Tuesday, December 28, 2010

We've Never Seen This Before?

So, how would it feel if the doctors around you say they have never seen this before?  Well, for Scott and I that is our reality with Emma’s condition.  Emma is a complex little puzzle and the doctors are working very diligently to try to put those pieces together to try to get Emma better.  Emma has seen several pulmonologists, cardiologists, intensivists, gastroenterologists, ear/nose/throat specialists, urologists, and nephrologists.  They have poured over her medical history and to be completely honest, are stumped by some of the ways she is responding.  They are not giving up on Emma and neither are we!  Emma has proved that she is a fighter, so we all battle on to try to determine the best plan for Emma. 

Emma is having nutrition problems.  This has been an area that we have struggled with from the beginning.  Emma drains fluid out of her chest cavity.  They have tried several methods to stop/slow down the drainage and have been relatively unsuccessful.  This drainage makes it hard to properly digest important nutrients.  They have just started Emma on a steroid regimen to see if it will help with some of her nutrient loss.  For those of you that know a little about steroids, you know that they are immunosuppressants.  Since this is the “sick time” of the year and this new medicine is known to lower immunity then we will be cutting down on visitors in Emma’s room.  We hope and pray that everyone will understand that this is in Emma’s best interest.  There might even be times when Scott and I can’t be back with Emma.  Emma should be officially listed on the transplant list this week.  Due to being on the vent and other heart meds, she should be listed as a 1A which is at the top of the list to get a heart; however, if she were to become infected then she would be temporarily bumped to a two which would prohibit her from getting a heart until she became uninfected.  So, as you can see, it is SUPER IMPORTANT that Emma stays well.  As hard as it will be to be so secluded, it is to get Emma better! 

Emma had a good day on Christmas and was a happy baby who enjoyed visiting with her company.  See recent photos below of Emma:

Emma's first Christmas!
Emma was visited by Santa!

Specific Prayer Requests:

1.     Pray that Emma can gain weight and nutrition
2.     Pray that Emma can come off the vent
3.     Pray that Emma can have good blood gases
4.     Pray that Emma can stay infection free
5.     Pray that the PERFECT heart will be generously given to Emma
6.     Pray that the Doctors can figure out the best plan for Emma
7.     Pray for the future donor family
8.     Pray for the doctors, nurses, and staff in charge of Emma’s care
9.     Pray for the other kiddos: Ella, Ella, Lyric, Blake, Justin, Haven, etc. who are fighting their own health battles
10. Pray that Scott and I can stay strong through this process

Thursday, December 23, 2010

The Journey Continues

It has been a while since I have updated the blog and for all those consistent followers, I apologize.  It has been busy not only around here but at work, and so now I have some free time to be able to update the blog and share what is currently happening in Sarah, Emma's, and my life.  So, as you may remember, we were going to start going through transplant evaluation.  Well, we have made it through everything now.  We had a lot of meetings with many new physicians and teams of people.  The transplant team checks everything to make sure that transplant is what is right for the person being listed.  The first consult/meeting that we had was with one of the main physicians and some of his team.  He basically just explained to us about what transplant entailed and what to kind of expect as the rest of our evaluation progressed.  We met with a psychologist, who I am guessing wanted to just see how we were doing through all of this and possibly assess how she thought we would do if transplant was the road that we would travel.  We met with child care services who asked us similar questions as the psychologist, but her services were more tailored towards Emma.  We met with neurology who did an assessment to see how Emma was progressing with normal developmental areas for her age.  He watched as she followed her purple elephant around in the dark, how she would follow Sarah and her voice around, and various other tests.  He said at the end that Emma passed with flying colors!!!  And as he was leaving, he waved bye at Emma, and (though probably involuntary) she raised her arm up and waved her hand back at him.  He said she was a "show-off!" Hehe!  :-)  She had a visit from pulmonology who took a look at her lungs.  To him, it looked like Emma was just weak and would need more time before she would successfully come off of the ventilator.  He said her lungs did not look to have a huge amount of lung damage which was really good news.  She also had a gastrointestinal tract test to see if her passage of fluid was obstructed or if anything was abnormal.  Everything from that test came back ok, which is good.  However, we still don't know why she is having trouble tolerating her feeds.  Possibly one of the medications she was on could have been contributing to that, as well as her heart not functioning quite like it should for her GI tract to work as well as it should.  They are still looking into this area.  So, today, they came in and said that they were going to go ahead and list Emma on the transplant list!!!!!!  As many of you probably know, that does not guarantee us a heart right away or anything, so we are going to be working on her main problem at hand right now, and that being the problem of nutrition.  Its very important for her to have good nutrition, not only for her health, but also for whatever path we go down, whether transplant or Glenn procedure.
Right now, Sarah is holding her and she is sleeping!  Such an amazing site to see!!!!  I love them both so much! :-)
So that is what we know right now.  We will keep you all updated as we know more.  We thank everyone for the kind cards and messages that we have received!  As always, I give all the thanks for Emma, the doctors and staff, and all of you, to God!  God is good, all the time!  And Sarah, Emma, and I truly hope all of you have a Merry Christmas!

Some specific prayer requests:
1)  Pray that the path that we are to go on all works out and that Emma continues to improve!
2)  Pray for Emma to get good nutrition and keep it!
3)  Pray for the doctors and staff here at Childrens.  They have many tough decisions ahead.  May God guide them in the way that will work best for Emma.
4)  Pray for Sarah and me and our families as we continue on this journey.

Sunday, December 19, 2010

My Not-So-Happy Baby

Just a Quick Update:

Well, Emma is constantly keeping us on our toes.  Many of you saw the video a posted on Facebook the other day of Emma smiling and very happy.  Well, yesterday my happy baby turned into a cranky baby.  Unfortunately the irritability is getting worse.  She has had several desat episodes (where her oxygen levels drop) and they have had to go up on her vent settings.  When I left Dallas on Friday to go to Oklahoma, Emma was getting to do pressure support trials on the vent (where the vent does not help her) and she was doing great, sating in the upper 80s and did not look in distress at all.  Today, they have upped all of her vent settings and she is slightly retracting when she breathes.  One of her blood gases this morning showed that her CO2 level was 97.  This is BAD!  They have had to give her several doses of sedation meds to get her calm.  We have not had to that in several weeks.  So, they are running every test possible on her to see what is wrong.  Her last x-ray showed more dilation in her stomach and intestines, so they have stopped her feeds for now.  She will be getting a chest/kub x-ray every 6 hours.  She will also be getting an abdominal and chest ultrasound.  They are culturing the secretions in her ET tube (vent), culturing her blood, running labs, and basically testing everything to try and figure out why she does not feel good and why they all of the sudden are having to go up on her vent settings to get the results they are wanting.  So, today my baby does not feel good and it breaks my heart to watch her in pain. 

We received word on Friday afternoon that we officially got insurance approval to proceed with transplant evaluation.  So, on Monday and Tuesday Scott and I will be in meetings all day to answer questions, fill out paper work, and be filled in on what this process entails.  We will be very busy.  We will update the blog on Wednesday to let you know what we find out. 

Specific Prayer Requests:

1.     Pray that Emma feels better soon!
2.     Pray that Emma will be able to come back to low vent settings.
3.     Pray that Emma can tolerate feeds and not have stomach issues.
4.     Pray that Emma will be a candidate for a transplant.
5.     Pray that Emma will receive a heart that is PERFECT for her.
6.     Pray for the family that will make the decision to donate.
7.     Pray that Emma has many happy days ahead.
8.     Pray for the doctors, nurses, and other staff in charge of her care.
9.     Pray that Scott and I will fully trust in God’s plan for Emma.

God is Good!  And, we will praise him in this storm!

Sarah (Mommy)

Tuesday, December 14, 2010

Update On Our Precious Little Princess

Family Picture Time!

Happy Baby in her Christmas Bow!
Well, it has been awhile since I have updated the blog and some things have happened since then.  Emma is doing good as of now.  She is happy most days of the week and loves many things including: her mirror, toys, and being held!  They continued to be concerned about a couple of things.  First, the are concerned with her lungs and coming off of the ventilator.  As you may remember, they think that her not being able to come off of the ventilator may be due to several factors including: her heart, her airway, her strength, etc.  So, they are trying many different approaches and have called in reinforcements to try and increase her chances of coming off of the vent.  They have called in the pulmonologists, which are the lung doctors, to take a look at her lungs.  What they are doing is giving her an inhaled medication called Pulmicort and seeing if this helps her lungs.  They are still doing lung conditioning and trying to cut down her secretions in her lungs.  They have been able to ween her down to very low settings, which is great and means that she is doing a lot of the work on her own.  The second concern is with her nutritional status.  Every time they go up on her feeds (i.e. her calories in her feeds) she doesn't tolerate the increase and starts having diarrhea.  As you can imagine, this is not a good thing since that means she is not only losing nutrition but also possibly losing meds since they are all given orally.  To try and figure out why this is the case, they have called in the gastroenterologists.  These are the physicians that look at the gastrointestinal tract to figure out if there is malabsorption of food, poor breakdown, etc.  They are still trying different ways to feed her to find out what she will tolerate best.

So what we know:
So what we know is that both of these concerns could be due to her heart.  And we are reminded about this almost daily.  This means that we are needing to get on the transplant list in case this is the cause of her problems.  However, we are having some trouble clearing it with our insurance company......  Hopefully it will clear very soon and we can continue down the road to getting put on the list.  They are not giving up on her heart she has now though since the cath of her heart looked pretty good.  So, we will keep trying to feed and grow her and see how she does.  If she doesn't progress like they would hope, then by that time hopefully we will be on the transplant list and be getting a new heart.

What to pray for:
1)  Pray for her to become stronger and get the nutrition she needs.
2)  Pray for her lungs.
3)  Pray for the doctors, nurses, respiratory therapists, etc. in charge of her care.
4)  Pray for Emma's progression to go in the right direction.
5)  Pray that everything will work out with this transplant, if it is the path that we are to go on.
6)  Pray for Sarah and me as we continue on this journey with Emma.

Somedays it is tough not knowing which direction Emma is going.  But, we have wonderful physicians and medical staff striving to get Emma well, no matter what direction that takes to get her there.  We are very thankful that Emma is doing well now though and is happy!  :-)

God is good!  All the time!  And all the time!  God is good!

Thank you for all the thoughts and prayers!

Daddy Scott

Gramma holding Emma for the first time!

Grampa holding Emma for the first time!

Tuesday, December 7, 2010

Plans Changed: Please Start Praying

Chilling in our bouncy seat for the first time! :)

Dear Family and Friends…….

It is amazing how much can change in just a few short hours.  We are constantly updated on Emma’s care plan and needs.  Today is no exception to that.  Today, during surgical rounds, we found out that perhaps, Emma’s heart/lungs are not performing exactly how they should.  Yesterday during the cath they found that the pressure in Emma’s ventricle when it relaxes is a 13.  Today, Dr. Forbess informed us that ideally that pressure would be a 6 or 7.  We also found out that Emma’s right lung did receive quite a bit of damage from the restricted atrial septum.  While this damage should not be unconquerable, it is hard to overcome when your heart is not quite functioning as it should.  While Emma’s heart is “fixed” like it should be, it is not relaxing as it should.  In a baby without lung issues, this would not be a huge problem, but with a baby like Emma, it can be.  So, what does this mean?  Well, basically this means that it is in Emma’s best interest at this point to be put on the heart transplant list.  This was somewhat shocking to us today.  We have known from the day we met Dr. Forbess that this was a possibility for us, but we really wanted to Emma to do well with the three-surgery process.  As we are reminded daily, what WE want is not always what happens.  The doctors are working hard to understand what will be best for Emma.  We are supposed to meet with the transplant team, cardiologists, and the cath lab doctors sometime this week to discuss this further.  Emma is stable and that is a good thing.  They will continue to monitor Emma and see what will be best for her, but at this point, all signs seem to point towards transplant.  Please keep us in your prayers as we take this next step.  Emma is such a fighter, but it is hard to know how to pray because getting Emma on a transplant list means that our potential gain is someone else’s loss.   Please keep the prayers coming. 

Mommy Sarah  

Monday, December 6, 2010

The Cath

The Cath went well.  Emma only went into A-Tach once and they were able to pull her out of it.  To give a little clarification, her heart looks good for this stage of her recovery. The right pulmonary veins are pumping more blood than the left but receiving less oxygen due (probably) to the drainage/wetness of her right side. Also, the left side had a little narrowing that they tried to fix with a balloon but it needed a stint, but Dr. Forbess wants to wait until the Glenn to fix it since it is really not causing any issues.  The drs. tell us that this was to be somewhat expected due to the restricted atrial septum in utero.  However, her heart is NOT in failure and now we just need Emma to gain weight, get stronger, and lungs to heal up.....the answer right now is TIME!  Thank you all for your prayers.  Keep praying, as this journey is not over yet.

To the CATH lab!

Emma will be going to the CATH lab around 1:00pm today to assess heart function. Please pray that this procedure goes well and that we will have some answers as to why Emma is not progressing as she should. Also, please pray she has no arrhythmias during the procedure.

Thursday, December 2, 2010

Still Trying to Figure Out Some Things

Recently when Emma was extubated, she failed very quickly and had to be reintubated.  This was very disappointing since the doctors and all of us thought she looked ready to come off.  Well today, they made an attempt to find out some more answers as to why she did not do well coming off the ventilator.  They took her down and performed a procedure to look at her airways and see if there is any swelling, obstructions, other problems, etc.  What they found out was that she had a little swelling but other than that nothing much really.  The OR people thought it was more than likely a lung related issue, not an airway issue.  So now, we are back trying to figure out what caused her to fail quickly.  We have yet to talk to the ICU doctors about what they think about these results, and what they think will be the best plan to proceed with.  This is disappointing to Sarah and me because we really don't know a whole lot more today after the procedure, as far as why she failed coming off the vent, than we did before the procedure.  Hopefully we will get some answers sooner than later.

Please pray for her lungs to heal if they are damaged and to improve so that she can come off the ventilator soon. 

Daddy Scott

Wednesday, December 1, 2010

Recent Happenings!

Recent Happenings:

Well, here is what is going on in Dallas.  As most of you already know, the doctors have told us that we will be in the hospital until the Glenn procedure (2nd surgery).  So, yesterday I went to Yukon and with the help of Mom, Jana, Stacey, Steve, Stephani, Patty, Amy, and Tony, we packed up our rent house.  They were a huge help and we got A LOT accomplished.  For those of you who offered to help…thank you as well.  This was my first time out of Dallas since September 11th.  It was hard being away from my little girl, but it was also good for me to get out of the hospital for a little while.  I even had the chance to visit with my “helpers”, sweet neighbor Brenda, and dear friends Kelli and Stephanie.  Oh, I cannot forget getting to see Skippy JohnJons!  She was very excited to see me. 

Emma has not had it easy these past few days.  They were able to get her heart arrhythmias under control, which is great.  They switched her back to a PO (by mouth) form yesterday and she seems to be tolerating well.  They have also switched her to a different formula called portagen.  (http://home.intekom.com/pharm/bm_squib/portagen.html)  which is a step up from the tolerex.  This formula actually has fat in it.  They are trying to get her up to 30kcals, but Emma keeps having diarrhea when the amount is increased above 24kcals.  Please be praying about this because she really needs optimal calories in order to gain the weight necessary to get stronger and bigger for estuation and the next surgery.  Also, diarrhea increases loss of oral medications, which we found to be very detrimental in Emma’s health. (e.g. A-Tach).   Also, they have had to go up on Emma’s vent settings since her extubation/a-tach episodes and we are unsure why this is.  Before extubation, Emma was on a rate of 4 (how many breaths per minute) and oxygen at 21% (room air).  Now Emma is on a rate of 20 and oxygen at 30%.  They are planning on taking Emma to the OR tomorrow around noon to do what is called a BRONC (http://www.webmd.com/lung/bronchoscopy-16978 ) This procedure will give them an idea about whether or not Emma has any airway issues that are contributing to her having problems coming off of the vent.  Please pray that this goes well and that we will have some answers as to how to help Emma come off the vent. 

So, to make a long story a little shorter, Emma’s heart function is doing very well.  Most definitely an answered prayer; however, there are problems that need to be fixed.  Emma NEEDS to come off the vent.  The longer she is on it, the more dependent she is on it.  We feel like we get really close to getting her off of it and then we take several steps backwards.  It is hard to watch her struggle with this and gag and cough on her tube.  Also, her feeds need to increase and be tolerated.  Emma is not too fond of touch and this breaks my heart.  We are trying to get to hold her more and do more with her, but she is 8 weeks old and has only been held about 5 times.  Imagine for a minute watching your baby cry, gag, struggle and touching her only irritates her more. 

I love my baby so much and want her to get better SO bad.  We need prayers.  This going “backwards” business is NO FUN!  It can be wearing on us.  Also, Scott starts working on Monday, so Emma and I will need to learn to do this without him on a daily basis and neither one of us is looking forward to that.  

God is Good!  He fearfully and wonderfully made Emma!  Although we cannot always understand his plan…..he has one!

Specific Prayer Requests:
Pray that Emma will tolerate higher calorie feeds and GAIN MORE WEIGHT!
Pray that Emma will be able  to come off the vent SOONER THAN LATER!
Pray that Emma will be more adaptable to touch and holding!
Pray that Emma’s oxygen saturations will increase on lower vent settings.
Pray that Emma will start having more “good” days instead of “no progress” days.
Pray that Emma’s heart will be free of arrhythmias.
Pray for Scott and I to stay strong in our faith and strength.
Pray the BRONC will go well tomorrow and we will get some answers.
Pray for the doctors, nurses, and other staff caring for Emma.

Pray for our friends Taylor, Ella, Ella, Emma, Lyric, Lane, Kaytee, Blake, Haven, and many others who our on a daily health journey.

Sarah (Emma’s Mommy)

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)