The Waiting Game

So there we were in the NICU, our baby took two steps backwards. Now it was time to wait. We had to wait almost two weeks to have the bronchoscopy done, partially because the Children's Hospital was moving into a brand new building. A bronchosocpy is considered a surgical procedure, so Jack was put under for it. The surgeon told us that he had to take the breathing tube out to preform this procedure, and if he could not get it back in, that he would have to preform a tracheotomy. It was a very scary time, but I wanted so badly to know what was wrong. I was tired of waiting.

Back on the ventilator and moved to the more "critical" area of the NICU.

The glow behind us is another baby under the bili lights for jaundice babies.

I made Jack the Sox blankie as a surprise for his daddy!

This is how I spent my days. Holding my little baby all swaddled up tight so he could not get his hands out!

The procedure was quickly preformed, and the surgeon reported his finding to us. Jack, thankfully, did not have to have a tracheotomy. They thought he had something called subglotic stenosis. All of these things, like the ventilator, that keep our sick little babies alive, also harm them too. Subglotic stenosis is a complication of being on the ventilator in which the airway narrows and causes babies to have a difficult time breathing. The surgeon showed us the pictures he took of Jack's airway during the procedure, it looked blistered and raw. So the breathing tube was actually keeping Jack's airway open, not breathing for him. The cure for this...being on the ventilator longer and seeing what happens...the doctor said maybe two months. Then we would look into other options, procedures and a possible tracheotomy. Oh how the thought of a trach was so incredibly scary to me! Nurses talked with us about him coming home with a trach and a ventilator and the home nursing we would receive...all I could do was old my head in my hands and cry. This was going to be a long journey.

So we waited. During our waiting, we moved from the NICU we became very familiar with to the NICU which would become our home. Jack was on the ventilator for that move, but I trusted his nurses, respiratory therapists and all the medical staff to get him safely to his new room.

Safe and sound in his new, private, room!

Still cute as can be!

The orange tube coming out of his nose is his NG tube. That is how he received his formula.

While we were waiting for Jack to come off of the ventilator, he would occasionally self-extubate himself...that means he would pull the tube out of his mouth every so often. This was a big deal considering what happened when they couldn't get the tube in a few weeks back. But the respiratory therapist always told me that he did great off of the ventilator and they had no problems replacing the tube. After this happening more than enough times, the doctor, surgeon and respiratory therapist thought it would be a good idea to give Jack a trial with out the ventilator. He had been on the ventilator for about five weeks or so. I had planned a trip home, but cancelled to see how this trial would go...and it was a great success!!!!!!!!! He didn't even need any oxygen!!!!!!

Fresh off of the ventilator!

I think he was pretty happy not to have that tube down his throat any more!

No tube down the throat means we can now start bottle feedings! And you loved it!

Holding Jack was so much more enjoyable for both of us!

What a relief! The surgeon was amazed at what great success he had breathing on his own. And there were no signs of the stridor! I called the NICU constantly after this to keep checking on Jack and see how he was doing and how he was sounding. The week after Jack came off the ventilator was pretty stressful for me, but Jack did beautifully! I could now pick him up whenever I wanted to and place him back in his crib with ease. When Jack was on the vent, it took two people to place him in my arms and then I would sit, in one position, for hours, with tubes taped to my shoulder, it was very uncomfortable, but I would do anything to hold my sweet baby boy.

Oh what sweet relief for us! One less thing to worry about! We could all finally breathe a little more comfortably now. Now we were in our new NICU home, waiting for Jack's reconnect surgery.