Today Dahlia was officially placed on the heart transplant waiting list. It was quite the process!
Now the waiting begins.

heartbroken

The past couple of weeks Dahlia had been doing so good. She was able to be moved from the NICU to her own private room. We were able to spend the night in her room and rock her in the middle of the night whenever she wanted to be held. I am grateful for all the special moments I was able to spend with her; for all of the sweet smiles she gave me. She was doing so well that the doctors said she could come home. We were so excited to have her home for the holidays. We were able to bring her home this past Tuesday. I was exhausted and Brian took over baby duty that night. I wish I would have know that was to be our only night home with her; I would have slept with her in my arms. I wish I would have taken a quick family picture with her or taken a video of her. The next day Dahlia looked very pale and after I feed her she vomited. She was having trouble breathing and became lethargic. Brian rushed her back to Texas Children's Hospital. Her little heart just couldn't keep up anymore and she had to be put back on life support. It is heartbreaking that we can no longer hold and rock her. It is heartbreaking that she made so much progress and just when we thought we were out of the woods for a little while, she deteriorated before our eyes. It is heartbreaking that the only chance she has at living comes from another family's precious baby's death.


"Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel's end—no dawn to break the night's darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea 'Is there no balm in Gilead?' (Jeremiah 8:22). We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

Thomas S. Monson, "Looking Back and Moving Forward," Ensign, May 2008, 90

halloween

Since I only get to see Brian and the kids on the weekends, I missed Halloween this year. Luckily, Brian took lots of pictures for me!

Dahlia has proven herself to be a little fighter. About a week and a half ago a doctor told us, "someone with lungs this bad normally passes away, we're a little bit confused." Now she is completely off supplemental oxygen. Along with being tube fed she is now able to drink a bottle every six hours, and she loves it! Brian and I both agreed to go down the road of a heart transplant if she needs one eventually. Last Wednesday, Dahlia was transferred to Texas Children's Hospital where there is an excellent heart transplant team. After speaking with them we knew we had made the right decision. The doctors are trying everything they can think of with a heart transplant as a last resort. Currently they are trying to wean her off a heart medication which can only be taken intravenously, to one that can be taken orally. If that goes well it will buy her some time, months maybe years to grow and become bigger and stronger before she needs a heart transplant, or perhaps by some miracle she won't need one at all. Here are some pictures my mom took of her.



mmmmmm