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.


Love,

Mommy

Hailey's Video

I made a video for Hailey, it hurt to watch but it does help.

http://www.youtube.com/watch?v=2LJY7gTHPcg

Rest in peace my beautiful Angel.

http://www.legacy.com/Columbian/Obituaries.asp?Page=Lifestory&PersonId=136938298

Funeral Info

Hailey's funeral will be Wednesday December 9th at Vancouver Funeral Chapel at 2pm. 110 E 12th St. And a viewing will be on december 8th from 10-5 at the chapel. There will also be a gathering after the funeral at the Dragonfly Cafe in the Clark County public service building at 4:30. Hailey's obituary will be posted in Sunday's Columbian. We would love to have every one of you there.

If you are reading this, you are invited. We would love to have all the people who care about her come and say goodbye.

I will update this blog when I am able to talk about everything that happened and what's going on in our crazy lives, hopefully in a couple of days.

I will post a link to her obituary too when I get one.

7/18/2009-12/2/2009

Hailey lost her fight to HLHS this afternoon. She did not make it through cath lab. Thank you for all your support and prayers.

Cath Lab

Hailey just now left to go to the Cath Lab. They are hoping to find a solution as to why she keeps crashing and why her sats are in the 60's. They are hoping to fix a problem within the pulmonary veins, I hope it's a quick fix! Please pray for her safety while in the cath lab. It's a risky procedure again, she's come this far and it would be horrible if the cath lab was the end. I know it wont be, but there's always that risk.
I will post an update as soon as we get one.

Another hard night

Hailey crashed again last night around 8:30pm. It was almost identical to saturday nights crash. They got her back again but she ended up starting to crash again around 5am. Luckily they caught the 5am one soon enough to treat her before they had to do CPR. They are trying many different options in their weaning methods to try and get her off the ventilator. Getting her off the vent is one of the most important things after the Glenn procedure, it will take a lot of pressure off the lungs. But Hailey is going at her own pace telling them she's not ready. Right now they have a nurse and respiratory therapist sitting right next to her bed 24/7 to watch her and make sure they are able to intervene if anything were to happen.
Basically Hailey's pulmonary arteries just need to get used to this new blood flow and stop collapsing when there is too much acid in the oxygen. I will post more updates as we get them.

Here are some of Hailey's beautiful pictures from Now I Lay Me Down To Sleep.

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!!

 

Update on our princess

So Hailey had her cath lab last week. It turns out they found yet another leaky heart valve. So now they do not want to procede with the Glenn just yet. She was supposed to have the Glenn yesterday, but instead the team here sent Hailey's information over to Stanford to get a second opinion. They are even talking possible heart transplant!!! We really don't want to have to end up in that direction, but if that's all they can do for her then we will have to accept that. We're still waiting for Stanfords opinion before moving forward with another surgery. I pray they find a solution other than transplant.
We have had a busy few weeks. My husband and I ended up moving to Vancouver, WA to be closer to Hailey and her doctors. 3 months in the McDonald house and being away from my husband was just way to much. We are renting a house from a friend and it's only 15 minutes from the hospital. Josh is extremely happy to be able to see his baby girl every day now. And I am happy for him too, also happy to be back as a family again. Just missing our baby girl being home.

Hailey is doing great while waiting for the next step. She is still off the ventilator and she is gaining weight like a champ! She is already up to 12 pounds!! We should be finding out more information sometime this week on what the next step will be for Hailey. I will post as soon as I know.

Hailey update

Hailey has been doing well these past few weeks. She has remained off the ventilator. But she does still have the HiFlow on, which they will leave on until her next surgery. She is just being so alert staring at everyone and watching her mobile very intently. She has been slowly gaining weight and she is currently at 10 pounds 3oz. Still has some more to gain before her Glenn but she is on her way. We have also been able to dress her now which has been so much fun! Grandpa came to visit this last week and we sure went on a shopping spree! Little Hailey has him wrapped around her finger so tight!

Right now her schedule will be getting a heart cath on October 19th. And if all looks well, she will be having her Glenn on October 26th. We are very scared to see her go through another surgery after watching her interact so well these past few weeks, but we know it's what she needs to be able to come home with us. I just wish there was a fast forward button!! Here are a few recent pics when grandpa came to visit and getting all dressed up! 

Watching her mobile                                      

 Sleeping in grandpa's arms                               

In her "party dress" for grandpa's 60th birthday!

Not going anywhere for a while

Hailey has been off the ventilator again for a week and a half, but she is still having difficulties breathing. She has been on and off the SiPap and the HiFlow. Turns out her heart is just not strong enough to make it without support. And because of this, she needs to stay here in the hospital to grow and get strong enough for the Glen procedure. So we will most likely not be going home until around Thanksgiving time. This is not the news we wanted but at least she is still alive and fighting. And we will eventually have her home with us. Thank you for all your thoughts and prayers, please keep them coming. Again, I am sorry I don't update on here much but I've never been much of a blogger! This picture of her was taken 2 days ago when her Daddy got to come and visit :)

And Happy 2 month Birthday Hailey!!

It's back in....

Hailey spiked a fever yesterday morning and was having a very hard time breathing. Turns out she has a really bad infection from her PD Catheter. So the breathing tube went back in after her lactates went up to 9.2 and because she could not breathe well at all with the extra workload on her tiny little heart trying to fight off that infection.
Also as a result of the infection, her galbladder has become enlarged. They were really worried that it would burst so they had to put in a drain tube through her liver and into her galbladder. She is now on "Super Antibiotics" to get rid of this infection.
The good news is that the tube will be coming out possibly monday or tuesday because the reasoning for her tube being put back in was because of the infection and was not related to her heart. So it will not be left in until the glen.
Please pray for our little Hailey that she is able to do well when she gets this breathing tube out and that she fights this infection.

Off the ventilator again

Hailey got her breathing tube pulled yesterday. She is doing ok so far. Her lactate levels were elevated again but she managed to get them back to where they needed to be. She did well over night, but they are still a bit concerned with her lactates. They keep rising and falling. Just trying to get her in a good place where they will stay low. The bad news is if they have to put the breathing tube back in, it will remain in until her Glen. That is a long time to be sitting in the hospital with a breathing tube! They may do her glen in late October which is pretty early. Please pray that she is able to keep her lactates low so that we can take her home! The picture is from last night when she finally opened her eyes again.

Doing well

So far Hailey's recovery is going well. Her lactate levels are now below 1, so that is great! She has already started opening her eyes again and is very alert. So far this recovery is really going much faster than her first one. It helps with her not having to be on ECMO this time. That is one big scary machine! All of the doctors sure are amazed at what she has gone through and how much she is fighting. She has now had 6 surgeries, 2 of them being open heart surgeries and has a tally of over 40 hours of surgery. She amazes me everyday. I just can't wait to take her home with us! I wanted to thank everyone for all the thoughts and prayers, they really do work! And thank you Lincoln family for all the coments and positive messages I really appreciate it. I hope Princess Aly is doing well!

This picture is a gift from Grandma, it's a onesie and a hat!!

Another surgery

So last Wednesday Hailey went to the cath lab and the doctors told us they need to go back in to fix a severely leaky valve. :( Hailey had her surgery on Friday august 21st. Exactly one month after her Norwood. So now we are back to the beginning again. At least there is no ECMO this time. She seems to be doing pretty good right now. They had some concerns again with her lactate levels. They were over 13 when they finished the surgery but they are now down to 1.7 and need to keep getting lower. Our poor baby is so swollen again it's so painful to see. She was so close to going home and now we have to go through all of this again. Hopefully the recovery is much faster this time than it was the last. We have been here for 5 weeks now and we're looking at 3-4 more. But as long as we get to take her home, it doesn't matter how long we stay.

Ups and Downs. Sure is a rollercoaster.

So many things have happened since my last post. Sorry I haven't been posting much. Hailey got extubated (breathing tube out) a week ago today. they ended up putting it back in only 17 hours later because her lactate levels were up to 13. They should be around 1 or less. So she recovered for about 2 days and then on Thursday August 13th they pulled her tube again. This time her lactate levels were great up until last night. They went up to 8.6 and she was having a little trouble with her heart rate. So the breathing tube went back in at 6 this morning.
It's just so hard right now to see her with that tube back in. Over the weekend she was starting to act like a "normal" baby. She was looking around and making the cutest cooing sounds and seemed very happy and content. There was even talk about moving to the next floor and starting her swallow study since she was doing so well. Now it's another huge step backwards.
There was even talk this morning about her leaky valve that could be causing her to not do well off the ventilator. If this is the case, she may have to stay in the hospital until her next stage, The Glen. Which would be mid to late October. I really hope that's not the case, I really miss being home with my family and we just want to take Hailey home to be with us. It's so incredibly hard right now. I just hope and pray we can take her home soon. Please pray for our little angel. I posted a picture of her from last night when she was cooing at us. I hope to be able to post another one like this soon if she can manage without her tube.

Drain tubes are out!

Hailey got her drain tubes out today! She did really well, she is still a bit swollen from having her chest closed but she is urinating well and should get that fluid off in a few days. Once all that fluid is gone they will start more aggressively getting her off of the ventilator! She has been on it for 2 1/2 weeks now, it would be so great to see her without it!
I also got to hold her for the second time ever today! What a great feeling that was, she had to stay in her bed while I held her because of the ventilator, but as soon as that is gone, lots more holding will happen! She sure seemed to know that I was there, her oxygen saturation levels increased while I was holding her, but we're still waiting for her to open her eyes more often. They are decreasing her meds slowly and that should help wake her up a bit more.

Chest is closed!

Hailey's chest closure actually went really well. All her numbers are normal and she has been stable now for the last 2 days! She did have a slight problem with her lactate levels being too high right after surgery. They thought they might have to re open her chest but she ended up getting them back to a normal range by morning. Thank you everyone for all the prayers and for thinking of us. It sure does mean a lot to us. And I'm sorry if I haven't made many other comments or posts, but I'm sure you all understand how busy us heart moms can be during this first surgery. They plan on taking her drain tubes out in a day or 2, and they are currently weaning her off of her ventilator and her dopamine. She is already completely off of her epinephrine finally! Will post another update and picture as they remove things!!

Chest Closure

Our little girl ended up having some sort of infection, they are still waiting on the exact results of what kind of infection, but she is doing a lot better. No more fever and she was able to come off the epinephrine.
Right now we are in the waiting room while she is getting her chest closed. They said it should only take around an hour to do so, but we're now at the 2 hour mark. There has not been anyone out to tell us how it's going either. We're hoping that it's a good sign?
I'll update later how her chest closure went, thank you to everyone who has been leaving comments and for those of you who just send us prayers. They sure do help!

Rough Night

Hailey had a bad night last night. She is back on her epinephrine. Her heart rate and oxygen saturation levels keep dropping and she is not staying stable. They did some cultures and we will find out later on if it's just an infection. If it's not an infection, we're not too sure how well she is going to do. Please keep praying for our little angel.

It's been a while since I posted anything. Hailey was born on July 18th at 4:09 by C-section. She was 7 pounds 12oz! They took her right away to get all kinds of tests done and lines put in. I didn't even get to hold her until she was 2 1/2 days old!
She had her first surgery on July 21st and we almost lost her that day. She ended up being on a bypass machine for 6 days. She struggled coming off the bypass and her heart stopped again. Luckily the Dr was able to get it going again. She was so swollen and full of fluid that she weighed over 12 pounds. She has been doing great these last few days and only needs to get rid of about 500mls of fluid before they close her chest this monday August 3rd.
So far she has been taken off of 4 of her 10 medications, they are working on getting her off of more but things will begin to go a lot faster once her chest is closed.
My little girl amazes me everyday, one of the doctors even came up to me and told me that a lot of the workers in the PICU have become a "believer" after witnessing what my baby girl has gone through and is still alive. She has made a true believer out of me as well.
I will try and update sooner once they close her chest, I have just been insanely busy these last 2 weeks I kind of forgot about updating this site, as I usually use facebook for updates.
Here are a few pictures of our miracle baby!

Our little girl is going to be here VERY soon!

It looks like we will be getting an induction date for this friday! It was first planed for Monday the 20th but the hopspital wanted us to have her on friday to get her stable over the weekend and begin her surgery early next week! We're so excited and also SOOO scared! (I am anyways). We will post more updates as the 17th gets closer. We have an appt on the 15th to find out if we're going to be doing a c-section or induction, will let you all know what's going on then. 

We're at week 35!

I usually just write blogs in my myspace and on facebook, but I thought I would start one here as well. That way we'll have something to show to Hailey when she is older. My name is Nadine and I am married to Josh. We are expecting our first baby, a girl named Hailey. We are scheduling a C-section for July 20th because Hailey has been diagnosed with Hypoplastic Left Heart Syndrome. We got the news on our 19 week ultrasound appointment. HLHS means that she will be born with half a heart and she will need open heart surgery within the first few days of life. We plan on having the surgery done at a top hospital, Doernbecher Children's hospital in Portland, OR. We are very nervous about the whole situation but we are staying positive that our little girl is going to be a fighter and she will be home with us in no time at all! I will update more as time goes on, not sure if the hospital has Internet access or not, but I guess I will find out!