Well this blog is long overdue....I have few excuses for the lack of updates other than it has seemed to good to be true. Somehow my mother's instinct on this has unfortunately proven to be right once again.
Since transferring to Vanderbilt, Bella has done the best in many aspects that we have ever seen her do. Just a little over a week ago she was on 43-50% oxygen. The best we have ever seen. She seemed to be moving forward at a wonderful pace. They started weaning her pressures on the vent, weaning her nitric, weaning her pain medicine and working towards her trach surgery or possibly extabating her from the vent.
Tonight I got a call from the Dr, it is never good when a Dr calls you at 9 pm on Friday night. He is compassionate and a parent so knew that I would call to get a report from the nurse. He wanted to give me the news instead.
She had an Echo today. This shows what the heart looks like. He tells me the right side of her heart is showing extreme stress and is very concerning. It shows that her pulmonary hypertension is a major concern. He says that 50% of children outgrow this condition, the other 50% have more fatal outcomes and the right side of the heart gives out. He says that her gestational age and lung condition more than likely puts her in the 50% fatal outcome.
We are going in to meet with him tomorrow to discuss possible care plans from here. He says they need some time to discuss and figure out where to go. Tonight she is on 75% oxygen, gone up from 1 ppm nitric to 3 ppm and heart rate around 180. We have many, many questions that will be addressed tomorrow and even more so on Monday when we speak with the cardiologist.
I have had many, many talks with Dr's with very grim news. It should get easier but it doesn't...As optimistic, prayerful and hopeful we are,it is still very, very upsetting.
So tonight I pray for guidance for the medical staff as to her treatment. I pray for healing from our Lord that can provide divine intervention. I pray for peace and wisdom to ask the right questions and provide the right feedback to assist or motivate. I pray for trust that God does not have a plan B. I pray for peace. I pray for acceptance of His will and I pray for a gracious heart that appreciates we have been given 6 months that we should not have been. I pray that the Holy Spirit comforts me and takes away this hurt in my heart, this huge knot in my stomach that won't allow me to normally breathe , eat or rest and this overwhelming since of sadness that comes with the thought of losing her.
I'm sorry that I don't have more uplifting news or thoughts. I pray that tomorrow I will.
Much love to all
Telisha
God has answered our prayers so many times with Bella so we will hope & pray that he will do so once again. Know that there are many people out here praying for baby Bella. Even though we heve never actually see, held or cuddled her we love her dearly. Take care & know you are loved. Bob & Peggy Haycraft
ReplyDeleteContinue to hold to God's unchanging hand. Bella is a very strong little girl.She has been fighting this battle for 6 months now and God has seen her through each and everyone of them. I humbly ask our Father in heaven to hold you and your family and especially Bella and see her through this time as he has seen her through each one. God please reach into Bella's body and heal her if it is your will . Ease any suffering she is going through . Make her a living example yet again of the miracles you perform each day. We praise you Father for allowing everyone to love your angel and we pray we can be allowed to continue to see her progress each day. We know there are times when the pathway becomes rough and we ask you pick this family up and carry them as you heal their baby Bella. Please Dear Lord Almighty hear our prayer. In your ever so Precious name we beg,AMEN God Bless the Cobb family and God bless everyone whom has a hand in your angels care,God bless the little children.
ReplyDeleteTelisha, I'm sorry to hear you've hit another challenge! Are you going to see Dr. Moore? He treated Becca for her pulmonary hypertension, and I really, really liked him. I think he's the expert on pulmonary hypertension, actually. Thankfully, Becca fell in the happy 50% - we'll be praying that Bella joins her there! :)
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