FREE!!!

  Chase finally got to go home and be "wireless" today.  Don't have any details.  Just got a text with this adorable picture.

Love how alert he is.  Ready for his first transportation other than an ambulance or helicopter  in three weeks.

First Set-back- Correction

Apparently Chase failed his car seat test and has to remain hospitalized for further monitoring.  More details to follow.  Keep up the prayers.  His parents are obviously very disappointed.

Correction:  Chase passed his car seat test but had an arythmia earlier in the day.  It is apparently not a huge red flag for major concerns but they wanted to monitor him a little longer and perform another echocardiogram (Ultrasound of the heart).  They will know more in the morning.

Coming Home!

  Got a text from Brandi this morning saying, "My baby is coming home today!"  We talked for quite a while last night and she had said it was possible if he had good feedings through the  night.  He is taking a bottle well now, they will just have to transition back to actually nursing.  He was off Oxygen a few days ago and staying beautifully saturated, they just needed to be sure he was eating well.  They are trying to get some weight on him since he hasn't gained while being in the hospital obviously.  As of yesterday he was down to only wearing an ECG, blood pressure monitor, naso-gastric feeding tube and his PICC line.  But, as of today he will officially be "wireless" as Brandi says.  This is a huge relief when it is stressful to have to try to hold him and not pull on anything.  When I asked if she was nervous about bringing him home, she said she was so sick of the hospital now she was ready.  It is a lose- lose when you have three kids at home that need you and a newborn in the hospital an hour and a half away.  Also, she is confident that if they feel comfortable sending him home he should be fine.  Hard to believe one short week ago he was hanging on for life by a thread and now he gets to go home.  Also, I finally have pictures to share.  Ben and Brandi were a little sensitive about sharing them earlier, but now want people to be able to appreciate the condition he was in and see him. You will also be able to better appreciate the "wireless" statement.  So grateful for his miraculous recovery and the many many prayers and fasting in his behalf.   Once again, crying tears of joy.

The line in his head is his PICC line, the one in his neck is his central line, the tubing in his nose is his oxygen and feeding tube.  The bandage on his chest is covering his incision and obviously that is a heart monitor on his chest.   Love that his O2 is being kept in place by a heart shaped bandage.  I am sure that is not a coincidence.   

In this picture you can see he still has the brain pressure monitor which is the silver band on his head.  He is also on the ventilator here and still has his chest drains and the inter-arterial blood pressure monitor in his wrist as well as the kidney monitors on his belly.  Having his eyes open at this point was pretty rare since obviously it was a few days ago.  

What Brandi walked into yesterday.  Life in recovery is tough, who wouldn't appreciate a little "Nemo".

Our Little Miracle

Chase is doing so awesome.  I was able to talk to Brandi for just a few minutes yesterday.  She was whispering so she wouldn't wake Chase up.  Why does that matter?  Because it means he wasn't drugged into another world.  In fact he hasn't been on any pain meds since Friday.  Pretty incredible considering his chest was wide open up until Wednesday afternoon.   He was also being weaned off the Oxygen and has been working up to eating more.  They plan to try a bottle today.  With this type of surgery it is apparently too much to try to suck, swallow and breathe all at the same time too soon after. Brandi says he was awake a lot yesterday and that he was probably trying to make up for missing three weeks.  I am sure she is just grateful to see him conscious.  He also got transferred to a crib and can actually be wrapped up in a blanket now that he doesn't have tubes and monitors everywhere.  We are so grateful for the miracle of modern medicine and that Chase is recovering so well and expected to live a full healthy life despite being born with a condition that would have been unrepairable less than a century ago.

First Hug

I texted Brandi today to see how Chase was doing after his chest tubes were removed.  He had been really weak and his cry was inaudible while they were doing it so she was having a hard time. I wanted to know if she knew when they might get to hold him.   Her response; "I'm holding him right now. . . Heaven"   Brought happy tears to my eyes.  I can't imagine how long four days is when you can't hold your very fragile three week old.

First Meal!!

Chase is still doing great.  He doesn't have to wear the brain pressure monitor anymore, and is currently being fed his first real meal in two weeks through his feeding tube.  Chase is now off narcotics and no longer on a steady morphine drip.  This is a big relief and will prevent him from going through withdrawals.  It also means he is not as completely out of it.  His parents hope to be able to hold him in their arms again as soon as his chest tubes are pulled which may happen today.  He is really peaceful today and even smiling in his dreams.  Big day!

Another Good Day!

    Just as you think you can't cry anymore you start crying tears of joy non-stop.  They removed the ventilator about twenty minutes ago and Chase is doing awesome.  The plan is to remove the chest tubes in a couple hours and even try to feed him through his feeding tube this afternoon.  Incredibly, it will be his first feeding in two weeks!  Brandi says she is just thrilled today and after the emotional roller coaster it is good for the soul to see things coming off.  They are ecstatic he is doing so well, and I am too!  So glad they can have a bit more peace today and hope his recovery continues to go smoothly and rapidly!  Keep up the prayers, he's a fighter, but still has a long way to go.