Procedure #4

Gavin had a cardiac catherization this past Wednesday, in an effort to fix the narrowing of his left pulmonary artery (LPA) without having to go through another open heart  procedure.  The rate at which a baby's lungs develop is greatly affected by the amount of blood flow to the lungs.  Gavin's LPA was about 50% of the size it should have been, and therefore his cardiologist was concerned that without intervention, Gavin's left lung would fail to develop normally.

The procedure took about three and a half hours.  First, the cardiologist used a catheter to take pictures of Gavin's heart and examine the LPA, and other areas of his heart's anatomy, in better detail than could be seen on his last echocardiogram.  The next step was to put a balloon on the end of the catheter and inflate it inside of the LPA in an effort to break it open some and allow more blood to pass through to the lungs.  If the balloon didn't work, the next step would be to insert a stent.  The cardiologist was successful in cracking open the artery with the balloon, but one area is still more narrowed than he would like.  However, with Gavin having had an operation nine days prior and only being two months out from his open heart surgery, the cardiologist felt that there would be more risk than necessary to attempt to place the stent.  While the balloon didn't fix the LPA as well as he would have liked, it did make a significant improvement.  Had there been an issue with placing the stent, the only way to fix it would have been another open heart operation.  Gavin's body just needs a break for a little while, before he should endure anything like that (if necessary).

And now we wait.  In about three months, cardiology will do a contrast study to look at Gavin's heart and lungs.  The will measure the amount of pressure and blood flow going from the heart to each lung.  If both lungs look fairly even, then nothing else needs to be done.  If it still seems like the LPA isn't letting enough blood flow through to his left lung, then we'll be back in the cath lab to have that stent placed after all.

As usual, Gavin ended up in the ICU after the procedure.  He really has a hard time coming off of anesthesia and a ventilator.  I personally think the anesthesiologist took him off of the ventilator too soon this time.  Gavin has never come directly out of anesthesia and had a ventilator removed.  He is usually on it for hours, if not days.  This time, he was taken off of it almost immediately.  When we went back to see him, he was really struggling to catch his breath.  It was very ragged and shallow and he was working hard.  The nurse gave him a breathing treatment and some morphine and he was able to get his breathing back to normal.

After an uneventful night in the ICU, Gavin came home.  We are crossing our fingers and praying that this is the last time he'll be in the hospital, until he has to have his colonoscopy closed.  At this point, I would be happy with a full month out of the hospital and surgery free.  He really is a resilient baby.  It still seems surreal at times that he has gone through so much, and we have come close to losing him so many times in his short three months on this earth.  But this kid is a fighter of epic proportions, and I see him getting stronger every day.  He is eating like a champ and finally putting on weight.  One day we'll be out of these newborn clothes and on to the 0-3 month ones!

Chris is headed back, and of course on his way out, the winter storm hit.  And Gavin's ostomy bag started leaking right before we were piling in the car to head to the airport.  Luckily, Chris was here to do ONE MORE bag change.  It is leaps and bounds easier with an extra pair of hands.  Between keeping Gavin's arms and legs down so he doesn't get anything in the opening, and trying to clean and prep the area and get the bag set and placed correctly it seems like it's a requirement to have two people.  The hospital has set up for us to have a nurse come to the house as needed over the next two weeks to help me with the ostomy bag and to check on things like Gavin's weight gain and signs of infection.  It's such a blessing to have the opportunity to have a nurse help the transition from having help to being on my own. 

Gavin was asleep in the backseat when Chris left.  But Lorelai was wide awake and this was the most heartbreaking going away yet.  As soon as he stepped out of the car, she started and screaming and crying "No Daddy bye bye!" over and over again.  Then he went to hug her and she wouldn't let him go.  He literally had to peel each of her hands off of him as she kept screaming for him.  It was absolutely heartbreaking.  Luckily, kids bounce back fast.  The night he left, I heard her Daddy bear on the baby monitor at least 20 times say "Lorelai, Daddy loves you and misses you" as she pressed it again and again before finally falling asleep. 

I woke up this morning and fell back into the routine of being a sole caretaker for the time being.  It's a little tricker trying to manage the ostomy bag, but because Chris changed it before he left, I shouldn't have to change it by myself until tomorrow.  And I'll have the nurse available to help me if I need it.  I LOVE watching Lorelai with Gavin.  If I'm holding him, she'll climb up beside me and just hold his hand.  Sometimes she'll rub the top of his head or his face and just say his name.  She helps pat his back when he needs to burp.  She brings me a diaper if he needs to be changed.  And she loves giving him kisses.

I can't lie.  Life is HARD right now.  But it is so BEAUTIFUL.  The minute you hold Gavin, you can feel how precious and awe inspiring his life and spirit truly are.  Thank you all again for your continued prayers, support and encouragement.  And thank you for following us on Gavin's journey!