Rough Night

Hailey had a bad night last night. Around 2:30am sirens started going off like crazy. I was in the room with her and jumped up as they were giving her chest compressions and breathing for her. Her blood pressure dropped and her saturations were down to 30. Her pacemaker kept her heart rate at 100bpm, but she couldn't get it any higher on her own. After several minutes of this, she finally recovered. They believe it was pulmonary hypertension. So right now she is heavily sedated and no one is allowed to touch/stimulate her until she has recovered more. There was even talk about going back on ECMO if her saturations did not improve by this afternoon. She managed to get them back up just before the afternoon to avoid ECMO.
Please send out your thoughts and prayers that she continues to improve and do well. We want to take our girl home by Christmas.

A little too late for me, but maybe there is hope for others who are reading.

Children's Hospital of Boston is conducting a clinical trail in which they do heart surgery while the baby is still in the womb! They have determined how HLHS begins - it begins as Fetal Aortic Stenosis, and develops into HLHS as the baby develops. By inserting a needle through the mother, into the womb, and into the fetus, doctors have been able to open the small Aorta. They have done this 70 times and relieved the effects of HLHS 51 times. And 17 of those children have been born with two functioning ventricles!

Yes, it is still an experimental procedure, but they are showing decent results, and perhaps it is a prelude to the future.

http://circ.ahajournals.org/cgi/content/abstract/CIRCULATIONAHA.109.848994v1

A few more pics

Tree of medications

Our little love bug!

Chemical burn on her right arm due to a faulty ART IV. :( Poor baby girl.

Out of surgery

Hailey had another long day. She went into the OR around 9am to get her permanent pacemaker inserted. She also got her chest closed at the same time. She came back to us around 1:30 in the afternoon, not doing so well. Her blood pressure was bad and so were her oxygen saturations. Her oxygen sats were in the low 40's! She really scared us for the first hour that she was back. She is doing better now though. Her sats are hanging in the high 60's right now. They should keep improving throughout the night.
Another negative is her ART line in her right arm is leaking and has caused a chemical burn under her skin. They are using that line to monitor her blood pressure only now. They can't even draw from it. They have been trying to place a new ART line for 2 hours and were unsuccessful. They will try again in the morning after giving her veins a break. They feel she is stable enough to draw her labs from her PICC line for now.
We do need prayers to keep her oxygen levels up though. The next step is weaning her off of the nitric oxide and then the ventilator. They hope to do both of these in the next 2 days. I will update later with some pics of her arm as well. But for now, here are some pics of our girl with her chest closed. Since all of my followers have been through this before, I'm sure you understand why I am posting these. Also for other people who have yet to go through this as they wait for their HLHS babies to be born, it's important for you to see this.

We are hoping for a speedy recovery now that the hardest parts are over. She should be free from surgeries now for a few years. That is a huge relief off of our shoulders!

Back to the OR

Hailey will need more prayers for tomorrow. She will be going back to the OR. They are going to place permanent pacing wires and a pacemaker and also closing her chest. It's another risky procedure and she could use all the prayers and thoughts again. She will be going in around 9am and it should be a couple of hours before she's out.

She had a great night!

Hailey is doing great this morning. She had a very good night. Her only problem is being swollen, but that was expected. They will be giving her a diuretic to help her pee and get rid of the fluid. Should have her chest closed by friday. I wish I knew what else to write, but I've never been the greatest at writing! Just wanted to let you all know how well she is doing. She still has the pacemaker on, they tried to wean it a bit, but she didn't tollerate it. They will keep trying for at least 2 weeks. If she can't get off of it, they will have to implant a permanent pacemaker. But that's ok, as long as she is still here fighting! They are already talking about weaning some meds!! We can't believe how well she is doing, keep it up Hailey!!

Hailey is back in her room and doing amazing! All her blood gasses look great, her color is great and so are all her vitals. Everyone is so amazed at how well she is doing. After given a 40% mortality rate today, I believe many many angels were looking over her today. I will be spending the night with her tonight, I just can't leave right now. I am so amazed at her strength! Here are a few pictures from tonight. I will have more posted once I go home and take them off my camera.

Right after surgery, she has GREAT color!

 Hailey just getting back to her room           

Hailey's plan for the day was on target!      

NO ECMO!!!!!!

We just got another update.HAILEY'S HEART IS BEATING ON ITS OWN!! NO ECMO!! We're still not out of the woods, she had to have her heart shocked (minor, and expected) but she is off bypass, now they just need to close her chest and get her cleaned up and back to her room. I will post a picture when she comes back. It will not be pretty. But it's part of Hailey's recovery process and it's very important to us. We also want to show everyone what a miracle she is. She will need a temporary pacemaker though until the inflamation around her new valve goes down. But she is doing amazing, may be another hour or 2 before we get to see her.

My aunt in law Jasmine bought our family some beautiful pieces of jewlery. The one on the left is for Hailey, middle one is for Josh and of course the last one is for me. I love these!

Thank you all so much for all your prayers and comments. They are really helping. And it means a lot to us knowing you are all thinking of us.

Stable

Hailey is currently stable on the bypass. They just finished putting in her mechanical valve and they are now working on her Glenn. They should be done in about 3-4 hours still. We don't hear much for updates but they are saying she is staying stable. Lets keep it up Hailey!

So very scared

In addition to Hailey's Glenn today, she will also be getting her tricuspid valve replaced with a mechanical valve. It is so rare to have these valves in babies Hailey's size, they searched high and low just for her and founhd her a valve (which costs close to $20,000!!! Thank god for insurance!). This also increases the mortality rate to 40% from this surgery. pray pray pray for little Hailey. Here is a picture of her new valve.

 

I'm so scared that she may not come back from the OR today. They are currently placing all her IV lines and the actual surgery will begin around 10:30 pacific time. I will post another update as I get them. 

Thank you for your prayers! 

Tomorrow

Tomorrow is the big day! Hailey willbe having her Glenn and a valve replacement. This is a huge surgery that will be all day. I am very scared! Please pray that she does not have to be on ECMO again and that she pulls through this surgery and will be home in time for Christmas, that is our goal. I'm so scared she may not make it, but I have a gut feeling that she will be just fine, there is still that possibility that I may be wrong. We can't loose her, we just can't. She's come too far to fail now. Please pray for us tomorrow, her surgery begins around 8am pacific time. I will try and post as many updates as I can.

Now I Lay Me Down To Sleep

This great organization came to take pictures of Hailey this past Thursday. They usually take photos of babies that have passed, but they also take pictures of babies that may pass soon or are at risk. Their website is www.nowilaymedowntosleep.net and they did some beautiful pictures of Hailey. If you would like to view them go to www.collages.net and the user name is Hailey the password is 16832. Let me know what you think! We should be getting our CD copy of the pictures soon so I can actually use some of the pictures.

We have a date.

Hailey will be having her Glenn procedure on Tuesday November 24th. Right before Thanksgiving :(  I am not looking forward to this day, but I do know it will help get her home. I just hope these next 2 weeks fly by! Please send prayers for us on Tuesday! I will try and keep this blog updated during the day for all my followers.

On the other hand, guess who just got her first 2 teeth?? She just turned 4 months old today and two little teeth sprouted yesterday! She's so ahead of the game!!

She was mad that I took her fingers out of her mouth to take a picture. :)

Mommy and her Angel

A new "set in stone" plan!

So after 2 conferences with the cardiologists and with Stanford, we have decided to stay here at Doernbecher's for Hailey's next surgery. It will be in her best interest as a heart transplant won't work well with Hailey. Stanford also wants to be too aggressive and try and fix too many things at once where Dr Armsby and Langley here would be a lot more careful and only fix the 3 things needed at this time, saving the other 2 for her Fontan surgery in a couple of years.
If she were to wait for a heart in Stanford, their average wait time is 4+ months. That is not fair to Hailey, especially if she can't wait that long. We would rather have her here close to home. That way if anything were to happen, we will be very close by. If something bad were to happen while at Stanford, Josh may not make it in time with trying to get on an airplane to be with us.
The doctors here at Doernbecher are in a meeting about Hailey as I write this. They are making decisions and thinking of a date for her surgery. I will post more after they get out of their meeting and come speak to us.

We're going to Stanford

Looks like we will be off to Stanford within the next week. Hailey will be having her Glenn procedure down there because her first open heart left her on ECMO, they are afraid she may be on it again after her Glenn. This Glenn is not the typical Glenn either, it's much bigger. They will be fixing two leaky valves, her aortic arch, a few arteries, and doing the Glenn. All on one surgery! So if she does end up on ECMO, it will be much easier for her to already be at Stanford. She will be getting a transplant if things don't go well during this surgery and transporting a baby on ECMO from Portland to Stanford is not a good idea. So it's best for her to be in the right place to start off.

Other than that, Hailey is doing amazing. She is bringing objects to her mouth and chewing on them (great hand eye cordination) and she is starting to drink small amounts from a bottle as well. She is acting like a normal baby and I just love getting to cuddle with her on my shoulder, she falls asleep everytime! I am not looking forward to seeing her go through another surgery, but hopefully this will be the last one for a long time. Please pray for Hailey that she makes it through her Glenn without being on ECMO.

I will update more throughout the week as we get more information as to when we would be leaving.

 

Hey all my blog followers!! Got a christmas card?

This was just posted on a blog by a friend of mine..... let's get this little boy some Christmas cards from all over the country! Everybody has a left over Christmas card sitting around right?

PLEASE HELP!! Diana Harrison Biorkman has a 5yr old son Noah,He is in the last stages of a 2 1/2yr battle with Neuroblastoma Cancer.The family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards..Lets get him some Please send cards to: Noah Biorkman 1141 Fountain Viewcircle South Lyon,Mi 48178 Thank You!!

If you don't mind... please repost on your blog to get your followers!!!

http://www.zimbio.com/Noah+Biorkman/articles/bJCw9GM08Eq/Noah+Biorkman+Dying+5+Year+Old+Gets+Early

Still waiting

Still no word from Stanford as to what the next step for Hailey is. I guess they requested more information and they now need to look over the new information. So now it will be sometime this week when we finally hear what they recommend. We still pray that she won't have to have a heart transplant. I just want her to have the Glenn and come home.
In the mean time, here are some pictures of her on Halloween. The staff here at Doernbecher took these pictures of her and printed them off for us. There isn't a scanner here so I just took a picture of the pictures with my phone!!