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.
My heart goes out to you. I have a 20 month old that was born with critical aortic stenosis and HLHS (mild). We did not know about her diagnosis prenatally so were surprised when she deteriorated so quickly after she was born. To make a long story short(er), she was flown from Alaska to Seattle within hours of being born, had a heart cath the next day and then a form of the Norwood (DKS) done at two weeks old. We were hoping to be in the hospital less than a month after that, but Natalie was intubated for over two months as she healed and grew. (Natalie was in Seattle from Dec. 19th to April 1st) It was a long process and I had many days like you have had thinking we were making progress, only to be told that she wasn't ready to breath on her own yet. I had two young girls at home that I missed terribly. The separation from my husband and children was excruciating at times. Looking back, that time seems so small in comparision to the wonderful year and a half that we have had her at home with us. Although each CHD child's story is different, I just wanted to encourage you to hang in there. Feel free to cry...and laugh at your situation. I will be praying that the One who made little Hailey, Jesus Christ, will show you His Love and Grace every day. Feel free to contact me @ tahand@hotmail.com and you can check out Natalie's story at caringbridge.org/visit/nataliehand.
ReplyDeleteHold on tight for this roller-coaster ride.
Angie
Thinking of you and keeping Hailey in our prayers...hang in there!
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