Exciting news!

It's been a few days since I've been able to update the blog and a lot has happened in the last 24 hours.  I didn't have much in the way of interesting news to report on Tuesday (I filed Cayden's nails for the first time) or Wednesday (I got projectile vomited on) but then all of a sudden Thursday and Friday turned into whirlwind roller coaster days.

On Tuesday, Nurse Shawna mentioned that we needed to watch the CPR training video sometime soon.  It's on the checklist of things that need to be completed before a baby goes home, and she thought that we should do it soon because Cayden had been progressing well.  It was the first inkling I got that we may be starting to get close to actually bringing him home.

Since Wednesday, there has been some experimentation with his feedings.  The Simply Thick seemed to be clogging the tubing on the gavage pump, so they decided to try one feeding without the thickener to see if maybe Cayden had progressed to the point of not needing it.  It went in and he seemed to be tolerating it well until about an hour later - that's when he woke from a dead sleep and spewed milk all over me.  So much for being able to get by without the Simply Thick.  The new plan was to change out his NG tube because they thought maybe the connections were causing the clogging, so that was done on Wednesday evening.

The developmental and speech therapists also did two more nippling evaluations to see if the size of the nipple on his bottle feeds could be changed.  He had been using a level 2 nipple, but because the milk is so thick, he really has to suck and work hard to get it out.  The thought was that if they changed to a level 3 nipple with a slightly larger opening, he wouldn't have to struggle as much.  The first time they tried the level 3 was Wednesday, right after he had a therapy session.  He was pretty tired and not able to handle the increased flow, so he choked.  They thought maybe they'd give it another shot the next day when he was awake and alert and not so tired.  The second time, on Thursday, he did just fine so they came up with a plan to use the level 2 nipple after breast feeding or therapy sessions and use the level 3 all other times.

Also on Thursday, Cayden set a personal record for breast feeding:  he took 46 ccs in a marathon, 40-minute session!  I was feeling pretty positive after that but it got better:  they told me the docs wanted to do a room air challenge test on him.  I was surprised because I thought that was something they did just before sending him home, and there hadn't been any mention of it or any other discussion about him possibly being ready to go home, outside of being told we needed to watch the CPR video at some point. 

The most exciting news of the week is that he passed the room air challenge!  That meant the only other hurdle in his way was being able to nipple all of his feeds, but he had been gaining huge ground in that area as well.  In fact, in the previous 24 hours, he had taken 93% of his feeds by nipple!  So when I left the hospital on Thursday afternoon, I was pretty excited!

When I called to check on him Thursday night, Nurse Megan told me I should really think about rooming in with Cayden at the hospital one night over the coming weekend because it was looking like he could be coming home very soon.  Rooming in is another thing that's supposed to happen right before a baby goes home.  They move the baby's crib into a private room with the oxygen, monitors, and a bed for the parent(s) and give the parent(s) a chance to handle caring for the baby all on their own for 24 hours, but with the nurses constantly monitoring things and available if needed.  So when I went to bed Thursday night, I was really excited!

Jason and I both went to see him on Friday afternoon.  Nurse Shawna was gung-ho about him being very close to going home.  One other hurdle that came to mind for me to ask about was the hernia repair issue.  She said that they had evaluated him and decided that the repair should be done later, when he's about 10 weeks past his due date, so there wouldn't be any imminent surgery to delay his discharge.  With that in mind, she said I needed to get on the ball with learning to prepare his formula, practicing bottle feeding, and rooming in with him.  She made a reservation for me to room-in this coming Sunday night.

After this encouraging conversation, I sat down to breast feed him.  He had just had a therapy session.  He did o.k. for about 15 minutes but then seemed to get tired.  Nurse Shawna wanted me to bottle feed him the rest of his amount so I could get some practice with the bottle as well.  She handed me a prepared bottle and coached me through getting him started sucking.  Within 20 seconds, he started choking.  I sat him up, leaned him forward, and patted his back, but it didn't seem to help.  He started desatting, then his heart rate dropped.  I kept patting, but he was really choking.  The monitor made that sickening sound where it spirals down in tone as his heart rate drops lower and lower.  It got down lower than it has in months and took him a good five minutes to recover. 

Once he was stable and I was able to compose myself, I asked what nipple she put on the bottle because it seemed like he got flooded right away.  Sure enough, it was the larger-holed level 3.  Apparently she didn't get the memo about not using the level 3 after breast feeding or therapy sessions.  The fact that he had such a significant brady episode will keep him from being able to go home for at least five days.  (He has to go five days without any episodes as part of his discharge criteria.)

After he finished his feeding, Jason held him and we watched the CPR video.  I couldn't stop thinking about my NICU-mom friend, Jessica, and how she had to perform CPR on her little Bianca so soon after they discharged her.  I hope and pray we never have to go there. 

When I called to check on him again this evening, the night nurse said he had been fussing earlier in the evening so they put him in a swing to see if that would help soothe him.  It did seem to help, but then he had another significant brady episode while in it.  It could be that his head wasn't supported well enough and that his neck dropped down a bit, blocking his airway just enough to cause him to desat and brady.  Whatever the cause, it's not good that it happened - again.  Twice in one day.  Despite all of this, they are going to try taking out his NG tube again tomorrow to see if he can sustain himself without it. 

Talk about a roller coaster!  I am so exhausted trying to keep up with the events of the past couple of days.  But hopefully things will get sorted out and back on track and we really will get to bring him home very soon!

And speaking of roller coasters...his weight has been up and down:

Tuesday night, he was down 23 grams from the previous night.
Wednesday night, he gained back 24 grams.
Thursday night, he had a big gain to put him at 7 lbs. 0.7 oz.
Friday night, he dropped back down to land him at 6 lbs. 15.5 oz, which is less than he was to start the week on Monday.