Friday, October 29, 2010

A Little Sunshine after a Stormy Night

video

We have to wear these suits, masks, and gloves for a little while!
Emma had a little bit of a hard night last night.  She got another mucus plug in her vent tube.  This caused her heart rate and O2 sats to drop.  Thankfully, the RT that was on "knows" Emma, so she quickly bagged and suctioned Emma until the mucus plug came loose.  It was very scary, but she pulled through.  She is having a much calmer day today, but they are still trying to figure some things out.  They are pretty sure she has some sort of infection still, but do not know where it is coming from.  So, until they get some more results back, Scott and I look a little bit like this:  


Specific Prayer Requests:

Pray that Emma's heart functions properly.
Pray that the doctors will determine what is making her sick.
Pray that Emma is able to gain weight and strength.
Pray that Emma will respond positively to the medicines they are giving her.
Pray that Emma will be able to be weaned off of the vent.
Pray that Emma will be able to be fed soon.
Pray for the other families in the CICU!
Pray that Scott and I will have the strength necessary to take it a day at a time!


Sarah (Emma's Mommy)

Thursday, October 28, 2010

The Long Road of Recovery

I guess there comes a point when you start to realize as parents that this road of recovery is not what we expected.  They said that it would be a roller coaster of a journey.  And those who said it were right.  Emma has amazing days, days where you feel so great that she will be out of here in no time.  And then she has days where it looks like we may be here till the Glen procedure.  And its times like those that your morale starts to fade.  Sarah and I are so ready as parents to be parents that it is so hard day in and day out to see our child like this.  We just want to pick her up, hold her, kiss her, hug her, and tell her everything is going to be okay.  At this point in time, we can not do that.  It's hard.  I don't think there is any amount of preparation that can prepare you for the constant grind and emotional stress that it puts on you as a parent watching your child go through more in their 24 days of life than I will every go through or have gone through in mine.  It's simply hard.  In saying all of that, I know that we have an amazing God that is watching over Emma, who never feels worn out, and who is always helping her.  He is who we lean on for strength.  I don't know how we could make it through this journey without leaning on Him!  He gives Emma strength and when we lean on him, He gives us our strength.

Emma is having one of those days where she is not really doing leaps and bounds better, but she is not doing leaps and bounds worse.  The doctors constantly remind us that this is normal.  (Another constant reminder that sometimes what we want for us and Emma, is not how life goes!)  They say that every hypoplastic child has ups and down days and that we should prepare knowing that that is the case.  But they also constantly remind us that given her severe condition, we are doing great!  I think the hardest thing is seeing the end result.  As parent's I think its easy to get caught up in the day by day little stuff, that we get the end result clouded.  So, every time I think how much I want Emma to be at this point, I step back and think of what the doctors tell us and it gives me peace to know that they feel she is doing good.  And then of course, I pray.

They have stopped her feeds again.  They think that they want to watch her stomach and digestive system closely to make sure that it is functioning like it should.  They have also added another antibiotic to her regimen of medications.  They are still concerned that she may be having some sort of infection and so they want to cover everything they can.  They want to start weening her and starting little trials of breathing to get her ready to be off the ventilator, but they stated today that they will not pull her off till they notice a good amount of weight gain.  So, we will see how she does with gaining weight.  They are trying some new regimens for her nutrition to try to maximize the amount of calories and fats she is getting.

All in all, she is doing good.  Just a long road of recovery.

Some specific prayer requests:
1)  Pray for her nutritional status.  Pray that she starts gaining weight and that she can tolerate her oral feeds better.
2)  Pray for her to be infection free and stay that way.
3)  Pray for all of her labs, sats, and other vitals to be great and where they need to be.
4)  Pray for her to start steadily recovering and not take steps backwards.
5)  Pray for her to be peaceful and rest, so that her body can gain the weight that she needs as well as not have to work too hard.
6)  Pray for the doctors and all the medical staff that are making decisions, that they will be guided by God's hands and that they will help her get to where she needs to be.
7)  Pray for Sarah and I as we are indeed in the long journey with Emma.  Pray that we will have strength and peace for the roads ahead.  That strength and peace that can only come from God!

God is good, all the time.  And all the time, God is good.

Daddy Scott

Wednesday, October 27, 2010

Not off the Vent Yet

As we have been told from the beginning, Emma will do this in her time and in her way.  This was further proven today when they did a trial to see if she was ready to come off of the vent.  Emma did great for about and hour and a half and then she got tired.  When she got tired, she started breathing hard and her left lower lung collapsed, so the flipped the vent back on.   What does this mean?  Well, the good thing is that they did not extubate Emma.  They decided to see if she could do it on her own, and clearly found out that she is not quite ready.  However, during this process, they noticed an air leak around the vent.  They are going to need to change this tube out so that it doesn't leak.  This tube change will either happen tonight or tomorrow.  


Specific Prayer Requests:


Please pray that Emma's lungs will get stronger.
Pray that Emma gains weight and stamina.
Pray that the tube change will be successful and uneventful.
Pray that the tube change will not be stressful on Emma or her heart.
Pray that Emma's infection continues to improve.




Psalm 94:19 
In the multitude of my anxieties within me,Your comforts delight my soul.





We are putting this in God's loving, caring, and comforting hand.  Thank you again for your love, support, and prayers.




Sarah (Emma's Mommy)

Tuesday, October 26, 2010

Oh the JOY!

 We send out a big THANK YOU to Jennifer from Sugar Photography.  Jennifer gave up her precious time to come to Children's Hospital to take pictures of the first time I got to hold Emma.  She took some AMAZING pictures that truly capture the JOY I was feeling in those moments.  Scott and I will cherish these photos forever.  These photos capture a moment in time when my heart was made complete.  Holding my precious little one was a dream come true.  God has blessed us with this little girl.  He has worked so hard in Emma's life and we are forever grateful to Him for this blessing.  As the poem reads, 

"Everyday I will strive to remember...

You chose me for her and no other
And I will embrace that beautiful day...
When I became a "heart mother".
~Stephanie Husted







Check out Jennifer's work at: www.sugar-photography.com

and
                                               www.sugar-photography.com/blog

We truly appreciate the prayers and support.  Emma has had a few good days in a row.  Please pray that the doctors will have the wisdom and knowledge to make the decisions necessary to continue Emma on this good path.  Also, pray that Emma will be ready for these changes and continue to have good days!


Sarah (Emma's Mommy)

Asking for Prayers for Potential Extubation Tomorrow

Ok everyone, they are thinking they might take Emma's vent tube out tomorrow.  For those of you that have been following her blog for awhile, know that this has not gone well in the past.  Please pray that this, the third time, works well and Emma will not have to be reintubated.  Pray that Emma does not struggle with breathing on her own!  Pray that Emma's lungs stay inflated.  Pray that the extubation does not trigger any atrial flutter.

Update on Miss Emma

Yesterday was a good day!  Sarah and I got to hold our precious little princess for a while and then she went back into her display case or grow box, whatever you want to call it! Hehe!  She has now found what they call "the doghouse."  This is a plastic cover on one of her peripheral iv lines on her hand.  She likes to lick and suck on it.  Funny little girl, won't take a pacifier, but loves her "doghouse!"  :-)

She had a good night last night.  She was bright eyed and beautiful for a long time before she finally went to sleep!  It was AMAZING to see her like that since she hasn't been that way in days!  We switched to a new Giraffe bed (aka "Grow Box") last night as well.  The other one did not have a cord for taking her weight.  So they moved in this other Giraffe bed and went through the crazy process of switching beds.  Always nerve-racking!  But they got her moved and guess what!  The cord that just wasn't there, was hanging down on the side of the other Giraffe bed...........................  Oh well, they were pretty positive that it didn't work.  So now she has a much newer, less smellier bed.  ;-)

So this morning we were awoken to some more bright eyed moments with our sweet little daughter!  The doctors last night decided again that she was losing so much fluid out of her chest tube because of breast milk.  They had thought this a couple days ago but thought they would give her another chance on breast milk.  So they switched her to a formula again last night around 10 pm.  This morning she is losing much less out of her chest tube and so they are thinking about pulling out her last remaining chest tube today or in the morning.  She is up to full feeds on this formula which is great!!!  That means no more TPNs as long as she stays on full feeds!  That truthfully means less IVs, which is always good!

All in all, another good day yesterday!  God is good!!!!!

Specific prayer requests:
1)  Pray that she keeps having less and less of her a. flutter.  She rarely has little runs of it now, but pray she will be a. flutter free!
2)  Pray that her heart continues to function well. 
3)  Pray for her lymphatic system to heal quickly so she can get back on breast milk.
4)  Pray for her lungs.  That they will remain up and working properly.
5)  Pray for her growth.  Pray that she continues to gain a consistent amount of weight!
6)  Pray for the doctors, nurses, and all the staff taking care of Emma.
7)  Pray for Sarah and me to continue to have strength and peace for the road ahead.

God is good, all the time!  And all the time, God is good!  He is in control!


Daddy Scott

These are the eyes we got to see this morning! :-)
Yesterday's bow and bright eyes!

After bath and bed exchange-- Crazy hair!

Monday, October 25, 2010

A Picture is Worth a Thousand Words



Professional pictures coming soon from Jennifer from Sugar Photography.  These precious memories will forever be some of the best moments in our lives.  Emma did great with the holding.  The only thing that elevated was her blood pressure, so Scott did not get to hold her as long. Thank you God for giving us this precious little girl that is "fearfully and wonderfully made." 

Sunday, October 24, 2010

To Get You Caught Up....


Ok, I know that many of you are probably very curious about the happenings of the last few days.  Emma has a way of keeping the doctors, nurses, and staff on their toes.  On Friday, they decided that they wanted to put in a PICC line for a more long-term access to Emma’s veins.  Emma has had intercardiac lines in for 19 days and they really want to take them out, but need another point of access before they pull them.  They took Emma down to the room where they put in the PICC line around 3:00pm on Friday.  This is an event in and of itself.  They have to take all of Emma’s monitors and medications with them, so it takes about an hour just to get her ready to transport.  Anyways, when they put in the PICC line, it triggered Emma’s arrhythmia and her heart rate shot up into the 200s.  They pulled the PICC line out and as they were giving her medication to try to slow her heart rate, she pulled herself out of it.  So, needless to say, it was an eventful day.

Well, on Saturday, Emma had a few more short runs of her arrhythmia.  She was always able to pull herself out of them, but it is still scary when they happen.  Yesterday, the doctors decided to test to see if her intercardiac lines were truly working.  Although they have done two “bubble” tests on them, they still felt like something wasn’t right, so they ran her lipids through them to see if any of them were leaking.  Sure enough, one of them were.  Now the doctors are even more anxious to get those lines out.  They decide that they will put in a broviac line in her leg to gain the access needed to run meds once her intercardiac lines are out.  We meet with the people that will be performing the procedure and sign consent.  We are told that this will be done on Sunday.  Well, once again, Emma threw the doctors a curveball.  Emma has an infection.  When a child has an infection, they do not want to cut open her leg and insert a semi-permanent IV access line.  So, they started Emma on an antibiotic to get the infection cleared up.  Also, I come in and notice that Emma’s feeds have been stopped.  Obviously, I am curious as to why this is.  Apparently, based on some chest tube drainage, they believe that Emma is not able to break down the fat in my breast milk, so they stopped the milk and gave Emma sore sort of medicine that is supposed to help with the breaking down of fat.  Last night; however, was fairly uneventful and calm.  Emma enjoys being in her bed and really does not like to be messed with.

Today will more than likely be a busy day for Miss Emma.  They were going to put in today what they call a Broviac catheter, which is a semi-permanent IV access, but since she has this infection, they have decided to postpone that to possibly Monday or Tuesday.   Their main concern is getting out the intra-cardiac lines in her heart and in order to achieve that, they need a new semi-permanent IV access.  In order to do that, they are going to attempt to put in a Femoral line.   If this works, they will be able to successfully pull out her intra-cardiac lines.  They are also concerned about her nutrition again as she is unable to have breast milk.  They are thinking of putting her on a special formula instead to give her more nutrition.  So, we will see how today goes.  Lord willing it works well and she can get those intra-cardiac lines out and get some good nutrition going! 

Specific Prayer Requests:

1)   Pray for this Femoral line today to be a success and that her heart tolerates it well.
2)   Pray for her nutritional status to continue to improve with these changes that they are currently making.  Pray that Emma's lung functioning.
      Pray for her body to start absorbing and utilizing fat properly.
3)   Pray for the doctors, nurses, and all the staff that are looking after Emma.  Pray that God guides their hands as they care for Emma.
4)   Pray for her heart to continue to be free from atrial flutter. 

5)   Pray for Scott and me, that we will continue to have strength and peace about everything that is going on.,,,


S    Sarah and Scott (Emma's Mommy and Daddy)

Friday, October 22, 2010

No PICC LINE

Well, No PICC line for Emma.  They put it in and her heart had the arrhythmia episode again so they had to pull it out.  They said the episode happened solely due to the PICC line insertion.  She did not stay in the arrhythmia episode long which is good, but we would prefer not to have any episodes!  Miss Emma needs to some good days really soon!  It breaks my heart!

More Confusing than Amusing


My baby girl!  She got eye drops put in, so her eyes look a little red!  However, she looks a little "plumper" today!



Frustration can come in many forms.  Today it came in  many  forms, the first being stopping feeds again.  I guess, at times I wonder why they make the decisions they make for Emma.  It is hard for me to see her getting so skinny and yet they stop feeding her.  Apparently, her tube that was supposed to be ND (in the duodenum) was NG (in the stomach).  They think this is why she is throwing up.  It also has to do with the fact that Emma can still be irritated.  When this happens she gets mad, gags, and throws up.  She never threw up her feeds unless she was being messed with and got upset.  They are hoping to redo the feeding tube today and make it ND and start feeds again.

The doctors are trying to understand why Emma is still putting out so much drainage from her chest tube.  They are taking measures to try to figure this out.

Emma getting her heart echo!
They did a heart echo on Emma today to check for cardiac line function.  I got to see Emma’s heart functioning in its new form.  This was really neat to see.  You could clearly see the new construction.  It was truly amazing to see my little girl’s heart working so well.  Emma cooperated so well during her echo.  We were very proud.

They also put in a foot PIV.  Another step being made today(hopefully) is putting in a PICC line.  This is a positive step because it puts us closer to having  the intercardiac lines out which means I could hold my baby girl.  However, this is where frustration number 2 happens.  The PICC line team calls and says they can put in Emma’s line in 15 mins.  The CICU team works hard getting Emma ready to go.  Emma is not happy about everything that is happening and all of the movement they are doing, so she gets upset and throws up a lot.  My poor baby girl.  They had to put a line into her stomach to get the air out and the rest of the bile.  Well, they finally get everything ready (which is a huge effort since they have to move all of her meds, monitors, oxygen, etc.), we get moved a few feet out of the door and the PICC team calls and says we were too late and have been cancelled.  The doctor was MAD and I was even more MAD.  You get my baby girl all upset and uncomfortable and then you cancel her spot because we could not unhook her 400 machines fast enough.  We are scheduled to try again 3:00pm.  Hopefully this will work so we can get that PICC line in.    

 So, we have had a lot go on today and Emma has not got to rest much at all.  I know that there must be a method to their madness, but that doesn’t mean I don’t question their methods from time to time.   Let me clarify,  we are so very appreciative of all of Emma’s doctors, nurses, and therapists.  They are working hard to get her better. 


Keep praying!  While things may seem to be moving slow at times, we have been told that all of this is “normal.”  Emma is not any other heart baby and will do things in her own time.  Pray that Scott and I will have the endurance and patience to deal with the day to day, and to take this journey a day at a time. 


Specific Prayer Requests:
1) Pray that they can get the feeding tube in the right place and that she tolerates the milk, so she can start to gain weight.

2)  Pray for her heart, that it continues to be arrhythmia free and functions well.

3)  Pray that her chest tube quits draining so much and that it can come out soon.

4)  Pray for her right lung, that it continues to remain inflated and that both of her lungs remain open, clear, and function properly.

5)  Pray for the doctors, nurses, respiratory therapists, nurse practitioners, fellows, etc.  that all do amazing things for Emma.

6)  Please continue to pray that all of her numbers continue to look great!  That includes saturations, labs, weight, growth, heart rate, blood pressure, LAP, temperature, etc.


Mommy (Sarah)

Thursday, October 21, 2010

Into the Box We Go.. That is the Box That Makes You Grow

Emma had a wonderful night last night.  I didn't even wake up but once or twice, I don't think!  She rested well and all of her numbers looked great throughout the night!  The doctors were very pleased with her yesterday.  The only problem that we have encountered is eluded by the title.  She has been losing weight, not gaining weight.  Yesterday when they tried to start feeding her through an NG tube, she threw it up.  They want her to gain weight, and so they have started several new things to help her pack some "meat on those bones"!  They have moved her into a box or what they call the Giraffe Omnicell.  It is a bed that helps keep noise and temperature from being a problem with her gaining weight.  She is also getting albumin, which will help her overall process of gaining weight.  They are going to start feeding her milk through her NG tube as well today.  All of these things are being done to try to help her start "filling out" at a quicker rate.

They just moved her into her Giraffe Omnicell, and she seems to be tolerating it very well.  The whole process of moving her from one bed to another was an amazing endeavor in itself.  They had about 4 people that chipped in to help.  One held her, one gave her breaths, one held all the IV lines, and one pulled out the old bed and put in the new bed.  It was quite eventful!  She just looked around at all of them as they did it!

Specific prayer requests:
1)  Pray that she starts to gain weight with all of these changes.
2)  Pray for her heart, that it continues to be arrhythmia free and functions well.
3)  Pray that her chest tube quits draining so much and that it can come out soon.
4)  Pray for her right lung, that it continues to remain inflated and that both of her lungs remain open, clear, and function properly.
5)  Pray for the doctors, nurses, respiratory therapists, nurse practitioners, fellows, etc.  that all do amazing things for Emma.
6)  Please continue to pray that all of her numbers continue to look great!  That includes saturations, labs, weight, growth, heart rate, blood pressure, LAP, temperature, etc.

God is truly amazing!  He is constantly reminding me each day of His presence and work in her life!  God is good, all the time!  All the time, God is good!

Grow Emma Grow!!!  :-)

Daddy Scott :-)


Wednesday, October 20, 2010

Continuing to Get Better

Ok, ok, I have seen many inquiries about how Emma is doing today.  I can catch a hint. HA HA!  Emma had a good night and has had a busy but good day.  Her heart rhythm has been really good since they started her on Amiodarone.  They lowered her dosage and she is continuing to do great.  One challenge with her lately is her irritability level.  The Fentanyl (pain med) that she is on to help with this is becoming somewhat ineffective because her body is getting used to it.  This causes problems because she does not want to be messed with for respiratory therapy or even a diaper change.  Her stats move around a lot when she becomes irritated, so the nurses, doctors, and therapists can only do a few things at a time.  Since she is so easily irritated, they stared her Versed (a sedative) to help.  It seems to be working as she is resting now.  They also upped her calorie level on her TPNs.  They are trying to put some meat on her bones.  She is so skinny and is down below her birth weight by just a little.  They also put her feeding tube back it and started giving her breast milk.  This was very short lived though because she threw-up the milk , so they had to stop feeding her.  Mommy Sarah thinks she threw it up because she was so upset after having the tube put in and being messed with.  I have been told that we will try again tomorrow. 

Since she had a good day, Scott took me on a little date.  This is the first time we have been out together since she was born.  We went to P.F. Changs.  This was the first Chinese food I have had since becoming pregnant.  It was so yummy!  Scott and I enjoyed our time together and even stopped by Cold Stone Creamery for some ice cream afterwards.  On the way back to Children’s we heard a song with the following lyrics:

I have seen the many faces of fear and of pain

I have watched the tears fall plenty from heartache and strain

So if life's journey has you weary and afraid

There's rest in the shadow of His wings



I have walked through the valleys, the mountains, and plains

I have held the hand of freedom that washes all my stains

If you feel weight of many trials and burdens from this world

There's freedom in the shelter of the Lord



And I have seen the healing hand of God

Reaching out and mending broken hearts

Taste and see the fullness of His peace

And hold on to what's being held out

The healing hand of God

  This song seems so appropriate considering everything we have been through the past 16 days.  God is always near.  He hears our prayers and is our comfort throughout all of this. On a side note, Gramma Sharon babysat and really enjoyed her time with Emma. Cousin Samantha and Uncle David came and visited.   

Specific Prayer Requests:

1.     Pray that Emma will be able to tolerate breast milk tomorrow.
2.     Pray that Emma’s last chest tube will stop draining so that it can be pulled out.
3.     Pray that Emma’s heart rhythm continues to stay good.
4.     Pray that her lungs continue to stay up.
5.     Pray that Emma’s sats, stats, labs and neers continue to look good.
6.     Pray that Emma will gain weight.
7.     Pray that Emma will not be so easily irritated.
8.     Pray for the other families in the CICU

Thank you so much for the prayers and support.  It is days like today when I see a lot of Facebook posts wondering about updates on Emma, that I realize how loved and cared for we are by so many people.  We are truly blessed.

~Mommy Sarah 


Reading to my baby girl!


Mommy and Daddy with their little Princess before their date!
Miss Emma!  My little Punkin'!
Date Day at P.F. Changs!

Tuesday, October 19, 2010

A New Day


Well, the sun is up and it looks to be a beautiful day in Dallas.  We had a pretty peaceful night.  Emma did a great job holding her own without the pacemaker.  They are obviously still watching her very close, but are happy with what they are seeing thus far.  Her right upper lung is collapsed again, so they are trying to work on getting that back up.  The downside is that since she is still in a fragile state, they cannot work too hard on her respiratory therapy.  Another thing they are watching this morning is her body temperature.  Her core temperature is running at 99, but her hands and feet are cooler.  The nurse said that a lot of times this is a sign that they are about to spike a fever.  We obviously do not want any extra concerns, so we are praying that this is not the case.  I find myself watching all the numbers closely.  It is hard to take my eyes off of them.  I want and pray so bad that my beautiful baby girl will be back to having really good days soon.  It is so hard to watch her fight so hard.  I stayed at the hospital with Scott last night and we both got more sleep than we thought.  On a side note, Emma is not too fond of the placement of her vent and she keeps sucking on it, which makes the funniest noises.   

Specific Prayer Requests:

1.    Pray that Emma has a GREAT day.
2.    Pray that Emma’s heart rhythm continues to do well.
3.    Pray that Emma does not spike a fever.
4.    Pray that Emma’s sats, stats, and neers continue to look good.
5.    Pray that Emma’s labs look good.
6.    Pray that Emma’s right lung comes back up and they will be able to keep them up.
7.    Pray that her chest tube drainage will decrease so they can take it our.
8.    Pray that Emma will be able to go back on breast milk soon.
9.    Pray that Scott and I (and my mom) can keep up our energy and morale.

Thank you for your continued prayers and support.  Don’t forget to give the glory and gratitude to God for listening to our prayers and working so hard in Emma’s life.

Sarah (Emma’s Mommy)



Monday, October 18, 2010

Oh The Ups and Downs

As I sit here in Emma's room, I truly cannot describe what I am feeling.  Sitting right next to her bed is the ECMO machine.  Sitting right next to the couch where I am sitting is a Mobile Operating Room.  At the end of her bed is a pacemaker machine and "shock machine."  All of these (besides the pacemaker) are "just in case of an emergency."  That is where we are right now.  This is one big waiting game.  

So here is what happened today:

The doctors decided that once again, Emma was having to work too hard without the vent.  The amount of energy it was taking for her to breathe was more than they were putting in her.  She was also experiencing some heart flutters  So, they decided to re-intubate her.  Once again, the problems began.  However, this time it had to with her heart rhythm.  Instead of her heart squeezing, it more or less just kind of quivered.  This meant that it was not getting blood to her body.  Her heart rate also shot way up and they had trouble getting it down.  They had to do some chest compressions, hook her up to the pacemaker, and give her many doses of Amiodarone to try to slow it down.  This was not working, so they told Scott to call me to the hospital because they had brought in the ECMO machine and thought they were going to have to hook her up to it.  ECMO is life support for kids.  While it is available in case of emergencies, going on it and coming off of it are very hard.  So thankful to our wonderful God above for helping her stabilize and not having to go on ECMO.  Emma’s sats and stats have remained good which is encouraging.  Her neers could be a little better, but are not alarming right now.  The main thing they had problems with labs wise, is bringing back up is her potassium.  They are continuing to give her more of it since it has just a direct effect on heart functioning.  Also, they are trying to keep her really sedated.  The medicines that help that lower other things so it truly is a balancing act.    

The doctors just came in and took her pacing wires off to test how she would do.  They were happy with what they saw, so they decided to leave in her temporary pacing wires (down her nose and esophagus to behind her heart), leave the machine hooked up, but unplug her from it.  So far she is doing well.  They are doing this because a few days ago they took out her pacing wires.  If her heart rate can’t stay up on its own then Dr. Forbess will have to reopen her chest and put in pacing wires.  The temporary one down her nose is only good for about 36 hours.

We appreciate your continued prayers and support.  The next 24-48 hours are very critical for Miss Emma.  They are watching her like a hawk and have a plan in place if her heart rate were to slow.

Specific Prayer Requests:

1.    That Emma is able to maintain an acceptable heart rate on her on.
2.    That Emma’s sats, stats, and neers remain good.
3.    That Emma’s lung functioning remains good.
4.    That the doctors and nurses will be watching her closely and making the decisions necessary to get her back on the road to recovery.
5.    That Scott and I will have a peace of mind to deal with this.
6.    That all four of us will be able to rest tonight. 


God is Good! 

The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not grow faint. Isiah 40:28-31


Sarah (Emma’s mommy)    


Quick Update

I realize that Scott just updated everyone about last night's events.  However, he just called to inform me that the doctors have decided that they need to re-intubate her again.  Apparently, she is still working too hard to breathe.  While she is working less than earlier yesterday, she is not getting enough calories(energy) to supplement how hard she is having to work, so it is counterproductive.  This is slightly scary for us since the re-intubation last time did not go smoothly.  However, the doctors are prepared this time for large mucus plugs and are all in attendance for this intubation process.  I am still at the RMH.  I am feeling a lot better but am not going to take any chances with passing anything to Emma.  Please pray that this intubation process will go smoothly and that it is the right decision for Emma's  recovery.  We are praying that she will get some good nutrition this week, get her drainage tube out, and that the next time they extubate, she will be ready!  God is in control and knows what is best for our little girl.  Sometimes it is hard to let go and let God, but He has been so comforting, amazing, and faithful to us through this process so we put our full trust in him.  This morning as I cried because I want to be there and am heavy-hearted about how hard Emma is having to work and what the plans are, a song came to mind.

"Open my eyes to what you know.  So I can stretch so I can grow.  My feelings toss me to and fro.  Open my eyes to what you know."


I am asking God to open my eyes to his plans and to let me see and appreciate all that his has, is, and will do for us.

Also, pray for Scott.  He is going on little sleep.  I want to be there for him so bad.  He is an awesome daddy and is Emma's voice right now.

Sarah (Emma's Mommy)

The Journey Continues

Good morning to all!  Emma's lungs have improved!  An answered prayer indeed.  She is still on the Cipap machine and it seems to be working. Her lungs look more open and she seems to breathing a lot easier.  However, there are several new developments in this journey of recovery she is on.  One is that one of her intra-cardiac lines has somehow dislodged and was spilling her lipid infusion into her chest cavity and then coming out her chest tube.  They have stopped infusing in that line, and are going to do an echo on her heart to see where the line is exactly.  Secondly, the chest tube itself is another one of our problems.  It is still draining quite a bit so they can't take it out yet.  During rounds they informed us that this very tube was causing many of our lung issues as it was collapsing, you guessed it, her right lung.  They are now trying to figure out how they can remove it so that her breathing and lung function will continue to improve.  Thirdly, she started having an irregular heart rhythm last night.  Something they call atrial flutter.  They are going to monitor it today and see what approach they want to take to try and resolve it.  So, with little sleep as I type this, all I can say, to sum up, is that it has been an eventful night.  No one said that this road of recovery would be easy.  So, through all of this, we continue to lean on God for help through all that is ahead!  God is truly amazing and has proven that to us since October 4th when Emma got here!  He has never let us down.

Some specific things to pray for:

1)  Pray that her heart rhythm will resolve and that it will function normally.
2)  Pray for her to be able to get rid of her remaining chest tube.
3)  Pray for her lung function, that it will continue to improve.
4)  Pray for all the medical staff that is taking care of our daughter.
5)  Pray for Sarah and I to have strength and peace through all of this journey.

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

Daddy Scott


Sunday, October 17, 2010

Still on the Cipap

Well she is still on the Cipap but we are not out of the woods yet.  She is still breathing quite a bit and so they are going to watch her like a hawk tonight and make sure that she is doing okay.  They will check her gases (CO2, O2, etc.) and lactate throughout the night.  Please pray for her to become more comfortable on the Cipap machine than she currently is.  Also pray for her lungs to open up fully to where she will not have to work so hard to breathe.  It hurts me so much to watch my girl struggle this much, but I know that this is just another step of recovery.  Please also pray for Sarah and I to have peace and strength for tonight and all the days ahead.

Some other specific prayer requests:
1)  Pray for her tonight and that she will rest peacefully.  Pray for her lungs and for her breathing tonight to improve greatly as well!
2)  Pray for her heart to continue to function really well!
3)  Pray for the rest of her body, that during this recovery process everything will continue to function properly.

-Daddy Scott

Needing Prayers

Well, just like when she first got her breathing tube out, her right upper part of her lung has collapsed.  Her left lung has a bunch of secretions in it and one part in the middle of her right lung has a lot of secretions in it.  They have tried increasing the flow of oxygen going into her lungs to see if that will help.  Now they are going to hook her up to a Cipap machine.  This machine is supposed to use varying pressures to help open up collapsed lungs.

Please be praying that this machine does the trick and opens up her lungs.  If it does not work, then they may have to re-intubate her (put the breathing tube back in), and we don't want to have to do that.  So please pray that her lungs will open and look amazingly better after they put her on this machine.

Daddy Scott

Prayer Request

Please pray for Miss Emma! Scott just called and said that the top part of her right lung has collapsed again. This is the lung she has had problems with off and on since her birth. The RT is working to get it open again. She is off the vent, so she is having to work extra hard to breathe.  This, at this point in time, is not affecting any of her sats or stats which is good! Pray that the lung will open back up and the thick secretions in her lungs will break up and come out. It is hard not being there!
 
Mommy Sarah 

No More Breathing Tube!

This morning the doctors decided that it was time to take out her breathing tube.  After taking her off of her sedation/pain medicine, they watched her for a while and decided that it was time for her to come off.  They are keeping a very close watch on her since she has a history of collapsed lungs, lots of secretions, etc.  As of now, she has been of the breathing tube for one hour and looking good.  Please continue to pray that she does amazing breathing on her own!  God is truly good!

Some additional prayer requests:

1)  As always, continue to pray for her heart.  That it continues to function amazingly well.
2)  Pray for her lungs, that they will continue to function very well!
3)  Pray for the doctors, nurses, nurse practitioners, respiratory therapists, etc.
4)  Pray for my wife to get to feeling better.  She came down, yesterday, with a little illness.  She is an amazing mother and not being here with Emma is no fun for her at all.




Daddy Scott

Saturday, October 16, 2010

Update on Miss Emma





Well last night went well.  She was very stable through the night which is awesome!  Today she has had a pretty big day.  She has had two of her chest tubes taken out and has had one set of pacing wires removed! She is doing very well!  Right now, as I look over at her as I type this, she is resting very very well!  We are truly blessed with such a strong and beautiful little girl!

They are planning on taking her off the ventilator either tomorrow or Monday probably.  Her right lung has two parts that have collapsed again, so please be praying that her lung will open back up like it should be.  They stated that they will not pull her off if her lung looks like this.  They are going to come by in a little while and remove her other set of pacing wires.  This will leave her with some intracardiac lines and one chest tube left!  She is definitely recovering at a very good pace!

Some specific things to pray for:
1)  Pray for her lungs, especially the right lung, that it will open back up and that both of her lungs will function well!
2)  Pray for her heart, that it continues to function great!
3)  Pray for the doctors, nurses, respiratory therapists, etc, that are taking care of Emma.
4)  Pray for Sarah and I, that we remain well and illness free!

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

Daddy Scott

Friday, October 15, 2010

Update on Emma and Friendly Reminder

Well, Emma is doing great!  They started feeding her a little breast milk today!  And by little I mean little, to the tune of 2 mLs an hour.  They have also taken her off of a medication that takes excess fluid off your body, Lasix.  All the doctors that we have seen today are so glad to see her doing so well!  They are also thinking that for sure tomorrow or the next day they will remove one tube from her chest.  And Sunday or Monday, they are thinking they will take her off of the ventilator.

I just wanted to remind everyone that if you plan to come and see Emma there are a few things you need to take into consideration:

1)  Please do not come if you are sick.  If you have any thoughts that you are sick or are getting sick, please do not come until you have been well for a while.
2)  If you have been around sick people, please do not come for a little while in case you are carrying an illness.

We say this because it would be very easy for Emma to catch something at this point in time, and we do not want to delay her healing process by a sickness that could have been prevented.  Just so you will know, if you show up to see Emma and you are sick or think you are getting sick, we will not let you come back to see her.  Also, you will probably be asked to wear a mask and stand by the door.  Flu season has begun, so it is for her protection.   We know that you all want Emma to stay well and fully recover.  When she is good and healthy we will be able to share her with you more.

Thank you to all of the people that continue to pray for Emma!  I see so many answered prayers each day!  Keep up the prayers! :-)

Some specific prayer requests:

1)  Pray that her recovery process continues to go smoothly.
2)  Pray for her heart to continue to function great!
3)  Pray for her lungs, that they continue to do well and function properly.
4)  Pray that her brain will develop the way it is supposed to and that that it will not be a cause of        concern in the future.
5)  Pray for the doctors, nurses, respiratory therapists, etc. that see her on a day to day basis.
6)  Pray for the other families in Children's CICU!

As always, I thank not only the doctors, nurses, etc. for helping Emma each and every day, but I thank God for continuing to watch over our Precious Little Princess!

God is good, all the time!

Daddy Scott and Mommy Sarah


We were a little naughty today.  We tried to pull our intubation tube out, so we had to be restrained.  Notice the blue cuff with white ribbon.

Awake and Alert This Morning

video

Well as you can see from the video above, Emma is very alert this morning!  She is doing very well today! All of her vitals are looking good and they have already taken her off of two medications that she was taking to help with her heart!  God is good!  She is being slowly weened down on her ventilator and is doing well with that.  They have separated out the chest tube drains to see which ones are still draining and which chest tubes they can possibly remove!  The doctors said this morning during rounds that she looked great!  So many blessings today!  God is good, all the time!

Daddy Scott

P.S. I uploaded this video from Youtube and its on the right of the page.  This video in this post is not as good quality as the one from Youtube.

Emma with Mommy and Daddy!

Took the dressing off our stitches this morning!

Gramma with Emma!



Our Bright-Eyed Little Princess!





Thursday, October 14, 2010

Chest is Closed



Well the chest is closed up and Emma is doing good.  They say that the next 8-12 or so hours can be similar to after the Norwood just because this is almost like another surgery.  It changes the pressures inside her chest cavity which makes a whole new environment for the heart.  Everything went well though and now they are going to just watch her and see how she does.

Specific prayer requests:
1)  Pray that her recovery process after this is smooth.
2)  Pray that her sats and all her vitals continue to improve as they should.
3)  Pray that her heart continues to function well.
4)  Pray for the doctors, nurses, etc. that will be taking care of Emma.
5)  Pray for her lungs, that the part that is collapsed will open up, and that they will continue to function well.

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

Daddy Scott

Chest Closure This Morning

Just wanted to let everyone know that Emma is having her chest closed this morning around 7:30.  Please pray that everything goes well.  Also, that her recovery from the closure is smooth and without any major downturns.

Specific Prayer Requests:

1. That her chest closure goes GREAT today!

2. Pray for Dr. Forbess and the rest of the OR team.

3. Pray that her recovery after the closure is smooth and easy.

4. Pray that her right lung will complete inflate back up.  The upper part is collapsed.

5. Pray that her sats and stats remain in the appropriate levels.

6. Pray that they will let her have food as soon as possible.  Her little tummy is growling!

7. Pray for the other families her at Children's!

Thank you all for your support and love

Sarah (Emma's Mommy)