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

Procedure is complete

They were successful in finding the abscess. it was attached to the small intestine and was leaking when they put in contrast to see it's flow. They drained it and attached a tube that extents out her body to continue to let it drain. They say the drainage will look like poop. They will leave the drain in place till they are sure it is drained. She did good during the procedure. She remained warm and stable with her vitals. We should see a significant decrease in her stomach size. The abscess was about the size of a couple golf balls (ok maybe not according to another surgeon). That is very big considering her size. There is still another small abscess they could not get to that they feel they can treat with antibiotics at this point. The abscess explains why she continually had a need for platelets. The platelets had surrounded the abscess and tried to wall it off the to keep it from leaking into her body. Now time will tell with the drain and antibiotics in place how she bounces back.

As a side note she has had 10 different IV locations in the time she has been at Primary. WOW ....She is the first NICU infant to use a portable power pack for her issolette. They used it yesterday for the first time today for the second. Carrie helped direct the nurses today in how to hook it up. The procedure they did on Brinleigh is also vary rare. That gives you comfort going in doesn't it? Brinleigh obviously likes to be unique and special.

Procedure Today - updated at 1:00

They found an abscess in Brinleigh's bowel during the CT Scan.  They will try to do a procedure through her rectum sometime this morning to try and get to it.  If they are not successful they will do surgery to get to the problem.

Lets hope they can get to it via the procedure and not have to get to it surgically she is so fragile.

Here is a picture Carrie sent last night.  She had her eyes open and was looking around allot she said.  You may notice she has lost allot of her hair and her skin is peeling.  The peeling is from her being bloated and stretched.  Her color is a little off because her platelets are a bit low.  They plan to give her more platelets and blood prior to the procedure today.

Update:  I just got an update that says she has two abcesses one is in her bowels the other in her pelvis.  I did some reading and it said they can be caused by bacteria.  So the assumption is the bacteria she has been fighting led to the abcesses.  Only what the internet suggested to me.. :)  They don't know if they can get to both of them without being more intrusive.   She is schedule for 1:30 procedure.

Back in her Room

OK...  for us it doesn't look quite so comfy looking.  But she is back in her room after the tests and is stable.  Now lets hope for some answers from the scan.  Regardless if it is good or bad a least we may know something.  Lets hope for good of course.

CT scan at 1:00 today

They are doing the CT Scan today. This is good and bad. Good because they can see about everything and assess her entire health. Cons are they have to move her. Subject here to the noise. Hope her body temperature stays up and inject her with contrast for the test. Carrie is very nervous about it.

Little Stinker

Brinleigh has been bradying which means her heart rate keeps dropping. As a result they are thinking about giving her caffeine to stimulate her heart. We suggest Rockstar for stimulation

Brinleigh's Instruments



  We thought it would be interesting to take you into Brinleigh's world.  These instruments are vital to her health.  It is very overwhelming at times.

The first picture is the Monitor that is right next to Brinleigh.  This tells at a glance allot about how she is doing.  It shows her heart rate, blood pressure, oxygen level and I believe her co2 is also on this one.  They can add and subtract what they want to monitor.  When something is out of range it beeps and we all look up.  It beeps allot.

Another picture is a bank of 'stuff' that is all her medicines and fluids.  At the time of this picture all but one of them was used to give her some type of fluid or medicine.

The next picture is her ventilator to that regulates her breathing.  She has been on 3 different ventilators during her care to this point.

The picture that has Carrie in it she is looking at Brinleigh as she is in her isolate.  It is a very controlled environment to simulate the womb as much as possible.  It keeps her warm and is her own little environment.  She is covered allot again to make it dark like the womb.

Another picture below shows all the 'hookups' that Brinleigh has attached to her.  Sure glad someone knows what they all are and do.

 

Day of Reflection

It was four weeks ago today that Brinleigh and Maeleigh came into this world and changed our lives forever.  Today is a day to reflect.  With the news of these precious girls arrival came amazing family support.  Dustin's Mom hurried up from Zion's, Carries parents in Vegas hurried home and Carrie's brother caught a flight from Portland as soon as he could.  Everyone that lived by them also rallied around them.  All in support of Dustin and Carries new little family that came way early.  Carrie remarked how she had tons of text and calls on her phone and was overwhelmed and could never return them all.  Especially with her focus on her girls and her recovery.  So we talked with Dustin and Carrie with the suggestion of this blog as a way to distribute information.  The difficult part was deciding on the right words to say and pictures to post.  This has continued to be very diffuclt at times.  We have tried to be sensitive to the pictures and the content.  It has been a wonderful tool for Dustin and Carrie and a relief to them.  If they could text and talk to everyone they would. 

When born Brinleigh cried  a bit and was taken to the NICU.  Maeleigh was delivered in her sack straight to the NICU.  Brinliegh did well from the start.  Maeleigh however had problems with her lungs.  Our first visit to Carrie was  to experience a call to her room for her to come to the NICU as soon as possible Maeleigh was struggling.  The nurses could not get her in a wheel chair becuase she was still numb from her delivery.  So as only a Mom can do she suggested they let her Dad pick her up and get her in a wheelchair to go see her baby.  Of course any Dad would do that for their child. 

Maeleigh continued to struggle and had bleeding on the brain.  After 5 days her lungs and brain just could not recover and develop enough to sustain her.  It was very difficult to watch Maeleighs life slip away in the arms of her parents.  Then to watch them have to go through the burial of this angel.  We were so very proud of the words that Dustin spoke at the services.  We know both of them struggled to find he right thing to say.  It was perfect and they are amazingly strong.

Brinleigh our rock star at the beginning has struggled since the passing of her sister.  Who really knows if it is related.  Her infection/fungus continues to baffle the medical people at Primary.  She had her little emergency surgery that threw us all for a surprise.  Next her stomach swells when they start feeding her and it has not gotten better or worse.  We are so fortunate however to know that she is in the best Children's hospital in the intermountain area that we can just drive to.  Brinleigh's health is still a puzzle but she continues to gain weight and have an attitude.  All good signs.

We are so proud of Dustin and Carrie and their strength and commitment.  Carrie is there for countless hours of the day overseeing Brinleigh's care.  She understands her care to a point that the nurses consult her and ask her about things.  Dustin is so torn and wants to be with Brinleigh but is dedicated to making a living to support his family.  He is there every night after work and goes home late with Carrie.  We dont' know how they do it.  We know they were very exhausted at the end of this past week.

Many of us are just grateful for the few minutes we get to spend seeing Brinleigh and supporting Carrie and Dustin's family.  We all wish there was more we could do as many of you do.  Continue to keep them in your thoughts and prayers is the best we all can do. This road is a long and rocky one.

Goundhog Day

Seems to be the same stuff another day. Good news is that all the tests continue to come back within normal ranges.  Her spinal tap was good, all the blood and other fluid draws show nothing of significance.  Her belly is still swollen and tender.  They talked about doing a CT Scan.  To do that they would have to move her downstairs and they are worried about that and the noise from the scan and the effect on her ears.  The surgeon that did the surgery on her stomach is very much against the scan.  He feels she has a small opening somewhere in her intestines that will heal itself given time.  Another surgery isn't good for her he says and the scan has to many risks.  Her stomach is getting a better color and not getting worse etc so he wants to continue to give her body time.

We learned another term it is 'bradying'.  That is when the heart rate goes very low.  She was doing that allot when they were touching her yesterday (Saturday).  She is so tired of being bugged obviously.

Just a Itsy Bitsy Tiny Miracle.... Please!!!!

They are still baffled by her CRP number and her stomach which is very swollen and tender to the touch.  We aren't asking for much just for someone to solve two little mysteries about our Angel Brinleigh. 

They called in the infectious disease team yesterday and they did a spinal tap for fluid to see what they can find.

With all that look at the proud Daddy that got to pick Brinleigh up as they changed her bed.

Carrie and Dustin are so dedicated to Brinleigh and overseeing her care.

Don't drop that heavy 2 lb daughter Dustin.

Loss of words on posting

It is very discouraging to post since all there seems to be is more and more frustrations so today I will say some good things.  There is still plenty of other to post she is still a sick little girl who goes up and down hourly.

Last night when they were doing her care Brinleigh got ahold of the nurses finger in her glove and started sucking on it.  So they went and got her a very tiny binky and she loved it.  She didn't get to enjoy it to long since it interfered with her breathing tube.  Dustin got to hold her during her bath and enjoyed every minute of it.  They have tested the majority of her organs including her eyes and no signs of bacteria/fungus in any of them for now.  Yes this is good and bad.

She has been eating breast milk the past few days and seems to have digested it all and even had some stool.  Good sign most things are working.

Oh and guess what???? She is now officially just over 2 lbs. 

Not a Happy Little Girl

The picture says it all about Brinleigh's day yesterday.  If she didn't have a tube in her throat we are sure we would have heard her crying and not just seen the scruchy forhead and discofort in her body.  Something is obviously bothering her so they gave her something to sedate her.  Her blood pressure was very low yesterday and her heart beat was high.  She had a couple days of not having to have to much medicine followed by a day when she seemed more uncomfortable again.  They are giving her blood to help with her blood pressure.  They started their taking of blood samples for testing.  It will take them a few days to get all the samples since they cannot extract enough blood from her in one day to test them all.  They did an ultra sound on her hips since they saw a dark spot on one of the x-rays.  But all is well there.

They are still searching for where the mystery bacteria/fungas may be.

Testing.. Testing and More Testing

Yesterday Brinleigh went through a battery of tests.  She has a high number on her CRP test (C-Reactive Protien). This number represents the presence of an acute infection or inflamation.  They are looking at body organs to see if they can locate the source of the infection or fungus. They did an echo on her heart which is came out fairly normal excpet for a small hole that is very common in 1-5 people and most people live very normal lives with it.  They scanned her adomen  and it appears normal after the surgery.  They looked at her Kidneys and found some spots but think its ok since she does urinate alot.  They will take a urine sample to test it further today.  The liver looks good but they need to start feeding her breast milk to get it used to working.  They discontinued the breast milk when she got sick so that her body would not spend to much energy on digesting the food and it could fight the infection.  They also did a brain scan which we all hate because of how it turned out with Maeleigh.  There is a dark area so they put her at a one which starts to freak out the entire family.  Her going from a zero to a one is very heart wrenching but the Dr's try to reasure us that it is nothing major.  Well considering it was a major reason we lost Maeleigh it worries us all. 

Today they will take different fluid and blood samples from many parts of her body where they are putting in blood or medicines.  They will check those lines to see if they also carry the bacteria from the hospital that has made her sick.  We continue to be frustrated that she is a sick little girl because of the hospital born bacteria.  We wonder how good would she be doing right now if they had not introduced that bacteria to her.  Of course we can only just wonder.

So today they become extractors of fluids and blood to see if they can detect the location of this nasty bug.  She looks so very beautiful from the outside we hope her inside can get better.  Until her CRP number drops they will continue to look for and treat for the bacteria or fungus.  They seem to use both terms at times.

3 Weeks

Brinleigh passed her 3 week birthday yesterday.  She is still at Primary and they have put her on a differnt ventalator again.  It is one she has been on before but it simulates more natural breathing and allows her to do some breathing on her own.  She is still struggling with the infection and is up and down with her total set of numbers.  Many of them are good but many are not.  It's an interesting game to keep a balance.  They get less yellowish fluid from her lungs but that does not mean she is over the bacteria she has.  She is still fighting it.  Her color is good and she is more patient with the nurses when they give her more attention and she doesn't seem to mind.