Today was an awesome day.  Ollie is 4 months old today & I turned 29.  Time flies when you are having fun.

I can't give you all the details of the night and early morning because honestly I was exhausted.  Thank the lord for my wonderful husband.  He let me sleep off and on while he stood by Ollie's side.  I remember all her doctors coming in and out and various things of the night, but I slept a lot too.  It was like having a newborn again - I would be up for thirty minutes and asleep for thirty minutes.  Jade pulled an all nighter - I recall him watching The Voice & So You Think You Can Dance as well as googling a number of random things like her medications and heart defect in detail.  Goodness I love that man!  Today I have been with her & I sent him to the hotel to nap away.  Grandma Janie & Grandma Ruby have helped us so much today.

So here is the recap...


She got a new dressing & a bath AKA wipe down.  We saw her incision - it's large and red, but really clean looking.  I honestly think in a few weeks it'll be really looking good.  I am still nervous today to move her around because it causes pain, I believe tomorrow will be better as far as that goes!


I woke up to a sweet surprise this morning, the nurse put her in cute socks & a hair bow.  The nurses here are fantastic!  She has one nurse on her all day & so far all 3 shifts have been wonderful!  Her doctors on the cardiac ICU floor are great too!

Catheter is out!


She is completely off the sedation medicine!  This is exciting because it made her feel uncomfortable like she was possibly falling.  She moaned a lot because of it and I hated it.  It is also exciting because she is awake and alert.  She recognizes us!  She isn't smiling or talking, but she feels comfortable.


She is on morphine & Tylenol for her pain.


She is on Lasix  for fluid, and one other heart medication to make her heart squeeze more effectively.


She still has an IV drip as well.


She is also taking thyroid meds.  She had low thyroid levels before she went into surgery so she's on the meds & we just found out she will continue the meds at home.  It is common for children with DS to have hypo-thyroidism so we had expected this at some point in time.  She will have blood tests regularly to check her levels.


Her clotting is looking a lot better!  Her chest tube drainage is more yellowish/clear than red or pink which is exactly what we prayed hard for yesterday!


She has eaten a bit of what I have pumped.  This morning she chugged, literally chugged Pedialyte.  Today she's taking a bottle a bit, but you can tell she would prefer not to deal with it so she's not taking much - hopefully I will get to nurse her soon because I know she wants that because she'd eat and the comfort factor.  I'm still in shock that she's used a bottle or a pacifier at all considering she has straight up refused them at home for some time!


Her oxygen levels were dipping a bit this afternoon so she's on a tiny amount of oxygen, but nothing to be concerned about at all.  They gave her extra Lasix because she may have a bit more fluid on her and that would explain the oxygen dip.


Overall, she's doing awesome.  I can tell she feels better.  I can tell she is pink!  The tips of her toes are pink & for those who haven't done this - it's exciting!  She looked sometimes grayish in her pictures and that's no longer an issue.  Her pulse/oxygen levels used to sit in the low 90s to low 80s when she nursed &  now she's in the mid to high 90s - with oxygen she's at 100% which is great.


Overall - awesome day - best birthday ever!  I'm really looking forward to tomorrow.  I thought she was doing so well yesterday, and today has just blown my mind - she is so tough!  Tomorrow I'm hoping we get to hold her & if she does well we may move from cardiac ICU to a regular pediatric floor - it is good, but I'm nervous about that a bit.

So pray for another good night and an even better tomorrow.

Also, say some prayers for a friend of mine.  Her husband had major surgery yesterday just after Ollie got out of the OR and I know she needs the strength right now that Jade & I have had.  Nothing is like the calmness that only God can provide, I don't know how people do it without HIM.  She is doing well, but needs the prayers for her family & for his recovery.  Thanks prayer warriors!



So Jade & I don't forget the bigs right now here is what they are up to...

Aubrie insists on calling Maggie & Kylie, Mommy & Daddy because they are their Mom & Dad for now.  She was not liking their suggestion of perhaps Mommy Maggie & Daddy Kylie instead...

Everett sang me Happy Birthday - but really sang it to Aubrie & threw Mommy in when my cousin corrected him.

I told Everett I loved him & he said - I love you three.

Aubrie is also insisting that Maggie & Kylie take her to dinner, then Walmart, then to the Children's Museum - all before her 7PM tball game.

They both got in trouble for standing on the slide of their kiddie pool & were shocked that it's not a good behavior.

So Maggie & Kylie have their hands full & we miss our bigs, but they are having the best time ever.  My cousin Ellen kept them loved, fed, and entertained - they are ready to go back anytime!  Thank you Ellen we love you too!  or three!

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