Happy Halloween..... ooooooo

On Sunday Brinleigh was getting in the Halloween spirit with her little hello kitty outfit.

Today on Halloween she is a little witch.  Her Mom alwas wanted to be a witch with a green face every Halloween.

They have met with the neurosurgeons and determined that she is too small to remove the tumor at the back of her neck.  It is too risky.  If she was larger and around the 10 lbs they would do the surgery now.  The area that the tumor is in would be affecting her swallowing if there is a problem.  Brinleigh is doing great eating and swallowing.  They will re-look at the tumor the first part of December but watch her till then.

There is still concern about her hearing and we are all very hopeful she does not have complete hearing loss but only time will tell.  She is eating good... maybe too good as she is starting to be a little on the pudgy side.  She now weights about 5 lbs 9 oz.

They have messed a little with her oxygen turning it back up to try to get her to settle down.  It is frustrating as she has to be on a low flow of oxygen to send her home.  She is still irritable and holds her breath and turns red when she gets mad.  When she does that we just say she is being Brinleigh.

She has to be good with no episodes of up and down for 7 days before she can go home.  Right now we are hoping again for around thanksgiving.

Happy Anniversary Dustin and Carrie? ..... well maybe not

First off let me clarify what I miss-understood about the test.  Brinleigh had the MRI on her head for them to try to find out why she is so irritable not her stomach for digestion.  They also did a hearing test on her after she came back.

They found a tumor or unknown spot at the bottom of her head.  Other than that no new findings.  They are involving the neurologist and another team to look at it and see that they think.  They will repeat the MRI in two weeks. 

Brinleigh failed her hearing test which as of now says she has no hearing.  This baffles all of us.  We have seen her react to sounds and things around her.  If she has lost her hearing something has caused it.   They will repeat that test also in two weeks.

On a good note: Disease is gone in the left eye, the right eye has a little spot left they will check it in two weeks and probably will be the last check on that.

As Carrie says it's a wait and stress thing.  So it seems she won't be coming home anytime real soon.

Brinleigh after her MRI yesterday

Hang in there Dustin and Carrie we all love you.

Due Date

Today is the day that the twins were to be due. We know it was a difficult day. The twins were born on day 174 of the usual 280 days of gestation. Brinleigh has now been in the hospital for 106 days of that 280 days she should have been developing in her moms stomach. To add to the the day tomorrow Brinleigh will have an MRI on her head are for them to look and see what may be irritating her. No time is set for that procedure.

This is the ultrasound of Brinleigh and Maeleigh at inception. Carrie and Dustin were so excited to be having twins.

Merry-go-round

I am happy when I see my Mom & Dad

The process of trying to get her ready to come home continues but is very slow.  There was hope she would come home soon but now they are saying possibly around Thanksgiving time.  Her eyes look good but they cannot adjust the oxygen down until her eyes become vascularised.  Until then she needs to remain on the higher flow of oxygen.  She is still struggling with reflux also which makes her very ornery.  They have her on some medicine to line her stomach and throat to help with this during her feedings.  Her eyes need to vasularise, she needs lower oxygen and her feedings need to be figured out before she can go home.  Carrie and Dustin need a medal and recognition for their patience.

All dolled up

Brinleigh all dolled up

Sorry it's been a few days since we posted.  Brinleigh is still growing but struggling with reflux.  She really wiggles and destats alot when she eats.  They are trying some medications to help coat her stomach and throat.  The eye surgery seems to have been a success say the Dr's.

Just chilling with my Grandma for her first time of holding me.

Another Milestone

Brinleigh with her Mommy giving her a bath in the little pink basin.  Many of you know how big or small those little pink tubs are at the hospital.  Brinleigh was moved out of her isolette and into a crib.  Another big step for her and closer to getting her home.  The are starting to tell Dustin and Carrie things about when Brinleigh is home.  They say anyone that sees her has to have had a flu shot.  Nobody under 14 should see her for awhile since they are walking germs.  Brinleigh has chronic lung disease and any sickness that would affect her lungs in the first few years would not be good. 

We are so happy about her progress and that she is closer to being able to be home.

Feeling Good

Brinleigh is at 4lbs 2 oz.  She is close to being back to where she was before her eye surgery.  The Dr's say the surgery went well but only time will tell.  Brinleigh took longer than they expected to start to breath on her own again and she struggled with reflux when they were feeding her after the surgery.  Thanks to nurse Carrie that suggested they feed her over a longer period of time rather than just giving her all her food at once.  That has made a huge difference for her.

Back on the road to feeding sleeping and growing.