Easter weekend

Happy Easter everyone!

It was a great weekend around the Brearey house, but still with it's share of ups and downs.  Elyse had a pretty impressive first night at the Civic on Friday.  She was transitioned into an open cot, and also had her feeding tube removed.  While it was exciting to see her without the tube, we were actually a little surprised by this, as she had not been reliably bottling for 24-hours yet.

all cozy in her big girl bed

It seemed like there may have been a lack of communication about her feeding strategy when she was transferred, since the plan from the General had been to alternate bottle and gavage feeds unless she was awake and alert, in which case the bottle would be offered first.  It felt like the bottling was being pushed very quickly, and as a result she was having quite a few heart decelerations and oxygen desats during the feedings, and an apnea spell during her bottle on Saturday morning -- her first big spell in three weeks.  It was quite frustrating to see her struggle with the bottles, and felt like we were taking a big step back.  We talked to the nurse later that evening, and decided to put the feeding tube back in so that she could have a rest from bottling if she needed it.  After all, she had just been through a number of big changes and even just the transfer alone can take a lot out of them.

an Easter visit from big brother Emmett

She seemed to have a better night, alternating feeds by bottle and NG tube.  Unfortunately, my morning visit didn't go so well.  Once again her bottle feed was disorganized and felt like a struggle, with several decels and monitor alarms.  And to make matters worse, she ended up vomiting most of it back up all over me (note to self -- remember to burp her a little longer next time).  Not a great way to start the day.  We also found out that her hemoglobin was on the low side, which may account for some of the decels and shortness of breath.  But fortunately her reticulocyte count was high, meaning she is making her own red blood cells.  That, combined with her iron supplement, should help improve her energy levels without needing another blood transfusion.

wrapped up in her new blanket

I sometimes struggle to find the right balance between advocating for our child, and trusting the professionals who do this every day.  We returned in the afternoon and talked to the nurse about our concerns (again), and she patiently talked to us about the strategy behind encouraging more bottling (again).  She really believed that Elyse was strong enough to do it, and just needed more experience and practice.  This time, however, she also showed us how to utilize a strategy called "pacing" during her bottle feeds.  It involves helping her regulate her drinking by using her cues to control the flow of milk -- reclining her slightly with steady milk flow when she is actively sucking, and sitting her up with limited (or no) flow when she stops, giving her a chance to catch her breath.

she gets to wear sleepers now - yay!

The pacing worked beautifully, and finishing that feed after being shown how to do it properly gave me a lot of confidence.  I was also able to return for an evening feed, and it was seamless.  The nurse turned all the monitors off except for her oxygen saturation, which was a great compromise.  It gave me the reassurance that she was stable throughout the feed, without obsessing over what her heart rate was doing.  I was able to just concentrate on Elyse and her cues, and before I knew it the whole bottle was gone and we were both happy.

all swaddled in Mommy's arms

Now that she is starting to bottle feed more reliably, they have started talking about her discharge date.  Unfortunately, since she had that spell on Saturday, she needs to stay at least 5-7 days spell-free.  But perhaps that is a blessing in disguise, giving us a few extra days to prepare for her to rock our world again -- only this time it will be for the best possible reason :)