One week of home life

The first week of home life was very busy and full of adjustments.  During the week Brinleigh went the the Ear Nose and Throat Dr on Tuesday that then referred her to be fitted for hearing aides on Thursday.  She was fitted for those then and the should be ready for her after the first of the year.  She went to the Pediatrician on Wednesday after a morning visit from the PT/OT staff.  She apparently does not like the car rides much and she sleeps through about 1/2 of the night or about from 10-1.  Hopefully the second half will happen soon.

It is more difficult to keep up with her happenings.

Brinleigh Summary

Chilling at home in my Mamaroo

We thought we would give a summary of what we know about Brinleigh as of now.  First off she has had a long first day at home with very tired parents.  She has been very fussy. We will go through all of what she has been tested for that we can remember.  Her second day and night at home was much better. The best outcome is that none of what she is dealing with is neurological.

- Reflux:  This is her most significant challenge.  The results of the PH test is that she has a very severe case of Reflux.  Severe enough that they feel surgery to 'disable' that reflex may be the only way to fix that.  Dustin and Carrie have determined to give her time to see if it will heal over time and with her growth.  She is on 2 medications of the maximum dose she can have for it.  This is what makes her fussy and uncomfortable all the time.  If she had the surgery it would be a life altering surgery.  She would never be able to throw up when she has an upset stomach etc.
- CMV Virus: This is also a life long potential challenge for her.  She will always need to tell her care providers she has this virus.  They tested her level of this virus to see if they should treat her to get her levels down.  The level of this virus after the test is at the low point that they would have wanted her at if they would have treated her.  If you read things about this virus they can be very challenging.  However many of us walk around in our daily lives with this virus also.  So only time will tell.  They decided not to test Carrie or go back and check to see if they have any blood from her being born to see if she had it then.  The fact is she has the virus regardless of how she contracted it.  This is not a major concern currently.
- Lungs: These will also be a challenge for her.  Especially in the next few cold months.  She basically has chronic lung disease.  Respiratory colds will not be a good thing for her go contact.
- Hearing:  After getting Brinleigh home and the dogs barking it is confirmed she can't hear them because she does not react to them at all.  This is a positive for all you moms who's baby's have been waken up by barking dogs in your house.  On Tuesday they go to the Ear, Nose and Throat Dr. along with the Audiologist to look at hearing aids for her.  These visits will be long term for her of course.  It is not known if the hearing loss was part of any of the medications or the virus she has or it is genetic.  So now as a family we are all into the signing time videos at http://www.signingtime.com/ .
- Aspirating: She is still on the thickened breast milk for her aspirating.  They hope it will just fix itself over time.  They thicken her breast milk with rice.  She has a follow-up swallow test toward the end of the month to follow this.
- Eyes:  They are still developing but since she is now off oxygen they can now develop better.  She is starting to follow things and sure recognizes her Mom and Dad.  She has a followup appointment soon for those also.  This is another long term care she will have.  She will have some peripheral vision loss but how much is not known
- Kidney stones:  She still has those as of the last test.  She also has an ultrasound on those in the future.
- Heart:  As of the last scan she has signs of  minor hypertension which can correct herself.  She does have a hole in her heart.  It is not the part of the heart that is good but it may not have any long lasting effects to her.  Only time will tell.
- Brain:  We are counting our blessings that at this point in time all these scans are fairly normal.  Many of the things she has been through could have significantly affected her brain.
- Aptia:  They determined that she is not apnic and no need for the sleep test.

They have Brinleigh home which is very nice.  She is a very high maintenance baby for sure.but well worth it.  In all it may sound like alot that she will struggle with but it is all managable and she is a wonderful addition and blessing to all of our lives.

We can't forget little Maeleigh this time of year.  Here is a picture from her resting place with her little christmas tree and dog.

Everyone sit down... Brinleigh is HOME!!!!

Got a text from Carrie at 2:33 today saying they are on their way home.  1 day short of 5 months and they finally get to be a family.  You guys will be great parents.

We love you and are so happy for this day to have finally arrived.  I can't type through my tears of happiness for you.

Happy St Nicholas Day

Here is Brinleigh in her St Nicholas outfit on December 5th.  Yes she had her cute little furry boots out for St Nick to fill with goodies.  For those of you that don't know St Nicholas day is a German tradition passed to Carrie's family from her Mom's family who's Mom that was born in Germany. (Get that?)  Yes St Nick and Santa Clause are not the same.  Google it.. Oh and yes she is getting to be quite the little chunk, but a darling chunk. Brinleighs sister Maeleigh has the same little dog attached to a christmas tree at her grave.

Penalty flag for 'Piling On'

They concluded the PH test but will not have test results back until sometime the middle of this week.  With the hearing test results they tested for a virus called CMV that one of the affects from the virus is hearing loss. Brinleigh's test came back positive for that virus.  At least maybe we were not exaggerating that she had hearing and now doesn't as a result of the virus.  They are investigating to see if she was born with the virus or contracted it later.  It is a life long virus so stay tuned to the other potential findings.  It is still early and we are hoping for the best of course.  Dustin and Carrie just want to get Brinleigh home so they can be the parents and deal with whatever may come.  We definitely agree we need a Brinleigh home for Christmas campaign.

Fast for Brinleigh

For those that would like to participate we are dedicating a fast for Brinleigh this weekend.

A huge thanks to everyone for their continued prayers and thoughts on behalf of Brinleigh, Dustin and Carrie.

She has struggled eating the past few days and they wonder if it is because she has been without her reflux medication so she just doesn't like to eat because of the discomfort.  They have totally taken her off of her oxygen so she is now breathing on her own with room air just like the rest of us.  The PH test starts today and we understand that is a 24 hour long test.  The results are back from the ultrasound on her kidney and there is no changes in the kidney stones.  They look the same.  She has been sleeping allot lately and not eating very well as mentioned.

A very quiet world

The results of the hearing test are in and as Carrie put it to her Mom 'Brileigh lives in a very quiet world'.  The results are still difficult but we were all more prepared for the potential results this time.  They did say they will get the Ear Nose and Throat people involved to see if there is a potential for hearing aides or even Cochlear Implants for her.  So only time will tell.

They were all ready to do the sleep test on Tuesday Night but they never showed up to do it.  Now the people or person that does it is unavailable for 2 weeks.  She has had a couple of good days and night in sleeping.  Tomorrow they will do the PH test.