Hello! I am sorry that I haven't posted an update in a while. My parents have been an awesome help! They spent the $4.75 a gallon on diesel and took the kids and I to Stone Mountain for the week in their motor home. Stone Mountain camp grounds is about 10 minutes away from Egleston ~ much better than the hour plus ride from Gainesville! Being there gave my boys the opportunity to play and have a "mini vacation,"while I was able to spend more time with Lainey. On Monday they began feeding her 5ccs of milk. They also moved her to her own room in the NICU. Having your own room is the last place to move before going home! They have increased her feedings each day, every 3 hours. She has been very sleepy and not waking to feed, thus much encouragement has been needed! The fear of her having a feeding tube has made us pressure her to EAT! Last night was the first night she ate voluntarily, we think because they lowered the amount of IV nutrition she is receiving (and the pressure from us!) We did learn yesterday morning that Lainey does have Cystic Fibrosis. We don't know much about the illness, but we will soon have an appointment with the Cystic Fibrosis Center here at Egleston. The doctor did explain that most babies present the illness with respiratory issues, but Lainey's happened to present itself with digestive problems. Although this is what sent us here (digestive problems due to Cystic Fibrosis), the doctors do not think she will have to take enzymes to breakdown her food ~ at least for the time being. As long as she continues to eat, poop, and gain weight (something that is difficult for CF babies), then she will be on the right track for going home. If Lainey continues to do well, the doctors are hoping to release her on Friday. This has been very hard for us, but we have decided that God must have a plan for us and our new baby girl. Please continue to keep us in your thoughts and prayers. We definitely need them and we have truly felt them in our most desperate times. Thank you all so much for everything.
DeAnn, Sid, Logan, Liam, and Lainey Smithson
1 month ago