May 3, 2020

Today was another okay, mostly stable day. We are very grateful for that.

Update on James: Overnight he was taken off of his back-up ventilator because the nurses thought he was strong enough to handle it, but he had trouble breathing like that so after a few hours he was put back on the back-up ventilator. His chest x-ray looked a little better again, which hopefully means his heart and lungs are improving. His blood pressure has also been better, and he has been off of Dopamine, which was helping his blood pressure. He is still on Ativan to help his stress levels during procedures and care checks. He is getting 2 mL of my breast milk every 6 hours. We have not been able to hold him yet because he is still not completely stable. However, the nurse practitioner today said he is doing average and expected for his age and circumstances, so that’s good to hear.

Update on Vera: Vera was taking off of the ventilator yesterday. We were nervous about this because the nurses tried this a few days ago and she struggled and had to be put back on it. So far she is doing very well off of it, and it has been about 36 hours. She has had a few breathing “spells” but has been able to correct it herself without nurse intervention. Vera started today off with a blood transfusion because her Hemoglobin was low. The nurses say it was probably low because she has had so much blood taken for labs and also just because her body is immature and not able to make enough red blood cells. The blood transfusion went well. She is getting 2 mL of my breast milk every 3 hours. A good highlight of Vera’s day today was that I got to hold her for the second time, this time for about two hours. She is also starting to cry, pretty loud, which is fun to hear. She has also been opening her eyes which is super cute. The nurse practitioner said that Vera is doing better than expected for her circumstances (yay) and it is impressive that she is off of the ventilator so early.

Our main goals for the night are for James to stay stable, keep his ventilator’s oxygen levels down and his blood pressure up, and continue to see improvements with his heart. Our main goals for the night for Vera are for her to continue to breathe successfully without the ventilator, have good labs, and show a positive response to the blood transfusion.


  • Misty Thompson

    They are miracles for sure!! So happy to hear of good progress and prayers that it stays on that track.❤️ Thinking of you all!

  • Cherie

    Congratulations to you both sending prayers that they continue to get stronger every day thinking of you and sending you my love


    Sending virtual hugs and best wishes for things to get better each and every day. Sending lots of prayers your way