Time to meet the pack!

Guess what!? We are going home today!!! 

Yesterday she passed her 'car seat challenge' with room to spare-   Her oxygen saturation never went below 88% and that was only when she was kinda holding her breath working something through her tummy. Most of the hour and a half she had to be strapped in she was in the low to mid 90s. She's been eating like a champ- she's still just above her minimum but it's obvious how far she's come. She has been waking up hungry and ready to go which is so awesome! We are ready to go too! Imagine that :) Her neonatologist checked her out and was happy to say she looks good- just keep up the work and make sure she's eating eating eating! He also said she has narrow ear canals but that's totally normal for ds babies and we just need to watch out for ear infections. 

Granny arrived yesterday- she couldn't help but cry when she saw her and it was adorable! Cecilia thinks she's pretty awesome and I'm sure is already plotting how to get her more wrapped around her tiny baby finger. Our challenge today is to just get all this stuff packed up and out of here! We really nested... but it will be oh so nice to nest back at home!

Cecilia's case worker, Cheryl, has her all set up for lots of follow up appointments so the fun is never ending. It feels good having all of that set in place so we can just take our little baby home and get back to life! Well, I'm gonna go so we can get our discharge education going and I'll update y'all later!

noms

with her nurse cathy

getting a final physical from one of her neonatologists- Dr. Lewallen

She's ready to go nap at home! Bye Bye Doc!

Lovely visitor Tara/doula/buddy

baby kisses

Mark trying to nurse her with his nose... not gonna work...

wildcats!

baby sara baby cecilia- i totally see it :)

Her last board day

i heart cecilia days

my sunshine

It's sunny and beautiful outside but I have a hard time pulling myself away to see it because my sun is inside this hospital room- looking forward to taking her for her first breath of fresh air!

Well well- Cecilia is doing really well today- just like every other day :) She's been sleeping and eating and going to the bathroom! Amazing right?! Oh AND she spit up today! I handled it much better this time than the first time she spit up... Okay okay I'll tell the story: The first time Cecilia Mae spit up she had just eaten a full bottle of my homemade milk and I was sooo satisfied with her consumption--- aaand then she shot milk out of her nose and mouth in such a volume that I was like- whoa. Needless to say, she recovered much faster than we did. At first I just told myself- babies spit up- she's fine. And then I told Mark to press the nurse button! A nurse came in and we told her what happened and she looked at Cecilia, then she looked at me, smiled and said- she'll be okay- babies spit up. And I felt a little silly but hey- we aren't going to have a button at home so I'm gonna take advantage while I can!

I wish I could say that was the only time we pushed the button but it's not. The other evening we were standing over her crib and she was all awake and fidgety and her ekg looked crazy! Her heart rate was elevated and things just seemed off. So, we watched her for a bit and I listened to her heart with the stethoscope (she sounded fine to me) and then we talked about it for a second then we were like 'let's just make sure'... aaand we pushed the button. A nurse came in and we explained our concerns. She looked at her- then the ekg- then listened to her and reported that the craziness with the ekg was artifact from her squirminess and she might just be bored. She asked us if we had any toys she could look at- and for a moment I felt a slight panic- do we have toys? Crap- do we not have toys for our baby?? What terrible parents! But luckily our friend Katy had brought her a black and white bunny that we sat in front of her- and she immediately just calmed down and stared at it. So we stared at her staring at this bunny for like- 20 minutes. Oh the button...

  Cecilia with her bunny

So, as for her patient update- she's eating much better today than she has this week. Mark is getting ready to feed her again right now. Her cardiologist came in today to check on her and he held her for a little bit- she had spit up on her shirt but he didn't mind :) Some days she gains weight and some days she loses but overall she has gained- she's 8lb 4oz and last time they measured her length it was 20 inches. Her neonatologist said today we may be heading for fresh air soon but we are still taking it day by day. Tomorrow she has to pass her 'car seat challenge' but I'm feeling pretty confident about that. She failed her first one but it may have been because her little straps weren't the right fit. Tammy the 'car seat lady' came in today and adjusted it. We tried her in it for about 10 minutes and she rocked it- no falling oxygen saturation levels and she seemed pretty chill... until she spit up in it but I think that was just her way of marking it. So this car seat better work because it's got Cecilia barf on it. :) That's what we get for messing with her mid-feed. Oh babies! That's about all I've got for a patient update- she's a boring patient but a really cute baby. She doesn't really cry but when she wants attention or we wait too long to get her food ready she lets out this bird like scream cry- very short and to the point. Usually it can be ameliorated with kisses, bottle or snuggles. I appreciate how rad and chill she is! 

Mark working on physical therapy to Cecilia's dismay :)

Commence HOLD OUR BABY! Pictures:

doctor cecilia

Hey Hey!

Cecilia is 10 days old! What?! They grow up so fast :). We've really become parents- We get up in the middle of the night to feed her- our backs are aching- we are tired- we are in love- we stare at her and when we aren't staring at her we are looking at pictures and videos of her- totally lost in the bubble of adorable Cecilia. We are just now (11pm) eating the dinner our rad friend Martina dropped off for us today! We kept trying to leave the room but then she woke up and we had to stare at her staring at the black and white bunny Katy brought her the other day. We finally peeled ourselves away! It's pretty nice being able to take breaks whenever we want to because we know she's being watched by her loving nurses and if something wonky happens her little ekg/pulse ox alarms go off- which they rarely do and when they do it's practically always just a sensor error. Today we gave her her third bath- pretty adorable- here is the video of Mark and me getting schooled by nurse Halle:

My apologies for the lull in information- we've been waiting for little Cecilia to tell us what she is planning... One of the neonatologists looking after her has only wonderful things to say  and she came and held her for a spell since today was her last day on- tomorrow/today she will get a new doctor. 

So! The little lady pulled out her ng-tube on Friday night between her 3 and 6am  feedings- I had just put her back in her crib, swaddled her and then I turned my back for a moment and there she goes- planning her own treatments! In the morning we (we=her nurses and doctor and ourselves) decided that we'd try her on ad lib feedings since she had been eating so well. Well, she did fantastic for a spell and since has become a little under-motivated to eat her full feedings. We are just taking it one feeding at a time though and letting her go at her own pace. One feeding she will eat 30mL and another she'll eat 70mL. The goal is for her to eat between about 50 and 70mL at each 3 hour feeding with a total daily intake at 380-570mL. It's 1am now and she just finished 65mL so not too shabby- I'm starting to think she's a night owl. Cute little baby night owl :) 

We had another session with the occupational therapist, Lisa, and we have one tomorrow as well. We also met with the geneticist who ran through what to expect possibly in the next 6-12 months developmentally. In addition to that, I am meeting with a lactation specialist about every 3 days to work on breastfeeding, which can be super difficult for Down babies. In the mean time we are doing little things to kind of prepare ourselves for going home like taking an infant CPR class and a car seat safety session. We don't know when we are going to go home yet because it's all based on how well she eats- so we are just taking it one day at a time- Cecilia days. :)

xo
sara

pictures to enjoy

lovely visitors

nurse katie!

nurse karena!

lisa the OT

our midwife Chris!

our delivery nurse Kayla- she put up with me :)

good hair day

for momma- fat baby cheeks and baby lips

nurse halle :)

dr. larrabee

auntie and uncle

i made her a hat! fancy soft baby alpaca- she keeps grabbing it and pulling it over her eyes- literally pulling the wool over her eyes... not sure what it all means...

The words go la la la la la

Yesterday was Cecilia’s one week birthday! Pretty exciting stuff and everything has been so different from what I imagined it would be. I had visions of taking her home from the hospital straight away and just lying on the couch staring at her, carrying her around everywhere, picking out music to play her during naps, and putting her to bed- not to mention dirty diaper party time! 

That all changed when we learned she would be staying in the nicu. At first she just slept a lot in her
clear plastic hospital bed and seemed very very fragile- someone we could hold, but not very well. She has been hooked up to monitors and under the watchful eyes of the amazing nicu nurses 24 hours a day. It made her condition seem like it was her defining feature, but slowly it has moved into the background. When she starts crying, it’s not something to worry about and call the nurse (not that we haven't) because sometimes she is just hungry or wants to be held, just like any baby. It's made it so much easier to work through what she has going on when we are constantly reminded that first and foremost she is our newborn daughter. 

I've been able to do the stuff I wanted to do anyway, we got some extenders so we can take Cecilia over to the couch and I can still play music for our dirty diaper party time. All of our friends have been so supportive and like I said, the staff here has been amazing!

mark

Song of the day