Emma is a BIG COUSIN!

 So, I have to take a minute to brag!  My nephew, Coen O'Rion Estes was born Monday, January 24th!  He was 6 lbs 1.2ozs and 19 1/4 inches long!  Emma is now a big cousin!  She takes her responsibility very seriously!  Congrats to my brother and sister-in-law!

Uncle Scotty!

Randi was a ROCK STAR!  

So proud of my little brother!

Getting lots of Aunt Sarah time!

Isn't he precious?

The only person missing is my precious Emma!  She will get to be in the pics soon!

Update on Our Precious Emma :) I know... I know... it has been a while!!!

Check out this SMILE!!!

Talking to Mommy!

Peek-a-Boo!

Cutie!

Well hello to everyone!  I finally get a chance to sit down and type an update again.  I know it has been a while since we last updated, and so I will try to fill everyone in on what is going on with Ms. Emma.  Let's start by saying Praise God!  Emma is getting bigger, and by bigger I mean chubby.  Chubby enough to be over 5 kg which is ~11 lbs!!!!!  Such a blessing to see her getting bigger and stronger.  We are still on the ventilator but with each pound she puts on she gets stronger and has a better chance of coming off of the ventilator.  She is developing quite a little personality as well.  She is getting older and we have not changed her dose on her sedation/pain meds in a while which means she will outgrow them.  Knowing this, we understand that she can become more irritable at times.  She knows what she does and doesn't like even more than she did several weeks/months ago.  She knows she doesn't like any tube that goes into her body.  She actually will reach up and try to pull it out, little stinker.  We tell her that they are good for her right now and that she will lose them soon enough, but she just does not want to listen! ;-)  So, as you can imagine, she is becoming very stubborn and likes to get her way!  (Don't tell, but that is just like her mother! :-P)  But, besides being irritated at times, she can be rather fun and happy as well!  She loves watching her mobile, with birds on it, spin round and round.  She often will smile and even laugh at it!!!! :-)  So, she can be very fun!!!

As of now, however, our little princess has caught herself some sort of bug.  They just did a culture of her ET tube and it came back growing some bacteria that she has not had before.  So, we started her on antibiotics which should take care of it in just a few days.  Being sick makes her less happy, of course, which is absolutely no fun to watch.  :(  But, hopefully we will get her well and back to her normal self soon.

We are still waiting on a heart.  The waiting game is hard.  We want her better but realize the sad reality of how we get her there.  We know God has a plan for all of this and so we leave it up to Him as to when that will happen.  Thank you all for the thoughts and prayers!  I want to assure you that they are working!

Also, Sarah, Emma, and I want to say a special thank you for all of the people that are holding fundraisers/events for Emma.  You all are truly amazing people and a true blessing from God.  As I type this, it brings tears to my eyes just thinking about the out-pour of support from all of you!  We appreciate everything you all do and are very humbled by how many people are coming out to help our family.  It makes us want to help those around us, as you all of helped us.  At times we question why in the world we were chosen to go through this, but we know that God has given our family the strength and courage to go through this and has blessed us with people like you to continue to edify us through this process.  So again, we all of my heart, thank you.

There have been some people requesting to get in contact with us other than on Facebook (where amazingly no matter how much information you give us, you still can't locate that person) or through this blog.  So we have set up an email account where you will be able to easily contact us.  The email address is as follows:  hopeforemmasheart@gmail.com.  Feel free to email us!

As always, thank you all for the support and edification that you all provide to our family!  And we give, as we know ya'll do to, thanks to God.  He is truly an amazing God!

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

Daddy Scott

The Waiting Game

Waiting Game:

Right now, we are in one HUGE waiting game.  Emma was officially placed 1A on the transplant list on January 4^th, her 3-month birthday!  They have been running some tests to see why Emma is having problems gaining weight and processing high caloric amounts of food.  The main test is a stool study called Alpha-1 Antitrypsin.  We have sent off three of these studies.  The first one came back elevated, the second one came back normal, and the third one came back elevated again.  So, the doctors have come to a somewhat unanimous conclusion that Emma has Protein-losing enteropathy or (PLE).  PLE is a rare condition characterized by a loss of serum protein into the gastrointestinal tract resulting in hypoproteinemia, which can be complicated by edema, ascites, pleural and pericardial effusions, and malnutrition.  However, out of all of the doctors and nurses we have spoken to, only two of them (one of them being the surgeon Dr. Forbess) have EVER seen this in an infant.  PLE in an infant is very RARE…….like probably one in a MILLION!  To be honest, Scott and I debated whether or not to share this with our blog followers because the information you will find is for older kids and adults.  In fact, we have known that this was a possibility for a while but chose to keep it to ourselves until we learned more about it and its treatment.  Just like us, people like to Google when they do not fully understand the terminology of certain medical disorders.  We ask you to PLEASE REFRAIN from doing that this time.  Basically, Emma has had pleural effusions (or drainage from her chest cavity) since post Norwood, poor weight gain, and a swollen abdomen, which are all signs of this medical condition.  We have asked what the treatments are for it and the answer is steroids or heparin; however, neither are GREAT or REALLY PROVEN to treat it well, so the BEST solution is TRANSPLANT.  Since this is the route it looked like we needed to take anyway, we are doing what we need to do to best help Emma. 

So, what has been going on lately.  Not much.  We are trying to wean on Emma’s vent when we can, increase her feeds when she can tolerate it, and work with her on her physical development.  They did put Emma on a two-week steroid regiment, which ended today.  Emma did swell some with the steroids and became quite irritable and NOT SLEEPY!  We are hoping these symptoms go away soon! 

Scott is working more and I am here with Emma.  We miss him so much when he is gone, but appreciate the dedicated dad/husband he is.  We want to thank all of those that are giving us encouragement, sending cards/gifts, calling, and most of all praying for us during this journey.  If I have not thanked you or sent you a THANK YOU please know that we are SINCERELY THANKFUL for all that you do!

Specific Pray 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

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

Chunky Monkey! :)

Emma with her official transplant letter!

Emma's laughing face!

Mommy (Sarah)

Hard Road Ahead

Watching my Birds!

Hard Road Ahead

Nobody said that this road would be easy.  However, that does not mean that we wish things were different.  Today we met with a team of doctors that are in charge of Emma’s care.  We heard some things at the meeting that we expected and some things that we didn’t.  So, here is what we know.  Emma is a puzzle to the doctors.  That is what every parent wants to hear right?  The doctors confirmed what we pretty much knew and that is that they are not really sure what is going on with Emma.  Why is Emma having eating problems, Why can’t Emma come off the vent?, Is it her heart?  Well, the best answer they can give is that it is her heart, so we need a new one.  We have pretty much done everything that we need to do to get listed for transplant.  So, hopefully by the end of the week we can be officially listed and start accruing days. 

Now, some of you are probably thinking, have we thought about consulting outside opinions, or are we pushing/advocating enough? To understand fully what we go through on a daily basis, one must walk in our shoes—which, we wish upon no one.  Emma is rare, or like we like to say, SPECIAL!  In fact, a lot of hospitals would’ve refused care to her, but Dallas CMC is working hard to try to become a leader in the area of HLHS with RAS, so with their hard work and God’s guiding hand, we have made it this far.  Emma is still fighting and no one is giving up on her.  A new heart seems to be the best answer at this point.  However, it is not a guarantee.  We are fully aware that a new heart might not fix all of her issues, but at this point, it is the BEST answer.  We have also been made aware that the average wait time for a heart is 6 to 9 months and that we could be here at least six weeks post transplant for recovery. 

So, what are the plans until transplant?  We need to try to get Emma to gain weight and work hard to wean her vent. We might at some point need to go to the cath lab to get a little procedure done to “buy us more time” with the current heart fix until a transplant.  Other than that, we will be doing “normal” baby things such as holding her, giving immunizations, sitting her in a Boppy, Bouncy, and Bumbo, working on neck/head control, etc. 

Please keep praying!  God is in control.  God is good!  We trust that he will do what is best for Emma in this situation.  We love our baby girl dearly and enjoy every moment with her.  She is growing and gaining weight.  Today she weighed around 4.8 kg.  Tomorrow will be her 3 month birthday.  Lord willing, we will be celebrating more “month” birthdays in (and out) of the hospital with her. 

Specific Prayer Requests:

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

Cheering on OU!

Big girl sitting up in the Boppy!