Thursday, December 24, 2015

2015 - The Year in Review

2015 has been an amazing year!

TheMan has been enjoying his job at FreightQuote where he continues to be an integral part of their organization.  He lost his beloved 12 year old Honda Accord at the end of December, when the axel broke on his way to work. He has moved into the future with a 2015 Mazda6. He's greatly enjoying his new ride.

Meanwhile, I've been working the stay at home scene and I am looking forward to adding back in contract programming. I'm looking forward to spending some time setting up a company website and refocusing on updating this blog regularly. We're having some new and interesting learning experiences as we explore C and R's personalities and challenges.

C was diagnosed with autism at the end of 2014 (What would have been Asperger's Syndrome under the DSM IV). We started ABA at the end of summer and it has been helping him grow and understand these crazy social rules. We honestly don't notice his quirks until we're around other more typical children. Our foster son T was an integral part in helping us decide to move forward with more targeted social assistance for C. Our family isn't really neurologically typical, so his quirks fit well within our world.

C has always been highly focused on reading, math and understanding the symbols in the world around him. When he started Kindergarten this year, I knew there would be challenges and he sure didn't disappoint. His teacher called almost every day for the first few weeks of school as we worked to figure out how to best help him thrive within the structure and activities of his Kindergarten class. His teacher said that academically, he's a challenge like none she's had previously.  C tested out of all the sight word pools for Kindergarten through Second grade in the first month of school. They gave us his end of year Kindergarten exam with a 100% score at our first parent teacher conference. The teacher assured us she's working hard to ensure his continued growth academically while focusing on the essential Kindergarten skills that he has absolutely no interest in (coloring, using scissors, etc). We are very pleased with C's education goals and are also supplementing his studies at his request at home. C's favorite activity continues to be math where he has moved on to Basic Algebra and Geometry as his current learning focuses.

Along with C's diagnosis of Autism, he also was diagnosed with Developmental Coordination Disorder.  He's been working with OT both at school and at a private practice to gain skills and strength to help him with his motor planning and coordination issues.  I'll talk more about this in future blog posts.

I've been in contact with T's adoptive mom and he's doing great.  She has a lot of great plans to get him into some hippotherapy programs, music lessons and dance classes.  She's a huge supporter of him and is an all around fantastic person.  I'm so glad he was able to find his forever home within his own family with someone so wonderful, caring and responsible.

R has grown so much over the last year.  She continues to amaze us with her gross and fine motor skills. When she was released from the NICU last year on 12/13/14 she was automatically enrolled in our county's early intervention program. Her Occupational Therapist has been amazed by her strength and tenacity as she masters skill after skill in the gross and fine motor categories. She defies the 25 weeker stereotype at every turn and amazes us all. Verbally and socially, however, are a bit of a different story. She's not shown as much interest in these areas, so we have added a speech therapist. We work a lot on eye contact and mimicking at this stage in development. Her independence is shining through, which makes those skills somewhat harder to attain. Because she is at high risk for an autism diagnosis due to her brother and other family members, she will be closely followed and given a lot of support as she develops. R amazes us every day as she continues to show the indomitable spirit that allowed her to sail through her time in the NICU.

Wishing you the very best for 2016!

Friday, December 18, 2015

Transitioning from Pumping to Breastfeeding

For those of us lucky enough to transition from pumping to breastfeeding, there can be some unique concerns.  We're so used to being able to measure output, it can be difficult to trust our bodies and our babies now that the process will be more organic.  Babies are born with an instinct for nursing.  When a newborn baby is placed on the mother's body, they will naturally gravitate toward the breast and begin suckling.  When you are ready to begin trying to latch, you can use that instinct to your advantage.

When bottle feeding, you want to be sure to use paced bottle feeding techniques to avoid flow preference.  This will better enable you to transition to breastfeeding.

Start when baby is hungry, but not ravenous.  When baby is too hungry, all they will want to do is eat right then in whatever method is fastest and most familiar.  Aim for about 15-30 minutes before you'd expect baby to want to eat.   Get comfortable and hang out skin to skin and tummy to tummy.  If possible, plan a nursing vacation.  Pay attention to your baby's cues.  When baby is ready to nurse, allow them to lead the way with a baby led latch.  Here is a great article on awakening your baby's breastfeeding instincts via baby led latching. For visual learners or if you just want to see this in action, check, out this video:

Note the breastfeeding position with the baby in the video above.  Recent research indicates that the tummy to tummy positioning is a far more natural feeding position and is far more conducive to a relaxed and successful breastfeeding session.  Check out this article for more information

I have transitioned both a 5 month old and a preemie starting at around 34 weeks (once the suck/swallow/breathe instinct kicks in).  I found with the preemie that I fully experienced the newborn nursing period.  The newborn feeding period, which goes up until they are 6 weeks adjusted can be super exhausting because it feels like all you do is feed them... for hours... just sit, and feed them... but that is totally normal... and it is all you are doing... it can make you crazy, but it is their instinct to build supply.

We were lucky with my micropreemie to be in a NICU that prioritized breastfeeding.  The doctor's prioritized breastfeeding over bottling.  The goal was to breastfeed for 10 minutes.  This counted as a full feeding.  The doctors gave us a couple of weeks breastfeeding 1-2 times per day with the other feedings by NG before adding bottles in.  Generally speaking, they found this avoided nipple confusion.  The nurses and anyone else who fed baby used baby led bottle feeding strategies and the breastfeeding mom was never the one to give the bottle.

With my older infant, I found that starting with a late night feed where he was mostly asleep gave me the best opportunity for introducing breastfeeding, he was snuggly, relaxed and sleepy and wanted to eat but was also comforted by sucking.  For a few months, the only nursing session we had was at 3 am.  The rest of the time was bottle.  He gradually opened up and we added more nursing times. Our breastfeeding relationship continued until he was almost 3 years old.  I'm still nursing my daughter as of this blog post.  She's 15 months actual, 11 months adjusted.

Mothers, especially those of us who have been obsessed with supply and tracked every milliliter we've produced, find it hard to not be able to quantify consumption.  The biggest thing to remember is if baby is latching and you see swallowing, you have to trust them and trust your body.  As long as they gain weight, you are doing great.  Check out this video (again from Jack Newman's breastfeeding clinic) that shows what swallowing looks like. 

Jack Newman has a lot of great videos over on his website.  You can check those out here I did e-mail him once in desperation while working to get my 5 month old to latch after his open heart surgery.  He answered my questions completely and was very kind.  He can be a great resource.

If, like me, you built a really GREAT supply over the months you were not able to directly breastfeed, you might run into another problem.  Oversupply.  What you once counted as a blessing can now work against you.  Baby can be overwhelmed by the volume of milk and can have trouble drinking enough to get to the hind milk.  I have talked with a number of moms who have had the experience of a baby nursing for a few minutes, then pulling off and screaming with rage.  Some of them thought this was baby getting angry because they wanted milk faster, but in reality, they were experiencing oversupply issues and baby was angry there was TOO MUCH milk... Here is a great article from KellyMom on Overactive letdown/Oversupply and how to manage it.  If you have an oversupply issue and try to decrease your supply to better match baby's needs, be sure to take lecithin and be careful with breast compression to mitigate your risk of blocked ducts.  One risk for blocked ducts is an underwire bra.  I'm a bigger girl and I have found the best, non-underwire supportive bra is this Goddess Women's Keira bra.

I hope these resources can help you as you begin your breastfeeding relationship.  Good Luck!

Other posts in this series include:

Saturday, November 14, 2015

Initiating Milk Supply with a Pump

There are few feelings as helpless as having your child in the NICU.  It can make you feel like you are alone in the world and that you are unable to care or provide for your child. The one thing that you can have full control over is pumping breastmilk.  It provides a tangible outlet for your need to care and an invaluable source of nutrition and healing for your little one.

Twice now, I've had to initiate and maintain supply for my baby for their first several months of life.  My boy C and my Baby Girl both had complex medical situations that meant that we were not going to be able to breastfeed in the first few months of their lives.  I was absolutely committed to breastfeeding and did a lot of research into how to maximize my supply.  I've been answering a lot of questions on this topic and I wanted to take a moment to summarize what I've learned.  My experience is with Medela products and all pump based information will pertain to the Symphony/Pump In Style Advanced pumps, which I used for both of my children.  For exclusive pumping, a Symphony is your best bet for gaining and maintaining supply.

The very first thing you should do if you are reading this article is watch these two videos.  They are the key techniques for successfully initiating and maintaining your supply.

Hand Expression to initiate supply - This video will show you the technique for hand expression that I will refer to later on.  This technique is incredibly important especially during the first week.  Using this technique in the first week can increase your supply by 85%.

Hands on Pumping - Maximizing production by hands on pumping can make a huge difference.  I express almost nothing if I am not massaging while I pump.  If I massage while pumping I will express between 60-90 ml (2-3 oz) per side, without massage I will express approximately 15 ml (half an ounce) from each breast in the same time frame.

Initiating Supply

Your first goal when initiating milk supply with a pump is to pump for the first time within 6 hours of giving birth, if at all possible given your own health and well being.  Do not despair if you cannot achieve this.  Your health must come first, but if possible, at the very least, hand express in that time. For the first week, your goal must be to intensely focus on achieving your expression goals.

Goal 1: Pump 8 times a day for 15 minutes each time
Goal 2: Hand express colostrum 6 times each day in addition to pumping

The pumping goal is pretty straightforward and all NICU lactation teams will tell you establishing a solid pumping schedule will be the foundation of your supply.  I found it easiest to time my pumping to end just before my baby was next scheduled for care.  If, for example, my baby is scheduled for 3, 6, 9 and 12, I'd pump at 2, 5, 8 and 11.  This gave me time to setup, pump, clean up and take whatever I was able to get out down to the NICU in time to participate in my baby's care. It also meant that anything I'd just produced could be given fresh whenever possible.  While you are inpatient, I find this to be a great routine for helping ensure you can spend time with your baby while providing them the most important and sustaining element you can.

Initially, pumping will seem futile.  You'll get next to nothing out and if you've never done it before, you might feel pretty silly.  Keep at it.  That stimulation is critical for signalling to your body that the milk machine is online and needs to get rolling!  You may find that even if the colostrum does come out and gets down into the valves, you'll be unable to get to it.  That liquid gold will be sitting, just out of reach.  It is enough to make a hormonal woman cry... no seriously.. I cried.

That leads to part 2, hand expression.  This is your best bet for getting usable colostrum in the first 2-4 days.  Technique is everything when it comes to hand expression.  First, ask lactation or your Post Partum Nurse to provide you with syringes, caps and labels to store and identify your bounty.  Next, if you have a Medela Symphony starter kit provided by the hospital, find the 45 ml colostrum collection bottle that comes in that packet.  It is your new best friend.  The curved bottom makes colostrum collection with a syringe a snap as long as the colostrum makes it into the container.  If possible, have a second person help you with collecting the colostrum.  Hand expression of colostrum is MUCH easier with a second person doing the collection while you focus on expressing out the colostrum.  Colostrum is thick and drips out slowly, which makes getting it to the container without an extra set of hands a challenge.  Collection only takes a few minutes, ask your L&D nurse if they can help or if there is a CNA who can provide you with some quick assistance if you don't have someone with you.   Using the technique specified in the Hand Expression video above, express as much colostrum as you can.  I usually did this about an hour before I was scheduled to pump.  By day 2, I was getting several milliliters at a time.  I know this doesn't feel like much, but colostrum is incredibly nutrient dense and every drop makes a huge difference.  I always felt proud walking my meager offering down to the NICU.

Keep up the extra hand expression for the first 6 days.  Even if your milk comes in and you start getting good results with the pump.  The extra stimulation makes a huge difference for moms who are away from their babies.  The lactation consultants at Stanford who produced the hand expression video ran a study and found that women whose babies were in the NICU had an 85% greater supply if they hand expressed for the first 6 days.

I tracked my milk production every time I pumped or hand expressed.  Once my milk started coming in I found I gained about 30 ml (an ounce) per day before leveling out around 1100 ml /day.   Don't obsess over every milliliter, but tracking your total output can help identify supply issues before they become critical.

Maintaining Supply

The first 12 weeks are critical for establishing a supply that will last for the year(s) you will be breastfeeding.  Some people call your first 12 weeks post partum the 4th trimester.  Hormones are still raging and chemicals are driving a number of post partum processes including milk supply.  Because your supply is hormone driven at this point, you must be diligent about pumping 8-12 times per day.  One of the most important hormones for milk production is prolactin.  Prolactin levels peak overnight, which is why your morning pump usually produces the most milk.  The most important pump of the day occurs between 1 am and 5 am as your prolactin levels are peaking.  Pumping at that time is a huge part of signaling to your body that more milk is needed. I recently heard some amazing advice for a foolproof way to ensure you don't miss that middle of the night pump. Before you go to bed, drink a bunch of water. Then, when you wake up to pee, pump too. Brilliant!

Power pumping is a great technique for mimicking the growth spurts that your baby would use to increase your supply.  I usually power pumped once every 4 weeks for a week.  I power pumped at 9 at night.  My power pump sequence is pump 20 minutes, rest 10 minutes, pump 10 minutes, rest 10 minutes, pump 10 minutes, done.  This would help boost my supply back if it started to lag.

Once your hair begins to fall out... did no one tell you that would happen? Yeah.. it is totally a thing.  Anyway, once your hair begins to fall out, you can get a little less militant about pumping. You still need to pump at least 8 times per day.   One of those pumps must still be between 1 am and 5 am, but you can stretch a night pump to 4 hours instead of 3 and if you must shift another pump around every once in a while, it is less damaging than it was in the first 12 weeks.  You've finally shifted into supply and demand production instead of hormone based production.

Your goal should be 750 - 900 ml a day per baby, that is the average supply range needed to feed baby 100% breastmilk (fortified or not).  Sometimes you can have a HUGE supply up front and as your body gets closer to that 12 week mark, you start regulating down to a stable, maintainable supply.  It can be scary and frustrating to see your supply drop, however, it can be a good thing.  If you are planning to shift from pumping to breastfeeding, having your supply more closely match baby's needs will mean less problems with oversupply, fore/hind milk issues and forceful letdown once baby goes to breast.

Shield Fit and Pump Maintenance

Comfortable shields are a HUGE must when it comes to pumping.  There are several different shields available for the standard Medela pump kits and I have tried them all.  You can read more about correct shield fit on Medela's website, here

Standard Medela Sized Shields - available in small (21 mm), Medium (24 mm), Large (27 mm), XL (30 mm) and XXL (36 mm)
Medela Glass Shields (ok, I didn't try these, a lactation consultant mentioned them, but I've never seen them)
Pumpin' Pals - This set of 3 sizes gives you a lot of options. 

For me, 27 mm worked best.  I do not follow the rules on the Medela hand out.  My breasts get sucked down into the shields because my connective tissue is really loose. Play around with shields and figure out which ones work best for you.  If your baby is still inpatient, your lactation team may be able to provide you with alternate shield sizes as needed.  Check with them to make sure your pump is fitting you correctly.  A poorly fitting shield will dramatically affect supply.

The other areas to really watch on your pump are the yellow valves and white membranes.  If either of those crack or tear, suction will be lost and your pumping output will suffer.  I change out the membranes about once a month when pumping full time.  I always keep at least one extra set of yellow valves on hand as well.  When they crack it can be subtle, but there is no mistaking the sudden supply drop.

A quick note on letdown:  Letdown is a trained reflex.  At this point, the sound of a pump will start letdown for me.  Establishing a ritual or routine when pumping can help trigger letdown.  I always had ice water with me and would take 3 big swallows when I started pumping or when I cycled back to the initiation phase (which I did every 8 minutes for 3 letdowns total).

Tools and Accessories

When my daughter was unexpectedly born at 25 weeks, I was frantic to get a few supplies that I knew would make my life easier.  For those who aren't frequent blog readers, my son was born with a cardiac defect and I spent a lot of time pumping while inpatient.  I had a very clear idea of what I wanted with me as we climbed back onto the hospital roller coaster.

  • The Simple Wishes Hands Free Bra in Small-Large or L-Plus (I use L-Plus) I prefer the black to the pink.
  • The grasspad Drying Rack - Great for drying annoyingly shaped pump parts.  The flower holds a bunch of valves and I put the membranes in the cup of the flower.  Works very well. 
  • Extra Pump Parts - I cannot emphasize enough how much extra pump parts help.  You can put the set of pump parts you are using in the fridge and use them several times over before you wash them, but in the end, I find 3-4 sets of pump parts makes all the difference.  We were inpatient so much with my son that I ended up with about 20 sets.  I kept 2 at the hospital, 3 at work, 1 in the car in case of emergency and the rest were used at home.  I only washed pump parts once a day at home, even on the weekend when I'd pump 10 times.  It was great!
  • Coconut Oil - I put a little on the shield and a little on my nipple, friction is NOT your friend.  I like coconut oil because sometimes it is solid and easier to control ;)
  • Lanolin - after pumping, lanolin can be amazingly soothing.  I found the medela lanolin lovely and easy to spread, the other stuff I tried was much thicker and seemed to add to my pain as I tried to spread it.  I also use this as my first line of defense diaper rash cream. 
  • All Purpose Nipple Cream - If your nipples do become cracked, or get a yeast rash or are just miserable, Jack Newman's all purpose nipple cream is AMAZING.  Your OB has to prescribe it and you have to get it at a compounding pharmacy, but it is TOTALLY WORTH IT.
  • Steam Sanitizing Bags - living in the hospital makes me positively germ-phobic.  The steamer bags give me peace of mind.  We don't sterilize nearly as much once baby isn't fragile, but in those scary months where everything is looming and scary, I'm a super clean freak!

In case you need it (and I hope you never do) here is a link to my master hospital packing list.  I use this as a checklist when anyone in our family goes inpatient.

Fresh vs Frozen

When it comes to breastmilk, fresh is best.  Unless you are in the first two weeks post partum, in which case, colostrum, fresh or frozen is better than anything.  So, use up the entire supply of your first 2 weeks of milk, then start trying to get fresh milk to baby whenever possible.  Fresh milk will be more "alive" than its frozen counterpart.  You will also have fewer lipase issues with fresh milk (the fresher the better). I was able to supply my daughter's daily needs for fresh milk with 1-2 pumps a day.  The rest I froze and eventually donated as I was able to keep up with my daughter's long term needs.

Also, if you have to change bottles mid pump (we had 2 ounce bottles and I had one side that would do way more than that), the second set of bottles contain higher fat content hindmilk and you should mark them so they know to use them first.  Our NICU had special stickers used to mark hindmilk.  I would pump until both sides were about 1 ounce down and then I'd take one bottle off, replace it, take the other bottle off and combine it with the other and pump hind milk on both sides.


Galactagogues are foods or medicines that can increase your supply. Kellymom has a great article on galactagogues.  I've also written a fair bit over on an article I wrote several years ago.  Go here to read it or read on for a brief summary.  Drink water, LOTS of water.  Oatmeal = awesome.  Oatmeal increases prolactin.  Steel cut oats are best.  You can make steel cut oats in a crockpot, rice cooker or on the stove, but these days I use an instant pot which is all in one.  Eat oatmeal every day to increase your supply. You can also try lactation cookies.  Brewers yeast seems to be another great food to increase supply (though it tastes bitter, yay cookies and sugar for helping cover the taste).  You can branch into herbal remedies, I like Motherlove's product line a lot.  If you have serious supply issues, your doctor can prescribe medication.  I'd avoid Reglan, my research indicates it is prone to more serious side effects than domperidone.

Extra Milk

If you do end up with an overabundance of milk, you can donate the extra to help other NICU babies.  For those of us in North America, you want to find a member of the Human Milk Banking Association of North America.  These milk banks are non-profit and provide pasteurized human milk to the babies who need it most.  You can find other banks, but some of them are actually run by for profit companies such as Prolacta (Makers of human milk based human milk fortifier).  Those banks accept your milk and then turn around distill it to its components and sell it for a huge profit.  They do offer incentives such as donations to other charities, but for me, I'd rather donate to a HMBANA member bank.


Facebook has a support group for just about every condition or happening these days.  As a rule I've found these groups supportive and amazingly useful as I navigate these times.  Babycenter also has a number of helpful groups and La Leche League can also be a big help.  For general research and questions, Kelly Mom is incomparable and should be your first stop.

As of this writing, Baby Girl is 14 months old and still nursing about 6 times per day.  I breastfed my son until he was almost 3 years old, he stopped when my milk dried up during my previous pregnancy.

I hope this helps you on your journey.  Thanks for reading.

The short link for this post is (link is case sensitive)

Other posts in this series include:

Monday, October 26, 2015


I hate the vaccination debate.  I hate that there is this weird peer pressure out there to prove you are a proactive educated parent by ignoring 200 years of science in favor of your own 200 hours on Google.  I hate that the way the "make your own decision" statements are worded imply that if you choose to vaccinate, you obviously aren't didn't research well enough.  I hate the implication that "good parents" don't follow their doctors advice, and that is how you prove you are good.  I hate that people say "read the package inserts" but don't actually understand what they are reading.  I hate that people don't trust their own doctors (If you can't trust your doctor, find one you can trust).  I hate that the anti-vax movement sneers at herd immunity while depending upon it to protect their own children.  I hate bad science and shoddy studies.

Vaccinations save lives.  Herd immunity means that preventable illnesses don't spread like wildfire through a population. Why do I worry about your unvaccinated child playing with my vaccinated one? Because vaccination doesn't guarantee immunity on an individual level, a group of vaccinated people prevent an epidemic.  When you don't vaccinate, you increase the chances an epidemic can occur in a given population.  Vaccination isn't an individual decision, it is a community protection.

If you are out there wondering whether you should vaccinate yourself or your kids, the answer is talk to your doctor.  Explore your medical history and that of your child with your educated medical professional.  If your doctor, after assessing your specific medical situation says "Yes, you should receive this vaccination" then, yes, you should vaccinate.

Wednesday, February 25, 2015

Education is an economic program, not a social program

Education is the foundation of solid economic policy. It is not a social program, though it is treated as one in the United States. Countries that emphasize creating a skilled workforce have a more agile, better performing economy. Kansas is on track to gut our entire education program. These policies threaten our state for generations to come.

Yesterday's vote to defund Parents as Teachers is yet another example of Kansas's short sighted devaulation of education.  The Parents as Teachers program provides invaluable community outreach helping to ensure the academic success of at risk populations. The program is a vital part of the safety net that ensures a strong foundation for our future generations.  Infant and Toddler Services and the Early Childhood Special Education programs help mitigate long term costs of providing a Free and Appropriate Public Education.  
An overall value on education with an innovative and appropriately funded public education program will ensure a robust, versatile and flexible workforce that will do more to lure businesses to our state than any tax incentive we can offer.  

Our Governer and respected Representatives need to reconsider their education policies in light of all the studies that show funding education pays an overall net gain in our economic future. Kansas is on a dangerous path of income inequality and injustice.

NICU Graduate - Baby Girl's Gone Wireless!

Baby Girl had her second NICU follow up today and she looks great!  Everything from head shape to weight gain is fantastic.  She seems like a typical 7 week baby, which is amazing considering where we started.  She's beautiful and so much fun to cuddle.

Mama is a bit nervous to be going wireless, we'll be using a Snuza monitor for the forseeable future.  We're working on adding more tummy time now that we are wire free.  Baby Girl gets OT through Infant and Toddler Services - a wonderful and very awesome organization (they are a 501(c)3, I think you can donate to them if you'd like).  We also receive support and help with early childhood development from Parents as Teachers.  Or at least, we do for now. Apparently, the committe that manages Parents As Teachers budget has decided to defund it, ending the program.  This would be a huge loss for families across Kansas.

We're so grateful for everything the St. Luke's NICU has done for us.  The doctors, nurses and support staff are top notch.  An amazing group of people who work tirelessly to care for a very vulnerable group.  We're so thankful we were in the right place at the right time.  We know our story could have gone very differently.

Baby Girl was 22 weeks old on the 22nd of this month.  She's a NICU Graduate!

Tuesday, February 10, 2015

CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.

Monday, February 9, 2015

CHD Awareness Day 3, Siblings

The decision to have another baby after C4 was really hard.  We were very scared of another CHD.  The odds increased to 2-3%.  We ran some genetics tests on C4 and determined that he didn't have any obvious syndromes that would effect the heart, this is part of what gave us the courage to try again.  We are so lucky to have Baby Girl in our lives, she's a different adventure, as all kids are.

Even though Baby Girl was born heart healthy, her prematurity led to the possibility of a couple of defects that occur when the fetal circulatory system doesn't correctly shift over after birth.  She could have had a PDA or a PFO which would have needed to be surgically corrected.

Sunday, February 8, 2015

CHD Awareness Day 2, medications and surgeries

Today is day #2 of CHD Awareness week.  Today's topic is medications and surgeries.

C4 has been on multiple medications since birth.  Prior to his first open heart surgery, we danced the delicate edge of heart failure.  We gave Lasix (which tastes terrible) to reduce swelling in his belly and fluid in his lungs, this threw off his electrolytes so we gave him sodium and potassium (which taste worse than the lasix) to try and bring his electrolytes back into alignment.

We gave medications to speed his digestion and medications to decrease the acid in his stomach because when your heart doesn't work right, your body prioritizes where your oxygenated blood goes and your guts are not the winner.

After Open Heart Surgery (OHS) #1, we started on an ace inhibitor (blood pressure med) to decrease pressure on the repaired valves in his heart.  No one is sure it will help prolong the life of the valve, but it might, so we try.  For weeks to months after surgery, you stay on Lasix as your body gets used to a newly efficient circulatory system and starts appropriately sending fluid out of the body.

Between surgeries, we only have to give a few syringes 2-3 times a day, to stimulate appetite, because he never learned what "hungry" means, to continue to protect his valves from the wear and tear of life.  Steroids for his lungs which are struggling under the backflow from a leaky valve until finally, the tipping point comes and we must have surgery again.  The goal for open heart surgery is to have the surgery just barely before the person gets sick.  On the cusp of something awful happening, so you eek out as much good time before surgery as you can and the patient still has the reserves to withstand the trauma of the surgery.

The first surgery was hard on C4's sinus node, the second one damaged it somewhat significantly, which may lead to a third surgery. In the mean time, we enjoy each day, we eek out as much good time as we can get, waiting until we are on the cusp again.

19 days post op, OHS #1

Saturday, February 7, 2015

CHD Awareness Day 1, Diagnosis

(Originally posted on Facebook)

2/7/2015 is the first day of CHD Awareness week. I never thought I'd be on such a journey with my child, it is a journey I wish my son didn't have to walk. He's currently very stable and I hope he says that way for a very long time. We check his heart rate yearly. His surgeries damaged his sinus node, so it doesn't fire as it should, some day, he may need a pacemaker. Some day, he may need a valve replaced. We are part of the 1 in 100 children affected by Congenital Heart Defects.

C4 was born with a Complete AV Canal Defect with Overriding Aorta. Essentially, he didn't have the septum down the middle of his heart. His body compensated for the lack of a septum by creating one large valve that spanned the entire heart instead of the two valves that should be present. His aorta was further over than it should be, which edged him toward a second defect called Tetrolagy of Fallot. We were able to avoid that diagnosis by a matter of millimeters. Here's the blog post from the day we found out about C4's defect, it is also the impetus for this blog and my very first post. ‪#‎chdweek‬ ‪#‎1in100‬

Friday, February 6, 2015

Preemies are exhausting... Cardiac babies are super exhausting

Baby Girl hit 10 lbs!! 

Baby Girl has nothing on C4 when it comes to exhaustion.  Trying to get a cardiac kid up to 10 lbs for surgery is far more difficult in my experience than keeping this preemie gaining weight.  Baby Girl hit 10 lbs today at 19 weeks, 4 days.   C4 was 11 or 12 lbs when we had surgery at 15 weeks old. The thing is, C4 was 6lbs 4oz at birth and Baby Girl was 1 lb 10 oz.  She's gaining weight by leaps and bounds compared to him.  She LOVES eating, is almost entirely breastfed (we do 2 fortified bottles a day to boost some nutrients preemies need) and will eat practically anytime food is on offer.

 C4 is on an appetite stimulant to this day.  He's never had fat rolls like Baby Girl. We used to spend 30 minutes coaxing 2.5 oz down C4, Baby Girl takes 3 oz in under 10 minutes and then cries to go back to breast and top off.  So very different!

C4 has yet another sinus infection, poor kid is always sick... I still hate winter.

C4 has been doing very well in his preschool.  He's made leaps and bounds in imaginative play and social skills.  Yesterday when I was feeding Baby Girl, he brought down his baby and fed her in the seat next to me.  Academically, he continues to startle and confound us.  We caught him multiplying 2 digit numbers last night.  It took us a minute to figure out what he was doing, the first "number sentence" we realized he was creating was 18x22, he did the math in his head, school is going to be an interesting mix of problems for us.  We will be learning about our Kindergarten options next week.


Friday, January 16, 2015

Cold and Flu Season is terrible

I hate cold and flu season... C4 is sick again. He gets sick or has symptoms 3 out of 4 weeks. I basically have to avoid interacting with him 90% of the time. Baby Girl and I are confined to the living room and I'm sleeping on the couch instead of in my bed. I feel like we're damaging C4's relationship with his sister and with me. It is absolutely breaking my heart :(

Baby Girl remains on a monitor for apnea and bradycardia. She's had 2 alarms, the latest was yesterday.  I think I'd like to keep the monitor for at least another month.  Last time baby girl had shots she started alarming and had to go back on oxygen support.  I'm worried that will occur again with our next round of vaccinations.

Our weeks are filled with appointments right now.

  • Baby Girl had an eye appointment 2 weeks ago and her eyes continue to develop normally.  Our next eye appointment is in 2 more weeks, hopefully it will be our last.  
  • C4 had a cardiology appointment where we had an EKG and an echo followed by a 24 hour holter monitor.  His overnight heart rate was a little lower than last time, but things mostly stayed the same.  He had some extra atrial beats, but they appear to be an isolated finding.  Overall, he's managing his lower heart rate very well and the rhythm is a standard sinus rhythm.  
  • Baby Girl has weight checks at least once a week and she's continuing to gain about 30 grams a day.  The last 3 days had a slight dip to 26.6 grams a day, but hopefully that was a fluke.  Our home health nurse also gave her the synagis shot so we didn't have to risk the doctor's office while the flu and RSV appear to be peaking in our area. Baby Girl weighs in at 8 lbs, 5oz.
  • C4 had his GI follow up, he's gained 3 lbs in the last 3 months, which is amazing!  He did not grow any taller over that time period.  If he continues to follow his usual pattern, this means he's about to shoot up in height and become super skinny again.  I asked our GI doc about the Autism team's recommendation that we offer only one family meal and make C4 wait if it isn't food he wants to eat.  We have tried this before, both with food and water.  When we tried with food, C4 didn't gain weight, height or head circumference, which is a very concerning issue.  When we tried with water (trying to get him to drink from a cup without a straw) he became dehydrated to the point he stopped urinating.  
  • Baby Girl had her initial meeting with Infant and Toddler Services, she automatically qualifies for services based on her gestational age.  It was good to see the people we'd worked with previously for C4.  He's certainly prepared us well for the services we'll need again for Baby Girl