Yesterday, 06/06/12 was my original due date. As far as NICU experiences go they usually tell families at their admission that the baby’s due date is about the time they’ll be getting home. It’s been a long tough road for us so far and Luke is still fighting hard. Although he was ‘supposed to be born today’ Luke isn’t quite there yet. The news of coming home still isn’t on the table but we’ve learned that TIME is a preemie’s best friend and the family’s worst enemy. He’ll tell us when he’s ready.
My apologies for the lack of blog updates lately. These past few weeks have been the most tummy churning part of the NICU experience. Everytime I sat in front of my laptop to update his website tears would take over. We’ve made tiny Facebook/Instagram/Text/Calls updates here and there but we’ve yet to tell the whole story. It’s one of those experiences that haunt you – that stay in the back of your head echoing and replaying over and over. I always look up to NICU graduates – they’ve been in simlar paths before and it amazes me that NICU babies and their families can take so much!
Let’s get caught up.
3 weeks ago, Luke had another episode that required CPR. This was his 3rd episode where he needed compressions. Like the 2nd episode – he started on Phenobarbital [at a lower dose] and was still on his regular sedation medications. That episode truly took a hit on him. He was rarely awake & fighting. He just didn’t seem normal. The doctors and the nurses saw it. I did too – but I was in denial. I always told myself that he’s just resting because he’s tired – or that he’s getting caught up with sleep. At that point the plan was just to keep him comfortable.
We had a conference with Luke’s doctor [for that week] and his primary nurses that know Luke very well. The days leading to the conference were so hard. I was scared of them to tell us that they’ve lost hope and Luke’s future isn’t as long as we expected it to be. In a way – that’s what it was about. His lifestyle.
- Luke’s Neurological reactions/senses are damaged. He will never be able to suck, swallow, cough, gag – He would never be able to clear his own airways
- Since there has been some apparent brain damage – He’ll need a few surgeries. Tracheotomy and a Fundoplication. But he’s too small at this point to move forward.
- He’ll be on the ventilator forever. Absolutely no extubation.
- He won’t have a normal life.
- Walking is out of the question.
- Luke isn’t progressing very well. Although this news is so bad, we’ll still be here for Luke and we won’t give up.
That conference took a toll on me. As much as I prepared for it – it was hard. I didn’t know what to ask. Each time I saw Luke after that was so hard. I held him every moment I can and tried to breathe life into him.
Soon after the conference, we requested for the Phenobarbital to be discontinued. Should they see signs of epilepsy to go ahead and resume. We wanted him to wake up and snap out of it. That took a few days. Each day I would pray that he wakes up. . . and sure enough the next week he was more alert. He was more needy. He started to act his age. He ALWAYS wanted to be held!
I started keeping track of little things. How many times he needed suctioning. How long he would be awake for. What he doesn’t like. What calms him down. I started seeing progress!! He was tolerating the change in his vent settings fairly well. Then last week – the rumor coming around was that they were going to try to extubate Luke! That’s what we wanted. What we prayed for. To give him a chance! He extubated himself last week – but he wasn’t ready just yet.
On Sunday June 3 2012 @ 1pm – LUKE WAS EXTUBATED. After +/- 105 days on the ventilator he was extubated! He skipped the normal path of SiPAP/CPAP and I was really glad they went that route because Luke pulls on anything around him. There would have been so much trouble keeping a proper seal. He’s still on High Flow Nasal Cannula @ 6 Liters. Currently he requires 35-45% oxygen and tolerates when the nose prongs are misplaced every now and then.
Today would be day 5 of extubation and so far – I believe he’s doing great!! He seems to chase his breaths as the days go by. It’s so much easier to take him in and out of his isolette to hold him when he’s fussy. Luke sure does enjoy the freedom of Tube Free! He can twist his head and move all he wants
Luke currently weighs 5lbs 2oz
Thank you all for your continued prayers and positive thoughts! We’re not out of the woods yet – but tomorrow looks so much brighter!!