Since the Last Update.....

The last several days have continued to progress in a slow and steady fashion.  One of the biggest and best news we have received is that her heart function is back to NORMAL.  This is such big and exciting news.  We were unsure what exactly occurred on the night that Emma crashed (did her heart quit functioning properly and that caused respiratory problems, or the other way around), so to have her heart function normalize was a huge relief.  We were all just waiting around to see if her heart would pick back up and work like it should.  This waiting game was difficult and caused a lot of anxiety.  After all, if her heart had taken a permanent hit, what would we do?  What would the new plan be?  So, as of right now, all of the inotropes (or medicines that change that force of the heart’s contractions) are OFF!  YAY Emma!

Our biggest hurdle at this point is getting off the vent.  We are making strides in the right direction, but due to constant effusions (fluid in the chest) and lung damage from being ventilated for so long, Emma’s lungs do not always want to cooperate like they should.  We are currently walking her down a little bit at a time in hopes that we can extubate her in a few days. 

Emma’s swelling has decreased significantly and she looks much less like the “Michelin Man”.

A little over a week ago, we were told that our little Princess would not live through the night.  We were told by multiple doctors and nurses that babies that experience what she did that night do not live.  Throughout it all though we were also told that Emma has the most fight that they have ever seen in a baby.  She continues to fight and defy odds.  We know who is in control and who is holding our little girl’s hand. 

We thank you again for the prayers, encouragement, and concern.

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

Looking much better...our little fighter!

Our little doctor in training (pre-crash)

Sweet baby girl (pre-crash)

Update on Miss Emma

Well it has been a good past couple days.  Emma is improving which is an answered prayer from God!  A few days ago, the echo of her heart said that it had severe impairment of the right ventricle.  This was devastating as her heart has never been a big issue when she was really sick in the past.  The doctor's thought that it may improve but said that we would tackle the question of what to do next if her heart did not improve.  Yesterday, they did a repeat echo and her function of her right ventricle was listed as normal!!!!!!  God is good!  She still has some impairments that they noted but it appears to be overall improving.  She has been able to get a lot of her excess fluid that she has off of her through diuretics.  This is great because she was so swollen, especially in the face, and also because that much excess fluid is never a good thing.  She is starting to look more and more like our sweet little princess each day.  We have been on what they call an oscillatory ventilator up until yesterday when she was able to transition to a normal ventilator.  Today, we have continued working her down on her settings to get her closer and closer to being extubated.  This will be a journey, but we will just keep working with her to get her there.  We have been able to cut all but one of her medications off that support her heart which shows her heart is continuing to improve as well.  We have started to be able to feed her with a little Tolerex which is another great sign!  All in all, she continues to improve and is much much better than a few days ago.  A special thank you to all the staff here at the hospital who continues to take such amazing care of her!!!! 

Of course, we give all the glory to God who continues to watch over our precious little princess and continues to bless us all each and everyday.  God is good, all the time.  And all the time, God is good. 

Specific prayer requests:
1)  Pray that she continues to steadily improve each day.
2)  Pray that we can get rid of some of the excess fluid surrounding her lungs in her chest.
3)  Pray that we can continue to work quickly at getting her off of the ventilator. 
4)  Pray for her heart, that it continues to improve and get back to normal.
5)  Pray for all the doctors, nurses, respiratory therapists, techs, etc. that take such good care of her each and everyday we are here.

My Little Fighter

That smile she is giving me in the picture below is one of the things that keeps me going.   I miss that smile so much right now.  Emma continues to make baby steps in the right direction which is a good thing.  She is trying to breathe over the oscillating ventilator which is weird because it breathes like 600 breaths a minute...but that is my little fighter....always working hard to survive.  Her swelling is slowly coming down (we have a LONG ways to go, but we have urinated a liter off....5 more to go) yes, Emma had 6 liters of extra fluid on her).  Her hands and feet are warming up and I can actually feel pulses...yay!  We will get another heart echo today to look at function (please pray it is improved).  Thank you all for the prayers and encouragement.  I wish I had time to write you all individually and tell you how much it means to me.

Brief Update

Just a brief update.  Emma is still stable and improving slowly.  We have been able to work down on her vent settings some but with all the fluid that she has accumulated around her lungs, it is going to be difficult to go down much further without probably having to have that fluid drained off.  We have been able to remove one of the medications that support her heart function (inotropes), which is really good.  They have been working at removing some of the fluid off her body that has accumulated since she got admitted.  This has been successful thus far which is a big blessing.  She had/has so much excess fluid accumulated.    All in all, Emma is making positive steps forward.  Continue to pray for her and her recovery process.  Also, remember to pray for all the doctors and all the staff here at the hospital as they take amazing care of Emma. 

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

Update

Brief update:  Emma's lungs are filling with fluid and causing ventilatory issues so they tried to put in a pigtail but she has so much scar tissue that it was unsuccessful.  We are trying to control things without surgical chest tube intervention but have that in our back pocket.  We are still fighting for Emma and she is still fighting.  Her heart function looked minimally improved.  Everyone is working really hard for her.  We have an extremely uphill battle and to be honest it is very scary but our God is good and He will carry us through whatever storm comes our way.  We want to thank everyone for prayers and support....it gives us peace at a time when we need it the most

Please pray

Emma had a cath on tuesday to fix some issues in her heart. She has had a difficulty recovering and has run a high fever and had some swelling. Emma took a turn for the worst yesterday afternoon/evening.  She had to be intubated because of her acidotic blood gases.  The problem that we then had was that none of the traditional ventilators were working so we had to put her on an oscillating vent.  The challenge then was to correct her acidotic blood gases.  It took all through the night and into this morning to see some improvement.  During all of this, her heart took a hit and is not functioning like it should.  Things are very critical right now but Emma is still fighting so we are too! (they have her sedated and paralyzed). Please pray for our princess as she fights this uphill battle.

Update on Miss Emma

It has been a while since we last updated the blog and I apologize.  Emma's birthday went well and she continued to improve and we were discharged on the 8th.  We went home and enjoyed watching the OU/Texas game.  After the game, we put Emma down for a nap.  Everything was going great and we were excited to be home, but when Emma woke up from her nap, we noticed she was having a little more difficult time breathing.  So, we called up to the hospital and told them what was going on.  They called back and told us to just watch her and see if she got any better or if it got worse.  So, we watched her through the night and then through the daytime on Sunday.  We decided Sunday night, that we needed to take her in as she had not gotten any better and looked a little worse than on Saturday.  So, at around 11:45pm, we headed up to the ER at Children's to get her looked at.  Sarah and I thought that more than likely she had developed another effusion on the left side, and so it was no surprise to us that when we saw the xray, an effusion was glaring out at us from on the left side.  We were admitted to the 8th floor for them to attempt to diurese off the effusion.  Once on the 8th floor,  they decided to send us down to the ICU in case she would require a chest tube placed.  After a few days of intense diuretic therapy, the team decided that a pigtail chest tube would be the best option as her electrolytes were starting to become abnormal and possibly difficult to try and normalize as well as her effusion not improving significantly.  So, on Wednesday of this week, she got another pigtail chest tube.  It has dramatically helped her improve as her breathing has normalized, her sats have increased back to baseline, and her xray has cleared up quite nicely.  Now the big question at hand is going to be when to remove the chest tube....  Last time her xray looked great before we left the hospital and she somehow re-accumulated fluid in her chest.  So, as you might imagine, the team is not wanting to make any rash decisions. Today, we have been enjoying the OSU and OU games up in our room on the 8th floor.  Emma is very happy, but at times still quite fussy from teething (she is cutting around 8 teeth at once).  Amazingly, with all Emma has been through, teething is by far one of the worst things for her.  She cries and moans which just breaks our hearts!  We feel so sorry for her because we try everything that you can think of to help with the teething and it just doesn't help her that much.  Thankfully though, teething doesn't last forever and we look forward to the day when her pain from this subsides and she is our happy go lucky baby again!

Some prayer requests:
1) Pray for her effusion to go away for good so that when we remove the chest tube, she will not need another one placed.
2) Pray that her teething pain lessens.
3) Pray for all the doctors, nurses, and other medical staff as they take care of her and all these other precious children each day.

As always, we are so thankful to God for blessing us each and everyday with this sweet little princess!

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