An Intro - part III

With Anthony recovering Kim and I could finally breath a sigh of relief.

During Anthony's stay at UCLA he was put back on a normal ventilator, instead of the osolating one he was used to. This we believe caused the most damage to his under developed lungs. This damage we would later see in X-Rays involved having 80% of his lungs being nothing but scar tissue. Scary as it was we were assured later by his Pulminologist that by the time he was older this 80% would be a lot smaller and as long as we kept him from getting sick the worse he would have to worry about is he'd need to run with the fat kids because of a decreased lung capacity. 


Then there was the incident that made us hate UCLA. The evening after his surgery Anthony's nurse, a student, warned us that he wasn't peeing as much as he should. She then told us all the bad things that could be happening, Kidney's shutting down etc. It was a lot to listen to especially after just having him go through a surgery. Kim and I had to leave and catch a breather. When we cam back up an hour later we were surprised and happy to learn that Anthony was peeing correctly it seems that when they put the catheter on him (basically a condom with a tube) it was not on all the way so the urine caught in the bag was just a small amount and his diaper was overflowing. I just wanted to ask the nurse WTF she was thinking putting us through this extra stress without checking his diaper first.


After the weekend I ended up going back to work and Kim and I continued to make the trip to visit Anthony everyday at UCLA until our week was up and he was delivered back to our NICU.

First family photo

Looking back on it now the days and weeks started to fly by. With Anthony's PDA taken care of he started to gain weight and with the weight gain he was getting healthier. Anthony's ventilator settings were getting lower, he was moved from his Cadillac (Giraffe Isolate) and his feeds were now coming from a bottle.

Being a preemie Anthony naturally had some digestion issues which but it was helped greatly by switching him to a partially digested formula made by Similac Almentium.


When Anthony first came to the NICU he started all the way in the right hand side of the room, where the really sick kids go and when he was finally able to go home he'd be on the left hand side. He was now in the middle. Kim and I were now being invited to help change his diapers and give him baths all in hopes of getting us ready for the big day! 

Then something unexpected happened, I lost my job. The company I was working at at the time was in the sub-prime loan business and well we all know how that ended up. Not only did I have a son in the NICU I now had to worry about money coming in and the inevitable rise in health insurance costs.


Then the night of our sleep over came, before a kid can go home from the NICU the parents must first room in with the kid and take care of them through the night. We started the night by picking some food up on the way to the hospital. This was going to be fun, our kid was finally going to come home tomorrow! But the night would be a reminder that preemies are unpredictable. 


Anthony spent most of the night up in pain, he was having some major gas pains something that the nurse was telling us was that he was just hungry and kept having us give him food.  Sure he was eating it but that wasn't the problem. I ended up sleeping for a couple of hours with my hand on his stomach and armed draped over his bed railing. This seemed to help. Kim has mentioned frequently since that she doesn't know why we just didn't bring him into the bed but we were noobs and this was new to us. The alarms went off several times during the night but we didn't think much of them. Anyone who has spent time in the NICU will tell you you get used to the alarms, you learn to read the readings and visually confirm the kid is alright.


The next morning however the nurse came to pick Anthony up and we went home to prepare for Anthony's iminate arrival. Then we received a call. It was a nurse from the NICU, Anthony was havings A & B's (Apnea & Bradycardia). It had been awhile since he had had these, so the homecoming was postponed a week while he recovered from the night before.


The week ended and it happened, Anthony came home!

All told Anthony spent 91 days in the NICU, had one surgery to fix a PDA, multiple EKG's, X-Rays, Ultrasounds, a chest tube, eye exams, two ambulance rides, healed a grade one brain bleed, some minor seizures and countless other things. He also had a price tag $1+ million but he was worth every penny to us the health insurance might say something different but screw them.


Anthony left the hospital weighing 6lbs, needing oxygen, an apnea monitor full time, breathing treatments and needing 3 different medicines through out the day. This was really the best case scenario for us we were happy and overwhelmed. We knew that the battle wasn't over but at home he would thrive. 


We owe everything we have to those NICU nurses and we make a visits every year since to visit with them and to donate clothing and toys. They were our family for the longest time. They were the ones that comforted us during the ups and downs. They were the ones that saved Anthony's life.

Prologue


Anthony remained on the oxygen for awhile until the day came he woke up with the oxygen tube wrapped around his neck and then the doctor agreed it was time to go. 


The apnea monitor was a pain but it was a safety blanket. It really only went off a couple of times but those were user error. 


The medicines Anthony slowly came off of and it was nice not having to play chemistry in the middle of the night. 


The NICU also had Anthony on a nice schedule, feedings every 3 hours on the dot.

Then one of my favorite days ever came when Anthony was finally free of all the tubes and wires and we finally had our little boy all to ourselves.