is so fussy
Carole: Who has studied breast milk of mothers with diabetes – Lois Javanovic?
newdonna: How high is “too high” for you to decide you can’t breastfeed?
Carole: Are you certain it’s not due to something you ate – like milk products?
Nicole Johnson Baker: Not many people have studied this…..Dr. Jovanovic and I are working on some science data together now.
Nicole Johnson Baker: Well – anything over 200 is too high. I try to feed her with BG’s 150 and below. I have to eat a snack if my BG is below 100 because feeding makes my sugar drop
j.b.: wow, 31 people
gina: Nicole, that so interesting
sixuntilme: I’m going for a Third Try here: Nicole, Have you found yourself taking better care of your diabetes as a result of being in the public eye?
Nicole Johnson Baker: You all will want to check out my column in Diabetes Health in April – photos of Ava, my delivery story and my BG’s during labor and delivery!!!!
newdonna: Is breast feeding on the same idea as physical activity – that is why your blood sugar drops?
Carole: Just curious if you’ve ever checked a drop of breast milk on a bg meter?
Nicole Johnson Baker: Oh – not really. I still goof up and eat candy. I think I take better care of myself now that I am a mother though – I don’t want to miss anything in my kids lives…. so that is a huge motivator. There is a lot of pressure though when I am at diabetes events especially when people want to see my BG readings on my meter.
sixuntilme: People ask to see your meter results?
Nicole Johnson Baker: No – never tried the milk on the test strip – interesting idea
newdonna: I guess I made it obvious I have never breast fed … :rolleyes: sorry if that was a silly question to the mothers out there!
tanyacook13: Nicole, do you find that your blood sugars are harder to control after having a child. Six months after having my son, my blood sugars were like a roller coaster. The docs said most likely because of hormones yet? Do you find this to be the case with you?
Nicole Johnson Baker: Yes – can you believe people ask me to see my results…..it is kind of odd
Nicole Johnson Baker: I usually say No
sixuntilme: It’s pretty intrusive.
sixuntilme: Do you impress upon them that your care is subject to the same variables as theirs?
sixuntilme: I.e. stress, hormones, kinked cannulas … the whole bit?
sstrumello: No more intrusive than the NYC Dept. of Health Seizing our A1C test results without disclosure!
Nicole Johnson Baker: I haven’t seen any major changes in my BG’s yet….after delivery I went really high for about 6 hours — stress. Now, it is tough to remember to eat, test, etc. — especially if the baby needs something from me.
Jeanette: I don’t have diabetes but my son does. I breastfed him until 15 months old, and my daughter until she was 3 years old….I never planned to do it that long but being in La Leche League made it fun…Not sure if you or anyone really plans to nurse that long. You may want to write an article for Mothering Magazine. That would be incredible too.
Nicole Johnson Baker: Ah – interesting idea Jeanette
Nicole Johnson Baker: John – note that idea – OK
swanny: what is an acceptable a1c range to start thinking about getting pregnant??
newdonna: That, to me, would be the hardest part – juggling act of taking care of yourself and now baby full time.
swanny: already did
Nicole Johnson Baker: The NY thing is tough – I have thought about writing an article on that for Diabetes Health
Nicole Johnson Baker: Yes – that is the hardest. I sometimes have to put her down and let her cry while I treat lows or just test my BG.
Diabeticfoodcritic: please educate me but would that NY thing fall under Hippa?
Nicole Johnson Baker: I was most nervous about feeding the baby and going low — let me tell you that was only an issue for me for the first 2-3 weeks…..now I rarely go low.
sstrumello: I am working with the ACLU to pursue it legally, but right now its still under investigation … if you decide to write an article, by all means, ask gina for my contact info.
Nicole Johnson Baker: ok
Carole: That NY Thing falls under dumba
Diabeticfoodcritic: I am going to look for more info on the NYC that is a good topic to blog about
gina: EVERYONE PLEASE STAY ON TOPIC
grandma: What is the NYC Dept of health doing? I haven’t heard.
gina: THIS IS A DIABETES AND PREGNANCY CHAT
Nicole Johnson Baker: Let me suggest another research item to look into…..the TRIGR trial on the link between cows milk products and type 1 diabetes — it is for children of parents with diabetes. Ava and I were in this trial
sstrumello: Diabeticfoodcritic It does fall under HIPAA as far as suburban residents who get blood tested in NYC, the labs can be held liable for disclosure to NYC even for people who do not fall under the NYC Dept. of Health’s jurisdiction … so the labs can be sued
Nicole Johnson Baker: but we were knocked out because her genetic risk was so low – that was part of the trial – getting her genetic makeup
newdonna: Nicole I am so happy for you! When I heard you were pregnant I was so excited for you, and so glad to hear you had a healthy pregnancy. By the way, I am type 1 my dad is type 1 and my mom is type 2 ….
newdonna: so there was no diabetes in your family besides you? For that trial I mean …
Nicole Johnson Baker: right – I am the only one in my family with diabetes. I have a grandmother with type 2
Megan: I’m a third generation diabetic
Megan: my dad, grandpa, and uncle also have diabetes
Diabeticfoodcritic: Nicole what would you think is your biggest challenge facing diabetes?
gina: megan type 1?
Megan: grandpa and I type 1, dad and uncle type2
Nicole Johnson Baker: My biggest challenge is to keep my A1c in the right range – it has always been so tough for me. I can’t wait to try symlin after I am done breastfeeding to see if that will help. I had never been below 6.5 until I was pregnant.
sixuntilme: Nicole, in regards to your work with dLife and your advocacy for diabetes on the whole, do you find being a role model of sorts overwhelming?
Nicole Johnson Baker: I guess pregnancy taught me to be a little braver in taking my BG’s low. I was always so afraid – now I know I can do it and I can have fantastic numbers
sstrumello: Nicole, you mentioned your insulin needs increased gradually during pregnancy. What happened after delivery of the baby, did your needs plummet, and if so, were you prepared to adjust your dosages accordingly, or was it trial & error?
Carole: How were the baby’s bgs at birth?
gina: a friend of mine just tried symlin, she loves it
Nicole Johnson Baker: I have had weekly meetings with my Endo throughout the pregnancy and the post partum – so we have really worked to micro manage my insulin. After delivery – I didn’t need much insulin for the first 3 days – except for that one 6-hour period of highs.
Nicole Johnson Baker: Everything did change gradually – I have seen patterns and adjusted accordingly.
Nicole Johnson Baker: Ava’s BG at birth was 88 then 89 then 77
gina: do you have any advice for mothers to be?
gina: (with diabetes lol)
Nicole Johnson Baker: I guess it is sort of overwhelming to have people interested in my personal life….but it is great. Diabetes is a family.
Nicole Johnson Baker: Advice – argh….
gina: SORRY HAHA
sixuntilme: Do you have any advice for people who ask for advice?
Nicole Johnson Baker: Work hard to keep your BG’s in range. It is possible to be in the 5%’s – that is what is best for the baby and it doesn’t hurt mom either…..before getting pregnant, establish a team to help you. Talk with your OB/GYN, Endo and other providers about your plans. Make sure your partner is willing to be an active part of your diabetes care – my husband was great! He even tested my BG at night.
newdonna: Nicole, was there a point where you were not sure if you should try to get pregnant because you were diabetic … or did you always plan to become a bio-mom someday?
Nicole Johnson Baker: Take lots of notes!!!! History is powerful and reveals so much.
MickiC3: I just read in the latest Diabetes Forecast that you tested every 2 hours, even throughout the night. It was so cute to find out that your husband often did a blood sugar during the night! I told my husband that he has a lot to live up to! 🙂
Carole: Yes maybe we should have a chat with the spouse another night LOL
Nicole Johnson Baker: I was always told I wouldn’t be able to have children – so this was and is incredible – too many people live in the dark ages and think things like this are impossible
Nicole Johnson Baker: I have 3 step – children that live with me. (16, 13, 10)
sstrumello: When is your book due, Nicole? Any expected delivery date for that?
Diabeticfoodcritic: Nicole, if you could change anything or do anything different what would it be?
Nicole Johnson Baker: Hey – the baby is crying – I am going to have to go. It has been great chatting with you all. Thank you for your questions……I love it that you are interested in this topic.
Jon: Thanks Nicole for chatting with us
suziebird: thank you
Diabeticfoodcritic: Thanks Nicole
swanny: Thanks Nicole
Jon: Please come back again
Ellen: I need to dash but I would like to say this has been fantastic. Thank you Nicole. Wishing you the most wonderful and joyous times with your baby and great health to you and your entire family.
jeff: Thank you Nicole
MickiC3: Thank you!!!:
Nicole Johnson Baker: We will have to do this again – I will post some photos of the baby on my website – <a href=”http://www.Nicolejohnson.com”>www.Nicolejohnson.com</a>
gina: thank you so much for coming Nicole
sstrumello: we look forward to your book Nicole! Thanks for joining us tonight … I hope you can come back sometime to talk!
Ellen: What a gorgeous mommy! Lucky baby! Bye