Tis the Season: For Viruses That Is!

Please pray for Emma.  She has been running a fever off and on since Thanksgiving.  We thought that she had turned the corner and was feeling better yesterday afternoon, but by 3am she was running a fever again, has a very high heart rate, and was coughing her little head off.  All of the tests we sent off a few days ago have come back negative, but we sent off fresh cultures again today to see if anything new has come back.  She is miserable and not sleeping.  The irony is that the hospital is the worst place we could be right now with all of the rooms around ours in isolation for some sort of virus.  Please pray that we can kick whatever this is so we can get OUT OF HERE!

Update on Miss Emma

Well I just looked at our last update and as stated in that update, a lot has happened since the previous update.  We apologize for the delay in updates, can get kinda busy around here! ; )  Well Emma was on 20 liters of Vapotherm but we have been able to work down to 6 liters on a heated nasal canula!  Big big progress there!  We have been also working back up to where we were on feeds and trying to get her back to bolus feeding (larger volumes at a time) from continuous feeding.  We have made quite a bit of progress in that area now as we are kinda back to where we were when we were feeding her every 3 hours.  We have a little bit of work left still in those above two departments, but I know that we will get her there...  (keep reminding myself, slow and steady wins the race..)   Emma, has been all smiles since being extubated.  All smiles and she has also been loads of fun.  She is starting to have quite a little voice and she is "ahing" towards both of us when she feels like she needs to tell us things (which mind you is quite often!).  She is also developing quite a little addition to her already wonderful personality and that is in the area of increased sassy-ness.  She has this little cry and temper that is developing.........  it makes us laugh, which, doesn't make her happy!  We have also moved from the 3rd floor ICU to the 8th floor (one of our nurses called it "the zoo" so Emma wouldn't know she was moving, and also progressing to going home! hehe  Yall might remember how she likes to throw us for a curve ball when she starts figuring out she might can, go home!). 

So, that in a nut shell, brings us to Thanksgiving day.  We had a lot to be thankful for.  I mean, wow, God has blessed us and brought us through some crazy times.  We have a wonderful daughter who lights up our lives.  We have wonderful people, like all of you and our families, in our lives, and the list goes on.  There is much to be thankful for.  But, as always, Emma wants to remind us of how she can be sassy, and so on Thanksgiving eve night and Thanksgiving day, Emma ran a nice fever.  We drew some labs but nothing came back positive for anything.  On top of that, she decided to start this coughing spell that brings her to vomiting.  Just recently one test, testing to see if she had a virus or not, came back negative, which is good!  However, the frustrating part about that test is that it only tests for common virus's, not all.  That means that, even despite coming back negative, you could have or had a virus.  But, a negative result, in my book, is still better than a positive one!  We think she might be trying to cut one or more teeth again.  I hope that she is getting closer and closer to those 20 teeth (she won't let us look in her mouth), because this is the worst thing, to her, that she has ever experienced each time she cuts one tooth.  But, despite all that, we enjoyed our Thanksgiving, even though it was just the three of us in the hospital.  We watched the parade, ate a nice lunch, then just played with Miss Emma the rest of the day, well that is when she wanted to play! ; )

All in all, Emma is doing very good.  We just keep praying that she can ween down even more on the oxygen and continue to work up on her feeds.  We also keep praying that she is not coming down with some form of sickness as she is still running a low-grade temperature. 

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

Slow and Steady Wins the Race

Since the last update….

Since we have updated you last, a few major events have occurred!  Emma is extubated.  YAY Emma!  We extubated her to 20 liters of Vapatherm.  This is a lot of oxygen flow in her little nose and she does not necessarily care for it; however, it is necessary at this point to keep her lungs open.  We dealt with intermittent lung collapse shortly following extubation but seem to have that under control right now.  We are lowering her flow be one a day and are currently at 15 liters. 

Emma’s chest tube worked its way out, so she is currently chest tubeless.  We are hoping and praying that we will not have to insert another tube anytime soon. 

Emma is much more like herself again.  She is laughing, playing and ‘talking’ a lot more each day.  She is really finding her voice and ‘ah, ah, ahs’ all of the time.  She is VERY weak from all that has happened to her, so she was not very happy with me yesterday when I asked her to work at sitting up, rolling, etc. 

The plan….

Well, the plan is to get her out of the hospital.  So, in order to do that we must get her off of the vapatherm onto a regular nasal cannula and transition her from IV diuretics to PO (by mouth) diuretics. 

Emma has been a happy baby lately and has really enjoyed having her hands free to play.  Please continue to pray for our little Princess as she continues on this crazy journey.

FRIENDLY REMINDER:

IT’S BACK!!!! VIRAL SEASON THAT IS!  Please remember that anyone who would like to see Emma MUST have their flu shot.  Also, if you are sick (even the sniffles) or have been around someone who is sick, please do not come visit us.  We appreciate the care and concern, but MUST keep Emma safe and germ free. 

Thank you again for the constant prayers, encouragement, and love.  Please say an extra prayer for our heart buddies.  Some of them are really having a hard time and could use the prayers.

Also, A BIG THANK YOU to all of you who donated items for the Hope From Emma’s Heart project.  The packages are put together and are just waiting for a less hectic time to be delivered.  I will write more about them later, but you all went above and beyond to fill them with AMAZING items.  I tried to get thank yous out to everyone who donated, but if you have not received one and donated something please know that your generosity is GREATLY APPRECIATED! 

God is Good!  All the Time!

My finger may be small but I can still wrap my Daddy around it.

Promise me you'll remember: you are braver than you believe, stronger than you seem, and smarter than you think.

You are WORTH IT ALL!

Before I was a Mom, I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
~

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.