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.