Pediatric Visit

We just got back from seeing the pediatrician, I was so worried that I couldn't wait until tomorrow to see him. He is referring her to a cardiologist ASAP.... She now weighs 4lbs 15oz and is 18 inches long! I'm happy about how well she is doing but I'm  tired of everything being an unknown.  Nobody knows anything.  I don't know what can happen or what to expect....it's exhausting really.  I can't wait to see the cardiologist... I will keep everyone posted. Good night..

Good things, not so good things, and other things

The nurse came today and Rosalie's oxygen was the lowest it has ever been, a 75. Usually it is in the 90s or high 80s, so I don't know why it would be so low today?!  She said not to worry.... but I'm worried...  She said she looked a little pale.  I can't wait to see the doctor on Wednesday. It's the pediatrician on base but he can refer us to a specialist who can tell us what we can do for her.

Otherwise she is doing pretty good, she almost rolled over on her own today!  We put her down on her back and she rolled onto her side!  And today she hasn't been fussy like she usually is  We took a little morning snooze together, it was nice...

Nap time...

From gaining weight to lifting weights...kind of

Rosalie is getting stronger everyday day... She had physical therapy yesterday and we have been doing some exercises the PT taught us.  She is able to pick up her head on her own a little bit, it is so exciting to see.  In fact, here she is flexing her muscles lol. It just makes my heart melt, ahhhh, I just love her...

"Grrrrr"

I'm trying to get stronger too, I recently started to run and do some exercises every other day for 30 to 45 minutes.  I jog/walk about 2 miles and do some exercises along the route.  Here are some pics I took while I worked out today:

I'm excited because I went from not being able to run at all to running half a mile without stopping. I'm amazed how quickly my body improved, it motivates me to see improvements so fast.  I hope I keep at it, my biggest enemy when working out is consistency. Hope everyone has a nice weekend...

Weightingggg

Rosalie gained a pound!!!! (I, on the other hand, have not lost a single pound yet.... ) The good news is that Rosalie has gained weight!  We are planning on seeing a specialist now, I need answers and I need to find out what options we have...  She is thriving and doing so well I feel hospice might not be what she needs!  I will keep you posted on what we find out and how it goes.  She also lost the fuzzy hair she was born with.  Here is what she looks like now.

Look at that smile!!!  I love her so much. 

Rosalie's progression since she came home

When we first brought Rosalie home, no one slept for the first couple of days, we were so scared something would happen.  After a couple days we started taking turns at night... Rosalie peacefully sleeping in our arms, all nice and comfortable, while the person holding her wouldn't dare blink.
Fast forward to a month later and she is, of course, still calling the shots but, man oh man, she is not this delicate little baby we thought we brought home, she is a feisty little thing.
Here she is when she first wakes up and "squeaks" for food. Of course I gently pick her up and just want to snuggle and kiss her...

Well that's not what she wants, so she "squeaks" a little louder in order to make herself a bit clearer...

Since the person getting the bottle ready is not fast enough (not even a minute has gone by since she first opened her little eyes mind you) she goes ahead and grabs a good hold of my face as if to say listen mommy....I'm very serious about this food thing.

She has learned how to cry now, so no more squeaks, which I miss so much.  Thank you again Laura for capturing these moments!!

Our little miracle

A picture is worth a thousand words they say.... The following pictures (taken by my wonderful friend and photographer Laura Luongo) show Rosalie's first minutes, hours and days.  It's hard to believe that days have turned into weeks and weeks into a month.... She was diagnosed with Trisomy 18 and wasn't supposed to survive birth, but so far she has proved everyone wrong!

Laura Luongo Photography

Change of Plans again...

It's been a little over a month, I gave birth on November 28th and contrary to everything I prepared for, Rosalie Anne was born alive and is doing well as we start the year 2012. She was 3 lbs 5 oz and 16 inches long. She is still the same size... She is very little but oh so very strong. I'm grateful that I get to spend time with her, to get to know her and be a mom. I remember when I got the news all I asked for was a minute so I could meet her, I just wanted enough time to say hello and good-bye... BUT she had different plans and was released with hospice care the day after she was born.

A nurse comes every other day to our house to check her heart, oxygen level and lungs but so far she is doing well with no interference. Julie is our hospice nurse and she is just amazing, I wasn't sure how I would feel about a nurse coming over to check on the baby... but she is so caring, answers all our questions and makes us feel at ease, I actually look forward to her coming. She comes with a social worker Kenny, who is so sweet and compassionate. It's an awesome team and we are grateful to have them in our lives. It's overwhelming at times and it is nice to have that help and support.

For now I'm busy being a new mom, she is just like any other baby... wakes up every few hours to eat, get changed and back to sleep. So far she is doing well, that is the most important thing. She is comfortable and she is not suffering.