Saturday, January 28, 2012

cute baby girl at 10 months.



I am IN LOVE with these pictures my talented friend Natalie took of Darla Jane. I am going to use them in some of my congenital heart defect awareness efforts. If this face doesn't convince you to spread awareness of the #1 cause of birth defect related deaths in babies, I don't know what will.

Tuesday, January 10, 2012

9 months old

On Monday we had a 9 month check up for our little miss. Here are her stats...
Height - 26.5 inches 19%tile
Weight - 19 lbs 53%tile
Head circumference - 17.5 inches 78%tile
She is still on the short side but growing. Last time we checked she was in the 11%tile for her height. And she actually went down a little in her weight "ranking" but as you can see...still not a problem. I really can't get over how amazing she does at gaining weight (she gets that from her mother).
She also got 5 pokes, between her 9 mo immunizations and her synigis shot. But so far...no throwing up so maybe the synigis isn't my enemy after all. She was a little cranky yesterday but today she's been great!
We are on 1/4-1/2 liter of oxygen at nights and during the day we are off the oxygen about half the time! Working slowing but getting there. I had a heart mama say that the day they were done with the oxygen she just wanted to take her baby and run around the block, just because she could. Well, I know that feeling. And although I won't be running Darla Jane around the block in the middle of winter I do take her to the farthest corners of the house that her hose would never reach on the days she's tube-less.

we sure are loving this girl!

and she is 9 months old!

Thursday, December 29, 2011

merry christmas

despite all the ups and downs this little miss had a pretty happy Christmas. And is even learning to sit up without support. She can do it for about 30 seconds now! We are also able to have her without the oxygen hose a good part of the days (she is tube free about 50% of the time during the day). She still needs it all night...but we are headed in the right direction.
I can't believe that she is just about 9 months old. These have been the LONGEST, and quickest 9 months of our lives. But we have been amazed at the blessing that have come. At this time, as we focus on the birth of our Savior, Jesus Christ, let's always remember that we can turn to Him for comfort and direction as we go through what ever trials will face us in this life and that He will never leave us alone as we go through them. We have felt the loving arm of our Savior support our little family as we have journeyed through this year and it is our faith in him that helps us know we will be able to get through the continuing journey that we face before us.

It is our prayer that you will also take the time to be aware of His hand in your life and turn towardsHim to receive the blessing that He is waiting to bestow upon you.

Sunday, December 18, 2011

incase she hasn't been through enough...

notice the lovely above her right eye. just give her mom the mother of the year award. luckily it was fixed with dura-bond and didn't require stitches.

Friday, December 16, 2011

Synigis shot...and the never ending throwing up.

on Friday, December 9th little miss got her first of 5 monthly Synagis shots. A shot that is used to reduce the severity of RSV if Darla Jane were to get it. In hopes of preventing hospital stays and even life a threatening illness. She was brave and strong for the two injections it required. Then the next day the throwing up started. From Saturday to Monday she couldn't keep anything down. Luckily as the week progressed she got better...But up to today, she is still throwing up at least once a day. She never did that before. I'm not sure if it's from the shot...but if it is...it's going to be a very messy winter.

Tuesday, December 6, 2011

the curse of posting.

SO the night that I posted, we were back on the oxygen.
until today when little miss could get by without it again. maybe I shouldn't post about it because tonight she'll probably be back on again.
BUT...this is the first time in over 6 months that Darla Jane has been able to go without, so we are heading in the right direction. I shouldn't think that it would be as easy as that.
We continue on the roller coaster.


Thank you for riding it with us.

Sunday, December 4, 2011

Read all about it!

We had a cardiology appointment this last week. And...little miss is still doing great!. So great in fact that we don't have our next schedule appointment until February! 3 months from now! What?!
The Dr. came in talking to me about a study they are doing. They will do that every so often and then ask if you want to be a part of it. He was telling me they were studying the use of steroids to help with weight gain. After he told me all about the study he said, "but there is no way we need to enroll Darla Jane in that", with a smile on his face.
We increased Darla Jane to her full dosage of Enalapril. She was still on her oxygen when we had the appointment on Thursday.

....did you catch that?
"was still on her oxygen"
keep the prayers that she stays this way, but all day today, she was hitting in the low to upper 80s on her oxygen saturation...ON ROOM AIR!
I'm knocking on wood, but she has never hit that high, consistently, for such a long period of time.



Go Darla Jane! Go!


ps. she also LOVES to eat Cheerios.

(and she got a hair cut)