Friday, November 26, 2010

Diarrhea = No Fun

To make a long story kind of short, Emma has had fairly consistent diarrhea for the past couple of weeks.  We were all unsure of the source, and to be honest, are still unsure.  However, after her failed extubation attempt the other day, Emma's heart started to experience some arrhythmias called PACs.  Now you or I can experience PACs from time to time and never know it, but Emma is hooked to a monitor so we know when anything and everything happens.  The doctors thought that the PACs were due to her stressful day/becoming acidotic and they were only happening every once in a awhile, so they were not concerned.  This morning around five Emma had a run of what appeared to be a-tach or atrial tachycardia.  A-tach are runs of fast heart rate.  Emma had several runs of these this morning.  The only thing they can attribute this to is the fact that the medicine she is on to control these is not being absorbed due to the diarrhea.  They contacted the electrophysiologist who wanted her to be switched to the IV form of the medication until her diarrhea is controlled.  Please pray her heart goes back into rhythm soon.  This is very scary for us.

Mommy Sarah

Wednesday, November 24, 2010

Oh the Joys of Extubation :-(

Well for those of you that have not heard, Emma was extubated this morning.  This means that they attempted to take the breathing tube out and see how she would do.  Well, sadly, she did not do well.  She only stayed off the vent a little while before it was decided to have to reintubate (put the breathing tube) back in.  Everything was pointing towards her being able to come off of the ventilator, but it is not her time to.  Please keep her in your prayers.  Pray that she will be able to strengthen her muscles used for breathing, that her lungs will function well, that we can get her back to a place quickly to try again, and that the next time she is extubated, she will do amazing!  Also, continue to pray for her heart as this was hard on it today.  Pray for Sarah and I as well.  It is so tough because we want her to be off the ventilator so so so bad!  Thank you all for the support.  May God bless each and every one of you!

In Him,
Daddy Scott

Tuesday, November 23, 2010

We need some Beano! :)

Emma has had several good days.  We are actually working hard to get her off of the vent this week.  They did pressure support trials yesterday and today.  She did well on the trials yesterday, and if she does well today, they will extubate tomorrow morning.  Emma has been A LOT more awake these last few days and that can cause problems.  Emma is very aware of the tube down her throat and gags on it frequently.  Gagging leads to throw up, which leads to a subsequent drop in heart rate and sats for a brief moment?  Needless to say, we are very ready for the tube to come out so she cannot be so sensitive to movement. 

Also, Emma has kidney stones.  There are several theories behind why she has developed these stones.  One of the theories is that due to the amount of lasix, a diuretic, they had to use, stones formed.  Other theories have more to do with her actual kidney functioning. Please pray that these stones do not move or cause her any problems.   

As Emma’s doctor so eloquently put it today, Emma needs to either burp or fart…lol.  Emma has a lot of gas build up in her intestines that NEEDS to come out.  If it does not come out and she is still as irritable then the vent can not come out tomorrow even if she is ready! 

Specific Prayer Requests:

We ask that you all remember our precious little friends in prayer: Katie, Taylor, Ella, Lyric, and Haven.  They are all on a heart journey of their own. Remember their parents as well as they support their precious little ones.

Some specific prayer requests:
1)  Pray that these pressure support trials will go well and that Emma will be able to come off of the vent.
2)  Pray that her kidneys continue to function well.
3)  Pray for her to continue to be in a good mood and not become easily irritated.
4)  Pray for Scott and I to have continued peace and strength for the road ahead.
5)  Pray for the nurses and doctors and all the other health care professionals that take care of Emma!  May they be blessed because of their efforts!
6) Pray that Emma can pass gas!

Thanks again to everyone that continues to support us and Emma with thoughts and prayers!  You do not how amazing that truly is to us!!!

God is good, all the time!

Mommy Sarah 

Saturday, November 20, 2010

We're Still Here :-)

So sorry that we haven't updated the blog in awhile.  I am having to go back and forth from Texas to Oklahoma for my final rotation in pharmacy school and haven't had time to get on and update like I usually do.  Also, that means that when I am gone, Sarah has less help here and therefore less time to update.  So, needless to say, we apologize to all of you that have been checking for an update!

Emma is doing good.  We are on track to try and start pressure support trials on the ventilator to see if we can come off of the ventilator (for good!) this week sometime.  They did a recent echocardiogram of her heart and, as one doctors put it, "it couldn't look any better than that."  God is good!  Other than those two things, the issue we have been having, as of late, is an increasing BUN.  This stands for Blood Urea Nitrogen.  It can rise for a number of reasons such as: dehydration, bleeding, and excessive protein.  The doctors are still trying to isolate what is causing this steady increase.  So we will see after the initial tests come back as to what may be causing this problem.

Emma has been smiling at Sarah and me occasionally.  I think that it is a legitimate smile when Sarah smiles at her, but it may just be gas when she looks at me....  The jury is still out! ;-)  She has been a little more irritated today but that is probably because we had to hold one of her sedation medications yesterday, which can cause you to go into a semi-withdrawl period.  She is better tonight though now that the medication is back on board.

We ask that you all remember our precious little friends in prayer: Katie, Taylor, Ella, Lyric, and Haven.  They are all on a heart journey of their own. Remember their parents as well as they support their precious little ones.

Some specific prayer requests:
1)  Pray that these pressure support trials will go well and that Emma will be able to come off of the vent.
2)  Pray that this situation with the BUN will be fixed.
3)  Pray for her to continue to be in a good mood and not become easily irritated.
4)  Pray for Sarah and I to have continued peace and strength for the road ahead.
5)  Pray for the nurses and doctors and all the other health care professionals that take care of Emma!  May they be blessed because of their efforts!

Thanks again to everyone that continues to support us and Emma with thoughts and prayers!  You do not how amazing that truly is to us!!!

To God be the glory!  God is good, all the time!

In Him,
Daddy Scott

Saturday, November 13, 2010

The Dreaded Ventilator

So, as many of you follow our blog, you know the horror stories of Emma and her bouts with being extubated and then reintubated.  Well, tonight as I type this, I am not going to share a horror story but rather an update about her current condition, which involves the ventilator.  Right now Emma's heart and nutrition and about everything else are going good, or as good as would be expected.  But her current struggle now has been with sedation and the dreaded ventilator.  As you may recall, we thought Emma would be extubated at the beginning of this week.  Well, we had several set-backs which involved her sedation.  When switching her from IV pain/sedation meds to by mouth pain/sedation meds, she went into a semi-withdrawl period which caused the doctors to up her pain/sedation by mouth medications.  Well these medications are very long acting and so when they did this, she got a little to sedated.  Sedated enough that she was not breathing over the ventilator, which was only giving her 10 breaths a minute.  This caused her to not be getting the oxygen she needed, as well as not exchanging CO2 and oxygen in her lungs like she needed to.  When this happened, they had to increase her ventilator settings by quite a bit to be able to sustain her through this period of over-sedation and what is called respiratory depression.  Over the last couple days, the doctors have been weening her down on these medications, but the effects from the weening will not be seen for days.  Thus, Emma is still quite sedated and not breathing much over the ventilator.  So a week that looked promising for extubation turned into a week of chasing after pain/sedation meds and trying to get them at the appropriate level.  But, each day we are seeing a little bit of change as the drugs start to be eliminated and she starts waking up a little bit more.  So yes, we are still on the ventilator and don't look to be coming off of the ventilator any time soon.  I guess you could look at it as a set-back, or I guess you look at is as another part of this journey we are on.  Other than this, Emma is doing well.  She is going to be taken out of her Giraffe Omnibed ("grow-box") tomorrow and put in a crib.  This will be neat as we will be able to decorate and make her crib a fun environment for her.  We will also be able to touch, sing, talk, take pictures, etc. of her a lot more, which is great!  Some more good news, they tell Sarah she will be able to hold her again on her birthday which is tomorrow!!!!!!  She is super excited!  So, there is an update on our sweet little child.  As always, we are so thankful for all of the thoughts, kind words, encouragement, and prayers that all of you give us and Emma each and every day!  God bless you all!
I also want everyone to be praying for Emma's sweet little friend Ella.  Amy and Jon posted on their blog that Ella was having some problems with oxygen saturation and possibly her shunt.  Please keep this family in your prayers as they go through this scary time! 

Some specific prayer requests:
1)  Pray for Emma to become less sedated and be able to breath like she needs to to maintain appropriate sats and blood gases.
2)  Pray for her heart to continue to function great!
3)  Pray for the doctors, nurses, respiratory therapists, etc.  that take care of Miss Emma.  God bless them and their efforts!
4)  Pray for Emma to tolerate being out of her "grow-box" and to keep growing more and more each day.  We thank God that she is up to 7 lbs and 3 oz!!!!!!!!!!!!!!!!! :-)
5)  Pray for Sarah and I.  That we will continue to have the strength and courage that only comes from God!

As always, God is good, all the time.  And all the time, God is good!

Thank you all again for remembering us in prayer and for all of your thoughts and encouraging words.  It truly means so much to us, you have no idea!  God bless all of you!

Daddy Scott

Thursday, November 11, 2010

Please Pray: Emma has a double infection!

Well, it looks like Emma's respiratory issues are coming from a double infection of some sort. We will not know what the infections are until tomorrow. All we know is that one is gram+ and one is gram- They have started her on two antibiotics. Please pray these meds will knock out the infections so she will feel better soon. She is in pain and irritable again today! 

Wednesday, November 10, 2010

Slow and Steady

Well, in this journey we are on with Miss Emma, we have our ups, downs, and leveled out times.  We are currently riding in the level area.  We knew that we might have to be in Dallas for six months, but we really did not think that we would be in the hospital that long.  However, it is looking more and more like we will be in the hospital for at least a few more months if not until the Glenn.

 In utero, Emma had a restricted atrial septum, which messed up her blood flow.  This blood flow problem caused damage to Emma’s pulmonary lymphatic system.  To add insult to injury, during the Norwood procedure, Emma’s lymphatic system was accidently nicked.  Now, understand, that we knew she could have some lung damage and that during any surgery other “things” could get accidently damaged.  I mean, we are talking about working on something the size of a strawberry.  What happens when the lymphatic system gets damaged is that fluid leaks into the chest cavity.  Also, it prohibits fat from being processed so it leaks into the chest cavity as well.  So, Emma is on a “fat-free” formula given to her through her feeding tube, and receives lipids (fats) directly into her veins.  Today, that put her back up to 30kcals and 3 on her lipids, so she is at optimal calories and fat intake right now, which is good.  Apparently, it takes the lymphatic system a few months to repair itself and that only really happens when the baby is receiving good nutrition.  So, Emma is now getting good nutrition, which means we must now sit back and wait for the lymphatic system to heal.  As long as the lymphatic system is leaking, it drains fluid into her chest cavity, which affects her lung function.  As you can see, it is a cycle---one that can be highly frustrating at times.   

However, we have a lot to be thankful for.  Emma’s heart is functioning well and her scar is fading fast.  Emma is proving to us that she is a fighter and that she is treating this journey like a marathon, slow and steady.  She has begun receiving occupational therapy, physical therapy, and massage therapy.  She is tolerating these therapies well, and I am even learning moves to do with her to help strengthen her little muscles.  We are very excited that Emma is tolerating her feeds well and is obviously digesting her food well…lol…we change many poopy diapers. 

So, Scott, Emma, and I will be in Dallas for a while.  How long will we be in ICU?  That is hard to say, but I don’t expect us to be out of ICU by Thanksgiving.  At times, this is disappointing, but we have to remember that Emma does better at a slow pace.  God is in control and has our best interest at heart.  And, ultimately, Scott and I want Emma to get better however long that takes.  We appreciate the doctors and other medical staff for their continue care over Emma, and the continued prayers, support, and kind words from all of you.  There are frustrating times, happy times, exhausting times, funny times, loving times, etc.  Emma is our little princess and brings a love into my life that I did not know existed.  We look forward to the day when we can introduce her to everyone, but until then, we “share” her with you via the blog.  Please keep praying, it would be so nice to be extubated within the next two weeks .

God is good!  All the time!  God is Good! 

Specific Prayer Requests:
Pray that Emma will continue to breathe over the vent.
 Pray that the fluid in, on , and around her lungs will continue to decrease and go away.
Pray that Emma’s heart stays arrhythmia free.
Pray that the doctors can find a good pain/sedation balance with new medications.
Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.
Pray that Emma’s sats, neer, labs, etc. stay good.
Pray that Scott and I will have strength and patience for this journey.      

P.S.  There are days lately that are stable and uneventful (which is good), so if we don’t update the blog please know things are ok. 

Mommy (Sarah)

Sunday, November 7, 2010


It is so hard to not be able to pick up my little one and calm her when she “cries.”  It breaks my heart to see her coming down off of the pain medications and having side effects that are uncomfortable to her.  While all of the things being done for Emma are moving her in the right direction, it is still hard to sit on the couch or stand by her box and watch, helpless, while my baby girl suffers.

 Yesterday, they pulled Emma off her IV pain and sedation meds and switched to a less powerful pain med and anxiety med by mouth (or in Emma’s case, by feeding tube).  At first, Emma was ok.  Then, Emma started showing signs of irritability and pain.  We could tell that she could feel the tube in mouth and the one that goes to her stomach.  She would gag on the tube, especially when moved for an xray, bath, respiratory therapy, etc.  Around 4:30pm yesterday after she had been bathed and then lifted for an xray, she gagged and vomited a nasty black/brown substance.  They tested it and it came back positive for blood.  They said it was very little blood, so they kept feeding her and put her on an acid controller medicine.  Emma did really well until around 2:00am when she vomited again.  This time, the vomit was clear, so we were able to talk the doctor into letting her stay on the feeds.  Well, around 4:00am, after xray, Emma vomited for the third time, this time with a little brown substance mixed in with the clear, so they stopped feeding her.  After looking at the current xray, they determined that the feeding tube had moved from ND (in duodenum) to NG (in stomach) and was looped around almost in a knot.  They believe that this plus the lack of proper sedation/pain control is causing her to vomit.  So, they moved her feeding tube back to ND and upped her pain/anxiety drugs a little.  I am still sitting by her bed, needing to calm her down a lot, but it will be that way until they can balance these meds. 

All in all, this is part of the process, but it is never fun to watch your little one go through all of this.  It is slightly ironic that the problems keeping us in ICU are not really heart related (which is good); however, she needs to come off of the vent and stay on full feeds.  It is really hard to make big or even medium steps forward while being on the vent.  

God is Good!  All the time!  God is Good!  He “fearfully and wonderfully made” Miss Emma and she is a blessing to us each and every day.  Friday night into Saturday morning, 3 families in the CICU lost their little ones.  Some of these little ones very rarely had family with them during this journey.  We have been so blessed to be able to be here with Emma throughout this process.  We may not be able to hold her, but we sing, talk, pray, bathe, change, kiss, love, and touch her often during the day.  We want her to know how special she is to us and how much we love her.  Emma is so very special to us and to many of you who read this blog.  She has taught me to love deeper, pray harder, be kinder to others, and trust more fully in God.  I pray that God gives Scott and I the opportunity to show her HIS LOVE and what “living” for Christ really means.  Thank you again for your continued prayers and support. 

Specific Prayer Requests:

Pray that Emma will not be in a lot of pain.
Pray that the fluid in, on , and around her lungs will continue to decrease and go away.
Pray that Emma’s heart stays arrythmia free.
Pray that the doctors can find a good pain/sedation balance with new medications.
Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.
Pray that Emma’s sats, neer, labs, etc. stay good.
Pray that Scott and I will have strength and patience for this journey.

Sarah (Emma’s Mommy)

Friday, November 5, 2010

Emma's One Month Update

Well, Emma celebrated her one-month birthday yesterday.  Where are we in this journey?  Well, we are moving at Emma’s pace---slow and steady.  This week has been a good week for Miss Emma.  She has had two pigtail (chest tubes) put in, two IVs put in, one broviac IV access put in, started feeds (slowly at first, now up to full feeds and working up to full calories---YAY), her art line taken out, one pigtail taken out (this morning), and a whole lot of rest and relaxation.  Last week, into weekend, Emma required a lot of pain and sedation medications to do the smallest things (bathe, change a diaper, etc.)  The more this week has gone on, the less pain meds/sedation Emma needs to get through it.  For example, today they took stitches out of two drainage holes, took out a pigtail, did dressing changes, did respiratory therapy, and an x-ray----all with only one bolus of fentanyl.  Also, Emma is growing in her grow box.  She now weighs 6lbs 6 ozs!  YAY!   The nurses and doctors have been great with Emma’s new “pace.”  They understand that Emma needs things to go slow, so they try not to do too much at once.  Since Emma is doing better, Scott and I are able to get more sleep. 

So, how long will we be in ICU or even in the hospital?  All of that depends on how Emma progresses.  We are in NO rush, as Emma seems to do better when she takes baby steps.  We have been told to prepare ourselves for a long hospital stay.  Emma has to be off the vent and on full feeds before we would even move to the 8th floor.  Emma is being weaned off of the vent slowly.  She is at 25% oxygen at a rate of 10.  This is very good.  More than likely, next week, they will try to do sprint trials to see when Emma can be pulled off the vent. 

All in all, this month has been the roller coaster ride we were told it would be.  We have had some very scary moments.  However, God is good!  All the time!  God is good!  We give him all of the glory and adoration for the AMAZING things he is doing in Emma’s life.   We thank all of you for being such caring and loving individuals who continue to lift Emma and us up in prayer. 

Below is a poem from Emma’s Nana Jana!  Jana is very gifted at poetry and has written many beautiful poems.  This one is extra special however because it is for her first grandbaby Emma.  Emma will cherish this poem forever.


I cried, "God, Emma's heart is not quite full,
I'll give her some of mine!"

"No, grandmother," the Father said,
"I just need lots more time."

And so I waited, on and on,
to see what He would do;

And I have to tell you, sometimes then,
My own heart broke in two.

Through pumps and tubes, IV's and lines,
I searched for my grandchild,

'Til one day, when I saw her face,
My own heart beat and smiled;

For on her face I saw a look
I'd never seen before,

Her bright eyes seemed to say to me,
"I can handle more."

And so she did, and so she does,
And still she battles on;

As her parents pray and read,
And even sing her songs,

The days turn into weeks, a month,
I pray, "It's been too long!"

But God calmly says to me,
"You really must be strong.

"I told them once, long long ago,
That a little child would lead,

"See, your grandchild in this crib,
Gives all the faith you need."

So now I look into her face,
Through lines, IV's, and things,

And realize that the noise I hear,
Is my heart as it sings.

For God is good all the time,
And all the time He's good.

And His light shining through her eyes
Reminds me that I should

Rejoice in all the folks who pray
For our sweet Princess now,

And thank the Father up above
That Emma taught them how!

Quoting from:
          Isaiah 11:6 -- "...and a little child shall lead them."

(For Emma on her one month BD from Nana Jana)
(November 4, 2010)

Specific Prayer Requests:

Pray that Emma continues to tolerate feeds and gains weight.
Pray that Emma’s heart will continue to function properly and will be without arrhythmias.
Pray that Emma’s lungs function well and will get stronger so she can come off of the vent.
Pray that Emma will not be easily agitated.
Pray for the doctors, nurses, and therapists that take care of Emma.
Pray for the other CICU babies.
Pray for Scott and I to be a light to others.

Mommy (Sarah)

Wednesday, November 3, 2010

Update on Our Sweet Little Princess

Can I say that God is good!  He truly is and we are seeing daily how He is working in Emma's life.  Last night and yesterday were very smooth.  The only problem we had last night was the excessive beeps of the alarm going off for Emma's arterial line.  This is a line in her wrist that tells them an accurate blood pressure reading.  It also allows them to draw the blood needed to send for labs.  Well, her arterial line was reading a low blood pressure during a couple hours of the night.  So they gave her some albumin to restore fluid loss in her blood...  They ended up giving her two doses of albumin and some calcium, but her blood pressure still read a little low.  Come to find out, it was just a problem with the arterial line itself.  She may have been  low on volume in her blood, but the main problem was the arterial line reading incorrectly.  This morning, they tried to fix the issue by redressing the arterial line.  It is still a little problematic, but seems to be working better.  Today has been a semi-eventful day.  She got another "pigtail" chest tube.  This one is on the other side of her chest from the one they put in the other day.  They placed this chest tube in that location because of some fluid that had started accumulating.  She has already drained over 100cc's of fluid out of this new chest tube.  Who could imagine so much fluid coming out of such a little body!  The placement of the tube went great.  They were done in roughly 20-30 minutes.  Also, Emma has been very well behaved today.  Last night and today she has required less sedative/pain meds to remain comfortable.  They even turned one of them off last night because they thought it was lowering her blood pressure, and she did fine with it off.  What a blessing to see our little princess doing better!  We know that each day, each minute, is different from the one before, and so we cherish these times when we can see improvement!  Other than these couple of events, Emma is doing well.  She is getting more nutrition than she was yesterday.  They are watching her stomach because it has gotten a little bit bigger as they have increased her feeds.  Lord willing, she will be able to continue getting more food.  We gotta pack some oz's and lbs on this sweet little girl!  All in all, she is doing good.  Each day presents more great accomplishments and the possibility for set-backs.  We are enjoying these accomplishments/improvements that she has been making over the past couple of days.

Some specific prayer requests:
1)  Pray that her lungs will continue to clear and function well.
2)  Pray for her heart to continue to function great!
3)  Pray for her to be arrhythmia free!
4)  Pray for her nutritional status.  That she will be able to process and tolerate all the feeds that they are giving to her.
5)  Pray for these tubes they have inserted to get all the fluid out that needs to be removed, and for her to stop accumulating fluid.
6)  Pray for the doctors, nurses, resp. therapists, nurse practitioners, etc. that have a hand in Emma's care.  Pray that God will guide them in their efforts to restore her to good health!
7)  Pray for her lymphatic system to heal quickly.
8)  Continue to pray for Sarah and I to have strength and peace for the road ahead!

God is good!  All the time!  All the time!  God is good!

Daddy Scott

Miss Kim, Emma's nurse practitioner, placed this bow on her after they got done putting in her new "pigtail."

Sleepy little princess. :-)

Monday, November 1, 2010

Everyday is a New Day

Each day I am reminded how everyday is a new day.  Some days are great and some days are not so much.  Some days are great initially and then turn out being just okay days.  Yesterday was one of those.  Emma did fantastic in the morning into night but then she got mad and things changed.  To bring everyone up to where we are, on Sunday it was decided that Emma had a lot of fluid in her chest.  They had tried using medications called diuretics to drain this excess fluid but were unsuccessful.  So, they decided to put what they call a "pig tail" in which is a chest drain.  The doctors thought she would have to have two, but when they placed just one in, they were able to drain 90cc's of fluid initially and she drained throughout the day 75cc's more.  That is a lot of fluid in her chest and now her x-ray looks amazingly better.  Let's just say she was a different baby after this took place.  She was happy again and didn't appear to get as upset as she had been getting the past couple of days.  This was a nice gift to have on my birthday as I was able to touch her, kiss her, sing to her, and talk with her without any problems!  I loved every second of it!  Last night, however, when they decided to bathe, do respiratory therapy, change out leads, pulse ox, diaper, etc. on her it was a little too much stimulation.  She went into off and on atrial flutter.  It lasted for about 1 hour and was not fun to watch her go through.  After they checked her electrolytes and gave her some magnesium and potassium, her heart rhythm evened back out.  They think though that it was a little too much stimulation.  Stimulation causes her body to release a substance that they think may cause these arrhythmias to occur.  We asked them about it today and they said that it was okay as long as these periods of atrial flutter were not continuous...  Still we voiced our concern about needing to make sure we get this under control since this is the longest period she has had atrial flutter in a while. 
Today, she is in line to get her femoral line replaced with a broviac line.  Her femoral line that they put in a little while back has started to close off and quit functioning as well.  This means she needs a more permanent line that is functional for them to infuse her medications through.  So, they are going to take her, as of right now, in just a little while at 10am to put this line in.  Please keep her in your prayers as she will go to the operating room for this procedure. 
We are praying that today will be a smooth day and that she will be more relaxed. 

Some specific prayer requests:
1)  Pray for this procedure she is having today to be a success with no complications.
2)  Pray for her to not put out any extra fluid in her chest.
3)  Pray for her lungs to continue to function like they should and continue to improve.
4)  Pray for her heart to continue to function properly as it is now.
5)  Pray for these arrhythmias she is having that they subside.
6)  Pray for the doctors, nurses, and the rest of the medical staff that take care of Emma each day.  Pray that God will guide their hands to provide her with the best care possible.
7)  Pray for Sarah and I to have strength through all of this journey.

God is good! 

-Daddy Scott