Well we have no plans for surgery today so far unless the surgeon changes his mind again. He has now told us that he would like some additional testing done with her today before they operate possibly on Monday. Yesterday we were told that the additional testing is not necessary....anyways we are feeling the frustration of the constant changes with these plans however we are grateful that noone is approaching this lightly and taking all things into consideration to make sure that it is the best option for Bella and the right timing. We have become aware of the many players on her care team and how they all have to work together to ensure the best possible outcome. Yesterday there was a meeting of specialists including heart, lung, neo-natalogists, general surgeons and nurses to discuss. We are appreciative of having so many brilliant minds working together to benefit her and are realizing with that comes difference of opinions on specifics. SO hopefully we knock this test out today (which will show that we need to get both surgeries) and we go on Monday.
The surgery for both the gtube and nissen will be the longest surgery we have endured yet, taking up to 3-4 hours to complete. I pray for peace and comfort during this time as in the past the hour long surgeries seem like a lifetime. As I mentioned recovery for this could be painful depending on if they can do the nissen lapriscopically or if they will have to make actual incisions.
The past several weeks have been busy in Bella's world as we have weaned her off all of the pain drips from the last surgery, the steroids for her lungs and started the nitric wean. She has been off of meds & steroids for about 3 weeks now and is doing well with all things considered. We have seen need for increased pressure support from the ventilator but her oxygen requirements have not gone up which is much progress from previous weans. The nitric wean will take several months as they are only weaning by 1 ppm every 5-7 days. We are on 10 now and she is tolerating fantastically. In addition to the weans we are working on introducing Bella to the world around her. She is learning that she can turn her head without being stopped for fear of extabation. She is learning that she can sit in the upright position and tolerate it. She is learning that not everyone that comes near her will induce pain or make her uncomfortable. We are learning to work with the many cords still attached to her and still be self sufficient with holding her and caring for her. We are learning to do trach changes. Which is one of the scariest and most important things I have ever learned in my life. I have never had the responsibility of my child's airway at my finger tips twice a week. We are learning to suction her and do daily care for her trach. We are learning various exercises that we can do to help her along with her development. We are learning that we need a crash course in nursing school and medical school to feel confident in taking care of her. We are learning to ask lots of questions and pay VERY close attention.
We feel like we have rounded a corner in our journey here. We still cannot fully see the light at the end of the tunnel but we know it is there. We have started informal discussions of what we need to do to get her home. Only God knows when that may be but at least the professionals are recognizing that as a possibility for the first time. The follow up clinic with which we will be working to assist with her developmentally and the many health needs she will have started regular visits. There is great concern on their side about neurological issues. In their brief assessments of her they have found that muscle tone is not normal, she has spasms in her legs and arms which is a sign of neurological disorders they say and her head growth is not as constant and increased as it should be. So now we have gone from the discussions of IF Bella will ever come home to when she comes home if she will be able to walk, talk,see, hear and how severe will her special needs be. From speaking with other preemie mom's these are typical concerns and until further testing or she gets older we just can't be sure. As always we are prepared and accepting of the worst but praying for the best.
Her stability over the course of the past few weeks is progress for Bella, we see it as huge progress. There have been no great leaps and bounds forward but that will be a constant theme with her over the next few years, it will be slow but hopefully steady.
We cannot express the gratitude to so many, especially the Lord, for where we are today. Our entire world has changed but we are here still hopeful and loving each other more than we ever have. Every kiss of her cheek and snuggle in my arms carrying me thru another day. Looking back over the past 7 months I can honestly say now that it is all worth it for us and we will strive and do our best to make it worth it for her. I want to live each day to make her better because she has fought so hard to be here. I want to give her every opportunity to enjoy this amazing life that we live. I want to teach her and have her learn from me hopefully as much as I have learned from her...The Lord continues to empower us giving us confidence in the fact that He chose us for a reason and He will provide us with the strength and ability along the way. There is no greater comfort than just knowing that.
Thank you all again for being our supporters, our prayer warriors and friends. You have given us a knowledge of the beauty of the human spirit and that my friends will last a lifetime.
Much love to you all
Telisha
Telisha,
ReplyDeleteI have every confidence that Bella will make it through her next round of operations just fine. She's a fighter with a great little spirit, and I know she will continue to show those traits for years to come.
When my cousin was born a preemie 18 yrs ago, the Drs didn't give him much of a chance either. Yes, he had to endure many operations and is legally blind and 50% hearing impaired. Yes, he did have developmental delays and struggles with normal sounding speech (they didn't determine how deaf he was until age 3), and has some challenges in school (mostly because he demands to be in mainstream classes and not classes for visual and hearing impaired)... however, this child has literally climbed/hiked mountains, rode a mule down the Grand Canyon, rode a zip-line in South America, drives on 33 acres of land w/o hitting anything, is currently in auto mechanic classes, and much, much more. Yes, it is important to be aware of Bella's special needs, but also be aware that she can do anything she puts her mind to and no one should ever tell you otherwise. Just as my cousin has amazed us all and proved Drs. wrong, I expect that Bella will be equally amazing.
The kids and I think about you all often and send healing thoughts Bella's way daily.
Give Dillon and Bella a hugs and kiss from their cousins and myself.
Love,
Stacy and the kids
PS... you niece will be 8 on Jan. 18... can you believe that?
Thank you for the update. I keep up with Bella a lot through your mom. I feel like that little angel is as much my grand baby as any. She is a fighter and is here as an angel from God . You were chosen for her to be her mommy for a reason. Only the truly special mommies get to have TRUE angels to care for. Children with special needs are called that for a reason, because they are special in every way. Bella will make it through her surgeries and come out for the better. Yes there may be times ahead that seem extremely difficult. You just keep on keeping on with your faith. Bella is a true miracle to behold. God will lift you into his arms and carry you anytime you need it as he has so many times the past 7 months. He has healed the sick, made the blind to see and even raised the dead to live again all for us his children. He feeds and cares the wildlife as small as they may seem . We are his children and so much more important to him. He gives us what we need not what we want. He feeds our souls with his word, action around us, and much more. I know you are a very spiritual person. But you have grown by leaps and bounds since Bella has been given to you by our Lord and Saviour. Look at where you are today because of that very action. It is truely amazing to see the strength of that faith and Bella as well as you are giving so many out there the faith they need in their lives by reading and witnessing your family's growth. You may not recognize it yet but you and your family are angels as well . We admire you, pray for you , cry with you, and sing the songs of joy in our hearts with each accomplishment Bella makes . Because each she makes is yet another your whole family makes. So stay strong sweet T because God is smiling upon you and your family. The rays of hope reach the world beyond the NICU through Bella. So with all that said I pray God continues to hold all of your family and Guide the Doctor's hands when the time is right for Bella's surgeries. May his power envelope all that have a hand in Bell's care. May He stand beside the one who does her surgery, hold their hands and guide them into what to do for his angel solider Ms Arabella. May he sit beside you and you feel the warmth of his love surround you as you wait during that time. Meditate in him and he will speak to and comfort you. God bless Bella, Telisha, Chris, Dylan and the dr and nurses as they witness yet another miracle about to unfold. Amen, God bless the little children
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