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.