This is the first post that has come in the quiet of my home in front of an actual computer since the boys have returned. The quick updates this week have come from my blackberry while at the hospital with Bella or playground with Dylan. There is much to update!
Bella is amazing. Simply put....she continues to amaze us in so many different ways: spiritually, medically and parentally. The fact that she made it thru the eye surgery without going on the ventilator is an example. Her respiratory issues should have made it impossible for her to handle medications that slows down her breathing without needing some assistance from the vent. Her fiesty nature should have caused her to be her own worse enemy for this procedure, where it was necessary to be still. Yet the day of the procedure you could feel the hand of God on her early in the day (this is a quote that came from our nurse, not my mouth). She was relaxed, her saturations went up instead of down...there were no tantrums, there was no fighting. Not to take away from the hard work that our nurses put in to keep her this way throughout the procedure but it truly surpassed anything that any person or medicine could physically do to make this possible. I will forever remember the converstation with Dr. Wallace upon her completion. A man that has probably done hundreds if not thousands of these surgeries, smiled at us with complete and total satisfaction. A satisfaction only found when you are truly using your gifts from God to change lives. He had only realized how premature Bella was during the surgery, how incredible it was that she was even there at that moment. He told us of this and looked into our eyes and said "today is a good day...."
Since Wednesday we have had a series of good days. Bella is requiring less oxygen than before. Her eyes are healing fantastically. She is more relaxed and is gaining lots of weight. She is now 3 pounds and 14 ounces. She was 3 pounds and 6 ounces earlier in the week. She can regulate her own body temperature and (not surprisingly) has a tendency to run on the hot side. She is taking 30 cc's of food. She is being taken off of caffeine (that was initially used to keep her from having apnea spells) because there have been no spells. Her pulminary hypertension is being treated medicinally (with Viagra, go figure...) And she has been weaned from 6 liters of oxygen to 4.5 this week. Our next endeavors (hopefully this week) should include trying to bottle feed her, moving her to a crib and being moved out of the most critical section of the NICU. Our goals long term are to continue weaning her down on liters of oxygen needed. She should be at under 1 liter (like .01...) before she can go home. This could be the part that takes a while but she is Bella so who knows! Another advancement with Miss Bella is that she (and us on occassion) is working with Tasha. Tasha has been waiting to work with Bella for a while now and just needed her to be off of the vent. Tasha is doing physical therapy with Bella and infant massage. She is teaching us too. She is working with range of motion in her arms and legs. Bella is responding VERY well to it, she loves her massage. Except for the butt massage, she definitely did not like that and let everyone know it quickly. We think it may be post traumatic stress from the "silver bullet" (stool softener)...
So here we are...109 days. Some of the best and worst days we have ever known. But we are here. We are exhausted, exhilirated, ecstatic: all at once. AND we are cautiously optimistic not knowing how long that it will be, what other set backs we may face. But we are here. Loving one another more than we ever knew we could, loving all of you for standing beside us, witnessing the all powerful, all mighty hands of God working... trusting & believing that with His guidance we will have the strength, the health, the faith and the patience to one day (no matter when that may be) have our family...all 4 of us...under one roof. Thank you so very much for your love, prayers and faith...
Much love to you all
Telisha
Beautifully put Telisha what comes from your heart and soul. God is so amazing and powerful in so many ways that we can not begin to even grasp it. When the Dr did his surgery on tiny Bella's eyes it was our Lord and saviour Holding the Dr hands and guiding him as he stood over him carefully. The calm that came over Bella was the angels singing to her as only they can to ensure her they would not leave her side and God stood there with a smile upon his face brighter than the sun itself. Her O2 levels remained perfect because God was there breathing into her body everything she needed as the angels wings softly fluttered.She is a true little soidler for Christ and our Lord and Master will see her through this time as he will see all of you through whatever he has planned. When you have that beautiful calming feeling come over you It is God holding you close to him while he reassures your heart and soul he is there with you always. So close your beautiful eyes and see him, smell him, touch him with your mind and soul sweet Telisha, Feel his warmth and his power as you hold little Bella in your arms next to your body, Amazing isnt it . God Bless you Telisha, Chris, Dylan and Bella. What a true and beautiful miracle we all get to behold. Praise be of Lord and Saviour. God Bless the little children and God bless All of you and all he allows to care for "HIS ANGEL"
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