My Breastfeeding Story Part 3

In CategoryBreastfeeding, Down syndrome
ByLisa

Part 1 is HERE and Part 2 is HERE

Part 3

So now I got this! After Peanut I was feeling like a breastfeeding pro.  Breastfeeding is a very important part of my mothering identity.  This is how I fix my babies bumps and bruises, this is how I put my babies to sleep. I felt confident so confident when I was pregnant with baby 3 I barely gave it a thought outside of my excitement at getting to nurse again.

Then, we got Froggie’s diagnosis.  At 4 1/2 months pregnant we found out Froggie would have Down syndrome (Ds). You can read his diagnosis story HERE.  While researching what this meant to our family I discovered that babies with Ds can’t nurse. Well, that was what it seemed like from everything I was reading.  Once we knew he would be healthy this idea, that I would not be nursing, overwhelmed me.  How would I parent this child?

Luckily I kept reading!  I learned that many babies with Ds can’t nurse because of low tone in their mouths and for other health related reasons.  More importantly I learned that some babies with Ds DO nurse! So I went to work learning everything I could about nursing a baby with Ds. I came across a specific hold called “Dancer Hold”. This hold can help a baby latch who has low tone.  I printed out a pdf about this hold and packed it for the hospital.  You can see it HERE. I also called and spoke with the lactation consultant on staff at the hospital and spoke several times with a lactation consultant in private practice.  I spoke with LLL leaders and friends.  I was so scared he would not nurse.

When Froggie was born and we were wheeled into recovery after my C-section I immediately tried to latch him.  He LATCHED! I was so incredibly overjoyed.  I knew his latch was not great and we were going to have to work at it but he did latch.

Over the next 24 hours several nurses asked me if I was ready for a pump and bottles for the baby. I ended up getting very frustrated with them and sent my husband to tell them to leave me alone.  We would be nursing. The lactation consultant came in and I asked her if she was familiar with the Dancer Hold. She said she was not so I gave her the pdf and asked her to learn about it and come back. To her credit, she did! I was a bit pushy about anything having to do with nursing. Well, I was a bit pushy with anything having to do with Froggie.

It took us about 24 hours for him to get it and start nursing well.  About 26 hours after birth he started pooping and peeing like he was supposed to.  Every medical person that came into my room seemed so surprised he was nursing.

My 2nd night a more experienced nurse was on duty and she came into my room about 3:00 am.  I was up nursing.  She commented how well we seemed to be doing.  She was a bit older than the other nurses and I told her my experience with the nurses. I told her how surprised I was that they kept pushing bottles.  She told me that the problem was that they “knew babies with Ds don’t nurse”.

Many babies with Ds do nurse! It is a bit harder and takes a bit of work. It is also true that many babies with Ds simply can not nurse because of different medical conditions they are born with. We are lucky.

Today at 19 months old we are still going strong.  Since I believe in child led weaning he will probably nurse for quite awhile, and I am fine with that!

2014-07-10 17.09.082014-05-25 15.24.06

 

Boba 3G Father’s Day Giveaway!

In CategoryGiveaways
ByLisa

Here is a fun giveaway! Little For Now has generously donated a Boba 3G baby carrier in Pinstripe for us to giveaway for Father’s Day.

I have a Boba that I use sometimes with Froggie and I love it!  Here is some information about this carrier:

Boba Baby Carrier 3G

This is my personal favorite carrier!  I started using it after the newborn stage with my son and I love how comfortable it is to use.  This carrier makes baby wearing easy!

The Boba Carrier 3G is great for both babies and toddlers between 15-45 pounds. This makes the Boba a much better deal than the kinds of carriers you’ll see at big box stores.

It comes in several fun patterns and beautiful solid colors. You can wear your baby on either your front or back.

Not only is the Boba more ergonomic for you and your baby (ergonomic is a fancy word for COMFORT) – the wide weight range means you’ll get plenty of use out of it. Most kids will fit until they are 4 years old or even older.
The Boba Baby Carrier has unique foot straps that allow your little one to rest their feet without dangling. This is important for toddlers as it is better for their hips and legs, as well as to keep them from kicking you as you walk.
You will be amazed at how light your child feels in a Boba Baby Carrier. The longer body and wider back mean that your little one is completely enveloped and held close to you. This is better for weight distribution and keeps your toddler from leaning back and throwing off your center of gravity.

Why a Boba Baby Carrier 3G?

  • 100% Cotton
  • Front and back carry options
  • Removable sleeping hood
  • Adjustable sleeping hood, adjusting in length to fit growing babies
  • Zipper pouch may be used to store your hood when not in use
  • Comfortably fits heights 5’0” – 6’3”
  • Waistband range: 25” – 58”
  • Additional adjustments for easier fit & breastfeeding
  • Patent-pending removable foot straps
  • Elastic bands neatly roll up straps
  • Shoulder strap holders keep purses and diaper bags in place
  • Easily adjustable chest strap
  • Uniquely designed to “hug” your child
  • Converts to an infant carrier without an insert
  • Extra head support adjustments for infants
  • Body of carrier rises 2-3” higher than other brands
  • Multiple pockets for on-the-go storage
  • High quality military grade buckles

Good luck and Happy Father’s Day!

Boba 3G in Pinstripe

Boba 3G in Pinstripe

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My Breastfeeding Story Part 2

In CategoryBreastfeeding
ByLisa
Breastfeeding has always been very important to me. When I tell my breastfeeding stories I always think of them chronologically.  I had a unique experience with each of my three children.
 
This will be a three part series.  One post per child!
 
Peanut
———
My second son was born 11/5/06 is a much different story than my first son.  I had Placenta Previa again and was admitted to the hospital at 33 weeks.  He was delivered via emergency C-section at 35 weeks after I started hemorrhaging and spent 9 days in the NICU.  I started asking for a pump in recovery.  The nurses kept telling me it was too soon to pump. I finally got the pump about 8 hours later after trying to get out of bed to go find the pump myself.  There were no IBCLC’s available since he was born on a Friday night.  I went online and learned online how to hand express colostrum.  After much work I finally collected some colostrum.  I was so excited to even get that small amount for my baby and sent my husband to the NICU with it and the nurse told him it wasn’t enough AND THREW IT AWAY.  I later learned the nurse was a “floater”.  I was devastated.  My poor husband was afraid to come back and tell me what had happened.  I cried and started expressing again.I pumped every two hours. When I was released on 11/7/07 my husband drove me straight to a place to rent a hospital grade pump and my baby received my milk first through a feeding tube.  He then progressed to bottles.  At this point I was too tired, scared and emotional to fight for an alternative feeding method.  When he was released from the hospital he would not latch.  I would try to nurse him and then pump while my husband gave him a bottle every two to three hours.

When he was about 2 months old I had enough. I was tried of pumping and nursing him.  I despised the pump.  One day I called my hubby at work and told him I was done with bottles.  I drove him to the doctor to be weighed and spent the next two days forcing him to only nurse.  He cried, I cried and he finally got it and we got a good latch.  I did have some help from an LC but I think it just clicked for him one day.  Once I got him latched he would get very impatient waiting for let down.  The LC came back and showed me the SNS system.  I could not use it; I did not have enough hands.  I instead filled a bottle and would dribble milk on the corner of his mouth and that calmed him until the let down happened.  I had to continue pumping some because I was producing WAY more than he ate.  I started pumping just enough to make me comfortable with the hope of adjusting my supply.  The next problem we had was his frustration at my super strong let down (from all the pumping).  I learned to take him off and let the milk spray into a towel and then re-latched him.

I am very proud to say that by the time he was 2 1/2 months old he was exclusively breastfed (from the tap).

I returned to work at 4 months and pumped once again while at work.  I nursed him on my lunch break and evenings, nights, and weekends.  I was only working 4 days at first and that helped.  He easily went back and forth between breast and bottle.  He also did some reverse cycling (nursing lots at night) which was fine with me since we co-sleep.

I am very proud that he had nothing but mother’s milk.  I worked very hard at this and it remains one of my biggest mothering accomplishments.

Peanut nursed until he weaned at about 3 1/2 years old!

William Nursing about 2 years old

William Nursing about 2 years old

My Breastfeeding Story Part 1

In CategoryBreastfeeding
ByLisa
Breastfeeding has always been very important to me. When I tell my breastfeeding stories I always think of them chronologically.  I had a unique experience with each of my three children.
 
This will be a three part series.  One post per child!
 
Bug
—-
 
When I was pregnant with Bug someone gave me Dr. Sears book “The Baby Book”.  I really felt that some parts of it really felt right.  I was still very mainstream in many of my ideas and was a long way away from the mother I would become.  Breastfeeding seemed like a non-issue.  Of course I would breastfeed.  That was best for the baby, right? 
 
When I shared this with family and friends some were SHOCKED I was going to breastfeed. I heard everything from “It will hurt” to “you will never last” to “but then we won’t get to feed the baby”.  If you know me then you know that I do what I decide to do.  I don’t often change my mind.
 
I took a breastfeeding class at the hospital I was going to deliver at.  Best choice ever!  My husband even attended and he was a great help to me after Bug was born.  
 
I was ready!
 
Bug came into the world on May 23, 2003. I had placenta previa and started hemorrhaging and he was born via emergency c-section. He had to go to the NICU for a few hours.  Once he came from the NICU the nurse told my husband and me that I was not allowed to hold him because I might be a bit out of it from surgery and she was worried I would drop him.  We said fine and she left and I immediately tried to nurse him.  The nursed walked back in and told me not to do that, it was too soon. I was a first time mother after a traumatic delivery so I listened to her.  After all, she was the expert….so I thought.
 
Luckily Bug latched well and nursed well. He gained weight and pooped, a lot! The first few days were a bit rough.  I can remember being in my hospital bed and trying to figure out how to get the baby on my breast.  My husband had attended the class with me and told me “honey, just RAM” through tears I could not think.  He walked over took the baby’s head in his hands, pause and suddenly thrust the baby onto my nipple.  I remember being shocked for a moment. Then I remembered what RAM meant: Rapid Arm Movement.  Basically it means, when the baby opens his mouth wide enough shove your breast in quickly!
 
At 6 weeks old I started pumping to prepare to return to work full time at 8 weeks old. Pumping was hard and uncomfortable but I had to get back to my 50 hour a week job and Bug needed the milk.
 
When I returned to work I was lucky that I found a daycare about 1 mile away.  I went to the daycare everyday at lunch and nursed. They were annoyed because I ruined their scheduling but I didn’t care.  I pumped several times a day at work.  My boss was less than thrilled. He was very annoyed to find my office door closed and locked during the day.  He felt like he should have access to me at all times that I was working.
 
When Bug was 6 months old I started having supply issues.  I no longer was pumping enough milk.  So I started pumping at home in the mornings and at night.  When he was 9 months old I had to start supplementing with artificial baby milk (formula).  I just could not pump enough milk.
 
I stopped pumping at 12 months and Bug weaned on his own at 13 months.  I was really sad when he weaned.
 
In preparation for my second child I researched breastfeeding quite a bit.  I didn’t want to experience the same problems.  I learned that there were many things I did and didn’t do that contributed to my low supply.  I did not nurse him enough, pump enough or start co-sleeping early enough.  I would not repeat those mistakes with baby number 2!
 
If you want to be notified when Part 2 and Part 3 are done you can sign up for notifications HERE!
 
Here is a picture of me nursing Bug at 1 day old:
 
 
breastfeeding 5-24-03
   
   
 
 
Here is a picture taken at about 5 weeks old:
 
lisa bf-cropped

Person First Language – Why does it matter?

In CategoryDown syndrome
ByLisa

If you had told me a couple years ago I would care so much about this I would have laughed.  Funny how having a kids with special needs can change you. My children are amazing wonderful people and I want them to be recognized for the amazing people they are.

When Froggie was 5 weeks old he was admitted to the hospital for RSV.  It was scary. During our week stay I heard him referred to several times as “the Down’s baby or the Down’s patient”. When I heard this my blood boiled.  It really bothered me.  But I did not say anything.  He was an inpatient and I needed the nurses and doctors to be easy to get along with since we were stuck there.  But every time I heard it I got upset. When he was discharged I did have a conversation with the hospital on the phone and they agreed to do some training with their staff on person first language.  For more on person first language please check out this link: http://www.thearc.org/page.aspx?pid=2523

It does matter.  I want Froggie to be and feel valued.  I don’t want him or any of my kids dehumanized in any way.  I decided that I would not be quiet if someone referred to him (or anyone) this way in the future.

Well, today was that future!  Froggie had a procedure done today to check if he has something called Hirschsprung disease.  Fortunately he does NOT!  We were at Children’s Hospital Los Angeles and the doctor came in room and asked the nurse “is he a Down’s baby”. You will be proud to know I immediately addressed it. I told her she should not call him a Down’s baby. His name is Froggie and he happens to have Down syndrome and not using people first language is a great way to offend people.  To my surprise she said I was right and apologized.

It does matter. Words can hurt. Not only can they hurt the person that is being discussed but when we put the disability first we are keeping old prejudices alive. This is not about being politically correct. This is about being respectful of people and showing that ALL people have value.  When you use person first language it can change the way people view a person and even the way that person may view themselves.

2014-03-06 17.23.52-1

Happy 1st Birthday Froggie!

In CategoryMy Eco Fabulous Family, The Boys
ByLisa

P Swing - Copy

On this day 1 year ago I finally got to meet you.  I will not lie, I was terrified.  I was so scared because you have Down syndrome.  I had done autism, hell I did that twice but for some reason Down syndrome scared me.  A lot of it was worries about your health and a lot of it was worries about the unknown.  Well I have learned more in the last year from you than I could ever have imagined!  Here are some of the things I have learned:

I will do anything (anything!) to hear your laugh.

Your brothers have so much love to give and you have them wrapped around your finger.

Your Dad is an amazing father (not that I didn’t know that already!).

The sun can be inside a person and sparkle out their eyes.

Your cuddles can cure even the worst day.

You are mighty and you are a fighter.

You know what you want and how to get it.

I hope I can be more like you when I grow up!

You will be able to keep up with your brothers.

Your smiles can change everything.

A diagnosis is just that and does not define the person.

Most of all you amaze me.  Everyday I look at you and a feel so lucky to be your Mom.  Thank you for picking me.  I only hope that I can do you justice.

Happy 1st Birthday baby! IMG_2538

 

Work at home Mom…uh huh, sure….

In CategoryMy Eco Fabulous Family
ByLisa

I work from home now.  Well, I am not sure what you call what I do.

When Bug was born in 2003 I was walking that typical modern day Mom line.  I returned to work when he was 8 weeks old.  I worked for an aerospace company as a Program Manager and 60 hour weeks were the norm.  It was rough.  To the delight of my boss I pumped every two hours and raced to the day care center at lunch everyday to nurse.

When Peanut was born in 2006 I had the same job.  I got admitted to the hospital at 32 weeks and worked everyday from my hospital bed.  I had work delivered and picked up every day.  After Peanut was born I managed to stretch my leave to 4 months and then went back 3 days a week using vacation hours I had saved for years.  To my boss’s delight again I pumped.

When Peanut was 3 I knew things had to change.  So I bought an online business and decided to try to make it work.  I worked days in aerospace and nights on my store that sells eco-friendly products for babies and moms.  I LOVED it and am passionate about it.  In the spring of 2010 I could feel things changing at my day job and finally made the jump to WAHM in June 2010.  My online store was not enough so I did (an do) independent contract work for different companies.

In 2013 our family was completed with Froggie.  I was working while being prepped for my C-section. I took about 8 hours off.

Now I have 4 jobs.  My online business plus 3 other jobs.  I work all. the. time.  And I never work.  Yep, you read that right.  I am constantly working…or not. Maybe we could say that I work at trying to work.  I have 3 special needs kids so that means 3 sets of therapies. Some times more therapy than others.  A typical day starts with me taking Bug and Peanut to school.  I rush home and grab a bit to eat and try to move Froggie and my computer to my office where I will try to get an hour or two of work in before Froggie’s therapy. Sometimes this happens, and sometimes it doesn’t.  It depends on Froggie’s mood.  After therapy I rush out for appointments, errands and to pick up kids.  Then home and while we do homework I am trying to get some work done.  Every time my bum hits the chair a kid needs something or a kid hit someone :) .  At the end of the day I realize that I spent more time running around doing errands and breaking up fights then I did working.

The end of my day usually ends up with me on the bed working while the kids sleep, hopefully.  Tomorrow it will start all over again.

Thank God! Yes, thank God.  I am so grateful for my messed up crazy life.  Somehow I manage to get enough work done to fool everyone and I get to be there to break up fights.  I get to nurse Froggie on demand.  I get to yell at Bug about his iPad. I get to have Peanut sit on my lap. When I think back to my Program Manager days and my 60 hour weeks I am so incredibly grateful that I am home.  Even if this doesn’t last much longer, I cherish the days that I get tell Peanut to GET OFF THE BABY for the 100th time.

Not to be cliché but before I know it there will be no more babies.  The house will be quiet because they will all be off doing their own things.  Then what will I do?

 

Bug, Peanut, Froggie and the cousin!

Bug, Peanut, Froggie and the cousin!

Your baby is different, now what?

In CategoryDown syndrome
ByLisa

When I got my pre-natal diagnosis I was very lucky. Peanut goes to a very special school and I was quickly able to connect with moms who have a child with Down syndrome.

These moms let me know it would be ok. They let me know what to expect. They told me and showed me how wonderful, strong, amazing and smart their kids are.  I had a community, a place to belong and feel safe. I was very lucky.

I can’t imagine going through those days after the diagnosis alone. But this happens all the time to expecting moms. That is one of the reasons for the high abortion rate for babies with Down syndrome. I have seen figures between 85% and 95% abortion rate. It is high, too high. What if those moms and dads had a buddy to help them through this? Someone who has been there, who is there now!  Who can tell them the facts?  Some doctors tell their patients lots of horrible scary things about Down syndrome and none of the wonderful things.

I hope I am lucky enough to connect with pregnant moms in this position. I want to tell them it will be ok. I want them to know that while this is not the path they planned on taking it will be a beautiful, wonderful path. Yes, there will be tears. Yes, your child is not what you were expecting but she will be more than you ever expected.

Froggie is such an amazing wonderful gift.  This Thanksgiving this is what I was thinking about the most.

2013-11-14 12.16.40

 

So you have a kid with Down syndrome

In CategoryDown syndrome, Guest Posts
ByLisa

suprised baby

When we found out Froggie was going to have Down syndrome I didn’t think twice about telling people about it.  I was shocked and continued to be shocked by the rude, crazy, heartless and just plain ignorant comments I get from people.  It amazes me the things I hear.

With the help of CAPODS (a Facebook group for Parents of kids with Ds in California) I compiled a list of things parents have heard when people found out their child has Ds.  I sent this list to my friend Karen Morano and asked her to help us come up with smart ass responses to some of these comments!

Thank you Karen Morano!

Don’t they die when they are about ten?”

“Yes. My twenty-five year old is just being stubborn.”

“I think you’re thinking of dogs, perhaps.”

“Most live long enough to get the Denny’s senior citizen discount.”

“Yes, that is when all their extra chromosomes EXPLODE. I do hope you’re not sitting next to my daughter when it happens.”

“No, we’re electing to keep ours alive until adulthood when we can sell all her fully-developed organs on the black market for drug money.”

“Yes. They are also reincarnated into their own bodies quite often”
“Well if you have to have a disability, this is the one you want”

“Doc, I’m a collector. I want them all. Is Down Syndrome part of a starter kit?”

“Down Syndrome? No, I’d rather my child have Up Syndrome. Down Syndrome just sounds negative.”

“If I have to have a disability, this is the one I want—wait, did my kid get diagnosed with a disability or did I?”

“Does it come with a free set of kitchen knives?”

“So Down Syndrome kids are more likely to have heart defects, gastrointestinal problems and all these other things that go wrong but this is the one I want my child to have?”

“I respectfully disagree. Models with Crie de Chat Syndrome have a higher resell value.”

 

“You know, you can train her to keep her tongue in her mouth.”

“That’s great. Can we train YOU to keep your mouth shut?”

“It’s an automatic cooling device, it saves us on our air conditioning bills.”

“Really, that’s the biggest thing we need to be concerned about? Her keeping her tongue in her mouth?”

“Could you maybe focus on keeping YOUR daughter’s tongue in her mouth and let us worry about OUR daughter?”

“Why worry about it? It’s her Michael-Jordan-makes-a-slam-dunk face!”

“But whenever she closes her mouth her eyes bug out, then if we push her eyes back in her ears stick out”

 

“Wow, your baby looks so normal!”

“Wow, so does yours!”

“Wow, so does yours! Does he have Down Syndrome, too?”

“Wow, so do you, and we all know you’re batshit crazy!”

“My baby looks so normal. Is that supposed to be a compliment?”

“So did Clark Kent, and he was Superman!”

“Why, what’s he supposed to look like?”

“You have a normal-looking baby. Hmmmm. Well, you have very normal-looking children, too.”

“What, exactly, do you mean by that? Does he look abnormal somehow?”

“Well, where I come from, we tell mothers they have beautiful babies, not that they look so normal. Maybe I missed the latest update from Miss Manners or something. Is normal the new beautiful? If so, I hope you and your husband have a completely normal anniversary celebration.”

“If you’re trying to compliment my baby, you could just say he’s cute instead of offering a comparison to so-called “normal” babies.”

“Too bad, we were hoping for a real freak.”

“What, exactly, are you implying?”

“Um, thanks?”

“My baby looks so normal? Because looks are everything, right?”

ABLE Act – Activism

In CategoryDown syndrome
ByLisa

When we received the prenatal diagnosis of Froggie having Down syndrome many things went through my mind.  One thought that kept coming back, over and over, was about what his future would look like.  Will he be ok when he is an adult?  Will he be able to support himself?  Who will look after him?

There is no way to answer these questions now but I can do everything I can to prepare him to grow up to be an independent, productive member of society.  That is the best I can do, right? Wrong.  I can make sure that the laws support us in this!

What happens to people with disabilities when they grow up? The system is stacked against them.  Many people with disabilities really depend on Medicare.  Health insurance is so necessary, especially for people who have more health problems than typical.  The way the system is now a person can not earn more than $674 a month or have more than $2000 in assets or they loose their benefits.  This may include SSI, food stamps, Medicare and other programs.

The ABLE act is a change to the tax code that allows parents of disabled children to save for their future the same way we can save for college for other children in 529 accounts.  It allows the disabled person the ability to save some money to live on and use to clean their teeth or buy clothes or even go to the movies with friends.

When Froggie grows up will he be force into poverty and inactivity? Will he sit home and feel useless even though he will have the skills to be a productive, tax paying member of society? How will he feel about himself if he is told he can not work and contribute like everyone else?

On August 15th I had the great pleasure of going to Senator Dianne Feinstein’s office with members from the Down syndrome community.  We met with her State Director, Trevor Daley, and told him our stories and why this bill is so important to us.  We are asking Senator Feinstein to co-sponsor the bill.

wTrevorDaleyFeinstein'sOffice

I took both Froggie and Peanut with me.  I think Froggie did an amazing job looking cute and Peanut was polite and quiet.  Hopefully he will remember doing this when he is older.  I had an opportunity to share my family’s personal story with Mr. Daley and it felt amazing to actually be doing something about this very important act.  We should hear back in a few weeks if Senator Feinstein will add her name to the growing list of sponsors.

For more information about the ABLE Act you can go HERE. Please contact your Senate and House representative and ask them to sponsor this very important, life changing bill!  Froggie is depending on you!