Wednesday, July 6, 2011

The Good, the Bad, and the Ugly

Let me start out with the good things from today.  When I first got in this morning, the nurses told me that they had taken x-rays of Aaron's stomach, as they were pulling bile back up from his tummy and it was swollen.  This could indicate NEC, a severe intestinal disease, or simply that the tube was pushed too far down.  As it turned out, it was actually air.  His CPAP was pushing too much air into him that he wasn't they moved him onward and upward to the nasal cannula :) The nasal cannula provides assistance but does not seal around his nose, so he can use the extra assistance or not use it at will.  It's nice to have the headgear off of him, you can finally see his face.

Also, Stephen held William for an hour, and I held Aaron.  They are sooo tiny but it's such a good feeling to hold them.  :)

The repeat head ultrasounds were today.  We've been holding our breaths for this, as we were concerned about William after the last scan.  Aaron also had a bleed, but William's was worse.  In another twist...William's bleed is now stable.  He does have some build up of spinal fluid, which is common for his level of bleed.  The nurses will keep him monitored and measure his head every day, to see if the fluid starts to drain on its own.  If it does not, it could cause hydrocephalus, with the pressure needing to be relieved by spinal taps.  If spinal taps are ineffective, a shunt is the next step.  While there could be some damage from the initial bleed, at this point everything looks good as long as we can keep the pressure from building from the fluid.

Now the not so good news.  Aaron has a new bleed, of the most severe, on both sides of the brain.  This was a huge kick to the gut, to say the least.  The doctor had a discouraging conversation with us regarding the potential outcomes of the bleed.  We knew there would be ups and downs with the NICU, but they've been doing so well - especially Aaron, our little fighter.  While I've now read plenty of stories of preemies who have overcome severe brain bleeds with little delays, the vast spectrum of potential future issues is daunting, and wasn't helped with the doctor's assessment.  Please pray for us to find the strength to deal with whatever may come, but mostly for Aaron to overcome this, and for his brain to grow and rewire the best way possible.

Isaiah 40:11:  He will gather the lambs with His arms and carry them close to His heart. He will gently lead those who are with young ones.


  1. My prayers are with you all. I'm so sorry you are having to go through this. Keep positive and believe in God's will.

  2. Dear Helen, Stephen, and Anna,

    My prayers are with you. Today sounds daunting... but God is with you and His little blessings. Your Bible verse is perfect. Another for you today: "I can do all things through Christ who strengthens me.". Philippians 4:13

    The doctors are blessed with experience and training, but your God can move mountains! I am fiercly praying for His protection over your family.

    Let me know if I can have Anna over to play with Bennett and maybe make some cookies for William and Aaron's nurses...

    Love and prayers,

  3. Helen and Stephen,

    My thoughts and prayers are with you and your sweet boys!
    Remember doctors only see the now but God already knows the future.
    May God bless you both with continued strength and William & Aaron with continued healing.

    Stephanie Kramer

  4. Helen & Stephen -

    RAMOM member here - 19 weeks 3 days along. Please know that you are in my husband's and my thoughts and prayers. Wishing you the best of luck!

    Go William and Aaron! We're rooting for you guys!

    Sarah (& David)