Yet another GI Bug

C is getting approximately one illness every 4-6 weeks right now.  It is exhausting and frustrating.  Almost every time he gets an illness, he gets diarrhea.  This is also frustrating and exhausting, not to mention gross!  The worst part for me is that when his GI Tract is upset he doesn't eat.

We spent the first two weeks of C's life in the NICU where he was tube fed and they'd extract and inspect his stomach contents before each feeding.  They measured every milliliter he ate and recorded the weight on every diaper we changed.  This practice continued through every hospital stay.

We spent the first three months of his life weighing him 1-2 times a week.  When he came home from the hospital and I was allowed to start nursing over night, I had a scale I'd weigh him on before and after he nursed to find out how many ounces he drank.  Even after we had the all clear to stop fortifying the majority of his feeds, we still talked about his weight at every doctor's visit.

And now, he won't eat.  It is absolutely insanity inducing.  Thank goodness I'm still nursing or he'd be taking in 0 nutrition right now.  I can't imagine how much weight he'll have lost next month when we go in for Synagis.

Honestly, I think I've been permanently traumatized by the focus on weight.

ETA: I know I should blog more, I'll work on it :)

Medication is a struggle

We've been giving C liquid medications since we brought him home.  After months of trial and error we feel like we have it down pretty solid.  Then there are nights like tonight.  Usually, C drinks his medicine with about 20 ml of either breast milk or almond milk.  But tonight, he refused no matter what we tried.  Usually when this happens we suspect that the antibiotic will or is upsetting his stomach so he doesn't want to take it.

I hate these nights, we syringe each medication to him undiluted milliliter by milliliter, while he screams and struggles.

Happy Birthday C!!

I can't believe it's been a year.  It feels like it has been forever, and like C was just born yesterday.

We sang happy birthday and gave him a stuffed Monkey to keep at school.  C had some eggs with his breakfast because today he spontaneously gained the ability to eat them.  He had a banner on the wall at school and was greeted with birthday well wishes.  He's wearing a spiffy little outfit that his teacher gave him, overall, it is a very exciting day.  Saturday he'll have his first taste of cake!  I'm excited to see what he thinks.

In medical news, we go for our 12 month checkup (YUCK! Shots), our GI follow up and our Urology followup.  I'm hoping we get released from both gastroenterology and urology.  If we do we'll only be giving C one med twice a day, which would be amazing.  Our situation is pretty stable now.  There's hope that we'll remain stable and not need further interventions.

This year has been a roller coaster.  I'm so grateful to have C with me and my heart aches for the moms who will be facing this anniversary without their babies.  I can't think of C's birthday without acknowledging all those parents whose children aren't with them now and all of those whose children are still waiting for their repairs.  I never had a chance to meet Joshua or Ewan or Cora but I think of them often and they have changed my world forever. This is a club to which I never wanted to become a member. I miss blissful ignorance.  I'm incredibly happy to share this birthday with my son.  I'm aware of how fortunate that makes me and I pray that I can have many more, but I know, it isn't a certainty.  I pray I will never experience my child's birthday without the visceral awareness of how blessed I am to be there.  Life is incredibly fragile and precious.  Every single day I'm reminded how fortunate I am to have C with me.  Every day I know it could have just as easily been a different story.

My son turns one today, through the grace of God, medical science and the courage of the parents and doctors who walked this path before me.  I thank all of them and pray they find peace and joy in their lives.

Sleeping Baby, So Sweet

C was asleep tonight by the time I got home from work.  This is probably the worst I've felt about being a working mother.  I honestly try not to think about it too much.  There are positives and negatives in any choice we make.  For the most part, I'm happy with mine.  I really miss him while I'm at work and I am acutely grateful for every moment I get to spend with him.  Part of me wishes he'd wake up, the rest of me knows if he does wake up, he won't go to bed until 2 at the earliest.  He was up at 3:30 this morning and didn't want to go back to sleep or play alone.  It has been a long day, which probably doesn't help my disposition.  Being a working mom is hard.

Sometimes I get so tired of pumping...

C is whine-screaming, he's bored, Bored, BORED and I'm running out of toys for him to throw on the floor.  If I lean over to pick the toys up, my milk will spill out of the bottles attached to my body.  I'm tired of pumping, C's tired of me pumping.  As of this weekend, it is possible that I'm pumping the pumps of a working mom, instead of the pumps of a baby who won't nurse.  In some ways it makes it worse.  Before, I HAD to pump because it was the only way to feed C.  Now I have to pump because I work.  It is different, I'm not sure why, but it is.

A Breastfeeding 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.

*UPDATE* I've recently read a fantastic article on natural breastfeeding positions that I urge you to read.  Also, this article on baby led latching is fantastic.  Finally, if you are having latch issues, it is always wise to check for lip/tongue tie, Mommypottamus has a fantastic article on this.

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.  In fact, early on, you can pretty much expect to spend the majority of your waking time breastfeeding inefficiently.  Until baby hits about 46 weeks gestational age (that is your due date + 6 weeks) baby really doesn't quite get the eating thing as well as we'd like.  So they tend to be inefficient, frequent nursers.  The world is big and scary, nursing is comfy and safe... all in all, it is what they want to do, and they do it A LOT... and that's really, REALLY OK.  Trust your baby, trust your body... listen to their cues and respond as best you can.  Seriously though, sleep when the baby sleeps... I know it is hard... but hallucinations aren't fun either... Even after those first 6 weeks, there are growth spurts and wonder weeks and days where baby just wants their mom more than you've ever been wanted before... trust your baby and trust your body.  Don't reach for the formula or freezer stash, unless there is a verified medical reason you need to.

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.  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 Slow Cooker,  and cook it overnight for 6.5 hours.  I've linked to my Programmable Slow Cooker on Amazon.  I love it dearly; it even shuts off the warming mode automatically which is a great safety feature.  Before serving I add sweetener, fruit, milk and ground flax seed.

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 .  Here is a Lactation Cookie Recipe

From there, you start branching into herbs.  I've had great success with Motherlove: More Milk Plus Vegetarian Capsules, 120 Caps  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 out kellymom 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 personally find the Simple Wishes Hands Free Breastpump Bra the most comfortable and supportive, I have two six (2 wore out).  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 20 minutes and I usually pump every 2-3 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 recommend paced bottle feeding or baby led 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 Institute http://nbci.ca/ and the Stanford breastfeeding website: http://med.stanford.edu/newborns/professional-education/breastfeeding.html
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/ You can also find a number of excellent Exclusive Pumping Groups on Facebook.

I had to EP for my son for 5 months and my daughter for 4 months before I was able to begin transitioning to breastfeeding. I only tracked the time an totals while exclusively pumping so I could monitor my supply. Once I started breastfeeding, I didn't monitor that way, even if I pumped at work.. so these numbers are only for Exclusive Pumping...

As of April of 2015, I pumped 1,452 sessions for a total time of 64 days, 22 hrs, 49 minutes. I pumped 144,613 ml (74,445 left an 70,158 right) which is 37 gallons.
In the end, I stopped breastfeeding my son at 2 years, 8 months (term cardiac kid). My daughter is a 25 weeker, now 6 months.

Other posts in this series include:

• Initiating Milk Supply With A Pump
• Transitioning from Pumping to Breastfeeding
• Pumping to feed baby when you need to be away

Cardiology appointment today.

We had our 6 week cardiology appointment today (2 weeks early because our doctor is going on vacation).  C had an echo.  The patch leak where a stitch either broke or loosened is about the same as it was, as is the mitral valve regurgitation.  We've decreased the number of times C gets blood pressure meds to twice a day.  This means no more waking up at 1am to feed him medicines.  We'll see if he'll start sleeping through the night.  Apparently once he's approximately old enough to be in school he's old enough to swallow pills, at which time his meds will be much easier to give.

The lingering issue with an AVSD is the valve.  Because the two valves have been rebuilt from the one common valve he was born with, it is never a good as a correctly formed valve and it leaks.  Our goal is to keep it viable as long as possible.  Hopefully C will never need a replacement valve.  If he does, hopefully they will have a viable regenerative tissue valve by then.  Currently children who have to have a new valve end up with a mechanical valve and blood thinners.  The theory behind the blood pressure med is that it makes things easier on that leaky valve.

We checked out the little lump we can feel in the middle of the breastbone, its probably part of the wire that they used to close up his breastbone after surgery.  Things are really settling down.  Our next cardiology appointment will be in 3 months.

CHD Awareness Week Facts: Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion. Facts from the American Heart Association (http://www.americanheart.org/presenter.jhtml?identifier=12012)

Congenital Heart Defect Awareness Week

I've been having trouble updating my blog.  Not technical trouble, but emotional trouble.  I am grateful to have my son in my life and I'm heartbroken for the thousands upon thousands of mothers who cannot say the same.  I've stood by and watched as more than a dozen children were lost in a matter of weeks.  I cried with their mothers from miles away.  I feel guilty that I still have my son.  I worry that I hurt them when I talk about my gratitude for his continued existence.  

I continue to read their blogs, pray for them and bear witness to their sorrow.  I've been asked if I'm punishing myself.  No, I'm not.  What I am doing is working to ensure I do not bury my head back in the sand.  Intellectually, I know that my story is important, but emotionally I can't help but think I should keep silent.  I have my son and I worry that talking about that fact will hurt people who have been very dear to me.  Those people are going through tragedy like I cannot begin to imagine.

This is National Heart Month.  This week is specifically Congenital Heart Defect Awareness week.  I was born with a congenital heart defect and I wasn't aware of how common such defects are and how deeply they affect those who care for these children.  I think it's hard for our children; they either don't remember how it affected them or are living with a palliative repair that is their normal.  Shawn White is a Tetrology of Fallot (TOF) survivor, yet he speaks out for cancer causes.  He doesn't remember having TOF, he doesn't even think about it except when he's on the way to his cardiologist.  That's what we want for every single one of these kids, and yet, we need them to remember and to speak out.  Because people aren't aware of these vicious horrible defects that break hearts and destroy lives.  I read an article on pediatric open heart surgery the other day and one quote really stuck with me.

"As far as treatments go, heart surgery represents the nuclear option, a bold final effort to save a life by bringing it to the brink of death". (http://www.texasexes.org/alcalde/feature.asp?p=3225)

We risk our children's lives in the hopes that we can have years with them rather than a few precious months.  Sometimes we win and sometimes we lose.  But the fact that we have to take the risk at all is a national tragedy.  The fact that there are parents and children all over the world who don't have the opportunity to take that risk is a worldwide calamity.  

I'm humbled when I look at my son.  I'm grateful he survived and is now enjoying life, able to eat and play with a strength he's never known.  My son was in heart failure from the time he was 4 days old.  I fully appreciate how lucky I am to have him in my life, whole and healthy.  When we go to the cardiologist tomorrow I will marvel at the 4 chambered heart on his echocardiogram.  I will delight in watching him breath easily and smile and laugh.  But I will also remember there are mothers all over the world who don't have that privilege.  That breaks my heart.