Health Issues archives

Twins

January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland.  Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.

Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.

Another guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.

Let’s hear some more resources, and any personal experience.

Vicki Vila

Preparing for a possible NICU stay

August 27, 2012 in Birth Plans, Health Issues

Expectant parents preparing for the birth of a baby with Down syndrome will read information in our book and other on-line resources discussing the possibility of a NICU stay.  Mom Adina over at Baby Center conducted an informal poll of moms which found the following:

32.4 percent of babies went home with mom

24.3 percent spent less than 2 weeks in NICU

19.8 percent spent 2 to 4 weeks in NICU

9 percent spent 4 to 6 weeks in NICU

14.4 percent spent over 6 weeks in NICU

Adina’s poll shows over half of the babies with Down syndrome had no NICU stay or only a short NICU stay.  But a large percentage do have a stay over 2 weeks.   So while many babies will not have a NICU stay, practically speaking it is a very good idea to prepare for the possibility.

Experienced moms, did your baby have a NICU stay?  If so, what advice do you have for expectant moms who wish to prepare for that possibility?

(Original post January 7, 2011)

Organization & Preparedness 101

March 23, 2012 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy.  Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice.  There may be a lists of tests, lists of questions, scraps of paper with phone numbers.  We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy.  Parents should purchase a a binder/ notebook to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well.  Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby’s chromosome count.

You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy.  Keep track of all medical personnel, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

(original post March of 2011)

The Shape of the Eye (book review)

February 8, 2012 in Dads, Diagnosis, Emotions, Future, Health Issues, Resources

The Shape of the Eye by George Estreich is one of my favorite books and I recommend it highly for those who have a loved one with Down syndrome (or will soon!) and for anyone who loves books. I wanted to have written a beautiful book review worthy of his work, but I find that the time eludes me. However, Lisa Morguess has written a lovely review for you to enjoy on her blog Turn the Page, and as a bonus has an interview with the author on her personal blog Life as I Know It. Read Lisa’s review and George’s interview, buy the book and devour it, and when you love it as much as we do, vote for The Shape of the Eye in the Oregon Creative Non-Fiction category.

Lisa Morguess’ review: HERE
Lisa’s interview with George Estreich: HERE
Buy the Shape of the Eye: HERE

Preparation

January 18, 2012 in Birth Plans, Breastfeeding, Friends and Family, Health Issues, Medical Provider, Support

Many of our expectant parents agreed to diagnostic testing in order to “prepare” for having a child with Down syndrome.  Yet post-diagnosis they may not be sure exactly what they should be doing to prepare.  For those of you who had a prenatal diagnosis, share what steps you took.  For those of you who had higher chances but skipped the amnio, were there things that you did to prepare “just in case”? For all of you, are there things you wish you had done? Are there things you wish you had not done?

(Original post December 2, 2010)

Calling all heart moms!

August 18, 2011 in Health Issues, Medical Provider, Post-Diagnosis Health

Does your unborn baby have a heart defect? Or are you an experienced mom who has faced her baby’s open-heart surgery? Many expectant parents are worried about the time period between birth and surgery. Many worry about the symptoms associated with heart defects, the medications, and feeding issues. Newborn hospital experiences may vary. Cardiologists may differ in their approaches to public outings and germ exposure. Expectant moms, what are your questions? Experienced moms, share your stories.

(Original Post November 6, 2010)

New healthcare guidelines (pediatrics)

July 29, 2011 in Future, Health Issues, Medical Provider, News, Resources

The American Academy of Pediatrics has released new guidelines for pediatricians who have patients with Down syndrome. These guidelines are updated from those provided in our pregnancy book, so expectant parents should have a copy of the new guidelines and provide a copy to their pediatrician if he or she does not have them.

You can download a PDF of the new guidelines here: LINK HERE.

Working Moms

July 7, 2011 in Future, Health Issues


Many of our working moms plan on the usual steps of maternity leave and a return to work.  Post-diagnosis, many of them have worries specifically related to how a Down syndrome diagnosis will impact these plans.  Experienced moms, will you share your challenges, successes, or plan changes concerning employment?  Did you return to work as planned, or alter your plans?  How did health challenges impact your plans?  What child care arrangements do you have? Do you have any advice for our moms?

(originally posted November of 2010)

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