Tuesday, December 2, 2014

1 Month





Scarlett's nurse came over to me while I was in Grayson's area and quietly told me.  Instantly I felt the water welling up in my eyes.  How could I cry over this after everything we've been through this past month?  How did I even have tears left?  I asked when it was happening, and she said it would take place in 30 minutes.  Trish was in the pumping room but I wanted her there so we could grab embrace each other.  I've been so involved and did so much research, but I was floored by THIS news...  Scarlett was going to wear clothes!  The bed was not regulating her temperature correctly.  It kept warming the isolette even though her skin temperature was warm enough.  They decided to switch her to "air mode" so they could manually set the temperature.  Because she is doing so well on the SiPAP, they decided they could let her wear clothes (they are not worried about needing to see her chest move).



She is 2 pounds, 15 ounces and doing well.  Everyone who has worked with her has been impressed that she has done so well on the machine.  Her lungs sound good, her oxygen needs are typically between 30-35%.  They decided not to do her ultrasound because things are going so well.  As the doctor put it, "We don't want to go looking for problems."

Grayson's doing OK.  He weighed 3 pounds but that seems unlikely.  The error may be due to a brand new bed.  It may be that he has so much fluid in his lungs that adds to his weight, but we are not expecting him to be near that tomorrow.  His echo showed that his PDA (duct in his heart that should be closed) was open wide.  They decided to limit his fluids and gave him a dose of lasix to help get rid of some of the fluid.

His head ultrasound showed the beginnings of Periventricular leukomalacia (PVL), a type of brain damage, on both sides of his brain.  Just like his IVH (Brain Bleeds), we won't know how it impacts him until his older, but there is a strong possibility that he will have delayed mental development, motor issues, coordination issues, vision and/or hearing issues.  There is also a strong possibility of issues like Cerebral Palsy or seizures.  Whatever the outcome is, we take solace in the fact that God is in control!

3 comments:

  1. God, you had big improvements planned for Scarlett...she gets to wear clothes. We are grateful that she is doing so well on the SiPAP machine and that her lungs are doing so well after such a long struggle.

    Mary, our Mother, you know how it feels to be a Mom. At the marriage feast of Cana, we saw that your Son could not refuse your request to help the bride and groom even if it really wasn't exactly the time to do something public in the big plan. We ask you to look on Tricia and Tim and their dedication as parents and intercede with your Son on Grayson's behalf. We know that God has a plan but we also know you are a powerful advocate with your Son and that Jesus will never turn a deaf ear to your requests.

    God, we continue to plead for healing and health for both Grayson and Scarlett. You have shown what miracles you can achieve by inspiring the doctors and nurses. Scarlett is proof. Please help the medical professionals find a way, with your help, to move Grayson along in this process. We continue to pray for Tricia and Tim who struggle to deal with and understand the many facets of their children's development. Give them the strength they need to support and comfort one another. We trust in you...help us when we are weak in our trust.

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  2. Wonderful news! Clothes for Scarlett! As I read your first sentences, my heart stopped beating. As I read on, I was relieved to hear good news. Thank God.
    The power of prayer and intercession is surrounding these babies and your family. We will continue to ask for God's perfect plan for Grayson and Scarlett, and nothing less than His plan for them. Mother in Heaven, take our prayers and needs to your Son. We seek your help and intercession. Continue to hold these precious twins close to your heart.

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  3. Special prayers for Grayson on the way!

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