I thought I would send an updated post on Averi. Thank you so much for those of you that have called, sent notes, e-mails, or are just keeping us in your prayers.
I am back in Virginia now - it just about killed me to leave Ohio, but at least Tiffany is doing better and able to drive herself places now. Dan's parents arrived at their house last night and will be able to stay with them until the 29th of May, I believe. I am so glad they could come.
Averi seems to still be doing her dance of 1 or 2 steps forward and 1 or 2 steps back. She has times she is more alert now. This is one of my favorite pictures of her so far because her eyes are open (a rare occurance)! This picture was taken last Wednesday when she was waiting for her swallow study.
Her swallow study did not show a hole between her esophogus and trachea, but it did show that she has a very weak and uncordinated suck and swallow. They were able to get her to take about 4 sucks total and then she wore out. Occupation Therapy will be working with her on this, but they said she is weak enough right now, that they best thing to do is encourage her to breastfeed. Tiffany has very patiently been working with her several times a day - sometimes she will latch, but no real sucking. She still receives her feedings by tube. The feeding is delivered over 45 minutes because she has episodes of her heart rate dropping and her oxygen saturation dropping if she spits up at all. She was off of oxygen for a couple of days, but is back on again - mostly to help out with those episodes. Here is a picture of her over the weekend - sporting a trendy nasal canula and feeding tube! As you can see, she is still a bit jaundiced - it seems to be taking a long time to go away.
They also let us know this last week that she has a significant heart defect that will require open heart surgery at some point in time. They hope to be able to hold off until she is at least 4 months old. They will use medications to help - and when they are not effective enough anymore, they will do the surgery. She has an opening between the two lower chambers of her heart, so blood that is supposed to go to the body also gets pushed back into the lungs and this will cause fluid accumulation in her lungs.
Kenny and Cherish came to visit last weekend (Mother's Day weekend) and here are a couple of pictures of them with their youngest niece. It was sure nice of them to come in the pouring rain!
While I was there - the routine was pretty much -
Wake up at 7, Tiffany would pump, leave by 8 to be at Children's Hospital by 8:30 for Tiffany to try to feed Averi, at 9 they would start her tube feeding and Tiffany would continue to try to feed her. At 10, Tiffany would pump and I would get to hold Averi for awhile, then Tiff would come back and do Kangaroo care (skin to skin) until the next feeding and pumping. Kaili would come with us. She was allowed in the NICU and did a great job - especially if we brought Tinkerbell and the DVD player. When she got restless, there were many choices of places to play in the hospital. Around 1 or so, we would head home for lunch and naps for Kaili and hopefully Tiffany. Dan and Tiffany would head back around 5pm for the 6pm feeding. I got to hang out with Kaili, make dinner, etc. Tiffany would usually go to bed around 11 and get up around 3 to pump again. And then the day would start again! Poor Tiffany really doesn't have time for anything!!!
Here is Kaili holding her new baby Averi! What a great big sister she will be. If you look closely, you will see this was when she was off of oxygen.
This is such a beautiful picture of a mother and her daugther. Tiffany has been doing so well.
Keep them in your prayers. I think Averi is saying her prayers too!
