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

one month old

Today my baby is one month old. Yesterday I was able to hold her for the first time in two weeks. I held her until my arms felt like they were going to give. She looked into my eyes and feel asleep in my arms, it was heaven! It gave me strength for the horribly depressing meeting Brian and I had with the cardiologists. They told us they believe eventually Dahlia will need a heart transplant. They want us to come to a decision, if the time comes, to proceed with a transplant, or bring her home to spend what little time she has left with us, under the care of hospice. A heart transplant sounds like the natural choice a parent would make. However, a transplanted heart in a young baby, on average lasts only about 10 - 15 years, and the process and operation on a baby so young can be very brutal and can take a huge emotional toll on the family. We have a very hard decision to make. I was able to hold it together during the meeting without a single tear. However, once I got back to Dahlia's room I cried and cried, it seems like I have been doing a lot of that lately.

living in a night mare

For almost two weeks I have been living in a nightmare that there is no escape from or waking up from. Ever since October 10th my sweet, precious baby has been in the pediatric intensive care unit hooked up to all sorts of tubes, fighting for her life. On Saturday, October 9th Dahlia seemed very lethargic and refused to eat. Later that evening she was having trouble breathing and lost all of her color. That was when she was rushed to the emergency room. The doctors there thought she might have some kind of infection. The next day she was transferred to Memorial Children's Hospital in Houston. What I once thought was a curable infection has now been diagnosed as a congenital heart defect and she might be in need of a heart transplant. Her condition is extremely rare and is called Left Ventricular Non-Compaction. The doctors are hoping they can help her heart with the use of medications if that fails her only hope would be a heart transplant. Yesterday she was taken off her ventilator and the doctors are hopeful, but she is still not out of the woods by any means. In her short life, Dahlia has taught me so much already. She has taught me to never ever take anything for granted. Now, I would give anything just for a normal, mundane day with whiny kids and a mountain of dirty dishes. She has taught me what is really important in this life. I am grateful for the two precious weeks I had with her at home. I am grateful I got to cuddle, and love her. If I had known what lurked around the corner I would have never put her down. I don't know what the future holds, but I know that she is God's hands, please keep her in your prayers.

2 weeks old

It's been a tiring two weeks with nights blurring into days, but I'm loving every minute of the newborn sweetness that will be gone in the blink of an eye.

Ava and Dahlia

Today was the first day I was on my own with the kids and the baby. My parents were here all last week and were such a big help! Luckily I still have a little helper around here. Ava loves holding the baby; she will rock her and sing to her. Thanks to Ava my first day alone went pretty good.

one week old

I can't believe it's already been a week since baby Dahlia was born. I guess time flies by when you are sleep deprived!

6 days old

I still haven't adjusted to having a newborn around, but this little baby is making the process pretty easy. She is a very calm baby and doesn't really cry that much. Best of all she doesn't have her days and nights mixed up!

Dahlia Eve is here!

On Thursday around 2:30 pm our little 6 pound 12 ounce baby was born. We went to the hospital around 11:30 and three hours later she was born. I was able to get an epidural this time around unlike some of the previous times I was in labour and it was heaven! I was starting to think that this was going to be the easiest birth ever. However, when I was completely dilated and ready to push my doctor broke my water and to everyone's horror discovered that the baby was breech! All of the sudden the room was filled with nurses and they rushed me off to the c-section room in case I needed an emergency c-section. Luckily, my doctor let my try and push the baby out first. Although I couldn't feel a thing I pushed with all my might and luckily she came out. After all the drama it was so nice to finally meet my baby. She is the tiniest out of all our babies and so sweet. I had a nice, relaxing recovery in the hospital with Brian and the baby and we are glad to now be home.

not the baby for much longer

The new baby is coming soon and Laila won't be our baby for much longer. For almost three years she has been our youngest, and I have really enjoyed that time. I think Laila is beginning to realize that there is a new baby coming soon and she won't be the baby of the family anymore. The other day she told me that she wanted to go back in my tummy so that she could be the new baby. When I was folding and organizing all the baby clothes, Laila saw all the new clothes and got excited because she thought they were for her and she wanted to try them on. Boy did she get mad when she found out they were not hers, but the baby's!

it's september!

After weeks of miserable heat we are finally getting a break. The weather has been beautiful the past couple of days. The kids can finally play outside without the risk of a heat stroke! Who knows how long this great weather is going to last, so we have been outside enjoying it. This weekend we also got some much needed rain form the outer bands of the tropical storm in Louisiana, if only the rest of Texas had gotten some also! I also had a great baby shower this past weekend, it's hard to believe the baby will be here in a couple of short weeks!

first day of school

The boys had their first day of school today. I can't believe how fast the summer went by! Dario started third grade and Aiden is now in second grade. They both had a good first day and rode the bus home for the first time. They sat by each other and with the help of the bus driver got off at the right bus stop. The girls and I walked down to meet them right as the were getting off the bus. They ran over to us and were so excited to tell us all about their day.

one last vacation before school starts

This past weekend we went on one last vacation before school starts. We went to a state park and stayed in one of their cabins. My parents and my sister's family also came. Unfortunately because of the bad drought we're having here the lake was really low and there wasn't any water left under the fishing piers by the cabins. There was also a burn ban, which meant no camp fires. Because the lake had receded so much, when went swimming in the lake there was about one foot of shallow water and then it dropped off over the kids heads. Luckily the older kids are pretty good swimmers and the younger kids stayed on the shore playing in the sand. Despite all this we still had lots of fun and the kids had a blast getting to spend time with their cousins. On our last night there the lake got some much needed rain; a big storm blew in with lots of thunder and lightening. The next day when we got home, we also got some much needed rain!

the dog days of summer

The last part of summer always seems to drag on and on, with each day hotter than the last! I am so ready for summer to be over and fall to be here. When I took these pictures of Ava playing outside it was around 7 o'clock at night and was still hot; her Popsicle started melting immediately. I am also counting down the days until the end of September, being 8 months pregnant in 100 degree heat is no fun! We have decided on a name for the baby. Brian and I both came up with the same name on our own, without mentioning anything to each other. So we figured that it must be fate that our baby girl be named Dahlia. Now we just have to come up with a middle name!

conversations with Laila

Recently Laila drew me a picture. She gave it to me and told me about all the different colors that she used. When she got to white she said, "this color is white, it's not a very interesting color; it's not a favorite color of the rainbow." I love the age she is at now, 2 year olds say some of the cutest things!

from this weekend...