Feb 14, 2009 3:28 PM
We've come pretty far in our NICU journey. Looking back at all the pictures I can see how much she has already changed. She now weighs 2 pds, 3 oz and is 13 1/2 inches long. Her heart is doing well still after her surgery and she doesn't have a lot of the scary problems that most preemies her age get.The one and only major problem that we are struggling with right now is her lungs. They have gotten progressively worse over time and the ventilator that is helping her breath is still hurting her in the process. She has so much scar tissue in her lungs that it is alarming. The doctors let me take a look at an x-ray of healthy lungs in a preemie and her last x-ray and wow! Healthy lungs on an x-ray show up black because its air. Her x-rays are gray because she has so much scar tissue. Bad chronic lung disease looks like ground up glass on an x-ray; black with sprinkles of gray. She doesn't have any black on the x-ray, all gray in every area of her lungs. There is nothing else they can do except pray with us.They have prepared us for the worst and have explained the situation to us thoroughly. She's on 100% oxygen right now and for a few scary days her oxygen saturation was bouncing back in forth in the 60's and 70's. When her heart rate started to decrease we thought that the Lord was going to take her from us. She is still very sick but has stopped giving me mini strokes by holding a little more steadily in the 80's with her oxygen. The scary part about her being on 100% oxygen is that too much of a good thing can be very bad. It's increasing her risk of eye damage so much it's to the point of the inevitable and even though it's the least of our worries right now, I ask for everyone to pray that if the Lord grants us our miracle and He helps heal her lungs, that He will also heal her eyes and any damage the oxygen has done to her.As always, we are amazed and grateful for all the support everyone has provided. Many of you have asked how you can help us besides emotional support and as always, we would love for you to help support those that are supporting us. Donations to the Ronald McDonald House or the March of Dimes will go a long way for everyone that finds themselves on a journey similar to ours. My sister and mom are also trying to organize a fundraiser to get as many Zakys as they can for the NICU. The Zakys are a special "hand/arm" shaped positioners that are anitmicrobial fleece filled with beanie baby like filling that help comfort and position the babies. It is supposed to simulate human touch and the pressure of them being held. They are a hot commodity around here since the unit only owns about 7 and there are 53 beds and babies to the unit. In the last two days I've seen an improvement in Avery and I really do think it's because of the Zaky. It has comforted her and calmed her better than anything elseever has (besides me, of course :-D ).As always keep us in your prayer and pray that the Lord's will is to bless us with the miracle that we need.Take care and God Bless to all!