Tuesday, March 30, 2010

Two Amazing Days



At this time 2 nights ago we were sitting by Joanna praying that the Nitric Oxide would have the desired effects without the undesired side effects. Today, we are very happy to see that she has improved continually since we sat with her that night and the first ultrasound was negative for bleeding in the brain. She will have more scans as they remove the NO completely. She has been taken off of the Epinephrine and the Insulin that she had to be given because of her high blood sugar yesterday. She was on the light last night while we were there because of her jaundice but is now off of it. They are decreasing the Nitric Oxide every 3 hours by 1 point. At that rate if her numbers stay good she should be completely off of it by tomorrow night. Once she is off of it, she will be moved from the oscillator ventilator machine back to the normal ventilator. The oscillator ventilator is giving her 600 breaths per minute right now. It is a very high frequency machine that somehow works to help the lungs. Each time we go see her we have a little more reassurance God is working his miracles and giving her strength through this.

Rebecca is having excellent days also. As Jessica blogged, she got to go see her for the first time today since right after delivery. We talked with the cardiologists today while we were there and got a better understanding of her heart condition. They confirmed the defect was Pulmonary Valve Stenosis and Tricuspid Regurgitation, the same diagnosis as the fetal echo. Basically, the blood is supposed to go through the pulmonary valve to the lungs but her valve is not opening. At one point we thought the valve was missing but it is there, just not working. The short term treatment for this is medicine that is keeping the ductus arteriosus valve open which normally closes over time after a baby is delivered. This allows her blood to continue to the lungs kind of like a temporary bypass. The goal is to get to a point where she is big enough to have a balloon valvuloplasty procedure done which keeps the pulmonary valve open. While we were there today they put her under the light for jaundice also but this is no big deal. Tomorrow, she will get a PICC line which will be taking the place of the lines in her umbilical cord. The PICC is threaded through a vein to the heart but not into the heart. It will be her new line for fluids, medicine and what little nutrients she is getting before she gets her feeding tube. They explained there are some risks with that procedure as you can imagine, but they are minimal. Sissy will soon be getting one of these also. Just like Joanna, every minute spent with her makes us a little stronger knowing God is at work.

For those of you that watched The Office last week, I am doing my part in the milk production by acting like Kevin every once in a while. Tonight we are happy to report we have taken 2 bottles to NICU, both of which had only a few drops. I am the milk man, I deliver the milk. By the time the girls are ready for it, those drops will be combined to supply them what little they will require. We hope to ramp up production over the next few days to give both NICU's a good supply to start with. Mom is a pro and she is working diligently at this.

We plan to get Jessica discharged Thursday. She could go tomorrow but we decided to stay another day since Joanna is just down the hall. After that we are unsure of the plan. I think all of our plans will be written in pencil for the next 20+ years. It's tough, we are eager to get home to our girls there whom we miss dearly, but leaving Cincinnati without Joanna and Rebecca will be very difficult.

Some of Jessica's Castrale family came to visit today - Thanks Steve, Rose, Sue and Jane we were happy to see you.

I know I'm forgetting some details but it is getting late and there will be milk deliveries to be made tonight.

3 comments:

  1. Thanks so much for all of the updates. Brandon, you are so good at all of the details it helps us to feel a little closer to you guys. Such great news about the last few days. God is continuing to show all of us how great he is through his work on Joanna and Rebecca. May he continue to give the entire family peace and strength. Keeping you all in our prayers. - Brittney and Eddie Gomez

    ReplyDelete
  2. Thank you so much for updating each day about your little angels. We are continuing to pray for you.

    ReplyDelete
  3. Good pictures! I cannot wait to see you all tomorrow! I am so amazed at how good the girls look, tiny but healthy. God is sooooooo Good! Love the Office comment! See you tomorrow!!!!!
    Love,
    Emily

    ReplyDelete