7 months old & we're home!

It's been an exciting past couple of days.  Dahlia turned 7 months old and after 7 long, intense, life changing months we are finally home!!  After only being able to see Brian and the rest of the kids on the weekends it has been heaven being together again.  I'm not going to lie there have been times I've wanted to pull my hair out trying to organize all of Dahlia things in our extremely small house, and tyring to get her back on her schedule again, but we have made it work.  One of the hardest things for me about having a child that has had a heart transplant has been trying not to worry constantly and feel sad about her future, the worry is always there and can really wear you down.  Well recently I have stopped worrying so much.  Our family was able to meet with a young man in his twenty's who had a heart transplant as a baby.  He is actually serving as a missionary for our church and is new to our area.  Let me tell you the odds of just running into someone that old, who had a heart transplant as a baby are so extremely low, that I know meeting him was not a coincidence.  His story was so uplifting, and he has led a normal life, even playing sports while he was in school. I know our journey with Dahlia may not always be easy, but it will be one filled with HOPE, joy, and love.

update on Dahlia

My little tiny baby finally fits in size two diapers! She has been doing really well since her heart transplant and her new heart is functioning great.  She now has her doctor appointments every other week instead of every week.  There are many things that can go wrong in the months following a heart transplant.  Luckily, Dahlia's recovery has gone really well, and we haven't really had any major issues come up. Thank goodness for this!  I am by myself taking care of Dahlia during the week, and this mama does not need anymore scares for a long time!  I am also blessed that she is a very good natured, happy baby, which makes my job a whole lot easier.

Easter Weekend

I love weekends because Brian and the other four kids come to Houston to join me and Dahlia. Easter weekend was especially nice because they were able to come on Thursday night. We had a nice relaxing weekend. I got to spend time with the kids and Brian, and got to get out of the house for a bit with my sisters. Brian is such a great dad, when he comes for the weekend he takes over ALL of Dahlia's care to give me a much needed break.  On Saturday we had an Easter egg hunt with my sister Lauren's family.  On Sunday Lauren and I made Easter dinner for everyone.  It was my first time cooking a ham!  We sure missed mom and dad!


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