Wednesday, December 28, 2011

First Hair Cut

Emma got her first hair cut on December 26th.   Of course, Aunt Joni made her look beautiful.  Enjoy the following pics...

Home Again Home Again Jiggity Jig…

Well, on Tuesday we got to come back to the aprtment.  We are so excited to be back in our home away from home.  We pray that we can actually stay here awhile and stay FAR AWAY from the hospital unless we are there fro clinic visits. 

Emma is doing well.  We did have to come home on oxygen due to her x-ray still looking very wet; however, we are hoping that the longer she has to heal the better her x-ray will begin to look and we can slowly wean the oxygen off.  Emma is still on a high dose of diuretics to help pull off excess fluid.  These medications are great, but cause problems in other areas (electrlytes), so we will be monitored closely for the next several weeks in order to make sure that Emma’s body maintains a healthy balance.

Speaking of balance, we are trying to get Emma back to a balanced routine.  We have contacted her home therapists to hopefully start back physical, occupational, and speech therapy soon.  We will also be going to get her helmet adjusted tomorrow to try to get her head reshaping the correct way.

Please pray that Emma can stay healthy and out of the hospital.

Also, Scott and I have made the decision to move to the Dallas area.  This is a big step for Scott, Emma, and I.  Please pray that this will be a smooth and good move for us all!

God is Good!  All the Time!  God is Good!

The following pictures are of the day we came home and the day following with a visit from the Hendricks clan!

Twas the Night Before Christmas

Twas the night before Christmas.
When all through the CVICU.
All the nurses were scurrying.
They all know what to do.

We celebrated our Christmas Eve with our hospital family.
The doctors provided a meal that we ate happily.
We took Emma on a ride to see the hospital’s big tree.
The look on her face was pure glee.

Christmas pjs are on and the music is playing
Emma is bathed and her nurses are saying.
It is time to rest up for Santa is coming soon with his sleigh
Emma will start her Christmas morning with pokes and an X-ray.

Emma was nestled all snug in her hospital bed.
While visions of Valium danced in her head.
The presents were tucked under our little tree.
And all the nurses and doctors just had to come see

Christmas morning is here and guess who arrives?
Santa is at the door with presents and Emma just cries.
She loves all her gifts especially the tissue.
She’s one happy baby despite all her issues.

Our family arrives to join in the fun.
It is so nice to be together as one.
Emma opens her presents from all Santa’s elves (aka Grandparents, aunts, uncles, cousins, nurses, respiratory therapists, and friends)
And the look on her face tells us she is enjoying herself.

We had a great day and Emma was worn out.
She went right to sleep without one little shout.
Christmas is Christmas even in a hospital room.
There was lots of love around not one ounce of gloom.

You learn really fast it’s about love after all.
No matter how you celebrate whether big or small.
We are so blessed to have another year with our Princess.
Scott and I consider ourselves really Blessed.

We hope you all had a wonderful Holiday.
And we want you to know that we mean when we say…
Merry Christmas to all of you who have shown us love and care
May your New Year be filled with many blessings to share.

Sunday, December 11, 2011

Emma working her tummy muscles

Sassy Pants

Sorry for the delay...Emma is keeping me quite busy these days!

First of all, I am going to give everyone a quick overview of the last week:

1.     Emma’s fevers did not get better, which resulted in respiratory distress and ended in a move to the CVICU and intubation.
2.     Emma was very dry so she could not receive diuretics she needed volume and blood, which caused her to accumulate fluid in the chest cavity.
3.     All tests (viral and bacterial) came back negative: FRUSTRATING
4.     Dr. Forbess put in a chest tube.
5.     We weaned off of the vent and switched to 20 LPM of Vapatherm.
6.     We have slowly weaned down on the Vapatherm and are now at 5 LPM.
7.     We are still in the CVICU with a chest tube in place.

The above list is one story our little Emma seems to tell a lot.  I cannot tell the times I have predicted the above events occurring because it seems to be Emma’s recurring problem.  Pleural effusions + lymphatic damage = recurring issues with diuretics (too wet or too dry), multiple chest tubes, and respiratory problems.  In all reality, these issues are what have kept us here in the hospital since her Glenn procedure. 

However, Emma is a happy baby (for the most part) and is changing and growing more and more every day.  We are having the best time with Emma and truly enjoy watching her meet new milestones.  We are so glad to have her feeling better again and filling our days with many smiles and laughs.  Emma is also vocalizing more and LOVES to talk to her daddy on the phone. Emma is also getting very good at throwing "fits" to get her way.  And, it is like she knows that it will make her monitors alarm which will bring in a crowd of people.  Hence her new nickname: Sassy Pants.  As soon as we do what she wants she gives us this ornery smile.....oh boy are Scott and I in trouble :)

As we near Christmas and think about the possibility of spending another holiday in the hospital, we truly are just thrilled that Emma is here and happy.  Christmas is about spending time with those you love and whether that is in the hospital or at home, we are blessed to be spending it together. 

We hope and pray that as the holiday season approaches, you truly reflect on the love of family and NOT on the material gifts that the season also brings.    

God is Good!  All the Time!  God is Good! 

Until Next Time …..

I didn't do it...I promise ;)

Gramma and Emma played so hard they passed out!

She makes my heart whole!

Tuesday, November 29, 2011

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!

Friday, November 25, 2011

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.