Sunday, December 20, 2009

Hailey's Story

It was just after Thanksgiving when I told my husband that I was feeling a little sick. I thought there is no way I'm pregnant, I've been on birth control. But a few days later, the pregnancy test told us something different! We were both surprised, but also VERY excited. We both wanted children but we didn't think we were ready. I guess Hailey told us that it was time, and we were ready.
Then on March 4th 2009 we were so excited because we were going to find out if we get to pick out blue or pink clothes. We found out we were having a little girl, but at the same time the UT was taking a very long time with the ultra sound focusing on the heart. She later left the room and then the Doctor came in to tell us what first time parents never want to hear. "There's something wrong with the baby's heart" I don't remember much after that through all the tears. But we were scheduled the next day to get a Echo done at Doernbecher Children's Hospital in Portland, OR.
The night before the Echo, we were hoping the doctor was wrong, and that she just couldn't see the heart very well. We were hoping at this next appointment they would say "Oh she made a mistake, there's nothing wrong". But instead they said "Your baby has Hypoplastic Left Heart Syndrome" We were devastated.  Then they gave us three options. The first one was to terminate the pregnancy (no way in hell!!) the next one was to give her "compassionate care" (basically take her home and let her pass away) again, no way!! And the third was a series of open heart surgeries. Of course we chose the open heart surgeries. We wanted to give Hailey every chance at life that we could. We are not the ones to determine whether she lives or dies.
After that day, I spent most of my free time researching HLHS and other families going through the same thing. I met a lot of wonderful families and many survivors from HLHS. So we had lots of hope for Hailey.
Then on July 17th we had our scheduled induction date and after 30 hours of labor, Hailey arrived via C-Section at 4:09 pm on July 18th 2009. She was 7 pounds 12 oz and 20.5 inches long. She was BEAUTIFUL!
The sad thing was I did not get to hold her. They rushed her away to start running tests and placing IVs. I finally got to see her about 2 hours later. I still didn't get to hold her. I could only look and rub her little hand. The next 2 days were just the same. No holding, just standing over her little bed and rubbing her hands and letting her grab onto our fingers. On the morning before her surgery on the 21st, we finally got to hold her! That was one of my happiest moments since arriving at the hospital. Then they came in to wheel her away to her first open heart surgery at just 3 days old.
Her surgery was very long! 14 hours to be exact. The outcome was not good. Besides the HLHS she also had a very leaky tricuspid valve and coronary fistulas (where the veins leading to her heart to her lungs were too small). She came out of surgery on a machine called ECMO. It's basically doing all of the work her heart would do, because her heart was not beating on it's own. The next day she went to the cath lab where they inserted 3 different stints into these veins that were too small. Then 6 days later, she was able to come off of the ECMO machine! We were so happy!
But she ended up spending 3 weeks on the ventilator because she was so sick. After that 3 weeks they took out her breathing tube but she only lasted a day without it. After 3 more failed attempts it was determined that Hailey needed to go back to have another open heart surgery to fix her leaking tricuspid valve (the reason she could not get off of the vent) So on August 21st she had her second surgery. This one went much better! No ECMO and only a week on the ventilator. She came off no problem. Then about a week later she had an infection in her gallbladder so she needed to be re intubated because of the infection she was having a hard time breathing. She ended up getting a drain in her gallbladder which had to be left in for 6 weeks. So 3 days later she again came off the vent.
But this fix to her valve wasn't good enough. It needed to be replaced. She remained on an IV of Milrinone to keep her heart beating strong while she waited to grow big enough to have that valve replaced. During this time, we really got to know Hailey and her personality. She absolutely hated mornings (just like her mom) and she loved to be held and get all of the attention from anyone who was in her room. If you didn't pay attention to her, she would let you know she was there! She also loved her little mobile, her favorite piece was a little blue horse. We had many fun days with her as we played and held her as we fell asleep.
Finally on November 24th Hailey was big enough to have her tricuspid valve replaced and also have her next stage in the HLHS series, the Glenn. It was another long surgery but she came out strong! No ECMO again. She had a beautiful color and she even opened her eyes to peek at us.
Three days after her surgery her chest was closed. That's when all the problems started. The night she got her chest closed is the first time she crashed. Her blood pressure just took a nose dive. They gave her CPR and got her back in only a minute or 2. But then it happened again 2 days later. Again they got her back, but it took a little bit longer. So they decide she needs to go to the cath lab to find out what's happening.
December 2nd we give Hailey a kiss and tell her how much we love her as they wheel her down to the cath lab. Just a simple procedure right? Well just after they insert the dye they see the problem, but then she crashes and they can't fix the problem while giving CPR. They worked on her for almost an hour. There was nothing else they could do, she was gone. A stint had come loose and was blocking the blood flow to her lungs. I wish they would have gone to cath lab a lot sooner. But there is nothing we can do about that now.
My husband and I waited in her room as they bring her back in, still doing CPR to keep her heart going until they can put her in my arms. They stopped CPR and placed her in my arms as her heart took it's last beat. I held her for hours telling her how much I loved her and how sorry I was that this is how the end had to happen. Then mu husband also held her four hours as we just cried until we couldn't cry any longer. We then put her back on her bed and the nurses took out all her lines and IVs. Then we gave her a bath and put her in her last outfit. We said our goodbyes and left that hospital for the last time, without our baby girl. It wasn't supposed to be this way. She was supposed to come home for Christmas. I guess she is always here with us now, only in spirit.
I love you so much Hailey. I would give anything to have you back. But I know you aren't in anymore pain. No more doctor visits, no more poking and prodding. And no more surgeries.  

Rest in peace my Angel. I can't wait until I get to hold you in my arms again.




  1. I'm so sorry for your loss. I've been following your blog for some time now and was devastated for your family when I read the day of her cath that she was gone. It's always so difficult when a family member is lost but a child and your own child at that seems so unfair. Many prayers for you family and I hope someday you get to hold little Hailey once again as it's our belief in our family. Love, from California, Lorena Mora

  2. Thank you for sharing your story. My heart goes out to you. I've been thinking of you and praying for you as this will be such an emotionally hard Christmas. May your relationship with each other become stronger through all this. God's blessings to you.

  3. Thank you so much for sharing that story. Hailey was a strong beautiful little girl. Your family is ALWAYS in my thoughts and prayers.

  4. My heart breaks for you, thank you for telling Hailey's story. Our baby is due in April with HLHS and we are so scared for him but like you want to give him every chance possible. I will pray for your strength to get through this hard time. Know that you did everything you could and Hailey knew you loved her.

  5. My heart breaks for you and your family. I am glad you shared your story. I know the holidays will be hard this year and I will be praying for you and your family.

  6. This post brings tears to my eyes. The hospital stay is still so fresh in my memory. A CATH? after so many hours of surgeries? I don't know what to say, other than I am sorry. I can relate to some degree, since my Abi is just 6 days younger.
    But you know what else? God has His purpose in this. Haily is one of His most beautiful and beloved angels I will be thrilled to meet one day!

    New baby! Awww.. keep us posted!


  7. oh, sorry.. I read it again... I don't know what I was thinking.
    I'm sorry.
    I hope you are doing well..


  8. I know exactly where you are as we deal with the loss of Josiah. We will never know why this happens like this but I'm thankful for a God that can grant peace in the midst. Thinking of you.

  9. Thank you for sharing your experience. I, too, am the mother of a little one with HLHS. She also had a chromosome abnormality, which complicated her condition and her body's ability to handle the surgeries. She only lived for a year, but we felt so blessed to have that time to enjoy her. Sometimes it is hard to hear about all the "miracle babies" who are surviving and thriving. I try to remind myself that not all of God's miracles are given in the same way. I'm grateful to know that families are forever, and we'll see our little one again someday. I wish you the same comfort and peace.