We spoke with the Dr today that has been on call for the past 2 and a half weeks. We have grown rather fond of him and have a great respect for his skills and bed side manner. He is brilliant and realistic without losing his sense of compassion for the parents and patient.
He tells us that the Echo is showing severe pulmonary hypertension and the right side of the heart is much more strained than it was in her last echo that was taken 3 and a half weeks ago. He gave us the cold, hard facts and wanted to hear what we had to say in return. Of course we are ever optimistic, prayerful and continuing to fight with her. We are realistic as to what the medical facts and statistics are telling us but we are insistent that we are still here for a reason and only the Lord knows what that reason is and only He will tell us when it is time to let go. The Dr agrees that we should remain prayerful that with time and proper nutrition she may overcome this as well. He just wanted to make sure that we were aware of the medical facts and what could occur should she not show signs of responsiveness to the treatment over time.
We were disheartened to find her requiring 100% oxygen this morning. Basically she has gone from 65 % to 100% in a little over a day's time. The Dr has checked for infection as this is a rather sudden change in condition but nothing is showing up yet. He says that at this time he has to credit it to the nitric wean and her heart not tolerating. They have increased nitric back to 5 ppm now. Her saturations are good when she is calm, she has been in 80s to mid 90s. She just happens to drop down when she gets irritated and she is slow to come back up. Despite everything going on she looks good and all else is going well.
The news that came last night really shook me up because it is something that I have feared from the beginning but everyone including Vanderbilt in the beginning had told us the hypertension is moderate and not a factor in her frequent set backs. As a parent I feel like I should have pushed harder for further investigation and gone with my gut instinct on this one. I won't get too caught up in it as we are following the path the Lord has set before us and this is where it has taken us so I have to think every step along the way is part of a bigger plan. I only want to say that if there are any preemie mom's out there just going into this situation please, please be an advocate for your child. Do not be afraid to speak up, do not second guess your intuition as a mother and be persistent. Someone will eventually listen to you and if not then at least you know you have done everything you can to help.
We have come to love our new home at Vanderbilt, we have come to appreciate the staff and they have come to know and love Bella. She gets spoiled by her primary nurses (which we finally have a few exceptional ones!) and she has won the affection of the Dr's and nurse practitioners. We feel with all of our hearts that the Lord led us to the right place at the right time. Our family at Centennial has remained as wonderful of friends as they were caretakers with frequent visits and phone calls. We have made some life long friends in this journey and we are eternally grateful for that.
The Holy Spirit has comforted us today. Even after the cold, hard medical facts we are upbeat and ever hopeful. We pray for growth for Bella and responsiveness to the treatment for the hypertension. We are truly thankful for our God and being able to turn all of this over to Him....We continue to follow the path He has set before us with love, hope and prayer.
Much love to all
Telisha
The Lord will carry you all through this time. When you felt upbeat and hopeful it was then he was carrying you in his ever loving and powerful arms. giving you comfort, healing, love, hope and peace. May the Lord continue to hold tight to your family and give you the comfort and support he knows you need when you need it. May he reach into Bella's body and ease her pain and suffering by healing her one measure at a time. I look into her big beautiful eyes on the web when you post her pictures. What I see is a beautiful, strong,loving angel of God. I see the purity of his love shine from her eyes for all the world to see,I see heaven itself in the beauty he has given her and last but not least I see a extremely strong soldier for Christ that is allowing us here on this earth to witness one miracle at a time when this world seems to be spinning out of control around us all we only need to do is look into the eyes of an angel named Bella and see our Father in heaven is alive and here among us through her. God bless all of you and Bella and God bless the ones whom have a hand guided by God in her care. Most of all God Bless the little children for they are the closest thing to Heaven here on Earth. Much Love, Hugs, Support, Comfort and Prayer for your entire family.
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