Visit to Maeleigh

Today we (Grandpa and Grandma Roberts) visited Maeleigh's grave to take her a little metal flower with some pink and green balloons on it.  The very first bow the girls both had was a little green bow with pink polka dots on it.  Those colors will probably always be Maeleighs and Brinleighs special colors.

As we left the Cemetary almost on cue the song that was played at Maeleigh's services came on the radio.  It was a bit of a difficult moment for us.

The song is 'If I Die Young' by The Band Perry

We miss you and LOVE you Maeleigh.

Getting Comfortable

Brinleigh has been at Primary now for a few days. She shares a room with up to 3 other babies which is a change from having her own private room. She has been stable which means they are making small adjustments all the time but nothing of significance has changed.  Brinleigh had a nice surprise visit from Carrie's Aunt from Seattle. 

She is still cute as can be and seems very restful and peacful.

My Daddy Loves Me

Brinleigh in her third home in three weeks. This time at Primary Childrens Medical Center. She is such a traveler. She is watched and monitored closely especially by her dedicated parents. She had a fairly stable day. She didn't like the nurses messing with her but she was great when her Mommy changed her diaper.

A day full of surprises

Where to start... this afternoon we were informed that Brinleigh was being transferred to Primary Children's Hospital.  Our thoughts were that her little body was struggling to fight this nasty bacteria.  She did great with the transfer.  Then we got a text from Dustin and Carrie with a note that said they were taking her to surgery in about 20 minutes.  WHAT???! For days they have been taking alot of x-rays of her stomach and chest.  Come to find out they have been worried about an area on the x-ray that concerned them.  They could not do the surgery at IMC so off she went to Primary's.  They thought she had a problem with her bowls of some sort.  Either not connected or twisted or some potential problem.  When they got inside all they found was fluid.  Now were it came from is a bit of a mystery.  They flushed the area and cleaned it then closed her back up.  The surgery took all of 30 minutes to complete which was anticipated would be 90 minutes to 3 hours.  Brinleigh held up find for the duration of the surgery.  This was great news that nothing was really wrong it was short and she did good.

There is still concern with the bacteria she has.  It is very difficult for her to fight it since she really has no immune system yet.  Bacillus Cereus Bacteria is name of the Bacteria (Ya Google it).  We are hopeful she continues to fight that and with time she will improve.  She still has a long road ahead of her.

Not so good

A scary day. I will never say it was a good day again. It seems to not be followed by a good one. They found the source of the bacteria. It came from the the breathing tube they put on her lungs she is a very sick little girl. She has the bacteria plus pneumonia she had struggles breathing for some time today which was very scary. Her breathing tube was clogged so she wasn't getting oxygen she needed so she was struggling. It took them some time to figure that out. This is the second time this has happened so you would think they would have looked there first. She has lots of stuff in her lungs from the bacteria. Avaguard they use to sanitize their hands does not kill the bacteria so they must wash with soap and water. Right now her oxygen level is good they know the source and can fight it. She is a very sick little one right now as stated Let's hope Brinleigh has the strength with the medicine to fight it. I can't imagine how Carrie must have felt watching Brinleigh struggle for air for some time while they tried to figured out why she was struggling

I see you

Last night Brinleigh opened her eyes as her Mom and Dad did her care for the night. Care is weighing her changing her diaper and taking her temperature. Sometime a bit more but those are the basics. Yesterday was a good day.

Two weeks old

Happy 2 weeks Brinleigh

They are struggling still to get her lungs and gases balanced the new ventilator is still the best. She has developed some bacteria so they are treating her with antibiotics till they grow them out and see what it is. Her color looks good she has lots of 'stuff' on her again. She still tries to open her eyes it's very cute. It is very hard to know she is doing well when they keep treating this and that. Most attention is still on her lungs. She has developed some attitude about being poked and prodded. Watch out mommy and daddy.

Another Ventilator

Brinleigh's lungs still aren't quite what they want them to be.  So yesterday she got another new ventilator that works a little different in that it swirls the air into her lungs.  I know go figure how someone figures out swirling air into the lungs.  After a few hours on this new ventilator her lungs were looking much better.  They seem to be both fully inflated and looking normal with this new machine.  There are only two such machines available at IMC and she gets one of them.  Of course only the best for our little Brinleigh.

She now weights 1 lb 10 1/2 oz and is 13 1/2 inches long.  Her left eye is now partially open she looks like a little pirate.  It is cute to watch her try and open her eyes.  Her right eye appears to be close to being open also. 

We know what the numbers are suppose to be on the machines that montitor her so when we visit we look at the monitors almost more than her because they tell us the story of her health.  It makes you very anxious when you see any of the numbers get out of their normal ranges which does happen often.  They introduce changes to her in very small increments then wait for her little body to adjust.  All the while you are very anxious waiting for her to respond to where she should be.

When they take an x-ray you can see that her little bones still are not connected.  She has no elbows, knees hips etc yet.  She looks perfect from the outside but the inside has a long way till developed.

Here is an amazing thought for you.  Her little heart is probably the size of a blackberry but it is fully functional with 4 chambers etc.  Very Very amazing.

Peek-a-boo

Brinleigh and Daddy are playing peek-a-boo.  Either that or Dustin likes the new blanket Grandma Roberts made for Brinleigh.  Maeleigh had a similar blanket that she was wrapped in for her services that she took with her.

How is Brinleigh you ask?

She is doing well in her new digs. Her brain scan is good her chest scan is good other than her lungs are a little over inflated which they say they can address. They gave her a little breastmilk yesterday. If she does well with it she will get more. They will not do another brain scan till she is 30 days old.

Maeleigh's Name

Many have commented about how unique and pretty Maeleigh's name is. Maeleigh was named after both her Mom and her Dad. Carrie is Carrie Mae and Dustin is Dustin Lee. Maeleigh comes from both of their middle names. Mae is also Carrie's Moms middle name and Lee is Dustin''s Dad's name.

Maeleigh's Day

Today we had a wonderful service for Maeleigh. Dustin and Carries tribute to her was very touching. There was a release of 50 balloons after the services with us all sending a thought to Maeleigh.

Thanks to everyone for your love and support.

Moving day for Brinleigh

Today was a very big day for Brinleigh. She had her x-rays, head scan a new piic line and new digs. She was moved from the very new born critical unit pod to a new area in the NICU where she will now call home for the next few months. Carrie said she did very well in the move and they are very relieved they got the picc line in after an earlier attempt failed. Her weight is back up 1 lb 8 oz yeah!

Check out Brinleigh's hairdo

Services for Maeleigh

Dustin and Carrie have decided on a small family graveside service for Maeleigh tomorrow at the Redwood Memorial Estates. There is a family gathering at 9:00 am followed by a graveside service at 10:00.

Following the service there will be a gathering and luncheon from 11:30 to 12:30 at the home of Jeff and Missy Stevens 1267 Dusty Downs Circle. Other family and friends are welcome to visit with Dustin and Carrie at this time.

Thank you all for your support and love for them at this difficult time.

No diaper for me

This is a picture when Dustin was changing her diaper and Brinleigh crossed her legs look how small the diapers are. When Megan Brinleigh's Aunt visited Brinleigh she said the pictures don't really show how tiny she is.

1 Week

Happy 1 week Birthday Brinleigh!

As mentioned Brinleigh is on a new ventilator which simulates more normal breathing patterns.  She is doing well with that.  Last night Dustin changed her diaper and when he went to put the next one on Brinleigh crossed her legs like 'Nope daddy your not putting that back on me'.  It was very cute she was kicking it with her foot.  Some time today she gets a picc line to replace the umbilical line.  The umbilical line is only good for 7-10 days.  We are all nervous about that because that was a struggle with Maeleigh.  They will be doing a brain scan and heart x-ray tomorrow.  We hope for good results from both.  It makes us all very nervous when they change and add things.  We say .. umm wait she is doing good don't change stuff.  As you can image with the loss of Maeleigh they are so very worried about changes with Brinleigh.  The changes are for the good and part of her progression but still very hard because it stretches our comfort zone.  Brinleigh's weight is back down she is now at 1 lb 5 oz last night.  Lets hope she goes back up.  They also hope to start giving her breast milk in the next few days.

Carrie and Dustin are doing as well as can be expected.  They need all of your thoughts and prayers for strength to get them through Tuesday.  Their best therapy is visiting Brinleigh. 

Exhasting Day

Today Dustin and Carrie made the preparations for Maeleigh.  She will be laid to rest Tuesday at Memorial Estates on Redwood Road.

Brinleigh is still doing well.  Today she had the last of her antibiotics which they have been giving her as precautionary measure.  They also changed her ventilator to a more realistic way of breathing.  Her color looks good and she rests peacefully.  

It was a very draining day for Dustin and Carrie.  They need all of our love and support in their loss and our prayers for Brinleigh to stay strong.

Parental Love

Maeleigh Kristine Jenkins Returns Home

Dustin and Carrie were with Maeleigh till about 1:00 am.   After a nights sleep this morning they were informed Maeleighs lungs had again filled with fluid and they would have to insert another large tube to drain her lung.  Yesterday when they were informed of her potential brain damage when it was at a 4 they determined that they would wait till Monday for the next scan to make a decsion.  But if there were other complications that arose before that time they would let her go.  It was a very tough decision and they hoped Maeleigh would tell them in some way what she wanted.  Today she let them know it was her time to go and that her Mommy and Daddy would be spared and not have to make a potential difficult decision come Monday if there was no change in her brain scan.

Thank you Carrie and Dustin for allowing us to share Maileigh's final moments with you.  They were very difficult for all of us and especially tough for Carrie and Dustin to hold their little precious angel as she passed into the next life.  We were able to give Maileigh a name and a blessing before she passed from this life.  After the blessing she seemed to go faster as if this was one more thing she needed to have before she left this life to make it complete.

Maeleigh you have a piece of each of our hearts with you.  Thank you for 5 wonderful days with us.  We are at peace that you are now released from your struggles and pain.

We Love You!!!!

Hope and prayers

Difficult entry day. Maeleigh's brain scan came back today as a 4. This is on a 0-4 scale that rates potential brain damage due to blood on the brain. They have been giving her blood platelets so her blood would clot. It has not worked as they have hoped. Dustin and Carrie are still hanging on to the hope the damage is minimal but the reality is there is damage. Everything else is improving on Maeleigh which is very difficult. Dustin and Carrie are spending their quiet parent time with Maeleigh. Brinleigh is having a few challenges with her heart but nothing they can't address These little girls are still both fighting Dustin and Carrie are being strong together and there for each other. They have had some great experiences in spending lots of time with Maeleigh today.

From an Uncle's perspective.....

Our family has been greatly blessed with two very special little girls, with a fighting spirit we can all learn from. Needless to say, no one expected a phone call early Sunday morning saying that Carrie had her twins. Well the unexpected happened and Carrie and Dustin have met this challenge head on.

I realize a lot has been said already but I hope you will indulge my synopsis of the first 4 days of the twin's life.

Brinleigh...she is a "rockstar" and a steady fighter. She was born the larger of the two and has been solid. She has had her moments of scare when she forgets she is in the world, but she snaps out of it quickly and remembers where she is. She has been a great example to Maeleigh and is a fantastic big sister. She definitely loves her parents and the proof is when her heart rate climbs when both Carrie and Dustin are in the room and talking to her. Last night I was visiting the twins for the last time before returning home, and Dustin and Jake we saying goodnight to Brinleigh. The nurse caught my attention and pointed out the heart rate as it was moving from 165 to 174. She looked at me and said, "she sure loves her daddy".

Maeleigh...can I coin her as "The Miracle Twin"? The reality is both girls are miracles, but Maeleigh has overcome some big obstacles thus far, and has proven to us that she wants to be here. She is a calm baby, but she sure has her opinions, and she will let you know. Her fighting spirit is getting stronger and stronger and that will hopefully lead to more "on the mend" days. She is noticeable smaller than Brinleigh, but she doesn't know that and she doesn't care either. This is a total shot in the dark, but I think Maeleigh will be a "Momma's girl". Carrie put her finger in by Maeleigh on Monday and Maeleigh grabbed onto her finger and didn't want to let go, as if to say "stay with me Mom, don't leave."

Now for Carrie and Dustin, the terrific parents. I think we all know how much they have gone through to have these two precious souls. Amidst all the unexpected circumstances they are still there for each other. Dustin is a ROCK! Something I look up to, and he is always calm and cool in his reactions and emotions. He is a great companion for Carrie and a wonderful provider. Carrie is just meant to be a mother. She loves those baby girls so much and I saw that everytime she talked about them and visited them. I see her sleeping on the floor of the NICU soon, because she just wants to be with those girls. To sum it up, Carrie and Dustin compliment each other perfectly and that will make fantastic parents!

Are we hopeful for these two beautiful girls? Absolutely!!! Do we still have a long road to go? Yes

I have never really understood taking it one day at a time, but I do now. We pray for a good day tomorrow, and then tomorrow we pray for a good day on Friday. The twins both are strong-willed girls and I am sure will give their parents a run for their money. We love you Brinleigh and Maeleigh and thanks for letting me get to know you so quickly!

Day to Mend

We just had a short visit with Dustin and Carrie.  The girls are doing well today.  Yesterday's x-rays were good for both of them.  Brinleighs levels have stableized.  They removed the IV from Maeleigh's head.  They have her laying on her side a little to try to get her right lung to work a little harder and repair itself. Both of them are out of the lights today.  They have tried to keep them covered and in the dark today as a day to mend it seems.  Maeleigh is schedule for the ultrasound on her brain sometime today.  They send the results then to primary childrens to be read.  With them covered and dark visits have been short and minimal today.

Day 4 Brinleigh

Brinleigh is still doing well.  She has good color and is starting to get that pink look to her of a little baby.  Her 'chemical' levels I beleive the called it are a little out of balance which is a bit surprising to them it seems.  Her chest x-ray seemed ok but then they came back to do an x-ray to get more of her stomach area.  That is the photo of Carrie rolling her over on her stomach which she seemed to throughly enjoy.  It was the first time she had been rolled over.  Even though she seems to be the rockstar of the two at this point she still has little worries.  What you don't like when your visiting either of them is when the nurses seem to whisper softley and talk in code.  It gives you an uneasy feeling something isn't quite right but they aren't saying.  Brinleigh is just the opposite of Maeligh.  She loves her hands close to her face and chest and to be scruched up.  She is more quiet and content and not so much bothered when she is worked on but then she hasn't had the poking and such that Maeleigh has had.

Brinleigh was 1 lb 10 oz (almost.. as it says on her board) at birth. She was 1 lb 9 oz last night.

Day 4 Maeleigh

Her color is much better and she is improving.  It is truly amazing to see her change in 24 hours.  With that she is still no where near out of the woods.  They tried to give her a day of rest as much as possible since she has been worked on quite a bit in the effort to get her an IV.  They removed the tube that was draining her lung last night.  They have also tried to remove other 'things' attached to her in an effort to stabilze her and the need for them has been reduced with the umbilicle line in place.  They have her heavily sedated so she can rest.  When she isn't sedated she is quite a fisty little girl which she has definatly needed and will continue to need.  She makes a very cute scrutchy face when she is annoyed and she prefers to lay with her arms spread wide open. Her heart rate is still a bit elevated but stabalizing.  They are reducing the Nitric Oxide on her slowly.  Her x-rays were good thats why they took out the chest tube.  Today is another brain scan that they rate from a 1-4 which indicates blood on the brain.  Her first scan was a 2.  Lets hope today it's better.  The rating represents the 'potential' for brain damage from the bleeding. 1 and 2 you worry but 3 & 4 are serious.  She continues to soak her little diaper which again seems to be a good sign.

Lastly she was 1lb 7 oz when born and last night she weighed 1 lb 6 oz which is a good sign.  Let's pray for more good days ahead.

A mothers touch

Carrie got to assist the nurse when they were doing an x-ray. This was her first opportunity to touch Brinleigh. She rolled her over before the x-ray.

Grandma and Maeleigh

Grandma Roberts with Maeleigh

Maeleigh has a room with a view

Getting ready for an X-ray

Maeleigh has the windows

Update 7-12

After a eventful few days here is their current status from Josh, Carries Brother.

'The babies are good.  Brinleigh's potassium level has been good since midnight and she is all swaddled now and peaceful.  Maeleigh is looking good.  Her heart rate is still around 200 but they have messed with her a bit this morning.  Maeleighs lungs look good and they will remove the tube probably later today.  They also want to try and get her off the NO (nitric oxide sp?) today. They don't want to mess with her but they want to get her off some stuff so maybe later once she has rested.  Things look good right now.'

To help with history.
To quote the Dr. last night Brinleigh has been the rock star and done well considering.  Maeleigh has has some significant challenges.  Her first day she developed a hole in her lung.  That is why the tube in her lung to extract the air.  At birth they were able to use Brinleighs Abilicle cord as the method of giving her medicine and such.  That was not the case with Maeleigh.  They have had repeated IV's in Maeleigh that have not been able to remain.  Her little veins continue to collapse and not support them.  They tried a number of stents through her shoulder and leg to her heart but were not successful.  Just as things were looking gloom in rode a Dr. filling in for the regular Dr. that as he puts it the umbilicle lines are his specialty.  He tried and was successful in establishing that line for Maeleigh.  He said it was a significant challange but it worked.  Thank you our Dr in shinning armor.  What are the odds that a Dr just happens to show up that can give Maeleigh exactly what she needs at exatly the right moment?  That brings us almost up to date with things today.

All your thoughts and prayers in behalf of these darling girls is so much apprciated.

Carrie with Maeleighs hand Day 1

Maeleigh Day 1

1 lb 7 oz

Brinleigh Day 1

1 lb 10 oz 'almost'

Welcome

Welcome to the blog to follow these two special angels sent to the Jenkins Family.