|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!|