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.

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.

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.

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.

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)

cardio update.

hi friends.
we are doing pretty well. after getting home from the hospital Little miss's oxygen saturation actually went up. GO HER! we had a cardiology appointment last friday. the dr told us, "she looks as good as can be give her condition" . I guess I'll take that as a compliment. We were told that because her oxygen levels were so good we could work on weening her off the oxygen. well, since we've been home, we've tried. and to this point, little darla jane doesn't want to ditch it just yet. She'll be doing great, we turn down the oxygen and then she'll drop again. So, for now, we're still rocking the tube!
We also added a new, permanent, med to the list. Enalapril. This will help keep her blood pressure low, and help with her heart function. So that her right ventricle will work as well as it can, for as long as it can. We'll take that! We started on the very lowest dose and will work up as her body can handle it.

but at this thanksgiving time we truly have SO much to be thankful for.

We're home!

Finally we came home, yesterday, after 5 days in the hospital. Isn't it nice that a cold kept her in the hospital just as long as recovering from open heart surgery.
No pictures, seems like life has been crazy since we've gotten home. You would think life wouldn't be so crazy when you aren't able to get out of the house... Bring on the winter!