A Bad Dream

I feel like I am living a really bad dream, and it's only getting worse.

Dr. K came and talked to my husband and I last night. He had just finished closing Gracie's left wrist because the bleeding had just become to severe to continue to try and control. He and Dr. Kaza were able to do a new cut down on her right wrist and things went fine. He told us that Gracie is no longer a candidate for the Berlin Heart. After his discussions with the Berlin Heart director and the rest of the cardiology and surgical team, they decided it would be 'off the charts' risky and there is no chance of successful recovery. After he talked to the director of the Berlin Heart he got some interesting statistics. They have done over 500 VAD's on children all over the world (About 175 in the United States). Of the 500, they have only done FOUR on children AFTER transplant like Gracie. Of those FOUR, only two recovered from the surgery and only ONE made it to transplant and they don't even know if that person survived after transplant. They also feel that because she is too sick for the VAD, she is too sick for re-transplant and think that they really should not have re-listed her. I think we get comfortable with the word ECMO, but ECMO is LIFE SUPPORT!! This is serious stuff. A small baby on LIFE SUPPORT POST TRANSPLANT is just not a good candidate to recover from the VAD or re-transplant. Some of the reasons they told us as to why she is not a good candidate are: the immunosuppressants lower her ability to fight off any infection, new blood that's being introduced to her through ECMO is forming antibodies against a future heart, her bleeding, her swelling, her lungs, her possible neurological damage, and her overall weakness.

Some have expressed a desire to fast and pray for Gracie this Sunday. We are going to fast for courage, strength, and comfort, for us and for our children. And for the doctors to have clarity on her health care.

My husband said that it's like we've been saying 'goodbye' to her from the minute we said 'hello'. We're beyond grateful for the blessing that she has been in our lives. The past 11 months have been truly a gift. We recognize the Lord's hand in our lives and feel his comforting spirit carrying us through this most difficult trial. Many thanks for all of your prayers and support.

Gracie's Tree

We have great health insurance.

Some people don't.

And some people don't have ANY insurance.

I have gone to dinner with the same group of friends for about 12 years now. This group (shown in the picture) told me at our dinner in December, that they would like to do a tree this year for Gracie at the Festival of Trees in Sandy, Utah. I was so touched that they would think of Gracie so far in advance. They wanted to start putting money towards the tree every month at our dinner group. I told them at the time that I would love to help them out and that I would put something on my blog.

So here it is.

The Festival of Trees will be from Dec. 3-6 2009 at the South Towne Expo Center. 90,000 people attended last year. EVERY PENNY (100 %) raised at the Festival goes to provide medical care for needy children at Primary Children's Medical Center. All the trees are donated and then sold at a silent auction on Opening Night (Dec. 2), which is an invitation only event. Any tree not sold on opening night is available for purchase during festival week.

Some of the trees can be quite elaborate, others small, but each one is special. We would like Gracie's Tree to stand out above the rest!! You can even pay the $4.00 admission and come and see her tree there! I have set up a 'donation' button on my sidebar (Thanks to my sister in law Tiffany!) ALL of the money we collect will go to decorating Gracie's tree, any extra will go directly to Primary Children's Medical Center.

So basically we purchase supplies for the tree, decorate it, someone bids (hopefully a LOT of money for it) and it ALL goes to PCMC to help the kids.

I don't know what I would do if I had to worry about money problems while going through all of this. I hope our collective efforts will come to benefit many, many other sweet children just like our Gracie Girl.

I hope I'm able to take her to see her tree. That would be the best Christmas present of all.

Thanks.

Berlin Heart

When I got here this morning they told me that her chest x-ray looked like her lungs were either collapsed, or that there was some fluid pressing down on them. Dr. K decided to do a wash out of her chest this afternoon. So the whole team (Dr. K, anesthesiologist, Nurse Practitioner, and LOTS of tech's) were back at it. The procedure took about 30-40 minutes. Dr. K said everything went well. They got a chest x-ray afterwards and everything looks good again so the wash out did the trick. Dr. K turned down the ECMO a little bit while he was doing the wash out and he said the heart (including the left ventricle) did a little bit of work but not enough to sustain itself. The heart is just not strong enough and when they say that they don't think the heart will recover, this is what they are talking about. It can still beat just a little and not be 'recovered'.

Before that procedure they started to come down on the amount of paralytic drug that they are giving her. She was moving around more and was more alert. She started to open her eyes.....the first time since surgery. She had cracked her eyes open a little bit and then I said her name and she opened her eyes as big as she could with her little eyelids being swollen. I just talked to her and she looked at me. I couldn't help but cry a little, I told her that she was the bravest girl I know and that I loved her. I knew she knew I was there. I don't think she could see me very well because they put a fair amount of lubricant on her eyes, but she knew my voice. My heart ached for her.

The big news of the day is that Dr. K came and told us they are recommending a VAD (the Berlin Heart) for her. This is literally a last ditch effort to save her life so we are going ahead with it. She will not survive on ECMO long term. It sounds like the opinions of the heart team were about 50-50 on the VAD issue. But the fact of the matter is.........Gracie will not make it, waiting for a heart on ECMO. If they get a heart before the VAD, they will still take it.

The procedure to put the Berlin Heart in is quite extensive and is very high risk. They know she may not survive the surgery or recover from it but it is her only hope at this point. They have only done the Berlin Heart TWICE before. One patient lived, one patient died. It is not FDA approved but they have been using it in the United States for 9 years. From what I have read on the internet the doctors around the country are pretty frustrated that it is not FDA approved yet. They have to order it from GERMANY and the whole Berlin Heart team comes in from out of the country (I think Canada) to assist with anything Dr. K needs during the procedure!!! We have been joking that Gracie is a drama queen and that she really does not need to go to these extremes to get attention! We will give her PLENTY if she would just stop the drama!

Now, there is a possibility they will not put the Berlin Heart in even when they get it. Gracie has to be stable and looking pretty good or they will not go forward with it. They are hoping to do it on Tuesday or Wednesday. It should be about a 6 hour surgery.

Here's the kicker. If Gracie survives the whole VAD surgery, they will take her OFF the transplant list until she fully recovers. Which they anticipate to be 4-6 weeks!! YEOUCH! At the time they deem her 'fully recovered', they will re-list her and the wait will begin, then of course after re-transplant she will have a 4-6 week recovery. I almost can't think about that right now. We will just have to take one day at a time.

Once they recover from the VAD surgery. They expect her to be extubated and back to 'normal' where you can hold her and it would be similar to how she was before this transplant.

So, this is a lot of information to digest. I said to a friend several days ago (after we heard Gracie was going to have to wait for a heart in the hospital). "Besides death, how could this get any worse?" Well, let's just say that I am eating my words now.

The day is almost over and there are three people at the bedside trying to control the bleeding from the cut down art line on her left wrist. It is hard to watch. Gracie keeps everybody on their toes.

Thanks for praying everybody........we feel lifted up by your prayers and support.

New Songs

Okay, I know, I have had the SAME songs on my playlist for more than a year now. I usually turn the music off and don't listen to it because I am tired of hearing the same songs so much! I wanted to add a song called "Gracie" along with a few others that were brought to my attention from a blog posting of Gracie on Paul Cardall's blog. Paul is a popular musician who has several CD's out with inspiring instrumental music. I have added some of his music to my blog as well. Paul is 35 years old and has a major congenital heart defect. Married, with a beautiful little girl, he is waiting for a heart transplant. He has quite the story and seems to have beaten the odds time and time again. We have Paul's CD's playing for Gracie in the hospital 24 hours a day and they bring a special spirit to her room. I am comforted that Gracie can hear the music and I know it helps her to have sweet dreams. Thank you Paul for the gift you have given to all of us through your music.


I can't believe how many people are posting about Gracie on their blogs. It appears she has captured the attention of many. I appreciate everyone's concern for a baby and family they have never met. I wanted to steal a bit of the post my friend Marci wrote about Gracie because she typed up the words to the song "Gracie" that I just added to our playlist. Click on it below and see! This is what it says:

You can’t fool me
I saw you when you came out

You got your momma’s taste
But you got my mouth

You will always have a part of me
Nobody else is ever gonna see
Gracie girl

With your cards to your chest
Walking on your toes
What you got in the box only Gracie knows

And I would never try to make you be
Anything you didn’t really wanna be
Gracie girl

Life flies by in seconds
You’re not a baby Gracie, you’re my friend
You’ll be a lady soon
But until then you gotta do what I say

You nodded off in my arms watching TV
I won’t move you an inch
Even though my arm’s asleep

One day you’re gonna wanna go
I hope we taught you everything
You need to know
Gracie girl

There will always be a part of me
Nobody else is ever gonna see
But you and me
A little girl

My Gracie girl

I cannot get over this song!!! A song named Gracie? A song that says Gracie Girl? A song that says 'Life flies by in seconds'? CRAZY, CRAZY, CRAZY. Like the song says "What you got in the box only Gracie knows..........."

Primary Graft Dysfunction

So the term for what Gracie's heart is doing is called primary graft dysfunction. This only happens in maybe 25% of heart transplants nationwide and has only happened less than a handful of times in the last 20 years at PCMC. Most of the 25% that had graft dysfunction had other problems like a bad cross match, pulmonary problems etc. Through testing, they found Gracie to have NONE of these problems. Which means...........Gracie is a complete MYSTERY!! We talked to the new heart doctor here, Dr. Kaza (the doctor who went to get Gracie's donor heart). He has personally performed about 60 pediatric heart transplants and has had this happen only ONCE.

I copied and pasted the following from the National Heart Lung and Blood Institute's website:

Primary Graft Dysfunction
The most frequent cause of death in the first 30 days after transplant is when the new donor heart fails and isn't able to function. This is called primary graft dysfunction. Factors such as shock or trauma to the donor heart or narrowed blood vessels in the recipient's lungs can cause primary graft dysfunction.


They did an echo on her heart yesterday afternoon and found that the left ventricle is still not squeezing. The right ventricle is but the left is not. Really no change from post surgery. They will probably trial her off the ECMO machine on Thursday or Friday. Based on the echo yesterday, our transplant doctor is less optimistic now than she was before. I think all the doctors have hoped that Gracie's left ventricle would improve with time and they have not seen that happen.

Yesterday she was bleeding a lot through the cut down on her wrist. So much so, that they had Dr. K come in and put a few more stitches in it. This morning it had slowed down. We talked to Dr. K for quite a while last night about her situation. He said he was discouraged by the findings of the echo that found her left ventricle was still not working. Anyone who knows Dr. K, knows that 'discouraged' is about as negative as he gets. He seems to be the eternal optimist. He was the only one who thought she had even a slight chance of coming off ECMO the first time around. He also said that the chance of her heart recovering at this point is 'unlikely'.

So, this is what I understand is going to happen. They will trial her off the ECMO machine in the next couple of days. They do not anticipate her heart recovering. If (and it sounds like when) she fails the trial, they will put her back to full function on the ECMO machine and wait for a new heart. In her condition, she would only last on ECMO for maybe two at the most, four weeks while waiting for a new heart. The team is discussing whether or not a VAD (ventricular assist device) would be a good idea for Gracie. This would enable her to wait a lot longer for a heart. Getting a VAD put in is a risky procedure in and of itself so they may not recommend it for Gracie.

Today has been fairly quiet for her. Other than her bleeding, there is nothing else they are working on. It sounds like our only real hope for her is for her to get a new heart. Dr. K said he would take a new heart for her at any time but that she would have a better chance of surviving re-tranplant in a few more days when she is not as swollen etc. So let's pray for round two this weekend!! I'm totally up for another 13 hour surgery ;)

ECMO.... ECMO..... ECMO...

We have a love/hate relationship with ECMO. It is keeping her alive and giving her body a chance to rest but it is also causing her some serious complications with her bleeding. When you have so many tubes in your body, the body naturally want to make clots to fight against the foreign objects. To combat this, they have to 'heparinize' her blood (make it thinner) and in doing so, she bleeds a lot heavier and easier.

I took this picture this morning.......like deja vu from our last go around. When babies are on ECMO they give them a paralytic so they cannot move at all. So she is completely out on some heavy drugs. It doesn't feel like I am with my Gracie, not the Gracie I know. She lays there non-responsive in a coma like state. It is really hard to go from holding your baby whenever you want at home, to petting your child on the head and holding their hand or rubbing her foot. They don't have many plans for her today. We are still just watching and waiting. Our nurse said that when she was changing her chest dressings she thought she saw slight movement of the heart which is an improvement from yesterday when there was no movement. Her bleeding has slowed down a little from yesterday due to some special drugs that are helping her with that.

Waiting and watching.......that's what we are doing right now. Thank you for all of your prayers.

My Gorgeous Gracie

This is Tom posting.

I was told that’s it my turn to post, so here goes! First of all, thanks for all the kind words on the comments from Michele’s last post about keeping me in your prayers! I can’t truly express adequately with words just how grateful we are for the many prayers, the faith, hope, love, support, and sustenance that we’ve received and continue to receive!

This seems strange to share, but for some reason I feel like I need to today. Just after we returned back from seeing confirmation on the high risk ultra-sound that my sweet baby did indeed have HLHS, I was working at my office, concentrating on a work related issue, and out of nowhere, I felt literally surrounded by the comforter. This continued day after day, and it was a truly remarkable experience. It took me some time to realize that this was a gift that was being given to me during this time we have with Gracie. I can literally feel the prayers of love and support. At this awful time, when I’d rather be anywhere other than here, I am being buoyed up by all our amazing family, friends, neighbors, and new blog friends. I know that we have a lot of family members out of town that would love to be here to support us and we want you to know that we are being strengthened by your prayers. Thank you, thank you, thank you!

I also want everyone to know that we are willing to fight, kick, scratch, do anything necessary to give Gracie the very best chance at living a happy life!! So don’t give up hope, we’re not! Again, we don’t know where the road we’re on will carry us, but we’re absolutely here for the ride!!

Update on Gracie: She was listed this morning for a new heart. We’re so grateful for the wonderful, amazing donor family who gave our daughter a chance at life. And we're doing everything possible to help make this heart work for Gracie. This is probably her best shot. But we’re also grateful for the chance to possibly get a heart that has a little more giddy-up in it!

They’ve done the regular stuff with Gracie that occurs with ECMO babies….brain scans for bleeding, echo’s of the heart, X-rays of her lungs, etc. Dr. K. also did some work on her this morning, clearing an air pocket that had collapsed her right lung, and adding a couple of new chest tubes to help clear the excess blood. She remains stable, and is still recovering from the surgery. When I came in, I asked them to put a blanket over her, for some reason, I just need to see that she has a blanket. We talked to the ICU doctor this afternoon and he just wanted to get a feel for how we were feeling about the whole situation and what we wanted to happen over the next few days as far as what our wishes in regards to how long we want to do this. In talking with him further, he said that chances of her heart working when it never worked in the beginning are under 10 percent. The problem today is that she is bleeding quite a bit and they cannot seem to get it under control. Our response to him was that we want to give her a few more days and see how she is doing. We feel she'll let us know.

Thanks again to everyone for all you do!!

My Heart Is Broken

We ended up in the waiting room until a little after 8:00 (13 hours total by the way!). We finally called and asked if we could come up and see her. They said that they had to do another procedure on her but that we had been through so much before with her on ECMO, that they let us in to sit outside her room. When we got there Dr. K said that one of the cannulas (the needle like probe that is in her heart hooking her to the ECMO machine) was not functioning properly. So they had to scrub in like a surgery at her bedside and re-insert the cannula. The procedure took a little while but went well. There were several medical personnel at the bedside like there always is right after surgery, so I didn't go to see her until maybe 9:30. It was so hard to see my sweet girl on ECMO AGAIN!! I have to admit, I have been feeling kind of sorry for myself that I have to endure the trial of ECMO again. I kind of thought I learned all I needed to learn the first go around but apparently I was wrong. Gracie looked bad, like you would expect right after surgery. Her chest is open with the cannulas inserted into her heart coming out to the ECMO machine. She has chest tubes again, is on the breathing tube, has a cut down arterial line in her left wrist and looks overall like any of us would after 12 hours of you know what.

The transplant team called tonight and told me that the cross match of her antibodies came back negative. Meaning, she is NOT acutely rejecting her heart. They said this is good news in the sense that you never want them to reject the heart. The only way to know for sure is if you get a piece of heart tissue to test. They are still going to do plasma pherisis (where they separate the plasma out of the blood and put donor plasma into her) Plasma is the part of your blood where you carry the antibodies that would attack and reject the heart. They are going to do this as a precaution even though the tests came back negative.

After talking to everybody today, it is our feeling that we probably just got a bad donor heart. It did not look bad until they unclamped the lines. Dr. K. would not have put a heart in her that he did not think would be viable. They say that it doesn't happen very often but it can. And we all know that if there are some statistics out there where there is a 1% chance of something happening, Gracie is your gal! She likes a challenge.

We are in another wait and see what she does mode. Just like last time. Time will tell. The doctors and transplant team are not giving up on her and neither are we.

They may re-list her for re-transplant tomorrow, we are just going to see how she does overnight. She could be a candidate for the berlin heart but it is too soon to really say what we are going to with her.

Oh Gracie, I can't believe you are taking the hardest road possible, AGAIN. There are hundreds of people pulling for you who love you. We don't want you to be in pain anymore. Please recover quickly. Please tell us if you want to stay on earth with us. We would be so privileged if you do. We will listen to you like we listened to you before. You and Heavenly Father have a lot to think about. We love you so much. Your brothers and sister will be devastated if you go. Sleep well my little one, may the most precious guardian angels watch over you tonight. I will see you in the morning.

Update #14

Dr. K came in and talked to us for quite a while. He expressed his disappointment that this has happened. He does not know why. He said he knew something was wrong right away when he unclamped the lines that went to the heart and it did not respond like a healthy heart. He said it could've been a problem with the transplant but he does not think so. He said it could be her body rejecting the heart, we will find out when we run the cross match on the blood. He thinks we may have gotten a bad heart, he just doesn't know right now. He said 'this is not what Gracie needs'. We have to hope that her heart will recover with rest. She could be on ECMO anywhere from 5-7 days. I don't know how my posts are coming across, but this is very serious and obviously NOT good news. I just wanted to clarify that. We have not given up hope, but the odds are against us again. We should be able to go see her in about 20 minutes. We will pray for another miracle and if the Lord has it in store for her, he will grant us another miracle.

Gracie's Heart Is In Rejection

We just talked to Dr. Everitt, the transplant doctor and she said she thinks Gracie's body is rejecting the heart. They are going to bring her out of surgery on ECMO. They are going to try a process called firysis (sp?) which means that they will try to extract the red blood cells and inject her body with red blood cells that will not attack the heart. They think that she had some antibodies that either did not show up on the test or grew higher in the last few days and she is now rejecting her heart. They are going to put her on a very strong immunosuppresant drug and work on the red blood cells and see how she does over the next 72 hours. They are running a cross match with Gracie and the donor's blood. This will give them a definitive answer as to whether or not her body is truly rejecting the heart. If it is, they cannot re-list her for another transplant. Dr. Everitt thinks we can get on top of this with the treatment I mentioned above. Please continue to pray for our GRACIE GIRL!!

Gracie, Late Last Night Waiting For Transplant

Oh my sweet baby. We love you dear!

Update #11

Dr. K just came out and said that the left ventricle is moving just a little bit. They are planning for her to come out on ECMO because it is not moving near where it should be. They think the time that the heart was out of the body was a little longer than they would like, but they had no control over that with the amount of travel time etc. He also had a little more repair than he was planning on with the pulmonary arteries. They are going to watch her for at least another hour. I asked him if a transplant had ever come out on ECMO and he said 'yes'.....I asked him if they lived and he said 'yes'. We will have to wait and see what is in store for our Gracie Girl.

Update #10 Not So Good News

We have just been told that the left ventricle is not working. They are watching it and are going to do an echo to see why the function is not there. They are talking about a back up plan being a bridge to ECMO. Meaning she would come out of the operating room on life support. She did not elaborate any further.

Update #9

Gracie's new heart is in and beating!!! They are done with the aortic repair. They now have to put in pacing wires, do an echo, de-cannulate and close her chest. So we have a ways to go but this is a BIG hurdle we have jumped. Go GRACIE GIRL!

Update #8

The new heart is in and they are sewing in the atrium. She is still on bypass and I assume the next update will be whether or not her heart will beat on it's own.

Update #7

The heart is here!! We are so grateful to everyone........the precious donor family, the doctors, the nurses, the surgeons, all of our friends and family that are praying so hard for us right now, thank you!

Update #6

Gracie's chest is open, she is on bypass and the HEART IS NOT HERE YET!!!!!!!!! I am starting to freak out.

Update #5

They have made the incision......the heart should be here in a half an hour.

Update #4

Dr. K came in and said they are going to get started. This is so surreal!!

Not Yet (update #3)

Dr. K just came in and it looks like there was a small misunderstanding. We were told that Gracie's heart got here at 5:00a.m. Dr. K. told us that 'the team' flew out to the undisclosed hospital and have just barely gotten to see the heart. The heart looks really good but they have not taken it out yet. They have to coordinate with all the other teams that are there for the other organs. The other teams have to be ready to go because the heart is taken first and then the other teams follow. I hope I don't sound careless with all these details. We are SO grateful to this precious family for giving our baby life when they have just lost theirs. They will never know what they mean to us. Maybe some day we will be able to contact them.

Dr. K. said he expects to make the incision at around 10:45. He will then do the surgery for about 1 1/2 to 2 hours. He said someone will let us know when they have made the incision. We will post later. Love to everyone out there praying their HEARTS out for our girl!!

Lines Are In (update #2)

Dr. Kouretas just came into the waiting room and told us that all the lines are in and they are just waiting for the team to assemble. He expects to start the surgery at about 10:00a.m. Thanks for all the prayers!!!!

p.s. We are enjoying the waiting room ALL TO OURSELVES!!!! Last time, we were the first ones in the waiting room and the last ones to leave. It was hard to sit through family after family leaving after the doctor came to tell them that the 'surgery for the tubes in their babies ears went well' etc. etc. I silently thought to myself "Do you know what I would do to be here for tubes in my baby's ears????" But we are so lucky to have some EXCELLENT surgeons taking care of our girl. We will post later.

The Heart Is Here (update #1)

Late last night they changed the surgery time from 5:00 a.m. to 7:00 a.m. It is 7:12 a.m. and we just said goodbye to our Gracie Girl. This time it was more of a happy goodbye. We really think this is going to work out! We told her she had been a very good girl and that the next time we see her she is going to be nice and pink with saturation levels in the 90's instead of 75-85! I still think I'm in shock that this is all happening. I have only had a week and a half to wrap myself around the whole transplant idea and now we are in surgery, what an absolute miracle!! I am very humbled by the events that have transpired for Gracie to get to this point. We feel the Lord's hand in our lives more now than ever before. We know he has a special plan for her. I will update whenever I hear something from the surgeons.

WE LOVE YOU GRACIE, YOU GO GIRL!!!!!!!

Get Some Sleep

We are here and have talked to the transplant doctor and our surgeon and it looks like they won't take her back into surgery until about 5:00 a.m. So we're looking forward to a long restfull night, yeah right!!! I am still freaking out!!! We are nervous and excited and scared and happy. Please continue to pray for our sweet GG!

GRACIE IS GETTING A HEART!!!

This is Tiffany, Michele's sister-in-law, Michele asked me to post. They are on their way to Primary's after just getting the call that they have a heart for Gracie!!! They don't have many details at this time but they know it will happen in the middle of the night or early morning. We will post more as soon as we know anything but please pray for our sweet Gracie tonight!

Tiffany

Happy 11 Month Birthday Gracie!!

I took several pictures of her awake but she did not look happy in any of them so I thought I would post a picture of her asleep instead! Happy 11 month birthday to my girl. Now I am going to wonder what life is going to be like in one more month. Will she have a new heart for her one year birthday? I sure hope so, but we will try our best to be patient with the Lord's time frame for her.

Gracie is doing really well. They are weaning her off her high flow oxygen and talking about moving her to the third floor tomorrow. She still has yet to smile even ONCE since she's been in the hospital. But I have noticed in the past that if she is feeling the least bit crummy, she doesn't smile. And I would have to say that she still has plenty to feel crummy about!!

From here on out I will probably only post if something important happens. Although you just never know when you are going to wake up to a post that Gracie got a new heart during the night!!! I asked the transplant coordinator if there is a typical time of day that donor hearts become available and she said a lot of times it happens in the evening or night time. This is because the donor is usually on life support that they turn off in the late afternoon after the family has had enough time to say their goodbyes. It makes me sad to even type this information. But what a wonderful thing that family will be doing for not only Gracie, but many other families that will use the other organs if they choose to donate more than just the heart. We will be eternally grateful to them.

Maybe our next post will be from our new 'digs' on the third floor!