Well the remainder of last week brought us some possible answers and improvements from Miss Bella.
Our Dr informed us that she had spoken with an associate at Vanderbilt, he had so kindly presented Bella's situation at a department meeting to get feedback. He called back and said that some of the Dr's mentioned it sounded like she could be dealing with silent aspiration and may have aspirated (milk went into her lungs) while bottle feeding. Once the Dr mentioned this to us a light bulb went off in our heads and it began to make sense. She showed many symptoms the last few days before going back on the vent that lead us to believe this is what happened. It would cause respiratory distress, require higher oxygen needs and inflammation in the lungs; all things Bella is dealing with. We started her on anti-biotics early last week and she is definitely improving. It is hard for us to tell at this point how far back she went this time due to the fact that she has extremely premature lungs or if it was in fact the aspirating. We are hopeful that it is a bit of both. We have discontinued the steroids so hopefully once the inflammation clears up we can get a better picture of where we stand.
The Dr's did their care conference which did not bring any new ideas of treatments that have not been used so far. But we did learn that not all of her Dr's agree with the original statement that her lungs are lethally chronic. It is too early to tell. All of the Dr's did agree that Bella should go to Vanderbilt for a trach evaluation. We learned that she needs to have certain vent settings to be considered. Luckily this last week has brought us closer to meeting those requirements as we have been able to wean a great deal. Our hopes are to get her where she needs to be this week and work on the transfer the following if not before. We are at peace with the transfer to Vanderbilt. The Lord has sent many people into our lives with great information, advice and contacts to give us confidence in leaving our home here at Centennial. From what we understand the evaluation for the trach could take several weeks once we get there but will put Bella in front of many specialists that could have some new input for us. The trach will not help directly with the improvement of her lungs but it will allow her to have a quality of life while we patiently wait for her lungs to improve so that alone makes us very comfortable with the idea now.
We feel so incredibly blessed that the Lord did send some answers to us. In the silence I also hear "be patient" from Him so we will see what He has planned. We are hopeful, prayerful and ready to lean on the Lord to carry us thru what may come from here forward. It has been a long, hard road for all of us, the Lord knows our struggles, so we are working on not just turning over the big things to Him but every single detail of our life. I know that if we do we can make it thru this thing and come out better in the end.
Thank you all for the continued prayers. We are appreciative of every single one. She is a testament to the power.
Much love to you all
Telisha
Let's hear it for the little powerhouse, Bella!
ReplyDeleteThat sweet little body is also a tough one and she continues to pull through at every turn. The power of love and prayer helps her with her body struggles. I pray that you will make the move soon to Vanderbilt and see her through to the next level of health and healing. You will all find many new friends here that will help with leaving the dear ones you have made at Centennial.
Love to you all! Lee Ann
Matthew 19:14 Jesus said . "Let the little children come to me and do not forbid them :for of such is the Kingdom of Heaven."
ReplyDeleteWhen you look upon a child you look upon heaven itself. God Bless all the little children. God Bless Bella as she continues to fight this battle as God's chosen angel. It will be a war she will win because her Heavenly father is right there with her giving her rest, strength, spirit and love and healing her tiny body a little at a time. He is there holding you Telisha and Chris and Dylan even when you are not aware of his presence . It could be as simple as a butterfly or feather floating by or the song of a bird singing comfort to your ears. Listen closely and you shall hear him in the wind around you with the rustling of the leaves, the smell of Autum or a child's laughter. You will always know he is there when you look into Bella's eyes and see that little twinkle like the stars in Heaven itself. Stay strong in Him who will never leave you or forsake you . Feel his warmth and confort as the angels wrap their wings around your entire family and hold you close.Bella will come home to prove God's love to all who have the great opportunity to meet her. We love you all and are always talking to our Father in Humble prayer for Bella and her family. God Bless you all and God Bless the little children.
You have no idea who I am, but I stumbled upon your blog somehow. I think your due date was probably close to mine (end of September?). Anyway, I had twins, a NICU baby and a baby who returned to heaven. I'm always looking for the support from those who have experienced the NICU. It's rough. Thankfully my NICU baby is home now. I will keep Bella and your adorable family in my prayers.
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