I also feel like I have to tell you that if we had known before birth that Lenah had spleen and liver issues before birth there is a good chance that we would not have pursued heart surgery for her under those circumstances as well. Now, we still do NOT have a confirmation of the suspected biliary atresia. They are basing their suspicions on her elevated conjugated bilirubin and a suspicious ultrasound. The only way to confirm if she has it or not would be liver biopsy and cholangiogram done under anesthesia - which she might not survive because of her heart.
Something you may not know is that if we had decided before birth that we were not going to pursue surgery and have her given the prostaglandin to keep her PDA open and her alive prior to surgery, there is a good chance that I would have no memories of her whatsoever. You see I remember almost nothing about the day and night after her birth. I hemorrhaged two hours after she was born and had to be put under general anesthesia for treatment. I was pretty out of it for the next 24 hours. I would have never gotten to hold her or know her at all if she passed away quickly after birth. So at this point regardless of what the next few days and weeks hold for Lenah and for us....I am profoundly thankful. I am thankful that I have gotten to know her. I am thankful that my children have gotten to meet, touch , and even hold her. I am thankful for getting the opportunity to meet the other families at Texas Children's Hospital. I am thankful for meeting the amazing people who work and serve others at the hospital. I hope all the rest of you are never forced to meet them, but if you do, I am sure they will serve and support you as well as they have us.
Today we took all the children to visit Lenah. Y'all, I still don't know what the future holds, but I am encouraged today that the Lord has good things in store for us. Lenah's bilirubin count had reached a high of 12 point something the week before last when they decided to schedule her for surgery to diagnose and possibly treat her for biliary atresia for Oct 3rd. They also put her on a medication called ursodiol that is usually given to people with gall stones to help the gall stones dissolve. Then, as you all know, in the early hours of Tuesday, Oct 1st, she began to have the alarming signs of necrotizing enterocolitis. They stopped the ursodiol and put her on antibiotics and fentanyl for pain and put her back on the ventilator to help her rest. Over the last several days Lenah's bilirubin count had been going down and then yesterday it was up a very tiny bit and then today it is down to 6 point something - the lowest it has been since it started going up. Her abdomen is also back to 36 cm and her overall appearance seems better. Her poopies have had no blood. All of her other reading have been good today. I am cautiously optimistic that she is improving overall. I have also been fervently praying that she does not at all have biliary atresia. Whether the Lord has healed her or she never really had it, I will be exceedingly thankful when it is ruled out as a concern.
So to all of you, thank you for praying for Lenah and for us. We are not out of the woods yet. Please continue to pray. Here are some pictures from our visit today.
Edward and Lenah
Sofia and Lenah
James and Lenah
Joseph and Lenah
Sarah and Lenah
Lenah today
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