family pictures

My sister Lauren, took family pictures of us, to celebrate Dahlia turning six months old.  We just love having her with us, out of the hospital.

big sigh of relief!

Today the other kids had appointments at Texas Children's to check their hearts. The type of heart defect Dahlia had can sometimes be genetic. On top of everything I already have to worry about, I have been worrying that our other kids might also have Left Ventricular Non-Compaction like Dahlia. Well, a huge weight has been lifted off my shoulders, after a thorough examination the kids hearts are healthy! Brian had his hands full, especially with Laila. She freaked out. Brian said she tried running down the hall to get away from the nurse. During her echocardiogram she was yelling, "I'm not doing this anymore!" and tried hitting Brian. Then, when she got home she told me the doctor put peanut butter on her chest when they looked at her heart (they had to put gel on her chest when she had her echo).

Ava stayed with us the past two weeks and was a big help! Dahlia loves her big sister.  I ordered this hat for Dahlia when she was a newborn and it finally arrived this past week!

goodbye hospital!

Dahlia was discharged from the hospital on Tuesday.  It would have been sooner but there was a debate about if Dahlia would need to leave with a feeding tube or not.  Luckily Dahlia gained some weight and showed the doctors she could handle a bottle just fine. Since we live more than 1 hour outside of the Houston area we have to stay in the area until 3 months post transplant; one down, two more to go.  Luckily, I grew up in this area and my parents still live here.  So, I will be staying at their house and do not have to rent an apartment or stay at the Ronald McDonald House like many families have to.  Leaving the hospital is both exciting and terrifying at the same time.  No more doctors or nurses to come running if anything goes wrong.  It's all on me now.  If I simply forget to shake her medicine she could end up back in the ICU.  Luckily so far there have been no calls to 911 or trips to the emergency room.  Aside from giving medicine around the clock it has been just your normal baby stuff; eating, playing, lots of smiles, sleeping, dirty diapers.  After almost losing her, normal feels so good!

soon we'll be out of here!

Daddy is here with us this weekend. We are learning everything we need to know to take care of Dahlia when we go home. How to dispense the 14 different medications she is on, how to recognize the signs of rejection. What she can do, what she can't do. It's a bit overwhelming, but in time I'm sure everything will become second nature.

5 months

Yesterday Dahlia turned 5 months old.  She has been in the hospital for all but two weeks of the time.  On Monday we are finally going to be discharged!  I am so ready to get out of here.  Dahlia got her feeding tube out yesterday.  I was worried about her being able to take all of those medications by mouth.  However, she actually seems to like them and happily swallows them down, thank goodness! Today here PIC line was taken out and as of now she has absolutely nothing in or attached to her and all her stitches are out. It is so wonderful to be at this point in her recovery.  There were so MANY times it looked like she wouldn't make it.  I thought I would never get to use all those diapers or cute little outfits I got from her baby shower. I thought I would have to plan a funeral. Watching her come back from the brink of death, and every thing we have gone through has been life changing. We won't be able to go home yet; we have to stay in the area for three months.  I'll take that any day over the hospital!

happy valentine's day

Our little valentine is doing good! Yesterday she was taken off all monitors, it is so nice not to have all of those leads stuck all over her chest. Now instead of constantly being monitored, her vital signs are taken every three hours. We just need to work on getting that feeding tube out.  Dahlia takes a bottle every three hours, but she has never been able to finish it, which is to be expected because she wasn't able to take anything by mouth for so long.  The doctor told us we could be discharged as early as next week!



I couldn't resist adding pictures of my other sweet hearts.  I hate that I'm only able to see them on the weekends.

Update

On Tuesday Dahlia's chest was finally able to be closed.  Thank goodness, it was hard to see her like that.  Today Dahlia was taken off the ventilator and placed on a CPAP, which she'll be on at least overnight. Her doctors are pleased with the progress she is making and said she has had a good week. When Dahlia was diagnosed with a severe, life threatening illness, I went through all the different stages of grief, especially denial.  It still completely blows my mind that after having 4 healthy children, my last, sweet baby was born with a heart defect, that caused severe heart failure, which led to a Berlin Heart, which led to a HEART TRANSPLANT.  Unbelievable!

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.