Friday, May 24, 2013

The Judged

Sorry it's been so long again, but I can never seem to find time to sit down at a computer. I'm only able to right now because Ada is asleep and I have Brady in my lap watching yo gabba gabba on you tube.  I'm sure a lot of parents are shaking their heads at me right now, but that's exactly what I want to talk about...

When you become an adult, you get to make your own decisions without too much criticism. Then, you become a parent and somehow that opens you up to all sorts of criticism again.  You let your kid have junk and McDonald's occasionally and someone is going to bad mouth you.  You teach your kids to eat healthy and never let them eat junk and someone is going to bad mouth you for that too.  You babywear and people criticize that you're spoiling your baby and they will get too used to it.  You don't babywear and a whole different group is going to criticize you for not holding your baby enough.  Why can't we just acknowledge that there are many different ways to parent?

I have seen many complaints on Facebook about parents being on their phones and on Facebook too much, which is kind of ironic to me.  Last week, I took the kids to storytime and a mother came in with her 3 year old, sat her 3 year old down on the ground, grabbed herself a chair and whipped her iphone out.  Every other parent is sitting on the floor with their child(ren).  My first instinct was to be appalled, but it's not like her daughter was running around crazy (like my toddler).  She was sitting quietly.  Maybe this was the only moment that this mom had to sit down and relax for a second. I agree that it's not good to be on your phone all the time.  Unless you are with the person all the time, how do you know how often they are really on the phone?  How do I know what she was doing is any different than when I go and park the car for a second when both kids are contently strapped into their carseats?  Yes, I do that every so often.  Keep in mind, we don't leave the house during the week much anyway, so it's not every day. Unless I am physically putting my children in danger, then I really don't want to hear your opinion on my parenting.  This would be less of a big deal if someone actually nicely approached the "offending parent" and brought it up, but I only every see snide remarks behind someone's back or on Facebook. Ugh!  Vent over.

Thursday, March 21, 2013

Happy WDSD!

A quick post before the feeding specialist shows up!

This is from my facebook, plus a bit extra because we always deserve a little extra.

Today is World Down Syndrome Day! Many people are doing "Who I Am" posts, but Ada isn't even 11 weeks yet. I'm still learning who she is, like any parent of any newborn. That's who she is right now. She is a baby, like any other baby. She is loved by many, many people! People with Down Syndrome are people that deserve as much respect as any other person. That's what today is about, but it doesn't stop at today and it doesn't stop at people with Down Syndrome.  Everyone deserves to be accepted!

I should include a little bit about Ada though.  Ada touched my heart before she was even born.  She has taught me so much about life and about myself.  She is my little girl that loves to stare and smile at me rather than eat sometimes.  I sometimes get frustrated when she won't eat as much of her bottle as I think she should, but when she just smiles at me, I forget all about that frustration.

Ada's bow says Peace, Love, Awareness!  I think that's a good tagline for today!

Friday, March 15, 2013

Secret Tips for a Moms with "2 under 2"

I decided I should start recording any secret tips I learn.  I learned one today, so here's tip #1.

Bath Time (for me)

Getting a bath/shower when you have two little ones is hard, especially when I have to give Ada a bottle and pump during Brady's naptime.  Today I learned something that I hope will continue to help me get clean if I need to.  The best option is to take a bath with your toddler, but I've tried that with Brady and he has not been happy about it.

Today, I got Ada to sleep and took Brady into the bathroom with me.  I made myself a bubble bath and blew the bubbles at him and after that the bubbles amused him for the rest of my bath.  It did get messy though, so in the future I will make sure he isn't wearing anything but a diaper.  He has been so happy ever since getting a bit of bubble and water time. Yay!

Thursday, March 14, 2013

Therapy and other concerns...

I see so much talk about therapy lately that I can't help get worried sometimes.  I'm a natural worrier.

Ada had her evaluation a few weeks ago and the EI program here said that she did not need therapy yet.  They will re-evaluate her in 90 days.  She will be almost 5 months old at that point.  At first, I thought this was for the best.  Right now, Ada sleeps almost all the time.  She has no real routine and so I find the best moments to work on tummy time and other things with her.  It requires some skill to find a time when she is awake, not too hungry, and not right after a bottle.  I admit that I don't even do tummy time every day.  Some days it is just enjoying that period where she is awake and happy.  She's really good at staring contests.

Then... I see everyone else talking about therapy for their newborns that have Down syndrome and I start to feel like I'm doing the wrong thing.  Maybe I should be pushing for more therapy?  I'm not sure because she can hold her head up for several seconds at a time now.  She can roll over from belly to back to get out of tummy time (as long as she has her arms under her).  She pushes against my hands with her feet.  She will make great eye contact and give us an occasional smile even.  She has even laughed a bit in her sleep.  Honestly, I don't remember when my son did these things because I never really took note.  I only feel like I'm supposed to note these things with Ada because there is this extra stress of THERAPY!  I think I will bring it up at her next appointment with the feeding therapist and her next weight check with the pediatrician.  Maybe they will set my mind at ease or tell me that I should be pushing for therapy.

In other worries, here is a big one....


Not just for Ada, but for Brady too.  I try so much not to worry about it because the pediatrician isn't too worried about either of them yet.  A little background here is that I am small (5'0" and under 100 lbs), my husband is small (5'4" on a good day), so babies are small.  Brady is 22 months.  I believe he weighs around 20-21 lbs and he is 32.5"-33" tall.  Since he was 4 months old, he has been barely on the growth chart, but he is growing.  He is in the 1%.  The doctor says he will just be small.  I only hope that the trend of growing continues.  Growth hormone deficiency is a concern of mine because I had it and so did my husband's brother.  I'm not sure if it's genetic or not (not enough research because it's rare).  Ada was born at 5lbs and 17", so another tiny one.  She is growing, but with her cleft palate concerns, we will have to keep watching it.  I find myself constantly worrying about how much my kids eat.  I don't realize how small Brady is until I see him around kids near his age.  Today, we met up with a friend who has a daughter that is about 16 months old.  She was right about the same height as Brady.  Hopefully, his doctor will put my mind at ease at his 2 year appointment. Until then...I worry.

Wednesday, March 6, 2013


Every so often, I start thinking about Ada's life and her future.  There was a time when I would get sad thinking about this, but now I don't.  Really, it comes down to how I never really thought much about "the meaning of life" before I found out I was pregnant with a daughter with Down syndrome.  After that, I thought a lot about it.

Mostly I think there isn't one meaning of life.  Everyone's life means something different, but... I think the most important thing is happiness.  I know that Ada can have that.  Happiness is possible whether or not someone has an intellectual disability or physical disability.  I don't think this is coming off sounding as enlightening as I had hoped, but that about sums it all up.

You can't put value on a person's life.  You can't say one person is more important than the next because, in reality, we are all pretty insignificant in the grand scheme of things.  My life isn't going to change the life of the entire universe.  I will touch as many people as I can and I plan to teach both of my children to do the same and not to worry too much about the rest.  Just do whatever it is that makes you happy and your life will have meaning.  I will do my best to make my children happy and to teach them to always be respectful of others.

Speaking of children, Brady just woke up!  Time to continue the day.

Saturday, March 2, 2013

Long Time, No Post!

Things have been so hectic and I haven't had much time to sit down and post.

Ada was in the NICU for 2 weeks and then home for 11 days before we went to the ER worried about her breathing.  Turns out she had RSV.  That was a rough 8 days in the hospital, on oxygen, not eating well, so they stuck her many, many times trying to get an IV.  Then after a few days with the IV in, she got a red spot at the site, so out it came.  At least she was eating well by then.

She's been home for a few weeks now, but we have had family visiting, which is why I haven't been great about updating.  I promise to try and update more often now that she's here and things are (hopefully) calming down.

Until then...

Friday, January 25, 2013

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Saturday, January 12, 2013

A Birth Story

On Jan 2, at 2am (same time as with my first), I started feeling contractions.  They were about 10-15 min apart.  I timed them for 2 hours, panicking because she was not full term just yet.  I thought I would make it at least to 38 weeks.  After 2 hours, they started getting further apart.  I would have them randomly throughout the rest of the day.  Next night, same thing, except they lasted 5 hours before getting further apart and I had them ever 30-45 minutes throughout the day.  That evening, January 3rd, they started getting closer together again (probably  around 4 or 5pm), but they were very random.  I tried laying down and guzzling water and they seemed to get further apart (about 10-15 min), but as soon as I stood up to do anything, they would be 5 min or even closer.  I finally decided around 8pm, after we put Brady down for bed, to call someone to watch him and go to the hospital.

I was expecting to be sent home, but I was already dilated to 5cm!  I wasn't really getting frequent contractions at this point.  I was at 6cm by the time they admitted me.  The contractions were very painful (like last time), but not close together at all (unlike last time).  I wanted my second natural childbirth, but I just couldn't let me body go.  I labored for a few hours stuck at 6cm.  I finally said I wanted an epidural.  The first epidural didn't work, so they had to stick it in me again.  Yuck!  Once it started working, the contractions got very close and I didn't time it, but I think I went from 6 or 7cm to fully dilated in about 2-3 hours.  After only a few short pushes, Ada Josette was born on January 4th, 2013 at 4:44am.  She was only 5lbs and 17" long.  Her gestational age was 37 weeks, 1 day.

She hadn't been nursing very well, but I figured it was just the learning curve and the fact that they took her to the nursery to be in a warmer for a few hours because she was having issues regulating her temp.  Our pediatrician came in to check her out that afternoon.  We already knew she had Down Syndrome, but he said she also a cleft palate.  He asked if it would be ok to feed her some formula in a special bottle.  Daddy got to feed her and she ate about 10mL of formula.  The pediatrician decided that she couldn't afford to lose weight so he had her admitted to the NICU, saying it would probably only be for an IV and observation over 24 hours.

She's now 8 days old, but still in the NICU.  We continued to try breastfeeding for a few days, but it really wasn't working out between her being tired, slight tongue thrust, and her cleft palate.  They did her echocardiogram and that all looked great.  They did an ultrasound of her brain (to check for a midline defect) and that also looked good.  An occupational therapist worked with her on the bottle one feeding a day and she did really well.  After a few days, I decided breastfeeding would have to take a backseat to bottle feeding if I wanted to get her home soon.  At this point, she was only getting pumped breastmilk.

She has now been exclusively bottlefed for 4 days and does a little better each day.  She gets almost all of her bottle and only gets about 8-16 mL pumped into her feeding tube at each feeding session.  Once she can consistently take all of her bottle, then they will remove her feeding tube.  Then they will watch her to make sure she is still gaining weight for 48 hours.  This has been so hard and exhausting, especially with Brady being sick at home now.  I'm really hoping to take her home by next Wednesday though.  I know it's not in my control, but she hasn't taken any backwards steps yet.  She just takes baby steps forward.  She is so determined and absolutely adorable!

I am absolutely in love with this little girl!