Tuesday, November 29, 2016

The Waiting Game

I remember when I was pregnant, and when I was waiting for imminent open heart surgeries, I was so, so scared and trying to make sense of everything.  Every time a child passed, I wanted to know why and what I could do to save myself from walking that path.  Here's are some thoughts for those who are playing the waiting game:
  1. The question in my heart is always, what is going to happen with my kid, which side of the odds will we fall on.  My husband finally said to me, odds don't matter with a single person, it is either yes, or no, a binary solution.  I had a lot of trouble letting go of the odds, but I finally had to, because when it comes to an individual, it isn't about odds anymore.  My youngest is a heard healthy 25 week preemie, her odds were 57% that she'd have a moderate to severe neurological impairment or death.  Not to mention the other issues with gut, lungs, etc that come with extreme prematurity.  There is an actual calculator for this, btw.  You plug in specific circumstances and it tells you the odds for those circumstances.  They clearly say, not intended to predict individual outcome, but it is hard not to let your mind go there.  The reality was my baby sailed through the NICU, grew out of the fetal state and came home.  She has some minor lung issues, but nothing major, she's a little miracle... statistics don't predict individuals, they don't tell you how an individual will respond to their environment, situation or anatomy.  A lot depends on your kid.
  2. People are more likely to post their concerns and pain than their joy.  So, you're going to see a disproportionate amount of pain.  Also, when people post joy, you smile and move on, you're not as  likely to make a strong mental note.  I don't remember how many parents updated to say their child had a successful procedure in the week before my son's open heart surgery.  I do remember 8 babies were lost and I STILL think about them regularly.  
  3. I think, what you are searching for, is what you can do to best insure a positive outcome for your child.  Here's what I know:
    1. Volume matters when it comes to surgical and recovery outcome: http://www.mindthesciencegap.org/2012/03/08/when-it-comes-to-heart-surgery-sometimes-quantity-is-quality/
    2. If a hospital doesn't openly post their statistics, I start to worry. In my experience good hospitals aren't afraid to post volume, outcome and details. http://www.childrenshospital.org/heart-center/volumes-and-outcomes
    3. Reputation has some bearing on decisions, but can't be the only decision. http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
    4. Surgeons are not equal and they generally have skills that suit them more for some defects over others (with a few true rock stars). You need to ask for your surgeon's specific statistics for outcomes for the specific procedure, needed revisions and follow ups, as well as their level of confidence on the outcome. Also, all parents think the sun rises and sets in the surgeon who saved their child's life. It is hard to find one who second guesses a successful outcome, but even knowing that, it is still worth asking around. Here's a great article from CNN on finding a great pediatric heart surgeon: http://www.cnn.com/2013/08/03/health/cohen-heart-surgery/
    5. Second opinions are always worth getting: http://www.chdknowledge.com/2012/10/getting-second-opinion.html
I hope this is in someway helpful.  Also, know that because we are imagining all the possible paths, waiting and anticipating the future is often far more difficult than walking the path as it comes.

Friday, February 20, 2015

Questions to ask after your prenatal diagnosis

When you are first told something is wrong with your baby, your head will spin.  You won't know what to ask or even what to think, you may go numb and not even remember the rest of the appointment.  When you go for the detailed fetal echo, here are some questions you can ask that will help you better understand what you are facing. 
  1. What exactly are you seeing at this point (ask them to draw a picture).
  2. Ask what their plan would be when you deliver, what hospital you'd need to deliver at and what kind of interventions you can expect at birth
  3. If you want a vaginal birth: Ask if they are comfortable with this baby having a vaginal birth if appropriate.  I've noticed OBs tend to jump to C-Section in situations like this because they feel they'll have more control, but often, cardiologists would be fine with or prefer a vaginal birth because it better preps the lungs for breathing.
  4. Now, when it comes to intervention, you'll want to know what the specific surgeon's statistics are for the specific procedure or procedures your child will be facing.  You'll also want to know what their post op statistics are.  As important as the surgeon is, the support staff who helps your child recover is just as important.  They are the ones to catch any issues that may occur after surgery.  Sometimes, Volume matters when it comes to OHS and recovery.  The higher volume hospitals see more patients so have a better idea of what to expect and how to handle issues that arise.
Finally, no matter what they say, get a second opinion.  When you are dealing with these huge, complex medical issues, getting a second opinion is always a good decision.  Medicine is an art as much as it is a science and a lot of medicine is evidence driven opinions.  It makes sense to check around before settling on a course of action.

One note: It has been my experience that a dedicated Children's Hosptial is always preferred to a hospital with a pediatric program.  The hospital's focus is different when it is kid oriented and that usually leads to better equipment and a more specialized understanding of a child's needs.

Saturday, August 3, 2013

CNN has a great article today on getting a good heart surgeon for your child


10 ways to get your child the best heart surgeon


Really good advice in this article.  Kudos to Kristen Spyker, who is an AMAZING heart mom and tireless advocate:

Get Educated:

Kristen Spyker, whose 3-year-old son Logan has a congenital heart defect, also recommends purchasing a copy of "The Illustrated Field Guide to Congenital Heart Disease and Repair," which she says gives great explanations for heart defects and surgeries. She found that many nurses had it on hand at her son's hospital.

Ask Specific Questions:

When asking questions, be very specific, advises Spyker, who started an online organization called The Heterotaxy Network.

For example, if your child needs to have AV canal repair, don't ask about the surgeon about his experience with valve repairs in general. If your child has a particular condition, such as Down Syndrome, find out about the surgeon's experience doing this procedure on children with that condition.

Be wary of places that keep statistics a secret

If you don't get specific answers to your questions, that's a red flag, many experts advise.
"I wouldn't go to an institution that wouldn't provide specific data," said Dr. Charles Fraser, chief of congenital heart surgery at Texas Children's Hospital. "And if you get a patronizing response like, 'We've done really well,' that's not sufficient."

Checkout your hospital rankings at US News and World Report and never be afraid to get a second opinion!

This article was probably a reaction to the story about Kentucky Children's stopping heart surgeries in the face of high mortality rates.

Wednesday, July 24, 2013

Breastfeeding/Pumping Primer

I’ve been posting on the baby center exclusively pumping board and the babycenter breastfeeding support board for a while now.  I’ve noticed that I tend to write similar really long posts on a regular basis, so I decided to write it all up in a blog post I can point at.

I’ve noticed a number of moms start panicking when their baby starts frantically and constantly nursing.  They think they are losing supply, but in reality, it’s often a growth spurt.  See this article for more information on growth spurts.

There are also foods and herbs that can help your supply.  First, eat oatmeal at least once a day.  Oatmeal somehow magically increases the amount I pump by about an ounce to two ounces per pumping session.  For some reason this doesn't work with instant oatmeal.  I eat steel cut oats, you can cook them overnight in the crock pot and they aren't as mushy as rolled oats.  My recipe for steel cut oats is 1 cup oats to 4 cups liquid.  I use 1 can of evaporated milk and the balance of the liquid is water.  I put that mixture in a Programmable Crock Pot and cook it overnight for 6.5 hours.  I've linked to my Programmable Crock Pot on Amazon.  I love it dearly; it even shuts off the warming mode automatically which is a great safety feature.

In addition to oats, brewer's yeast has shown great promise for increasing milk supply.  You can make lactation cookies and eat several per day.  That's right, cookies are now a must (YAY!)  Note, only brewer's yeast will do.  You can get it at whole foods or other natural food stores or online at Amazon.com.  Here is a Lactation Cookie Recipe

From there, you start branching into herbs.  I've had great success with Motherlove's More Milk Plus  I recently contacted them for tips on making their products more effective and for advice on who should use which of their products.  Here's what they had to say:

It is important to take according to label directions, avoiding liquids 15 minutes before and after each dose, and take each dose with no more than 1-2 oz of liquid. Having more liquid than specified may dilute the herbs in your system. Do not use orange or apple juices at dose time, as these can interfere with absorption.

The sweetener Splenda, as well as teas, foods and breath fresheners containing peppermint, can interfere with the effectiveness of our milk boosters.

If you have PCOS (a hormonal imbalance), had breast surgeries, or if you did not increase in cup size during pregnancy, More Milk Special Blend should be used; it is available in liquid encapsulated vegetarian capsules, alcohol-base and alcohol-free base (contains glycerin, which gives a sweeter taste). The goat's rue in these blends develops mammary tissue, which is needed by women with these special situations. These herbs are strong tasting, so if you have a sensitive palate, please select the capsule or the alcohol-free form.
For a complete article on galactagogues (the edible things that can increase milk supply) check outkellymom again.

Next, regarding clogged ducts.  I found that Lecithin really helped me prevent clogged ducts.  I had one about once a week prior to taking Lecithin and one in the 3 months since I started taking it.  As a bonus Lecithin contains Choline which is supposed to be really good for baby brain development.  See this article on Dr. Sear’s website regarding blocked ducts.  It gives dosing information for Lecithin at the bottom of the article and see this article for choline and brain development.

Finally I would like to talk about pumping.  Pumping can help you increase supply and maintain supply when you are away from your baby.  If your child can’t or won’t take the breast 8-12 times per day, you can make up the difference with pumping.  Most women do not respond as well to the pump as they do to their baby.  My baby can breast feed about 3 ounces in 35 minutes in his sleep.  To pump the same amount per breast (double pumping with a Pump In Style Advanced) I pump for an hour to an hour and a half. Also note that when I pump I have not breast fed.  My son is on fortified formula and only allowed to breast feed directly 2x per day.  The rest of the time I pump and he bottle feeds.  Most women do not need to pump as long as I do.  I am an extreme case of poor response to the pump.  But I’m also stubborn, so I continue to pump because I refuse to entertain any other option; this is most likely a character flaw.

Effective pumping is all about technique.  I strongly advise a hands free pumping system of some type.  Either the rubber band trick  a sports bra with holes cut in the middle, a bra conversion  or something like the Simple Wishes Hands-Free Breastpump Bra  (I have two!) I personally find theSimple Wishes Bra  the most comfortable and supportive, I have two.  Now, if you are like me and don't respond well to the pump,  having a hands free bra really only frees you up to be able to massage while you are pumping.  I am constantly manipulating the pump or compressing my boobs (I do read the internet, but I cannot type or do other hand intensive activities) I watch during the initial letdown phase and as soon as my milk starts flowing I switch to regular suction and start compressing.  I continue to compress until about 2 minutes after my letdown stops, then I hit the letdown button again and repeat the cycle.  I usually feel empty after about an hour and I usually pump every 4 hours or so.  If you exclusively breast feed it is absolutely normal to get between 1/2-2 ounces TOTAL for a pump  Here is a video on effectively using your hands to maximize production while pumping and finally, if you are stressed when you pump, and I find this especially true when I'm worrying about my supply, the amount you pump will go down.

There are lots of visualization techniques you can apply such as imagining waterfalls, rain, running water, etc. to stimulate letdown.  Looking at pictures of your baby or watching videos of your baby also helps.  I've also listened to youtube videos of crying babies in a pinch.  Anything to get your mind matched up with what you are trying to do with the pump. 

Also, hand expressing after each pumping session gets some women as much as an extra ounce per breast.  In the first 6 days you can dramatically increase your supply by hand expressing at least 6 times per day.  There is a great video on that at Stanford as well. Their studies showed a 45% increase in supply for moms who hand expressed and exclusively breast fed. As well as an 85% increase for moms whose babies were in the NICU.  Overall, I’ve found hand expression to be a useful endeavor after most if not all pumping sessions.

Speaking of pumping, milk supply is determined hormonally for the first 3 months after your baby is born.  During that time it is really important that your breasts are stimulated regularly.  If you exclusively pump at that point like I did, you must include at least one pump between 1 and 5 am.  Prolactin (the hormone that regulates milk production) levels are highest during the overnight hours.  If you are exclusively breast feeding, be sure that your baby is nursing 8-12 times per day.  The more the better.  If your baby only nurses 8x per day, try to throw a couple of pumps in as well.  After the first 3 months/12 weeks, your milk supply moves to supply and demand based production.  At this point your body begins to anticipate when milk will be needed and generate it accordingly.  If your baby generally eats at 4am, you will have more milk at 4am.  But if your baby generally waits until 7, as a rule, so will your milk production. 

For supply issues you can also consider power pumping.  When you power pump, you pump for 10 minutes and rest for 10 minutes for at least an hour.  My Lactation Consultant from the hospital suggested dangling your breasts and lightly tapping them during the 10 minute rest period.  When you have the time and the need you can also take a nursing vacation.  Crawl into bed with your baby and spend a weekend snuggling skin to skin.  Breastfeed or pump as often as you possibly can.

Another great resource for breastfeeding moms is the Newman Breastfeeding Clinic and Institute.  Their videos show great examples of productive feeding as well as alternate feeding solutions for babies who aren't getting enough milk by mouth. 

As for pumping and working, it is absolutely your right and your choice to switch to formula.  But you don't have to go 100% in either direction.  Any breast milk is better than none.  Also, remember that when you are with your baby and exclusively breast feeding, you are supplying 100% of your baby's caloric needs.  When you are at work and your baby is being bottle fed, you are able to pump the amounts your child would usually eat.  So how much milk you are getting before you go back to work and the amount you can pump while at work are two different things.  You won't be able to judge the latter until you are away from your baby and pumping.  Any supplementation with formula when you could be breastfeeding can decrease supply.  The caveat I place on that is if you supplement and then pump for that session, overall you should still get stimulation that will help increase supply, it is probably not the same quality as the stimulation your baby would give you but it is a good compromise if you feel you absolutely must supplement with formula.  That was my solution while my son was being supplemented by feeding tube in the NICU.

If you are pumping breast milk, pay attention to the storage rules and remember that breast milk is most potent from the breast, then directly after its been expressed, next when it is at room temperature, then refrigerated and finally frozen.  As your breast milk sits expressed the fat will start to separate and collect at the top of the bottle. 

Resist the urge to shake the bottle to mix the fat back in.  Shaking the breast milk damages some of its properties similar to the way freezing affects it. The long chain fatty acids break down and some of the living elements are destroyed.  Frozen or shaken breast milk is still far superior to formula, so don’t panic if you’ve shaken your milk in the past or if you are giving frozen milk to your baby.

Finally, if you are bottle feeding your baby, whether he breast feeds or not, I highly recommendpaced bottle feeding.  Babies tend to take 25% more food in by bottle vs breast.  They understand feeling full better when breastfed or fed using the paced bottle feeding technique.

One other benefit of breastfeeding (and to some extent paced bottle feeding) is actually intellectual stimulation.  A breastfed baby is constantly evaluating their situation and making adjustments.  They learn to think critically and problem solve as they address the fast flow of letdown and the slower flow that comes after.  They strategize ways to slow milk delivery down or speed it up.  It is a fantastic developmental practice.

Recap of useful sites:

By far, the most useful site I’ve found is kellymom http://www.kellymom.com/
I’ve also had great experience with the videos at the Newman Breastfeeding Clinic and Institutehttp://nbci.ca/ and the Stanford breastfeeding website: http://newborns.stanford.edu/Breastfeeding/
BabyCenter Breastfeeding support  http://community.babycenter.com

Exclusive Pumping Support

The exclusive pumpers at BabyCenter  http://community.babycenter.com/groups/a4592405/the_exclusive_pumpers
EPers at Yahoo http://groups.yahoo.com/group/EPers/

Wednesday, November 7, 2012

Travelling with a child with special medical needs

We traveled to Boston for my 2 year old son's second OHS.  I had never traveled with a toddler before.  All I knew was that the people with the little kids always get glared at and kids always scream.  It ends up, that isn't always how it is and people are generally pretty understanding.  I posted my concerns on the BabyCenter board Travelling with Children and received some fantastic advice which you can read through here: http://community.babycenter.com/post/a36518665/travelling_to_boston_w2yo_for_ohs

I also read over the TSA's web page for travelling with children which includes an informative section on travelling with medications or mobility aids. http://www.tsa.gov/traveler-information/traveling-children.  Following some really good advice I called and expressed my concerns to the TSA contact office http://www.tsa.gov/contact.  They helped me get the number for my local airports TSA office.  I contacted the local airport office and got a lot of helpful specific airport advice that really streamlined our travel experience.  All in all I found the TSA incredibly helpful.  They helped make both our trip to and from Boston an overwhelmingly positive experience.

I was pretty paranoid regarding germs during our travels so we brought sanitizing wipes on the trip.  My husband would board during the special needs boarding.  He would wipe down the walls, windows, trays, seats etc. and then install my son's car seat.   We would then board last and I was able to put him in the car seat with no problem and minimal worry.  The flight out was a non-stop flight and went flawlessly.  The flight back was in 2 segments and we had a couple of serious diaper leak problems.  Our son was on lasix, it took quite some time to find a way to diaper him without compression leaks with every urination. (The secret is Flip disposable inserts.  Whether you use cloth or disposable, you need this boost when dealing with that dang lasix pee).

It was also strongly suggested that we ditch our very nice and SUPER HEAVY car seat and get a $40 cosco Scenera car seat instead.  There is a lot of amazing information in this BabyCenter thread regarding travelling with a car seat: http://community.babycenter.com/post/a36576082/using_a_car_seat_post_open_heart_surgery

I found that clear explanations and sincere gratitude along with a wealth of patience, made for a mostly pleasant travel experience.

Sunday, October 7, 2012

Getting a Second Opinion

Getting a second opinion for my son's mitral valve issues was the #1 best decision we ever made, hands down.  

Our local cardiologist told us to wait and replace his mitral valve in a few years. In his opinion, the current valve wasn't salvageable.  Because our goal was to replace the valve, we were letting LO's heart enlarge until it reached the size of an adult so the valve we implanted would be larger.  

I REALLY wanted to save the valve, so I went against the cardiologist's advice and sought a second opinion from the congenital valve program at Boston Children's.  They thought his leak was much worse than expected, that the leak explained all the weight gain issues we were experiencing as well as why he was sick so often.  They advocated for mitral valve repair to occur before this year's cold/flu season.  Our cardiologist advocated heavily against that course, in his experience, mitral valve repairs rarely worked.  He said the decision was ultimately up to us, but he felt that we were subjecting our son to a surgery that wasn't likely to succeed and we'd be replacing the valve in a few years regardless.  We sought a third opinion at CHOP.  CHOP agreed with Boston and, after reviewing the echo we sent, gently pointed out a number of issues with the original echo report that accompanied the actual echo.

We're now 9 days post op from my son's valvoplasty.  The severe mitral valve regurgitation is now trace mitral valve regurgitation and neither the surgeon nor the cardiologist expect that we'll ever need surgery again. 

Monday, August 27, 2012

If Your Toddler Needs Open Heart Surgery

The concept for this blog post was originally created for babies who need open heart surgery. I am now expanding on this to create suggestions for toddlers who need open heart surgery. We are hereby soliciting experienced advice to help other parents prepare for this situation! We want this to be an ongoing project
  • If you have any ideas and/or short anecdotes to contribute, please put them in replies to this post for us to consider. We put quotation marks around all the advice that came from friends. 
  • If you are a relative or friend of the toddler’s parents, please check out the last section of this page for ideas of how you can help lift their load. 
  • Thank you to everyone who is helping to contribute to this list!