Brenya is a gamer!

WE ARE HOME!!!!

That is right people...sorry for such a late post, we wanted to surprise all the people back home we could. We left the hospital on Wednesday, July 13th. It is kinda funny because we were at bed 13 too. I guess she is already working on her lucky number at only 8 weeks old! She had to go home on a little oxygen but we should get off of that in no time at all. Sorry we don't have any pictures yet (I can't find the cord to upload the pictures) but I promise I will get some for you guys soon!

 I would like to thank everyone for all the support throughout this difficult patch in our lives it really made a world of difference. It really surprised Sonya and I to see all sorts of people calling and asking what they can do. It is nice to know that when the baby poop really hits the fan that you have good family and friends to help you through it.

We will keep the blog updated with her developments and such. I enabled comments so feel free to make any if you want!

Getting closer!

Brenya has been doing very very well.  She has only been bottle feeding and nursing for a week now, but she is already eating the full amount she is supposed to eat plus some.  She really loves her food.  It has surprised everyone how quickly she was able to eat from a bottle.  They took out her feeding tube yesterday because she doesn't need it anymore.  They are now giving her both the Adavan and Morphine on an as need basis.  So far she has only need one dose of Adavan.  She was also able to come off the high flow yesterday.  She has the regular nasal canula and is on one liter of air.  They want to get her to 1/4 of a liter before she comes home but there is still the possibility that she won't need to come home on oxygen at all.  We are very happy with all of her improvement.   She is starting to be a very healthy baby.

This is the bandage where her central line used to be.  No more IVs!

You can almost see all of her face!

 

 

 

 

This was a couple of days ago.  Dad does such a good job feeding her.

One step closer to being wireless!

Since today was day 28 of 28 of her antibiotics, Brenya had a CT scan to check on the possible infected pockets of fluid in her abdomen.  The findings were that the pockets of fluid were gone.  These results made the doctors confident her infection is cleared and the antibiotics could be stopped.  Since she is no longer on antibiotics, she did not need her central line (that big white one that was in her chest) anymore and they were able to pull it today.  She now has no IV fluids at all!  She is still getting Adavan and Morphine but now she gets them orally.  They also decided yesterday that she could she could bottle feed whenever she is awake and wanting to and they gave her the go ahead to try nursing once a day.  Yesterday she was able to eat 52% of her total milk intake for the day.  Pretty soon she won't even need her feeding tube anymore.  As for her oxygen flow, she is down to 2.5 liters so making good progress there.  Hopefully, she can be weaned again tomorrow.  Brenya is really do well and her progress has even surprised the doctors.  I apologize for the infrequent posts lately, but her changes now have been slow and some days there just isn't much to report.  Just remember, no news is good news. Thank you for all of your support, it has really helped a lot.

Yum food!

Almost caught her full smile. 

She was making noises in both videos but the camera didn't pick it up. I'll try again later to record them.

Yum food!

Brenya's doctor decided to try bottle feeding her yesterday.  This was a big surprise to us because we thought she had to be on a lower flow of air before she could try to eat on her own.  Some of the nurses thought it might be to early but the doctor was confident she could do it.  We took it very slow and she did great! She only managed to eat 4ml before she got tired out and was done.  It amazed the nurse she did that much, though, and she did it with no problem.  Today we tried feeding her again.  We tried twice, the first time she managed 30 ml and the second time she got 39ml.  This was an even a bigger shock to everyone. A lot of the time babies in the NICU, especially ones with diaphragmatic hurnias, have a very hard time learning to eat and want nothing to do with the matter.  Brenya, however, loves her food and she shows it with her eagerness to eat.  We are very happy to see this!  It's hard work eating from a bottle though, so we are still taking it slow.  She only gets to bottle feed twice a day until she gets a little stronger. 
Another sign that shows how well she is doing is the fact that she is down to half a nurse.  For the past 5 days she has shared her nurse with another baby in the room.  This is a big deal considering when she first got there, there were two nurses watching her nonstop.  It is so wonderful to watch the support she had disappear.  She is doing well with the weans from her drugs and oxygen.  She is now getting her morphine dose every 6 hours and the adavan dose has been cut in half.  She is also down to 3.5 liters of oxygen flow.  Slowly but surely she is working her way to being off everything.  

Small steps

Brenya was  switched from versed to adavan the other day.  The versed wasn't working quite as well as they would have liked at keeping her calm and they think the switch will do the trick.  So far, it has.  Today she was able to be weaned on both the morphine and adavan.  Instead of being on a constant drip, she now gets one dose of the adavan every 6 hours and one of morphine every 4 hours.  She is down to 4 liters of flow with her oxygen (she has to be down to 1 before she can go home).  She is on day 23 of 28 of her antibiotics. We have been doing physical therapy with her to help her strengthen her muscles and help her range of motion.  She is getting stronger every day.  The doctors hope to being bottle feeding her sometime during the first of next week.  We are steadily moving forward.  Brenya is such a happy baby even though she has been through so much.  She smiles and coos a lot and really only fusses when she is hungry or needs her diaper to be changed.  She is an amazing little girl.  We are very proud of her and can't wait to bring her home so everyone can meet her.