Well Miss Bella is having a series of good days this week. She is starting to adjust to her new surroundings and folks are starting to see the sweet, alert little angel we all love. Even the Dr admitted yesterday that he got to have a moment with her where she looked at him with those big ole eyes and was calm & alert.
We are very impressed so far with her care plan. They have really gotten to know her lungs and heart already. Their plan is to be proactive instead of reactive. She is currently on a short round of steroids because she was so sick and we needed to do something extreme to change the direction we were going. She is responding beautifully. She will also remain on inhaled antibiotics for an extended amount of time. They have been seeking counsel from the Cystic Fibrosis specialists as to treatments. She does not have CF but her lungs look very similar. Her response to the antibiotics and steroids are showng that inflammation & bacteria/infections could be the culprits of her many setbacks so at least we know what to focus on. The immediate plan is to get her vent settings down & get the trach surgery asap. We are getting closer. She is on 75-85 % oxygen and 10% nitric. They are also keeping her oxygen on the high side to treat the pulmonary hypertension as it is very important we keep her heart in good condition or we have a whole new set of major problems. They tell us the biggest factor in her outcome will be nutrition, nutrition, nutrition...she is still on continuous feeds and they are increasing feeds almost daily. We have always heard that if she could breathe as good as she eats then we would be home already so we are hopeful she will continue to gain weight & grow. She is 7 pounds and 5 ounces now!
As far as a long term outcome or diagnosis we have heard some pretty ugly things but again we have heard these before she was even born and we are still here. We look to the medical team for immediate care plans and we look to God for the rest. We feel strongly that He will guide the hands, hearts and minds of those that matter. Only time shall tell what His plans are for her, we are hopeful and prayerful they involve someday coming home to a family that loves her with all their hearts.
The adjustment away from our Centennial family continues. I have to remind myself daily that this is not about us, it is about Bella and making sure she is in the place that she needs to be. I have to not let myself get caught up in the little gripes that come with unfamiliar hands treating my child and trust that each one of them are in our life for a reason. Hopefully they will remember that I am just a Mother that wants the best and at times feels so out of control of my own daughters comfort level. So I pray for patience for myself and for all of her caregivers. I also realize that they might not be as scared of the "pissed off 7 pound baby" as they are of the crazy, demanding Mother so I will take some deep breaths and TRY to chill out :)
Our journey continues with prayer, love and hope...
Much love to you all
Telisha
Wow - sounds like some big changes in her careplan - and it sounds like she likes them! Keep looking for those special nurses that you connect with, and don't be shy about asking them to sign up on her! We'll continue thinking about and praying for you guys!
ReplyDeleteI am so proud of that little girl at 7.5 lbs. Please let me know if I can help with anything. I love you guys.
ReplyDeletePrayers for Miss Bella and her family. Praying the care plans work perfectly as well. So happy to hear she is responding well to her new line of treatments. She is going to get better with each passing day for the Lord is holding her and taking care of her as only he can. May he guide the hands of the Dr's and nurses as well as all the specialists that will be caring for her. She will travel in God's love and embrace down her pathway to a bright and beautiful future with her loving family and friends.We pray she will be able to come home soon.Trust in the Lord's choices of her treatments T . Everyone that does come into your lives is there for a reason. May all the reasons be positive , nurturing, caring and loving for your entire family. God Bless you Telisha, Chris, Dylan and Bella and God Bless the little children.
ReplyDeleteIt sounds like the change in hospitals was a good thing for her. Once you all adjust to the change in environment, I hope things will improve for Bella. Your attitude and strength are admirable and inspiring.
ReplyDeletePreemies mean so much to us. I want to let you know that we will be participating in the Bloggers Unite Fight for Preemies event on November 17th, Prematurity Awareness Day. I thought you might be interested in joining us. Here’s a link for more info and to sign up to help us spread the word: http://bit.ly/a6y8hj. Nov. 17th is the day we all fight – because babies shouldn’t have to.
I hope all if going well at VCH. I think of all of you often and keep you in my prayers. xxoo Lee Ann
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