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....

WEIGHT!!!!

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 naturally...my 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.

Happiness!

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.

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...

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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!

Crafty?

I created a hairbow board for Kalista and then just finished one up for Ada too! I am actually kind of proud of myself.  Of course, neither has been put into use yet, so I am crossing my fingers that nothing falls off.

Hug your babies (young and old) close today!

It's been a sad weekend.  My cousin lost her baby last night.  This cousin and I hardly ever saw each other (I think I can count the times on one hand), but we used to be pen pals when we were young and we loved sending each other letters.  I actually didn't even know she had a baby.  Her daughter was almost 4 months old when she stopped breathing at the babysitter's house a couple of days ago.  The babysitter administered CPR and the baby was careflighted to a hospital, but has been on oxygen since.  They ran tests and determined that she had a blood sugar level over 400 and her MRI did not look good either.  I guess they think she went into diabetic shock, but the doctors couldn't do anything more for her.  My cousin and her husband had to make the decision to pull her off of life support.  I can't imagine the heart break and grief they must be going through.  I can't imagine having to make that decision.  It's scary to think that such a young life can be taken away so soon and it makes me feel so lucky that my babies are healthy!  I checked on Brady twice last night because it really is just so scary.  I had a hard time sleeping, but I guess that's usual this late in a pregnancy. I should say I had an even harder time sleeping.  Please keep my family in your thoughts.