Done Again

It is now 3:10am and we just spoke to Dr. Kourteas, he believes that he found the source of the bleed---a small blood clot and some vascular tissue from her first go around. He thinks that going in he may have bumped something that caused her to start bleeding, the cauterized (like saudering) and are very optimistic.

Jason's dad came back up so we wouldn't have to wait alone, Jason fell asleep in one of the empty sleeper rooms and I'm just waiting to go back and see her. If she looks good, we will go to the hotel---we are staying at the University Guest housing, a 5 minute walk from the hospital. Oh how I hope things will look up from here.

She is still open just like after her first surgery, mostly as a precaution and because she has been through enough today and needs to be able to rest. We're hoping to close her in a day or two. Her lungs are still recovering and that will take a day or two, but she is doing better.

Thanks again for all your love and prayers.

Three's a Charm?

It is currently 1:54am and Gracie is going back for her third trip to the OR today---she is still bleeding and we don't know where. We are hoping that they will find the source of her bleeding and be able to stop it soon. Right now they are pumping her with fresh frozen plasma, blood, and platelets in an attempt to help her clot and stop bleeding. The good news though is that her heart rate, blood pressure, sats all look good. Even her gases are good, which is remarkable.

I have completely lost it, all I could do was look at my baby, swollen, sedated, and paralyzed and thinking how just yesterday she was playing and kicking and being so cheerful. Normally she would grab the tubes and mouth them, but she just layed there. Occasionally tears would come from her eyes and our hearts just broke.

Please pray for us, pray for Gracie. I'm beyond praying now, I need your prayers to be my prayers if you will.

We will keep you posted.

Another Update

the nurse just called---they are done, Dr. Kourteaus is done and should talk with us in 20 minutes. They've decided to leave her chest open so this doesn't happen again---whatever that means. We'll know more after talking to him.

It just helps me to post--it keeps me sane, hence the small update.

Nothing goes smoothly

Can I let out a big scream and just freak out?????? We finally went back and saw Gracie at 6:30pm, as we walked back there we saw the all too familiar scene---the nurse going crazy and four or five doctors around her door. Grace's numbers looked good except for the two yellow numbers (I'm so tired I forget exactly what they measure) were higher than they wanted and they didn't know why.

Turns out while in the OR the breathing tube got pushed down into her left lung causing it to collapse. They thought that it re inflated but after taking a stat x-ray they determined that the left lung still looked funny. So the only way to find out what was happening and fix it was to take Grace back to the OR. It is now 8:30pm and she is still in there--we did get an update, they have her open, there is quite a bit of blood in her chest, they were cleaning her out and didn't find anything that was bleeding yet. The OR nurse said that she seemed to be improving---whatever that means????

I'm trying to be strong, I joke and say that nothing with Grace runs smoothly. But it just pulls at my heart to see my baby who I would lay down and die for struggle every time they take her in. Hopefully what they are doing now will help and she will sat above the low 70s like she was doing after the surgery.

Thanks again for your love and prayers.

Close but still not quite done

It has been 7 hours since we left our Gracie girl with the anesthesiologist and all the repairs have been made. Her tricuspid valve has been fixed and is not leaking much now, the sano has been taken down, and the Glenn has been done. We are still waiting for them to be able to close her, there is still quite a bit of bleeding that they are still trying to control and then they will attempt to close.

Though Annie has been the one giving us periodic updates, I ran into Bonnie and she said that Grace will probably stay longer than most because of how long they have had her in the OR. But ultimately it all depends on Gracie and we all know she does things in her own way and timing.

I am ready to see my baby, it has been too long!!! I'm just hoping that they will be able to stop the bleeding and close her up soon. Hopefully we will be talking to Dr. Kourtas soon and then only have to wait 45 more minutes to see her. All I know is they better hurry because I'll be more than ticked if I can't see her till after shift change.

Thank you all for your thoughts, prayers, and positive vibes, they have been felt so much and though it has been a long day, with several bumps we have felt peace and comfort. We will update again after we get to see Gracie.

First update

After two hours we finally got an update---Gracie is doing well, but they haven't gotten far yet. It is taking quite some time opening her up, the doctors are going really slow because of all the scar tissue. We will get another update around 12pm.

Late start

It was a crazy night, between Gracie waking up and having to deal with the feeding and medicine schedule for surgery I was up every two hours and then up for good at 4am. We got here at 6am for a 7:30am surgery but were left waiting for an hour and a half until we were told that there was an emergency case before her.

I didn't mind being able to be with Gracie longer and holding her, but because she was miserable I was upset that they left us waiting without telling us anything. We will update as we get updated...it will be about 6 hours before we get to see her again. Its amazing how sad I feel knowing she is here and I'm not there with her to protect and hold her.