Monday, July 18, 2011


Today was a complete 180 from yesterday. 

Quick update on weights:  William is now 2lb 3oz, Aaron is still 1lb 11oz.

When we arrived this morning, we were greeted by the new doctor of the week...with the news that William was reintubated (back on the ventilator), and Aaron was back on the CPAP.  Yes, our little man who was breathing room air yesterday, and who has a battle scar from the CPAP, was back on CPAP - and possibly also moving back to the ventilator.  Both boys needed more blood drawn to test for infection, and both needed another ECHO done to check their PDA.  The feedings for both boys are stopped until their symptoms clear up.  This was not how we were expecting to enter the NICU today.

We sat with the boys for a little while and were chatting with the nurse when Aaron began to have an apnea/brady spell.  The nurse was having a hard time getting him back up and running, so we stepped away to let them do their work.  As we were heading back to the entryway, the other nurses were bringing curtains around his isolette.  And then we waited.  Stephen apparently knew that they were reintubating him at this point, but I had no idea what was going on and thought for a good several moments that we were losing him.  One of our pastors actually texted me while these thoughts were running through my head, asking if we were at the hospital to visit.  With the timing, I think it was God's way of checking in and saying that he's here.

Aaron had completely changed overnight.  Possible causes - the PDA was finally showing its symptoms, or an infection.  With William, I had suspected that the ventilator might be back in his future due to all of his breathing issues in the past week or so.  I did not expect it with Aaron, our healthy little fighter.

We received the results of the tests this evening - both boys still have PDA, and both have enlarged to the point where, combined with the symptoms, they each need the surgery to correct it.  While the surgery does have some risks, it is fairly common and when done should start resolving some of the issues both boys are having.  William should be able to have the surgery within the next few days.

Aaron, however, also has a blood infection.  The possible site of the infection is in the PICC line, which will be removed tonight and replaced with a peripheral IV.  Because the infection is in his blood, he also needs a lumbar puncture (spinal tap) to test the spinal fluid for infection.  Unless the cardiologists indicates otherwise, he will need to hold off on his surgery until the treatment has completed in about 14 days.  If the surgery must be done sooner, it would probably be next Monday.

Our good piece of news for the day, which I find somewhat humorous after everything else today - the plastic surgeon looked at Aaron's nose, and it should heal on its own.  In the grand scheme of things, it's minor and just a wound not worthy of being called a cosmetic issue. 

I know the NICU journey is a rollercoaster.  We've been cruising along fairly smoothly for the past week, so we were apparently due a little dip.  Please keep praying for the boys, and for us - for the strength to handle the dips, for Aaron's infection to clear without issues, successful surgeries, the list goes on.  It's a little harder to stay upbeat on down days, but I know there's a light at the end of the tunnel...we just need to get them through the next few months and then we will have our beautiful boys home with us.

Final comment for the day:  Happy 3 weeks to the boys!


  1. Hey Helen and Stephen. Just wanted to check in and let you know I'm praying for you and the twins and the doctors and the nurses. I know each baby is different and things change from minute to minute but Daniel had so many infections and had to have so many blood transfusions because of that darn picc line so I feel you on that one. Also, Daniel had gone off the respirator and CPAP but then was put back on and I was devastated but as it was explained to me, the doctors wanted to make sure he could breathe on his own and once he proved he could, they put him back on so he wouldn't have to work so hard.

  2. Thank God that he is our Lord in times of uncertainty as well as joy. He is the God of all. My grandmother used to say that in stillness was her strength. I pray that God strengthens the boys, allows a calm to envelope them.

    Just as Jesus withdrew to a deserted place, perhaps a step backward (as much as it doesn't make sense in our linear world) will be restorative. My prayer is that God is carrying out His restorative plan... Like when you draw the boys toward you for kangaroo care, dependent on your warm embrace... Imagine God drawing the boys inward, for the restorative strength that He, the Creator can provide, as He readies them for the next step forward!!