Beating Strong

Dahlia is out of surgery and her new heart is beating strong!  It is amazing to think that she has a new heart inside of her.  She has some swelling and her chest will be left open until the swelling goes down.  Other than that so far so good.  So thankful to the little angel who gave her a new heart, and to all the doctors who preformed the surgery.

we got the call!

Last night my sister Jessica and Walter stayed with Dahlia so that Brian and I could go back home and take care of some things. That night I put the cell phone right next to me in case Jessica needed to get a hold of us. Bright and early the next morning phone rang around 8:00.  I saw it was the hospital calling and thought, "oh no, what has happened now!".  It didn't even dawn on me that this could be THE CALL. When the doctor told me that they had a potential heart for Dahlia, it was best phone call I have ever received!   A team of doctors would be flying out to examine the heart and bring it back.   I called Jessica and no one had told them yet what was going on because they were not the parents.  However she figured it was something big because there was lots of activity going on in Dahlia's room.  We rushed to get ready and dropped the kids off at Brian's parents house, then we drove to Houston in record time! When we got to the room Dahlia was peacefully sleeping, despite all the activity.  A doctor explained what would happening, and after a brief waited we wheeled Dahlia in her crib, to the surgery area and gave her a big kiss before they took her back.  I didn't think this day would ever come, words can not describe how grateful we are to the donor family who are experiencing a horrible loss, while we are experiencing great joy.  Dahlia is now in surgery and we are praying all goes well.

from this week...

When you know time with a loved one might be limited, each day is a precious gift.

out of the I.C.U.

Dahlia is out of the I.C.U. and in her own private room.  It is exhausting to sleep there at night after a long day, with nurses coming and going all night long, but this little girl deserves it!  After a month of not being able to be held, she is loving being held and cuddled.  Dahlia is an extremely social baby and smiles and tries to talk, as best as a baby can, to almost everyone who comes into the room.  All the nurses are in love with her.  As great as Texas Children's is, I hope we are not there forever!  There is a nine month old baby, who is also on the Berlin Heart, who has been waiting for a heart for five months.  Nothing teaches you endurance and patience like an extended stay in the hospital!  It is amazing how many blogs and articles online I have found of families, who have gone or are going through the same thing.  This article is inspiring, and this blog gives me lots of hope.

Dahlia is active once again on the transplant list! She has beat the infection that almost killed her.  She also made it through two operations to clean out bleeding and blood clots from around her lungs; her lungs are improving and she is almost off all supplemental oxygen.  This is one tough little girl.  Yesterday, I got a wonderful early Christmas present, I got to hold her for the first time in one MONTH!  Her poor little head is all misshapen from having to lay in bed for so long.  Despite the circumstances she has been smiling and laughing a lot. It's so good to see her getting back to her old self.  The Berlin Heart was approved by the FDA last week.  The doctor told us that if Dahlia did not have the Berlin Heart her infection would have killed her, now this life saving device will be widely available. Have a wonderful Christmas, enjoy the gift of today that you have been given.  Spend time with those you love and let them know you love them.  Give a gift that can save lives, become an organ donor.

rollercoaster ride

It seems like around here it's just one thing after another. Just when it looked like Dahlia's recovery was going well, she gets hit with a blood stream infection caused by a nasty bug that likes to lurk around hospitals. There are some things in life that just aren't fair and a suffering baby has got to be at the top of the list.  She'll be made inactive on the transplant list until her infection is gone.

                                            Dahlia's Berlin Heart

update

Our brave little girl is recovering well from her surgery!  Her doctor told us that she is the smallest baby they have preformed that surgery on. Either tomorrow or the next day they hope to get her off of the ventilator.  Then, in the next couple of weeks if all goes well she will be out of the I.C.U. and in her own private room where I can stay with her.  While she has the Berlin Heart she can be held and physical therapists will work with her so that she is not to far behind in her development. The main goal is to get her healthier and stronger for her heart transplant. Several days ago while we were in the waiting room there was the cutest little four year who had a heart transplant when she was a baby. She was so full of energy and life, it was a good sight to see!  Yesterday Dario told me that what he really wants for Christmas if so for his baby sister to be better. That would be the best Christmas present ever. 

Berlin Heart

On Wednesday Dahlia had an operation to give her a Berlin heart. It is a device which assists the heart with pumping, in order to keep extremely sick patients alive until they receive their new heart. We had to be at the hospital at 6:00 a.m. When got their Dahlia was awake with her eyes wide open. That was the most alert I had seen her since she was readmitted to the hospital. She stared at Brian and me for the longest time. It was good to look into those sweet eyes again and let her know we where there. There's a lot you can communicate just with the eyes, she was looking at me so intently, that I hoped she wasn't telling me goodbye. Finally at around 9:00 a.m. Dahlia was taken back for surgery. Each hour we were given updates on how the surgery was going. It went well but towards the end the Doctors were having problems controlling her bleeding and getting her stabilized. The surgery ended at around 7:30 p.m. and we were not allowed to see her until 10:30 p.m. When I finally got to see her it was a horrific site. She was lying there heavily sedated but her eyes were wide open. She had a huge cut down her chest, drainage tubes everywhere, and the Berlin Heart which is outside her body with blood pumping through it. Since then there has been ups and downs. I don't know if she will continue to stay and fight for her life or move on to a better place where she will once again be whole and happy. However, I have come to terms with either outcome and know that in the end everything will be okay.

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!