The Friday/Saturday Adventure

Sorry for the very late update.  I have been exhausted when I get home and the time at the hospital is starting to get to me a little bit because I'm so tired, but if Ashton is fighting so hard her momma WILL NOT complain!

Friday was suppose to be an uneventful day, but Miss Prissy had other plans.  She was doing well on her C-Pap settings, so Dr. Kahn decided to reduce her pressure setting on her machine.  SHE DID GREAT with her new settings.  She also was doing well with her temperature regulation and is still getting to wear clothes.

Ashton also got a visit from some very dear friends from our old hometown, Levelland, Friday.  They were in town for a wedding and were so sweet to stop by and see sweet pea.  They also brought cards and gifts from lots of friends back in Levelland.  We are so blessed to have so many people sending Ashton and our family love and prayers.  I know I say thank you every night, but it never seems like a big enough way to express my gratitude.  You guys are amazing.

Friday night the picc line finally came out and Ashton got to say goodbye (hopefully forever) to one more of her NICU accessories.  She didn't enjoy having the line taken out, but she did just fine after she settled down a bit.  She had a calm night and her oxygen level stayed stable around 25%.

Saturday morning was a little rough for me because I knew I was missing this handsome boy's first T-Ball game. 

Brady has been a trooper throughout this journey, but as his mommy I was sad to realize I was missing a "first" for the first time.  We had been a family of three for almost five years before Ashton's arrival 20 days ago and Brady has never had an activity without me there to take a picture, cheer him on, and just enjoy seeing my little man grow.  Lucky for me, Ashton decided she knew what mommy needed and was a trooper this morning.  So much so that Dr. Kahn decided to reduce her C-Pap pressure AGAIN!  She has been been at a pressure setting of four all day as is hanging in there.  I can tell that it is harder for her because she has had more episodes where she gets tired or really sleepy and forgets to breath, but she is a fighter and I pray that she will keep getting stronger and have less and less episodes. 

Specific prayer requests:

1.)  Ashton continues to get stronger in supporting her own breathing and has less episodes.
2.)  She continues to do well with her feedings and starts gaining weight.
3.)  Her little body stays free from infection.

Much love!
Brandi

Quick Update

Ashton has had a good day.  Her doctor was happy with her levels this morning, so he decided to turned her C-Pap pressure setting down to 5. She has tolerated the reduced pressure well and is actually getting less than that when she sleeps with her mouth open.  She also is doing very well regulating her own temperature and his still getting to wear clothes. I've got to run pick her up a few things, get them washed so she doesn't run out of clean things to wear tonight, and get back to the hospital to spend some more time with my sweet pea.  I'll try to do a full update of today's events later tonight.

Much Love!
Brandi

2.5 Days and Counting

Sorry for the late update, but today was a very busy day.  Ashton had a good night overall Wednesday. She had two episodes where she forgot to breath and her heart rate dropped, but she recovered from both of those on her own without stimulation from the nurses.  It isn't good that she is having these episodes, but it IS good that she recovered on her own.  Also, it isn't unexpected for her to have these episodes, we just want them to be fewer and fewer as she grows.

I had my follow-up OB appointment at 9:15 this morning and knew it was very possible that I would miss rounds today.  I got to the hospital super early to spend some early time with my girl and make sure I talked to as many of the nurses, nurse practitioners, dietitians, etc. on Ashton's team I saw before I had to leave.  I went to my appointment and made it back to Ashton around 10:30 (the doctor's office building is connected to the hospital via sky bridge and is only a five minute walk from the NICU) to find out that the doctor's were running later today and had not rounded yet.  I was ecstatic!  Something about getting to hear directly from the team what they think and want to do for the day is much easier than hearing it through a third party.  Don't get me wrong, the nurses here are AMAZING, but I prefer to be there when the doctor comes by.  The doctor didn't make any changes today.  She did well enough with her feedings that they are discontinuing her IV feedings.  Her IVs will run out tonight and they will remove her picc line tonight or in the morning.  He also told me that it will be slow going getting her off of the C-Pap.  She has to be able to get the pressure setting down to 4 and maintain her oxygen requirements below 25%.  She is very dependant on the C-Pap help right now, so we are looking at a minimum of a couple of weeks to get her to a nasal cannula.  That being said, Ashton has surprised us all more than once so the timeline may change depending on how she is doing.

After rounds I heated up my soup in the Ronald McDonald House that is on the same floor as the NICU and ate a quick lunch so that I could start holding sweet pea around 1:45.  While holding baby girl I got a VERY welcome visit from a good friend from back home in Midland.  We sat and talked while I held baby girl for over an hour.  She brought a bag of sweet gifts from friends back home which I will definitely use over our stay here in the NICU.  It felt so good to just sit and talk to someone that I've known more than 18 days!  I held Ashton until 6:00p.m. when she really needed her diaper changed and it was getting close to time for shift change. While I was holding Ashton she got the hiccups for the first time.  It was so cute, but boy did she get mad!  Her voice is definitely getting stronger because she cried loud enough for her nurse to hear. 

After shift change Ashton's night nurse did her assessment and got Ashton all settled in for the night.  She also said that Ashton is doing well enough to wear clothes!  Obviously we don't have any clothes that fit our 3 lb. baby girl, but I am sure her Nana will be purchasing some ASAP.

We are praying for a smooth night tonight and that she doesn't have any episodes.  We also continue to praise God for all of the things Ashton has accomplished!

Much Love!
Brandi

30 Hours

Sweet pea has been on C-Pap for right at 30 hours and SHE IS HOLDING HER OWN!!!  She has had a few episodes where she gets upset and her oxygen and heart rate levels drop, but she has managed to climb back up (with the nurse's help, of course.)  What does that all mean?  The short answer--Ashton has been taking breaths on her own for over a day now.  She still needs the pressure support of the c-pap and is on about 24% oxygen.  (Just for reference, room air that we all breath is 21% oxygen.)  During rounds this morning,  Dr. Kahn (who we LOVE and I will blog about more later) said she has lasted longer and done better on the c-pap than he ever expected her to.  Our little fighter continues to defy the odds and we KNOW who is in control of how she is doing on the C-Pap and every step of this journey.  There is no way we could take on this journey with Ashton without knowing that fact.  I appreciate  everyone who is sending encouragement and love our way.  Your reminders of how much we are loved and how many people are praying with us for our sweet girl is overwhelming!

If everything goes well tonight, tomorrow will be Ashton's last day of TPN (nutrition through the IV) and she will be eating 100% milk.  The only medication she will be on will be her heart medicine which she takes orally.  This is a HUGE deal because it means her picc line will be coming out tomorrow and she will only have the tube for feeding/oral medication and her C-Pap head gear--NO OTHER TUBES or LINES!   That seems crazy given the fact that 17 days ago she had eight pumps at her bedside and enough tubing to rap around her little body twenty times. 

I got to hold her again for a few hours this morning and heard her cry.  She has a very soft, little cry because she had the breathing tube for 16 days.  If she is anything like her brother, this will change.  Speaking of big brother--Brady is doing awesome back home with Daddy.  He played a great soccer game Saturday and has been enjoying all the attention from friends back home.  I think he loves his little sister mostly because he is getting to play with friends almost everyday!

It is shift change so I need to go without proofreading this post, so ignore the typos.  Prayers that Ashton stays strong and continues to amaze and do well on the C-Pap are so very appreciated.

Much love!
Brandi

I'll Praise You in this Storm

Wow, what a day!  After yesterday's rough roller coaster of ups and downs, imagine my surprise when I got to Ashton this morning to see that she was doing amazingly well.  Her night nurse told me she had a great night, but I wasn't prepared for how calm she was when I got to her.  Her doctor came by before rounds, looked at her vent. monitor and said, "We are going to make some changes and try to remove her tube today."  Imagine my SHOCK at this news.  I began praying immediately...not for her to be extubated, but for her to be peaceful and do whatever her little body would let her.  She proved she was ready to try to breath on her own and was extubated at 11:30a.m.  She was placed on a C-Pap machine and has been breathing on her own, with the machine's assistance, since that time.  We are keenly aware that her little body may not be able to sustain breathing on her own and she may have to be placed back on the ventilator, however we are choosing to have FAITH that she will do great.  She hasn't liked the C-Pap head gear or nasal tubes and has managed to remove them twice!  She gets very mad and I heard her cry for the first time today....and her momma cried with her.  She is a fighter and I am so in love with our precious daughter. 

I got to take a picture of her sweet face with only her small feeding/medication tube.

This is what the C-Pap gear looks like.

I'm sure there were other important events today, but to be honest I can't remember anything else about today.  I'm exhausted and going to bed early tonight.  Please continue to pray for her lung function and breathing without the vent.  We are choosing to praise Him in this Storm and hope you will praise Him with us.  We appreciate your prayers and words of encouragement so very much.  Without them the days and nights would be so much longer.

Much love.
Brandi


I'll Praise You in this Storm -- Casting Crowns

I was sure by now
God you would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as You mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

HUGE CHANGES-Prayers Appreciated

In a few minutes Ashton will be losing two of her accessories---her breathing tube and ventilator!  She will be transitioning to a C-Pap machine.  THIS IS A HUGE STEP and prayers are certainly appreciated and needed.  We have been warned that she may have trouble with this change and may need to be placed back on the ventilator.  A lot of babies her age have to go back to the ventilator on the first try however, we are trusting in God's plan for our little fighter and praying that she beats the odds yet again!  I'll update more later.

Thanks!
Brandi

Rough Day

Today has been a rough.  When I called in at 5:00a.m. and talked to Ashton's night nurse I was happy to hear that she had a wonderful night.  Her oxygen levels were good and her 4:00a.m. blood gas looked good.  However, when I got to her bedside at 7:00a.m. she was agitated and didn't look like she was resting comfortably.  I spent most of the morning watching her oxygen saturation and heart rate decrease, then slowly climb back up.  Three times this morning Ashton had to be taken off the ventilator and be "bagged" because of too much water in her tube.  Let me tell you, that is NOT a fun process to watch.  The monitors are going crazy and it just breaks my heart to know that she is irritated.  She cries, but you can't hear anything because of the tube helping her breath and the tube to deliver food to her stomach. You can see her sweet face all scrunched up, but you can't hear the cry that should go with it.  It absolutely broke my heart.

The doctors made rounds around 11:45a.m.  They made very few changes. Her liver function "is not great", but should come back to normal over time.  They also told me that she is progressing in regards to the ventilator, but VERY slowly.  I completely understand and agree that we want her off the ventilator as soon as possible so that she doesn't become dependant on it, but I choose to focus on the fact that she hasn't had ANY ventilator changes that went backwards since we changed machines.  To me, that is a positive even if the changes in the right direction have been little and slow to happen.  They didn't have an explanation as to why she was so agitated and her rates were dropping.  They did a chest x-ray to check the placement of the breathing tube--it was where it was suppose to be--, suctioned her tube and nose, changed her positions, but nothing seemed to be helping.  Finally, around 2:00p.m. they decided to let me hold her and try to calm her down.  I held her until 5:00p.m. and she did amazing.  Her numbers were good and she was finally calm.  They drew her blood gas at 4:00p.m. with me holding her in my arms.

Her blood gas was VERY good at 4:00p.m. so they went down on her ventilator settings again.  Unfortunately for Ashton, I had to put her back in her isolet around 5:00 so that the nurses could do their assessment.  She WAS NOT a happy camper.  Her levels dropped and she started moving her arms and legs and grabbing at her tubes/wires.  I had to leave for shift change and she was finally starting to calm down -- a little.  She is having a hard time comforting herself and obviously they will not let me hold her 24 hours a day.

PRAYER REQUESTS:

1.) Ashton has a peaceful night with no drops in her oxygen and heart rates.
2.) Ashton tolerates her vent. change well.
3.) We keep making progress and Ashton gets off the ventilator sooner rather than later.
4.) Her liver function improves.
5.) No more cardiac SVT.
6.) No intestinal issues.
7.) Peace for a very weary, worried, and tired momma.

Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you.  I will hold you up with my victorious right hand.  Isaiah 41:10 NLT

The Premmie’s Prayer

The Premmie’s Prayer

Dear God, as you look down upon us,
We know that you might have to squint.
We’re located here in the NICU:
It’s the nursery that we rent.

There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.

We have a lot in common;
All of us were in a hurry.
For many different reasons,
Our storks came a little early.

Some of us don’t know why,
We bursted out from our bubbles.
We entered into this world,
Never meaning to cause any troubles.

Mommy and Daddy are worried sick
About the odds that we must beat.
Please God, help them to realize,
That seeing us grow is a treat.

Breath by breath, we’ll learn to breathe.
Ounce by ounce we’ll tip the scale.
We’re like a boat in the ocean,
That knows not sink- only sail.

For we are living miracles,
Mommy and Daddy must simply believe,
That you have angels watching over us;
From the time we arrive, till the time we leave.

Author Unknown

Q and A

Many of you have texted, Facebooked, emailed, voicemailed questions that have gone unanswered since Ashton was born.  We decided that it would be impossible to answer all of the messages and to be honest sometimes it is too hard to restate the same answer to multiple people.  So, I thought I'd try to answer some of the questions Cody and I frequently get asked.

1.  How much did Ashton weigh when she was born?

Ashton weighed 3 pounds, 11 ounces at birth.  Unfortunately, at least a pound of that was excess fluid that her body had accumulated.

2.  How much does Ashton weigh now?

Ashton weighs approximately 3 pounds, 5 ounces as of tonight.  She has received IV fluids since birth that acted as "carrier" fluids for her medications.  It is also a fine balance of how much diuretic to give her so that her electrolytes do not get out of wack.

3.  Can I share your blog with ___________?

YES!  You absolutely can share Ashton's blog with anyone/everyone you know who is willing to pray for our sweet girl. 

4.  Are you checking your email?

No.  My blackberry is dead, I didn't bring the charger to Houston, and to be honest I don't even know where it is right now so I have no way to check my DOJ email.  Our yahoo and gmail accounts are at capacity and we unfortunately can not  answer all of them.

5.  Who is taking care of Brady?/Where is Cody?

Cody is taking care of Brady--with the assistance of tons of friends--back home in Midland.  We decided that we needed to try to keep Brady in his routine as much as possible during this time.  Also, we are trying to save as much of Cody's PTO as we can given that we don't know what the future holds for baby girl.

6.  What is Ashton's prognosis? What caused her condition?

Her prognosis is very uncertain and the doctors are uncertain what caused her condition.  Hydrops can be caused by many things--a genetic disorder, parvo virus, TORCH virus, CMV.  However, in over half of the Hydrops cases doctors never know what caused the Hydrops.  Ashton and I have been negative for all of these common conditions.  Ashton's doctors believe that the most likely explanation is that I contracted a virus at some point during the pregnancy which affected Ashton.  The virus caused her liver and heart to be in distress.  As a side effect of that distress her body was unable to rid itself of excess fluid. 

7.  Why did you go to Houston?  Why not Dallas/Waco/or anywhere else closer?

The option we were given on March 8th by the Maternal Fetal doctor in Midland was to go to Odessa on the 9th and meet with another Maternal Fetal doctor who would discuss with us the possibilities of doing further testing -- amniocenteses, etc. -- in hopes of learning why Ashton was developing hydrops.  However, delivery was not an option in their opinion and the tests they were offering were only to determine why this was happening to Ashton.  The Midland doctor told us that because her condition was 100% fatal, they would wait until her heart stopped and I would deliver a stillborn daughter.  The Midland doctor also believed that the hydrops was causing her heart to be large and that she "was unaware of any cardiac condition that would cause hydrops." Given this news we did some quick research trying to find the best Maternal Fetal doctor.  Dr. Anthony Johnson with the University of Texas ended up being who we  believed to be the best and he recently joined the UT-Memorial Herman staff in Houston.  After our meeting with Dr. Johnson we did not receive a magic answer or even good news.  Dr. Johnson was able to determine that Ashton's heart was most likely causing her hydrops.  He was very honest with us that Ashton was very sick and most likely would not survive, but he was willing to try.  Dr. Johnson was in Houston, so that is where we stayed.

8.  What hospital is Ashton in/What is her room number/Can she have visitors?

We are at Children's Memorial Herman Hospital in Houston, Texas.  Ashton is in Giraffe Pod A in the NICU.  Visitors are limited to parents, grandparents, and siblings over 3 years of age.  Visitors under 18 are not allowed.

9.  What can we bring you/what do you need?

We need your prayers for healing for Ashton and knowledge for her doctors 24/7.  I am doing well in Houston and staying at my brother's.  Growing up in the area, I know my way around and I'm hoping to get released to drive next week.  Cody and Brady are doing well in Midland.  I promise that if a specific need arises we will reach out and ask for help.

Well, I just found our they are not making any more vent. changes until 4:00a.m. so this mommy is going to try to get a few hours of sleep.  If you have any other specific questions feel free to leave a comment and I'll do my best to answer them.

Brandi

Saturday's Adventure in the NICU

Hey, all.

It is shift change, so I'm going to try to get a quick update posted while I'm waiting for the night nurses to get report.  Ashton had a good night and is having a good day.  We've gone down on her vent. settings twice and she appears to be handling the changes well! The doctors didn't make any other changes during rounds, so it has been a pretty laid back day.  (We are focused on getting her vent. settings down since everything else appears to be stable for the moment.)  Ashton has become a "touch me not"--which is the NICU term for a baby that does not like to be touched at all.  When the nurses do ANYTHING, she starts squirming and her levels start to drop.  As soon as they close her port holes, she bounces right back to where she was.  Basically, she doesn't want ANYONE in her space.  Speaking of her space--below is a picture of the bed she is in.

This is an OHMEDA Giraffe bed.  It is an amazing piece of equipment that monitors Ashton's temperature 24/7, can weigh her, monitor the humidity in the bed, and do so much more.  This bed has been a life saver, literally! 

Thatcher's grandmother gave Miss Prissy a beautiful blanket today.  I am in awe of this family's courage as they face this journey with sweet Thatcher.  My little brother is out of town this weekend, so my dad came over to Houston and has been playing chauffeur for me.  We ran a couple of errands at lunch which was good because it forced me to get out of the NICU for a little bit.  Hopefully tomorrow I can get a couple more things done so that next week goes smoothly. 

Ashton has a blood gas test at 8:30 tonight.  Depending on the results, they may make a another vent. change tonight.  Please pray that her blood gases stay good and that she handles any other vent. changes they make tonight well. 

Much Love!
Brandi

No Changes...and that is OKAY

Well, I didn't get to go to bed early, but Ashton appears to like her new ventilator.  Her blood gases have been good and they have made a couple of little changes to her settings.  When I left her just now they decided to let her stay at the same settings for the night which made this mommy feel a little better.  There is no one in this world that wants baby girl to go down on her vent. settings and get off of the ventilator completely more than her momma, but I also think giving her a night without changes may let her little body rest.  Keep the prayers coming that her vent. settings stay stable and we are able to start weaning her settings down again tomorrow.

Brandi

Oh, what a night (and day)!

Last night Ashton's blood gases where not very good.  They had to go back up on the vent. settings and her oxygen needs were high.  On top of they started to insert her picc line around 11:00 p.m.  I didn't realize that the process to insert a picc line takes about two hours!  They insert the line, take an x-ray, let the doctor review it, make changes, etc.  I'm happy to report that around 1:00a.m. this morning Ashton was the proud owner of a picc line in her left arm.  It doesn't seem to bother her as she keeps moving her arms all around.  However, this mommy didn't get much sleep because of the silly picc line!

At rounds this morning the doctors decided that Ashton needed a bigger intubation tube and a different type of ventilator because her oxygenation and blood gases where still not good.  In order to make these changes her "breathing tube" had to be removed and the newer, bigger one inserted.  This process is very scary because they are removing the one tube that is helping her little lungs.  I was allowed to stay in the room while they switched the tubes and ventilator.  Watching her numbers take a nose dive was so very, very hard.  I was praying none stop during the procedure and Ashton came through with flying colors.  The tube change went smoothly and she appears to be doing better on this ventilator.  We will have to wait and see what the blood gases show, but I'm marking the fact that the changing process went smoothly down as a huge praise!

The cardiologists came by today and basically said no changes everything looks okay.  Then one of the cardiologists looked at me and said, "Besides anyone you know who has been to Afghanistan or Iraq, your daughter has been through one of the worst battles and came out like a hero.  She is such a fighter."  I can't tell you how that made me feel.  Well, okay I guess I can try--it made me realize, yet again, what a journey our baby girl has already been on in her very short little life.  It also made me appreciate that our family has been covered by your prayers during this journey.

As for specific prayer requests we are focus primarily on getting her vent. settings down.  We would appreciate you covering Ashton with prayers for her little lungs and that she can learn to adapt to being weaned off the ventilator.  Obviously, we know this will occur in a time to be determine by our sweet girl, but we would like to see a more steady progression downward.

I am exhausted and life at the NICU bedside is starting to drain me.  I was standing in the shower last night "hearing" all the different beeps and buzzes and alarms in my head.  I desperately need a hair cut, to do laundry, and wash the dishes that are piling up in my brother's sink, but none of those things seem that important right this minute.  I'm missing Cody and Brady, but I'm so grateful to  have such amazing friends who are helping Cody keep Brady in his routine back home.  I know Brady doesn't understand completely what is going on because he keeps telling me to bring Ashton and the nurses home.  At the same time, he is LOVING his daddy time, so I'm not so sure he really wants me home! 

I'll try to give a night time update later, but no promises on that one.  If Miss Prissy cooperates and is doing well, this mommy may go to sleep early tonight.

Brandi

 

Thursday

I GOT TO HOLD ASHTON FROM 3:45 to 6:30 THIS AFTERNOON.  They call it "Kangaroo Care" and encourage all parents who have babies that are stable enough to hold their child skin-to-skin as much as possible.  It was too risky to hold her when she had her umbilical arterial line in, but as soon as that came out today Ashton was ready for some kangaroo cuddling.  She did great and I loved every minute of it.

As for developments today---there are not too many.  Our biggest achievement is that our belly circumference went down almost 2 cm and she lost 8 ounces.  For most premature babies losing wait is a bad thing.  For Ashton, it means she is losing some of the excess fluid she has had since birth.  Ashton weighed 3lbs, 11 ounces at birth.  Unfortunately, about a pound of that was fluid that she does not need and that her body could not get rid of.  She currently weighs 3 pounds, 3 ounces.  We have to be careful how much fluid she loses and how fast she loses it because we do not want to cause other issues (low sodium, low potassium, etc.) which could effect her heart function.

She had a couple of vent. changes today and she handled them well!  They are putting her picc line in tonight which will be the new way to deliver her medicines.  Please pray that all goes well and that she doesn't have any complications from this procedure. 

I'm sure I'm forgetting somethings from today, but I think life in the NICU is catching up with me.  I am exhausted and falling asleep as I type this update.  I want to thank you all again for your prayers for our daughter.  As the doctor told me today, everything can change with Ashton in a matter of minutes.  When he said that, the first thought that entered my mind was to make sure all the folks praying for our baby girl stay updated so they can continue to pray without ceasing.  As hard as the process is and has been I know where the comfort I have felt has come from. 

Brandi

Thatcher

Please pray for baby Thatcher and his parents.  Thatcher self-extubated himself ten minutes before shift change when his parents had to leave his bedside.  Please pray for peace for Thatcher's parents as they face many tough days and nights.  I do not know all of the ins and outs of the obstacles Thatcher is facing, but I can see the weary look in his mom and dad's eyes.

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7

Mommy Time

IF everything goes according to plan (I'll detail the plan below) I should get to hold Ashton sometime this afternoon!!!!!!!!!!  You all can't image how excited I am to get to hold my "eleven day old" sweet girl. Now, should something change and I may not be able to hold her today and that is OKAY because I know that everything will happen in His time.

Okay, today's plan--not too many changes.  The picc line will be inserted today, one of her umbilical lines will be taken out today, they will discontinue her blood pressure medicine today, and they will make vent. decreases today if her gases look good.  They are tweaking a few other things, but nothing major today.  We are praying that all of that goes well today and she adapts to these changes.

I haven't posted any photos of baby girl on the blog yet, mostly because I haven't had time to download the photos from my phone and we didn't think to bring the camera from Midland.  Also, I didn't know how folks would react to seeing her with the tubes, lines, and really swollen.  However, this is entirely too cute not to share.  The nurse turned on the light over Ashton's bed this morning and she immediately brought her hands to her face.  Obviously, she is going to be like her daddy and not like to be woken up from her sweet dreams.

Same prayer requests as earlier.  1.) Smooth picc line insertion.  2.) Adjustments to the vent. are accepted and handled well.

Much Love!
Brandi

Wednesday Night

Hey all!
Ashton had a good night!  Before I left last night, Ashton's night nurses let me give her a bath--with their help of course.  Baths for a 30 week gestation baby pretty much means you sponge off the areas that don't have tubes, wires, etc.  It also means that mommy got to touch her and rub her for 20 minutes straight!  Ashton is such a little lady because she LOVED her bath.  She was so relaxed and her oxygen levels, heart rates, etc. stayed great.  Look out Brady---I foresee a ton of fights over the bathroom in your future.  They didn't make any changes to her vent. overnight, but her blood gases are MUCH better.  I'm sure they will talk about making changes at rounds this morning so that we can try to start moving towards getting rid of the vent.  Hopefully, Miss Prissy handles the changes they make today better than she did the last couple of days.  She spit up last night, but wouldn't you if you were being feed milk by a tube while laying on your back?  She ate her next feeding, so I'm thinking the spit up may not be a big deal.  The picc line should be going in today.  I know I have said that for the last three days, but that is life in the NICU.  Please pray that the picc line insertion goes well.  I know it will be painful--IV's aren't fun if you are an adult--and I'm praying for a smooth insertion!  Until rounds, I won't know what else we have in store for the day.  I'll update more in a bit....

B.

Wednesday Afternoon

Afternoon Update - Wednesday, March 21st

Praises: We are off both IV heart medications; Ashton had her first eye exam; Ashton's follow-up Echocardiogram after being off the first heart medication showed NO decrease in heart function; Ashton is tolerating her 2cc milk feedings well and digesting the milk well.

Overall, today has been a good day. Vent. wise she hasn't made any progress and slid back just a little bit in her settings. Her lungs are "very wet" (lots of fluid) so it makes it pretty hard for her to adapt to the vent. changes. Her blood gases have been on the bad side, so they have given her a couple of medications to help with her respiration.

The neonatal opthamologist came by and did a full eye exam. I can't imagine what she could see in a 30 week gestation old babies eyes, but that is why she is the expert. She said Ashton's corneas, retinas, and overall eye function looks normal! She did believe that her main eye nerves were on the small side, but there is no way to tell if that means any decreased eye function. If Ashton is not tracking well at 6 months we will come back to Houston for another appointment with her, but otherwise she doesn't see any need to see her again. This is the first doctor that has talked to me about an appointment outside of the hospital or about Ashton at 6 months old. I started crying like a baby and scared the opthamologist into thinking I didn't understand she was giving me good news! It is hard going from doctors telling you your baby has "zero chance of survival" to "call me at six months if you don't think she is tracking well." I know that we still face many obstacles on this journey and Ashton's condition could change in an instant, but I CHOOSE to have faith on this journey.

We didn't do the picc line today because the doctor wanted to stop the other IV heart medicine and make as sure as we can be that we were not going to need the picc line with two ports. Since she has tolerated the stopping of the IV heart medicines well today, I am pretty certain the picc line will be inserted tomorrow. However, as I've learned NOTHING in the NICU is certain!

The follow-up echocardiogram was good.  The cardiologist talked to me about what/how her heart may progress.  The neonatologist talked to me about the possibility of heart surgery to fix the extra blood vessel her heart has if it does not close on its own.  That is at least "two weeks" down the road which is a life time, literally, to Ashton.  I'm not even thinking about that process yet!

Our biggest prayer requests right now would be that we start improving on our vent. settings and that our heart function stays stable now that we are off the IV heart medicines.  I know everyone's lives are so busy.  We can't begin to tell you how much your prayers and messages have meant to us.  We have seen God doing amazing things with our sweet angel and we are trusting in his plan for our family.   Trust in the LORD with all your heart and lean not on your own understanding. Proverbs 3:5 NIV

Much love,
Brandi

Wednesday

Days and nights, nights and days, everything is starting to run together.  Miss prissy had an OKAY night.  GOOD news first:  Ashton is off the Milrinone (one of her heart medicines)!!! Obviously this doesn' mean her heart is "fixed", but it does mean that she tolerated taking that medicine away which had to be given via IV.  This is super important because we want her to be on oral heart medications.  She also tolerated her first milk feeding last night!   I know 2ccs of milk doesn't sound like a big deal, but being a mommy who is able to provide something--even 2ccs of mommy milk-- to her little girl is big deal to this mommy. She couldn't maintain her vent. settings last night, so we had to go back up on her pressures.  Her 8:00a.m.blood gases didn't look too good either.  However, I am not looking at this as a step back because I'm BELIEVING that GOD's plan for Ashton.  I'm BELIEVING in Ashton and her fighting spirit.  I'm BELIEVING in the wisdom GOD is providing Ashton's team of doctors, nurses, respiratory therapists, social workers, and every other person that comes and check on our sweet girl many times a day.  So, maybe we pushed her a little too hard yesterday, but she didn't crash, didn't crater, she held her own.  She is fighting again this morning and I'm praying we see a turn around in her respiratory ability soon and her heart rate/function stays stable.

This morning's specific prayer requests:

1.) Improvement in her respiratory function so that we don't have to change the vent. settings more in the wrong direction.
2.) That we are able to stop the Amiodarone (the second IV heart medication) today.
3.) That we can insert a single picc line without any complications.
4.) Peace for a worried mommy.

I'll post again soon since Ashton's nurses let me bring my laptop to her bedside today!

Much love.
Brandi

First Diaper Change

I NEVER thought I'd be so happy to change a poopy diaper!  Ashton's day nurses (she had two today-one veteran who was training a newbie) were great.  They did everything they could to let me help with Ashton.  I know changing a diaper doesn't sound like a pleasant experience, but when you've only gotten to hold your newborn's hand during the first nine days I promise you--it is a HUGE deal. 

On to today's events... Ashton did so well yesterday that the Neonatologist decided to be more aggressive with her.  Maybe we were a little too aggressive because we took a ton of steps forward only to take a few steps back.  The doctors made two vent. changes. (With each change they are reducing the amount of work the machine does which forces Ashton to take on a little bit more of the work herself.) The first change Ashton handled OKAY, not like yesterday where she flew through changes.  When they decided to make another change, my mommy instinct kicked in.  I was worried she wasn't ready for the change, but I realized two things--1.) I'm not a neonatologist and 2.) I wasn't trusting that God was in control of this and every change.  So when her blood gas lab work came back and showed that she was not handling the change well, I was at peace with the fact that he had to take a step back to her previous vent. settings. Even with the change back, she still wasn't handling the change very well.  They decided to give her a diuretic and are waiting until midnight to decide if she is doing better or if she needs to take another step backwards. 

Now, on to the good news...as of midnight tonight Ashton will be off one of her heart medicines.  They reduced her heart medicine twice today and she handled the reductions without any change in her heart rate or blood pressure.  If she doesn't have any issues when they stop the medicine completely at midnight, they are going to feed her 2cc of milk! 

Tomorrow's plan includes: 1.) Stopping her second heart medicine; 2.) Possibly inserting the picc line.  They held off putting it in today hoping that by tomorrow she is off her heart medicines.  This makes a big difference in the type of line they have to put in;  3.) Continue reducing her vent.pressures.''  Obviously, depending on her night tonight this could ALL change!

Specific Prayer Requests:
1.) That Ashton has a good night and can maintain her current vent. settings.
2.) That the discontinuation of Ashton's heart medicines does not cause any problems with her heart rate/function.
3.) That Ashton tolerates the milk feedings.

I'm so tired I can't keep my eyes open.  I'll try to update more tomorrow.  Ignore the lack of proofreading, etc. I think the NICU days/nights are draining my mental abilities.

Thatcher Caleb

http://www.thepaulfamilyjourney.blogspot.com

Will you guys please included baby Thatcher Caleb in your prayers for God's healing of his little body and for peace and comfort for his parents, Eric and Whitney?  The NICU is divided into pods where 2 to 6 babies are closely monitored by their nurses.  Each pod has an A and B side.  Thatcher Caleb is in NICU Giraffe Pod B which basically means he his Ashton's next pod neighbor.  Cody and I had the opportunity to meet both sets of Thatcher's grandparents the day after I delivered Ashton.  They have been in constant prayer for their sweet grandson while loving on their son and daughter during Thatcher's NICU stay.  They have also offered prayers for sweet Ashton and even feed Cody a chocolate chip cookie or two.  When they knew Cody was having to leave on Sunday Whitney's dad pulled Cody aside and told him to make sure I knew that he was available if I needed anything during Ashton's NICU stay.  I know it made Cody feel a little better at least knowing someone at the hospital was available if I needed help.  Anyway, check out their family blog for specific prayer requests.  I KNOW there are people around the world praying for him, but, as we all know, there can never be too many prayers going up for one of GOD's littlest soliders.

Much love.
Brandi

8 Days Old

***I'll finish catching up the timeline post soon, but figured I better post "real time" information in case I don't have time to finish the previous post today.***

MONDAY, MARCH 19th

Updated 6:45p.m.

Ashton has had an overall good day.  She did require another round of "blood products", but that is more of a precautionary measure at this point so I'm not taking it as a bad thing for today.  As I posted below, Ashton had a round of vent. changes and heart medicine reduction around 10:30 this morning and she did well.  So well, that she had a second round of vent changes around 1:30 AND SHE DID GREAT.  She has been resting peacefully and calm most of the afternoon.  They didn't start the picc line today, so we will most likely face that tomorrow.  Shift change is from 6:30-7:00 every morning and evening in the NICU.  During this time everyone, including parents, have to leave so the nurses and doctors can transfer the patients to the night staff.  As much as I hate leaving her, it forces me to get out her "pod".  I am so amazed at the wonderful day God provided for our sweet angel today and I'm trying to be reassured and comforted.  Knowing that the life at 30 weeks gestation/8 days old in the NICU is a roller coaster makes me cautious about getting too excited. 

Philippians 4:6-7
Don't worry about anything; instead, pray about everything; tell God your needs, and don't forget to thank Him for His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ. 

Specific Prayer Requests:
1. That Ashton continues tolerates the reduction in her heart medicines.
2. That her echocardiogram shows improvement in her heart function.
3. That the insertion of her picc line goes smoothly.

Today our sweet angel is 8 days old.  I remember when Brady was a week old--I was taking pictures and celebrating our first couple of days home as a family of three (well, four counting Chloe').  With Ashton we are celebrating hours not days as a family of four (okay, five), ventilator changes not hours slept between feedings, and good blood gas results not days without gas pains.  We are choosing to celebrate ALL of these things.  Ashton has been with us 8 days longer than the doctors in Midland said she would and I try to remember this every time we hit a bump in the road.

Ashton had a good night last night.  Her oxygen rate stayed stable and her assessments went well.  When I got to the hospital at 7:00a.m. this morning, the battery of tests had already started.  Ashton had a "pediagram" (x-ray of her tummy and chest), an echocardiogram, and a blood gas all before 9:00a.m.  Around 10:00 the team of doctors and nurses made their rounds and saw Ashton.  The neonatologist and cardiologist were happy with her blood gas and was ready to make changes to her ventilator.  They also said we have to start a picc line to deliver her medications because her umbilical line can only be used a maximum of 14 days and he doesn't like using them more than 10.  All in all around 10:30 they decreased her ventilator pressure, lowered the dosage amount of one of her heart medicines, and discontinued one of the saturation measurements AND SHE DID GREAT with these changes.  So much so, that at noon they were talking about making further adjustments to her ventilator.  Well, lunch time is over and I need to get back to Ashton.  Thanks again for all of the prayers and support you guys are sending our way--they mean more to our family than we could ever express.


Brandi
  

How Did We Get Here?

THURSDAY, MARCH 8th

I hadn't been feeling well, so I went to my OB to for a blood pressure/hydration check at 10:30.  What should have been a routine appointment turned into being told our daughter didn't look "normal" on the ultrasound and that I needed to see a Maternal Fetal Doctor that afternoon.  I called Cody and he met me at my OB and took me to the Maternal Fetal doctor in Midland.  After another ultrasound, the Maternal Fetal Doctor diagnosed Ashton as having "hydrops" and told us that she had no chance of survival.  The Maternal Fetal doctor explained that "hydrops" is a collection of fluid in two or more body cavities and that Ashton had a large amount of fluid in her belly and in her head.  There are many causes for "hydrops" however this condition often occurs for unexplained/unknown reasons.  The doctor in Midland explained that Ashton's heart would eventually stop because of all the fluid in her belly and that I would deliver her after her heart stopped.  Although we were given the option to meet with another Maternal Fetal doctor in Odessa the next day, Cody and I opted for a second opinion in Houston at the University of Texas Maternal Fetal Medicine Center.  An appointment was set up for us the next afternoon and we started making plans to travel to Houston.  Our neighbor picked Brady up from daycare while Cody and I made arrangements for Brady to stay with Cody's parents in Levelland.  We couldn't get a flight out of Midland because of Spring Break, so we started driving and spent the night in San Antonio.

FRIDAY, MARCH 9th

We woke up early and finished driving to Houston. We met with Dr. Anthony Johnson at the University of Texas Maternal Fetal Medicine Center and had over an hour and half long ultrasound.  Dr. Johnson agreed that Ashton had "hydrops" however, he believed that her heart was actually the major cause of her condition.  Dr. Johnson told us that the prognosis was very grim and that Ashton was very, very sick.  He admitted me to Children's Memorial Herman Hospital that afternoon and told us that we may deliver as early as that evening unless they could get my blood pressure/swelling under control.  Next, was a whirlwind of doctors, nurses, tests, blood draws, tears, and prayers.  My blood pressure came down and they started me on steroid injections and magnesium to help Ashton during delivery.  We made it through the night with out delivering.

SATURDAY, MARCH 10th

After monitoring Ashton and me throughout the night, the doctors decided we were stable enough not to deliver immediately.  I was placed on strict bed rest, given a second steroid injection, and we hoped to keep from delivering Ashton for another 24 hours.

SUNDAY, MARCH 11th

Throughout the night, I noticed Ashton wasn't moving/kicking as much as she had been.  After monitoring her heart beat/movements, the whirlwind started again.  This time delivery was the only option.  I was wheeled into the operating room, given an epidural, and told to "stay calm".  A short time later they brought Cody in and they started the C-Section.  Unfortunately, the epidural didn't work 100% and before they delivered Ashton I was put completely to sleep. I "woke up" in recovery asking the one question no mother ever wants to utter, "Is she alive?"  Cody told me she was fighting hard and that the doctors had taken her to the NICU.  After a short time in recovery, I was transferred to my room to begin the recovery process from having an emergency C-Section.  (Although not a physically pleasant experience in the slightest, I refuse to complain given what my sweet baby is going through right now.)  Around 9:30p.m. I was allowed to go to the NICU for a brief visit with Ashton which consisted of me crying in a wheelchair looking at a very tiny, sick little girl.  Cody took me back to my room and did his best to take care of me while going to see Ashton as much as possible.

MONDAY, MARCH 12th

The doctors all agreed that Ashton's lungs were tiny, her heart was large, she had lots of edema (fluid), that she was extremely critical, and that no one was sure why she was facing all of these challenges.  Ventilator settings were changed, IVs and central lines were started, and Cody and I were told that this was a minute by minute process.  I visited Ashton as often as I could, but it never seemed like enough.

TUESDAY, MARCH 13th - WEDNESDAY, MARCH 14th

As we went to visit Ashton we sat down and spoke to the Neonatologist coordinating Ashton's treatment plan.  She explained that Ashton's heart wasn't pumping well and that they had started her on two different heart medications aimed at increasing her heart function.  We were told that we needed to see improvement in the next 24-48 hours.  Obviously, this was a hard conversation to have, but Cody and I called out once again to all of our friends and family to pray specifically for these medicines to help Ashton's heart pump better.  We spent the next two days hanging on every word the doctors said and praying for her heart to start pumping better.  The highlight of this stressful "wait and see" period occurred Wednesday evening when we went to the NICU to check on Ashton.  The nurses let me pick Ashton up and hold her in her isolet while they changed her bedding.  After I returned to my room Brady had arrived from Midland and gave me a huge hug.  It was overwhelming to be able to hold my sweet angel for those few minutes and to see my big boy.  I cried most of the night thinking about finally getting to touch Ashton and how much we loved both her and her big brother.
THURSDAY, MARCH 15th
"You are going to like me today" were the first words out of the neonatologist's mouth when we saw her after the morning evaluation of Ashton.  The echocardiograms looked better and her heart was pumping better.  We were told the plan for the next few days was to wean her off the Nitrogen Oxide and the heart medicines as her body was starting to be more and more self-sufficient.  Obviously, this was a huge praise and Cody and I were ecstatic at the news.  However, my mommy emotions went on a roller coaster as I was discharged from the hospital and forced to face the fact that I was leaving without my daughter.

FRIDAY, MARCH 16th - SATURDAY, MARCH 17th

There wasn't much activity on Friday.  We basically just sat around and watched as she hung out.  The started reducing IV heart medicines.

SUNDAY, MARCH 18th

Ashton's blood gases had been good, so they decided to start making vent. changes.  Ashton DID NOT like the changes in the vent./reduction in heart medicines.  She became extremely agitated and inconsolable.  The doctor ended up increasing her vent. settings and her heart meds and she finally calmed down a couple of hours later.  It was SO hard to not be able to console my baby and not know what was wrong.  On top of that, I had to put Cody and Brady on a plane back to Midland that morning so I didn't have Cody here with me.  I realized how hard it was going to be not having him here to help get through the "bad days". 


Brandi