Baby teeth and baby food

Oliver has a tooth!  We have been thinking that much of his agitation, drooling, and grimacing have been related to teething, and it was pretty exciting to feel his sharp little bottom tooth in there earlier this week!

Also, we've started giving him baby food and he's been doing well with it so far - the hardest trick is getting it through his feeling pump without clogging (I think I'll devote a whole post just for that!).  So far he's had chicken stock, brown rice, bananas, avocado, sweet potatoes (but they made him gassy and VERY stinky!), butternut squash, quinoa, and beet greens. 

Here are the other high and low points of the last two weeks:

Last week we increased the breath rate on Oliver's ventilator, anticipating that it would help keep his oxygen levels up and that we would be able to decrease his oxygen support.  In spite of Oliver kept having trouble with spontaneous desaturation events, sometimes related to aspirating his saliva or plug-like chest secretions, but other time it just seemed totally random and he would start turning blue quickly.  We were having to "bag" him manually up to 2 or 3 times a day.  He would bounce back pretty quickly each time, but it was still mentally and emotionally exhausting to resuscitate him multiple times a day.

This week he seemed to stabilize, and we were able to turn down his oxygen support!  He now only needs between 1.5 and 2 "liters of oxygen per minute" added to his ventilator breaths to maintain his blood oxygen saturation at or near 100%. 

He also has been waking up much more and has been more alert this week compared to all the time we've been home.  We've had a few really nice times with him awake.  We still don't expect that he can see us and we don't know the extent of his understanding, but he seemed to be much more responsive and interactive, especially with his hands and legs.

Yesterday we had some excitement when our nurse accidentally gave him his 10am medications AGAIN at 2pm, instead of his regular 2pm meds.  After several urgent calls to doctors we were assured that most likely everything would be fine.  Two of the medications were for his hypertension, so we monitored his blood pressure carefully to make sure it didn't drop too low.  Thankfully he was OK, just a bit more sleepy again perhaps. 

We've also started giving him real baths again in the baby tub now that he's more stable (instead of just sponge baths in his bed).  We still washed his beautiful hair while he was in bed and we had a bit of fun last time:

He slept right through it so he didn't even know to complain about embarrassing photos!

I still haven't heard directly from the metabolics and genetics docs about what we'll do next to try to understand Oliver's condition.  After bugging them myself for two weeks, I finally asked our (wonderful) pediatrician to call them, so hopefully we'll hear from them one way or another soon.

It was such a blessing to see Oliver so much more alert this week.  God has used him to make me so much more patient with my girls and so grateful for my children.  I deeply long to hear Oliver crying in the middle of the night, or fussing to be held as soon as I start to make dinner.  That pain has been working on my callused heart like a pumice stone.  I now get much less impatient when life interrupts my plans; I actually enjoy expressing grace and patience to my girls at times when I naturally would be very annoyed, short tempered, irritable and selfish.  God's miracles can be unexpected and mysterious.

Thank you, as always, for your continued prayers, encouragement, and support.