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.

Back to School... more testing

First  on the left is a picture of Brinleigh on Sunday Night.  Notice no oxygen.  The next picture is her early Monday  morning newly intubated before her MRI scan.  It is a great example of the swings that happen with Brinleigh.  One minute wow we are making progress the next you are shedding tears as she is back on a ventilator.

So here is the scoop on her testing this week.  Her MRI came back with good news.  The 'tumor' is not a tumor at all just a mass that has no effect on her..  Since it has not affect they will not scan for it again.  As they said it is something that bugs them because they know it's there but it does not hurt or affect her which is great news.  They have done a more extensive hearing test but as of now they do not have any results back yet.  Tuesday they did a more extensive swallow test and found nothing new.  She aspirates on the thin feeding but not the thicker.  That is also good news.  Last night they did a sleep study on her so stay tuned for those results.  Friday they will to a PH test for her reflux to see the acidic levels of the reflux along with how far up from her stomach it goes.

First craft project

Another test... another setback

Just as we think there are no new tests to put Brinleigh through they find one.  She still has her purple spells and bradys so they continue to be stumped.  So one of the nurses gave some thought to Brinleigh and mentioned that she seems to have a cough at times.  So they did what is called a swallow test and found that she is aspirating.  The test found that as she eats and pauses there is a small build up of fluid at the back of her mouth.  When she starts to eat again the reflex that closes off the trachea doesn't close properly so then a small amount of food/liquid goes into the lungs which is not good.  The concern is if allot of liquid gets in the lungs it could cause her to choke, suffocate or give her pneumonia from the bacteria.  They did find that if they give her thicker liquid she does not aspirate.  So the treatment for now is to thicken her breast milk and let the reflex develop and test again.  It is a significant worry because we all know liquid in the lungs is not a good thing.  This may be why they have struggled with her oxygen levels and who knows if it will help with her purple spells.

Today she gets her eye checkup.  Soon they will redo the MRI and take more 'slices' so they can better see the location of her tumor and if it has any effects on her swallowing or her hearing.  They will also look closer at her hearing with the MRI.

The setbacks are starting to take a toll on Dustin and Carrie as they so want to get Brinleigh home it is very hard to have more tests find more issues for Brinleigh which gives greater concerns for Brinleighs current and long term health.

Looking Up.... let's hope it stays this way

Brinleigh still has her moments but they are getting better.  I even get to post a picture today of me (Grandpa Roberts) holding her.  She was well behaved for me as I put her to sleep when she was suppose to be eating..  Thanks Brinleigh for behaving for me.  She seems to be sleeping better and in not so much pain.  The kidney stones are very small and so they are letting them pass naturally. I seems the removal of all fortifications and the protein has helped her also.  She still has stuff to overcome before going home.  She has to still get her oxygen under control, she has to get her eyes cleared and she can't have what they call her 'purple spells' where she holds her breath.

They have checked Brileigh's head, heart, internal organs eyes, ears.  All in the last few weeks.  It seems there isn't much else to look at.  They all look pretty good.  Of course there are some things they find but nother major that is not already known about.

Thanks for some time with Brinleigh.

4 Months Today!

Yesterday was a rough day for the Jenkins family.  It seems Brinleigh had a nurse that does not know her tendencies of being... well.. just being Brinleigh.  Which means she can be fussy and ornery.  Brinleigh was irritable and ornery so the nurse assumed she was in lots of pain with her stones.  So she continued to drug her to the point of being totally knocked out.  When Carrie arrived at the hospital she was like... umm.. what happened to my baby she looks terrible.  She was very patient outside with the Nurse or so she says.. but was not happy and very hurting inside for Brinleigh.  Brinleigh was so out of it she could not eat and her oxygen levels dropped very low because she was so heavily sedated. She was having a hard time breathing on her own and her oxygen levels were very low.  It was scary.  It was very hard for Carrie and Dustin to see her so out of it.  Thank goodness for one of her primary nurses to be on Brinliegh last night to try to get her back on track and the large dosage of drugs out of her system.  It appears for now they are just going to let the stones pass since there are just allot of small ones.  They forgot to get the kidney team with them yesterday so Carrie had to remind them about it so that should be done today.  One of the nurses said she has never seen Kidney stones in a baby and the staff said they have only seen it a few other times.  Way to go Brinleigh you just keep everyone on their toes.  You are truly a unique little girl.

They also checked her eyes which she hates and all looks good they said but they will check them again in 2 weeks.

Today they will also do an Echo on her heart.  It is part of the process they need to do in preparation for sending her home.  However everyone is very nervous because it seems when they do something they find something new.  She has had this done before when she was real sick and everything looked good.  It's been awhile since then and we are all very nervous about it.

Nothing is simple with this sweet little angel.

Update: To elaborate on the difference in a nurse that does not know Brinleigh yesterday and those that do.  The Nurse on the day shift yesterday gave Brinleigh 3 doses of Morphine between 7am and 12 pm.  The Nurse last night gave her one her entire shift and she has had one so far today up till about 1:00.  The Nurses last night and today are part of her Primary care giving Nurses.

When they said they were doing the Echo they said they weren't looking for anything in particular.  I guess that was not the case they were looking for any signs of hypertension.  The preliminary findings are good.  This ride has not been fun for a long time now.

The Answer to the Mystery.....

For sometime Brinleigh has just been crying never sleeping and always irritable.  Recently her heart rate and breathing had dropped when she gets mad and holds her breath.  It was real bad last Saturday.  So they decided to do some X-rays and ultrasounds and they found she has kidney stones.  These were most likely caused from the fortifier and protein that has been added to her breast milk.  So for sure no more of those and Carrie has to take calcium out of her diet also.  The kidney Dr will determine the course of action sometime today we hope.  Meanwhile she is getting medication for her pain.  Up the roller coaster hill we go again.

Maeleighs Grave Marker



So very tender .. Nicely done Dustin and Carrie



Another week goes by

It's been about a week since the last posting.  Brinleighs tests have come back negative on her stool except for some that take time to 'grow out' to see if there are any issues.  She had her feeding tube taken out early last week which means all her feedings and medications are now being done orally.  She continues to hold her breath and get mad which causes her to brady which is not good.  She about gets to the stage of passing out before she will breath again.  Obviously this is not a good thing.  They are meeting today to review all her medications.  This means more potential changes which is for the good but still hard because you don't know how she will react to the changes.  Interestingly the Dr. that looked over Brinleigh and Maeleigh when they were born comes on shift at Primaries this week.  We wonder what that reunion will be like for everyone.  We expect it to be a good reunion nothing bad.

In Isolation... again

Picture is of Carrie and Brinleigh a couple of cute witches for Halloween.  One of them isn't too happy can you guess which one?

Later last night they put Brinleigh in isolation which means they are wearing gloves and gowns to handle her and she is back to having a dedicated nurse.  She was very fussy and has been have some very runny stool.  So they took some stool to test it to see if there is any issues.  We assume bacteria again this brings back bad memories.  Uggggg.......

They put some protein back in her diet a couple days ago which could be the cause of the loose stool.  Lets hope.

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.

Surgery Update

Brinligh did have her eye surgery yesterday.  It took place much later than hoped in the day.  The poor thing was ornery and wiggly because she went without feedings since 6:00 am.  They started the surgery about 12:30 which was suppose to take place earlier in the morning.  The surgery lasted about 2 hours.  They said she was very upset during the surgery so they had to sedate her more than they hoped they would have.  She was still very knocked out when we left about 8:00 pm.  It was hard to see her with a breathing tube again and her little eye's taped closed.  It is just a small setback that is for the good in the long run.  We did find out more details about surgery.  The surgery was to give increase her chances of good eyesight.  We thought it was to assure her that she would be able to see.  That is not the case.  Without the surgery her chances of  poor eyesight were about 30-40%.  With the surgery it drops them to about 8%.   The surgery trimmed the sides of the pupil where the abnormal vessel growth is happening due her large swings in her oxygen which is of course due to her premature state.  The connection between her eyes and her brain which determines the ability to see still has to develop as normal and that was not correctable if it does not happen.  The surgery makes her pupils able to perform their job.  The trimming of her pupil on the sides will have some affect on her peripheral vision.  How much is not really known for some time.

Lastly was the surgery a success?  The Dr's have yet to come talk to Dustin and Carrie.  They were doing the same surgery on many babies yesterday so they don't know any details yet.  We just know Brinliegh was not a happy camper during the procedure.  They will continue to monitor her eye's and if they do continue to get worse they can do the procedure again.  This was the optimum window for this procedure.

Eye Surgery Today (most likely)

The eye doctors from Moran Eye examined Brinleigh yesterday and it looks like surgery today.  About 9:00 am they will dialate her eyes and have another look.  If they confirm their original findings they will then immediately do the surgery.  They will basically paralyze her eyes so they won't move during the laser surgery that will be done right at her bed in the NICU and last about 90 minutes.  Moran which is adjacent to Primary is supposedly a national leader in ROP eye research for pre-mature babies.  So they should know what they are doing.  There isn't much choice.  Without the surgery she would have very poor or no eye site at all.  With the surgery she has very good chances of having full vision.  Her peripheral vision will probably have some limitations but  how much is not known. 

It is a little setback in that she will have to have a breathing tube again and they will have to wean her oxygen after the surgery.  They are small setbacks but needed to save her eye sight.  They hope to have her well on the road to recovery by this evening.

Finally my very own duds

Yesterday Brinleigh got to wear clothes that her parents bought her for the first time.  Carrie loved being able to dress her in a little outfit she bought even if the frillies on the butt were mid way down her little legs.  She is now 3lbs 14oz and as Carrie puts it almost like a real baby.  Oh and she has had her first real bath in a little pink tub.  She wasnt' quite sure about it at first.

All Snuggled

What to do what to do.  Brinleigh is now about 3 lbs and 10 oz.  Approaching that 4 lb area where they were hoping to be able to remove her from her isolette.  The concerns are for her to be able to retain body weight if they do.  Will she be able sustain her body temperature and wiight by burining calories keeping herself warm.  They try to have Carrie Nurse her at least once a day to get her used to breathing and swalloing at the same time.  She burns calories when she nurses.  So between the two they don't know if it is time yet to put her in a crib.  The nursing is good for both Brinleigh and Carrie's milk supply. 

She will have her eyes checked again on Wednesday.  We will see if they are worse or any better then.

Eyes still a concern

Brinleigh had her eye exam and her eyes continue to get worse.  The condition is ROP (retinopathy of prematurity).  Basically her need for high levels of oxygyn contribute to the problem untill her eyes are fully developed.  There is a risk of decreased vision and blindness without successful treatment.  Here is a link to informaiton on ROP.  If her eyes continue on the current path she could need laser surgery by next week.
 http://www.ampersandcom.com/ampersandcommunications/prematurebabiesatriskforeye.htm
Of course the Dr's and all of us are hoping for a good outcome.  Her current eye development is at a 3 and getting better.  What we don't know is what is the development scale. 1-5, 1-10?  Once she gets to that stage her risk of ROP getting worse is gone.

They have done alot of blood tests on her recently.  To see if she is sick and to check to see if she is building red blood cells.  She is not sick and her body is starting to reproduce blood slowly.  At the rate she is gaining weight she may be out of her isolette/incubator soon.

Brinleigh and Maeleigh get a Cousin

Welcome cousin Easton born today to Josh and Megan Roberts.  He is 7.4 lbs and 19.75 inches.  Josh is Carrie's brother.

We are so happy for Josh and Megan that they have a healthy new little addition to their family.

It was alot of fun looking forward to us having 3 babies born all around the same time to watch grow and play together for many years.

Makes one wonder why things are the way they are. 

Do you think Easton and Maeleigh crossed paths before Easton arrived?

Welcome to the world Easton can't wait to see you and Brinleigh playing together.

Brinleigh Video

Here is a little video of Brinleigh being awake and stretching and yes even a little sneeze at the end.
She is now 3 lbs 8 oz and about 15 inches long.  When she reaches 4 lbs they may take her out of her incubator.  We thought when her original due date arrived and all is well she may be able to go home.  Today Carrie learned that they will keep her until her eyes are also developed.  It still could be in that timeline but another obstacle to get over before she can go home.  Carrie and Dustin are very ready to take their little girl home it's been a very long road.

Two Month Stuff

They feel Brinleighs health is good enough that they are giving her her two month shots.  I little weird thinking that she is two months old now but still not suppose to even be here for another month plus.  She is experiencing changes to her eyes for the worse but it is a wait and see situation.  They may heal themselves or they can do some lasik if need be on them.  They are working on getting her to breast feed.

She has all new neighbors in the NICU.  There is room for 5 babies in her unit and all of them have turned over at least once since she has been there.  A few of them more than that. She is the old timer there. Instead of a nurse just for her she shares a nurse with another baby.

Bracelet Information

Many of you have asked about the bracelets.

You can order them at the right for $5 plus $1 mailing and we will send them to you.  Or if you know a family member we can get the bracelet to you through them.  If they don't have any to give you we can get some to them.  We do have a very limited supply of the child size but think we have plenty of adult size bands.

We did the shopping cart method for you in case you want a child and an adult bracelet you can order them at the same time.  When you checkout you do not have to have a PayPal account.  It shows the PayPal stuff in a big large area on the right side.  However right below in smaller area it says "Don't have a PayPal Account?".  If you select(click) that you can purchase directly with any credit card and not have to go through and create a PayPal account.  It will still ask you at the end but you can ignore it.  Not having to have an account to purchase is the main reason we choose this method.

If you have questions on the bracelets send and email to Jenkins.Twins@gmail.com.

Soooo Very Cute!!!

This picture of her is so very cute.  She is wearing the bow and headband her Aunt Kirsten made for her.  She is starting to get her eyelashes and eyebrows back.  They think her losing them was due to the medications and stress her body was under. 

After they took her off the caffeine she started Bradying again so they have put her back on the caffeine.  They would rather have her have a higher heart rate than be Bradying (low heart rate).

She also has now hit 3 lbs on Sunday the same time she turned 9 weeks.  An estimated 7 more weeks till she can come home if all continues to go well.

We did some wrist bands with the girls names on them.
It is one wrist band with both of their names on it.  Inside it says Jenkins Twins also.  Ok so when I ordered them I messed up in says Jenkin Twins opps.

In Honor of sweet little Maeleigh

In Support of Brinleigh

MMMMM.... Good

Brinleigh looks like she has that white powder on her face after eating one of those white little donuts.  Of course she is smiling because it was so good.

Brinleigh has had a hard time sustaining her body temperature and was having an elevated heart rate for the past few nights.  They changed her bed (isolette, incubator etc) because it seemed to be the source of the problem.  They thought that the lack of constant temperature was also affecting her heart rate.  Last night she had a different nurse and she was talking to Carrie and the Dr's and reminded them that Brinleigh as on Caffeine and that could be affecting her heart rate.  They all went DUH that's right so...... they are taking her off the caffeine to see if that stabilizes her heart rate.  Normal range is about 175 to 184 ish.  Hers was getting above 200 consistently.

She is now up to her full feeding of 23 cc's of milk that they are also fortifying with extra calories to try to help her gain weight.

They tested her eyes the other day which still look good with a few areas to watch but nothing of concern.  With her problem of holding her temperature and the elevated heart rate they were concerned she may be getting sick.  Time will tell now that they have made the recent adjustments.

Her color looks good and her stomach now looks in proportion to the rest of her body.  All good things.  Oh and the white on her face is just dried saliva.  The only tube she has in her still is her feeding tube.  The blood tests they did on her earlier in the week were all good.

Eight Weeks

On Sunday was eight weeks for Brinleigh.  She currently has no lines for medicine in her.  She only has the feeding tube.  What a change for her.  She has no medication currently.

She is up to 19 cc's of feeding every three hours.  She is weighing 2 lbs 12 oz.  She is still tiny as you can tell by the pictures.

WARNING!!! You may cry

Finally Brinleigh's Mother and Father are able to hold their daughter and love her.

Yes you read it an see it right. Carrie and Dustin holding her little Princess for the very first time.  How many Mothers and Fathers have waited 52 days to hold their child?  That is 7 weeks and 3 days.

Yes I did.

Milestone Day

Today they took out Brinleigh's breathing tube to the ventelator.  She is now on oxygen tubes in her nose.  This is a big step and great progress.  She is now breathing on her own.  She still has the feeding tube for now.  She is being fed 1/2 of what they want to give her.  She is scheduled to be on the last few antibiotics untill next week.  Then they hope to remove one of her picc lines.  Her art line is starting to deterioate also so that may be gone soon.  That is an ok thing but doesn't give them quite the access to give her medications and draw blood that they prefer.

She is making progress daily.  She seemed to be a strong baby when she was born.  She seems to be getting back to that after her sickness.

She even had a manicure and pedicure the other day.  Her nails were curling to her skin they were so long.  The hospital staff is not allowed to trim them so most of them were done by Carrie and Grandma.

Oh and soon we may even be able to hear her cry.  Not a thing most parents like to hear but it will be very cool sound.

Brinleigh un-masked (well sort of)

Brinleigh's condition continues to stabilize.  Here are a couple of picture of her without the tape on her face securing her breathing and feeding tubes.  She is tolerating her surroundings more also.  When she gets agitate now she likes the human touch to help her settle down.  Which is a hand on her stomach and head. 

She is now 49 days old and her parents are still anxious for the day they can hold their baby Brinleigh.  Her weight is around 2 lbs 10 oz.

I like seeing her face but the breathing tubes and stuff bothers me even though they are necessary to sustain her right now.

Changes in Medications

They are taking her off two of the antibiotics and will watch her.  If she shows signs of being sicker they will test her and maybe put them back on.  They feel like she should be OJ.  They will follow up with another ultrasound on her belly in a few days.

They are still weening her hydrocrotizone down 10%.

Increased her feedings to 3cc's every 3 hours.

Weened her morphine and Ativan down to .09 every 6 hours.

They are going to look at her TSH (Thyroid Stimulating Hormone) level too.  The Dermatologist suggested that as part of the hair loss mystery.  They have looked at that twice but will do it again to make sure.

News Flash!!!

The title made you worry and wonder didn't it?

If you have followed the blog you know that it has been very sad to watch a little girl that was born with tons of hair, eyebrows and eyelashes and lose them.  It has made Brinleigh's Mommy very sad to watch.

Well today a nurse that saw her with hair brought it up with the Dr. during what they call 'The Rounds' where they discuss daily Brinleigh's status the fact that she has lost ALL her hair.  The Dr was surprised and said he had never known a baby to lose all of it's hair like this.  It includes her eyebrows and eyelashes.


Another first and something baffling for them to research.






MMMMM..... Yummy!!!!

Lots of changes under discussion for Brinleigh right now.  She now receives about 2cc of breast milk every 3 hours.  She appears to be digesting it well no bowel movements yet but the amount is still small.  She has her little episodes but they seem to be getting less frequent.  They continue to give her blood every so often mostly to keep her volume up.  Her color looks real good after she gets fresh blood.  They are talking about removing some of her antibiotics which are so many when Carrie spits them all out I can't remember.  Her stomach is still soft and about the same.  She loves her Binky it seems to calm her as much as anything.  She appears to be getting stronger with her breathing.  The ventilator is doing less and less breathing for her all the time.  Some of her episodes seem to stem from her breathing over the ventilator with her own breaths.

We asked for curiosity how long she would have to stay in the isolette and we were told until she is about 4 lbs.  So that is not in the near future. The project her to be about 5lbs when she is sent home.  Which is estimated to be about October 24th which was the twins original due date.

She also has a reputation amongst the nurses for being a difficult baby so not every nurse wants that challenge.  More because she does require constant monitoring and adjusting to keep her just right.  To many episodes of bradying with the combination of oxygyn changes can potentially affect her eyesight.

We are pleased with her progress but it is amazing how quickly something can change so we go hour by hour day by day.  She can look so content one minute and be squirming that something is bugging her the next. Yes this is becoming a standard disclaimer.

Home Sweet Home

Well ok maybe not but... This has been Brinleighs home for the last 6 weeks and will be for some time in the foreseeable future.  You have a better reference as to her size when you see her in there.  Even with her in the isolette you can just sit and watch her for hours.  Carrie and Dustin have chairs they can pull up next to her and look at her.  Many of the pictures appear to be looking directly at Bringligh but they are taken through the glass of the isolette.Very few pictures are of her out of it.  The bed is warmed to a certain temperature and if the small circular holes which are those that they use to attend to her care are left open for very long the temperature will drop.  If so the bed alarms to tell you of the drop in temperature. 

Brinleigh started on breast milk yesterday with 1 cc (30 cc = 1 oz) being given to her in the early afternoon with a second dose of 1 cc to be given to her last night.  They check her stomach to see if she has digested the previous milk first before they will give her the second.  She was given breast milk at IMC just prior to her infection and abscess in her bowels then it was stopped. They feel she has healed enough to be able to let her try to eat.  It is also good to feed her to try to get her other organs working.  Yesterday when she got upset and fidgety with her Bradying they decided to give her a Binky.  It settled her right down. 

On Saturday she weighed 2 lbs 7 oz.  But the nurse was quick to point out she probably has allot of fluid wight retention from her medications.  She is still on the antibiotics.

Just Chillin

They gave Brinleigh a new isolette on Wednesday.  Ahh nice clean sheets and stuff.  She had 2 bowel movements yesterday.  Weird to be excited about poop isn't it?  Grandpa Roberts was a little disturbed on Wednesday watching little Brinleigh struggled with air bubbles but they got those taken care of so Grandpa could sleep better.  She still is annoyed by those other crying babies.  They are extending her pain meds from 4 hours to 6.  Come on Brinleigh just grow, grow, grow.

Oh and she says she is very chilly now all her hair is gone.

On to the next thing

Brinleigh now has a little 'thing' around her head.  It is developing a bit out of whack so they have her lay in the collar thing to help her head development.  Her CRP number is finally under 1 and her blood platelets look good.  Keep up the progress little Brin Brin.. as Uncle Jake calls her. It's so sad almost all of her hair is gone.

Oh I almost forgot... she is about a whopping 2lbs 3 oz.

All Stretched out

Brinleigh's numbers are all looking almost normal.  As you can see by the pictures her belly still isn't normal but it is soft to the touch which is good.  They put some lotion on her skin to help with the peeling. The best indication of her tiny size still is her compared to the small lotion bottle at her feet.  They have sedated her to help her deal with the simulation around her.  That has seemed to help with her Bradying episodes also.



Check out my tope on my head.
It makes my Mommy sad that's all the hair I have left



Positive on the Negative

I seem to focus a bit to much on the negative around Brinleigh.  Conversations today with some co-workers that are interested in Brinleigh's condition shed some positive light on things for me.

The fact that she jumps when a drawer is shut means she has hearing.  That she is sensitive to the light means her eyes are working.  Her getting annoyed by another baby crying means she has other senses that are also working for her.  A nurse proved her lungs withstood some stress which means they have strength.

These are all good things in Brinleighs favor from the negative reactions she has from her surroundings.

These definitely are bright spots in Brinleighs condition.

Both her CRP and blood platelets are almost within the normal ranges again.

Progress and Changes

Brinleigh is still making some progress.  Yesterday they changed her breathing tube to a larger tube.  She was loosing alot of air around her last tube.  With that changes comes the game of trying to get her stable with that oxygen level and tube size.  This morning the removed the drain from her bowels.  There appears to be no more stuff coming out.  She still has bouts of Bradying in which her heart rate and vitals drop.  We were there just a few minutes yesterday and she was all over the place.  They could not get her stable long enough to get a gases test.  It is part of the process and little game apparently.  She definatly likes to remain covered up and left alone.  They are trying to figure out what bugs here most.  Sounds like a fun game doesn't it Brinleigh?

Changes?

Brinleigh seems to be improving. Her belly is shrinking slowly. Her numbers don't reflect much of a change but she is looking good and appears to be going in the right direction. There was a little mishap with a nurse and her breathing machine however. One nurse while watching Brinleigh when her primary care nurse stepped out turned the wrong knobs. As a result they had to do x-rays and take blood to check her lungs and other levels. It was scary and lets hope for no lasting effects of that mistake. Two extra things not scheduled for her. They are trying to keep her dark and warm as possible. She seems to get irritated when the babies in the room cry it is amazing how aware she really is of her soundings

Progress

There appears to be progress with her stomach.  She continues to have bowel movements that have the die and other stuff in it.  It appears that is the method that everything is coming out since they are very frequent.  Brinleigh is still on alot of antibiotics.  More since they grew out what they got out of her bowels.  Progress is very slow but there does seem to be some.  They are keeping her sedated or they should be (another whole store in there about the consistency of her care which is frustrating).  She was very wide awake last night again.  She likes to open her eyes and look around and see her Mommy and Daddy at night and you can just see the happiness that creates for them.  They are getting some fluid out of the drain just not quite what they had hoped for.  The unltrasound does show a decrease in size of the abcess.

Continue to hope for progress and healing.  Her numbers (blood Platelets, CRP and white blood cells) aren't moving alot to show progress but they are not getting any worse either.  It is all just very slow with this little one.

One month old today

"Oh My Aching Head"

2 weeks and 3 days at IMC and 2 weeks at Primary. What an interesting start to life. We are all just very grateful she is still fighting. Her drain isn't draining as they would like but she did have 2 bowel movements today. The first one had some happy moments from one of her surgeons that is pulling for Brinleigh so very much. He did her first surgery and has grown attached to her it seems. The bowel movements mean everything appears to be working from top to bottom inside. That is why the joy so far. Her stomach is still very swollen and they are going to give it some time before they decide on other options such as another surgery.

She is such a sweetheart. She was yawning and trying to open her eyes. She likes her hands by her face which is her trademark. .

We are learning patience for sure. Good night and happy 1 month angel girl