Ballerinas

Elsa has been LOVING her little ballet class, taught by a friend in her home to 3 to 5 little girls, ages 3 and 4.  Elsa also loves teaching Nora what she's been learning.  Nora's great skill at being a copy-cating little sister makes her a perfect student: 

 

Note the little ballerina dolly who also got to participate:

 

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.

We love it when Daddy comes home

The funniest part to me is that Barnaby refused to move after the tickle-war began!

Bunny roasts a leaf

When we've gone outside lately Elsa and Nora have been calling each other "Bunny" and "Kitty," respectively.  "Kitty" lives on the mound under our Doug fir tree, and "Bunny" has made a home for herself ouut of fallen branches and old mimosa pods under the the Blue spuce.  She showed me the other day how to properly roast a leaf: 

 

 

New clothes for the playground

I finally went through the 9-12 month clothes I had gathered for Oliver and sorted out all the outfits that would still work.  Previously I had prepared for a feeding tube (so no onesies, zip-up jammies, etc. - his tummy needed to be easily accessible), but not a trach.  No more t-shirts now either!  Jammies and shirts have to be all completely snap up.  Pants work OK, but snap up is a bit easier because of the oximeter probe on his foot.  I kept this one outfit because I just really liked it, and the collar was big enough to be clear of the trach  and for me to get it on him by pulling it over his legs.  He looks so dressed up compared to wearing jammies all the time!

We also got him into his swing for the first time since we've been home.  He woke up for a bit when we put him in and he got really interested feeling his toys in front of him.  He's big enough now that his little arms can reach the tray.  I think the more upright positioning will be good for him and the support of the swing will help his hands find the toys on the tray.  I'm really excited about having a new way to let him play!

Test results

We heard the results from the big genetics test finally today.  They looked at over 200 genes, all the ones that we know deal with metabolics (about 75 of those deal specifically with mitochondrial function). We sent off for the test back in October; it has been a long wait.

The results did not show any abnormalities.  Aside from a few, very minor "spelling" errors (which would be expected in anyone's genetic sequence and which would not cause any trouble near the degree of the severity of Oliver's case), Oliver's gene sequence looked normal. 

This was a hard blow for me today.  I didn't realize just how much I was hoping for a diagnosis.  Not because of any information it might give us but mostly because I wanted a name.  I wanted to name the enemy.  I wanted to name it and identify it and distinguish it from my son.  I wanted a name to pray against, to sink my growling teeth into.

I haven't gotten to speak to the geneticist or the metabolics doctor yet.  Hopefully I'll hear from them in the next few days and get to unload my many questions about what it means and where we head next. 

This is at least our eighth genetics test since Oliver was born.  A mitochondrial disease may still be the best natural explaination for Oliver's condition, but maybe his specific kind has just not been identified yet.  I'll post an update after I hear from the doctors. 

Thank you, as always, for your continued prayers and support.  The little notes, unexpected gifts, and blessings of service to our family is so nourishing to our souls, thank you, thank you.

He came back again

I had to resuscitate Oliver again yesterday morning.  He was back to "normal" again immediately after the incident, but it wiped me out for the rest of the day.  I took a long hard nap in the afternoon!

The trouble happened while were changing the ties that hold his trach tube in place.  We change the ties and wash his neck daily and we always take precautions to prevent the tube from coming out while the ties are off, but this time it slipped out and he did not recover easily.  The details are below for those interested:

I had already removed the old ties, cleaned his neck, put new ties and foam on, and was trying to tighten the velcro tabs around his neck when the nurse said his color wasn't good.  I laid his head back down saw that his face was indeed turning dusky purple.  We soon realized that his tracheostomy tube had come out; we didn't notice it previously because by that point I had put the new lyofoam piece around the trach tube so we couldn't see the trach tube underneath it.  Our nurse was holding the trach tube in place, but Oliver was being especially squirmy in spite of being swaddled.  The ventilator alarm did not go off, probably because the tube was being pressed against his neck still as the nurse thought she was still holding it in place, so there was enough resistance in the tube that the ventilator machine still acted as though it was attached to a patient.

Thankfully I was able to immediately put the trach tube back in easily on the first try (Oliver's tube is flexible so usually it requires another tool to put it in easily) and we quickly started "bagging" him (using a football-shaped balloon-looking device that lets us give Oliver manual breaths through his trach.- the "PR," or pulmonary resuscitation, part of "CPR").  His color worsened, turning to a mottled blue, and his vitals (heart rate and oxygen saturation) kept dropping on the monitor.  I waited for him to revive for as long as I felt comfortable and then had the nurse call 911.  While she talked to the dispatcher I did two brief sets of chest compressions because by now the oximeter probe had lost his pulse so monitor was just blinking.  I kept praying, "Please, Lord, not while Joel's away, not now, not yet..."  Shortly after the second set of chest compressions he suddenly turned pink and started squirming again. 

We welcomed the paramedics a few moments later.  Even though Oliver was back to normal again by the time they arrived, I was still thankful for them assess him and check to make sure I had not damaged his sternum or other parts of his chest when I did the compressions.  They did not detect any obvious damage, and I was reassured later in the day when I spoke to our pediatrician that it is very unlikely that I caused any damage because he is still so young and his bones are still soft and somewhat pliable. 

I am so thankful that we had a friend helping us with the girls that morning.  As soon as Oliver was stable I went into the other room explained what happened, and then let them come into the living room to watch the paramedics arrive and check Oliver.  Nora hung back at a distance with our friend, but Elsa found the whole situation very interesting and I had to ask her just watch quietly because she wanted to keep talking to the paramedics!

Joel has been out of town for work this week, so I am especially thankful that Oliver pulled through ok again.  Thank you, again and as always, for your on-going prayers, support, and encouragement.