He looks good in brown

We love Daddy's Bible stories,

especially when they involve the entire collection of animals, dollies, and toy food to play it out!

 

sister lovin'

I love it that his expression seems to say "Mom, do you have to let them do this to me?"

And this is a picture of Oliver blowing bubbles, one of his favorite activities.

Ups and Downs

I wrote two weeks ago how Oliver has been more alert and responsive.  My cautious, skeptic personality keeps me from getting too excited about each little up and down, but last week he continued to do so well and it has been fun to play with him.  His strength, alertness and wakefulness last week impressed and surprised his nurses, physical therapist, cognitive teacher, Cacoon (care coordinator) nurse, and pediatrician, all of whom had visits with us that week. 



We were noticing that he was doing better controlling his head so we've even been sitting him upright!  His balance and head control is far from perfect, but he's doing so much better than even before he was admitted in Portland, which is not what we were led to expect!  It is a little hard to see in the pictures but I support his hips between my knees and hold his elbows and he does the rest!

  

He could even push himself up on his legs when I supported him like this: 

After all that hard work then he got to just chill with daddy, but he kept on kicking!

Unfortunately over the last week or so we've two big areas of trouble with him that has made it difficult to continue playing with him like this. 

First, we discovered that he was developing a really bad yeast infection/rash around the back of his neck.  It is so difficult to keep his neck dry and clean because of the trach ties around his neck (even though we change those daily) and his continuous drooling (despite our best efforts to keep his chin surrounded by bibs).  With his clothes on the back of his neck was always dark, warm, and wet. So, now we are treating the rash, leaving him shirt-less to keep his back aired out, and positioning him always on his side so his drool will be less likely to drip into his neck folds.  Thankfully his back is starting to clear up, but it has spread to his shoulders so we keep chasing it with medicated ointments and Aquaphor. 

Also, he has had the worst teething experience I could imagine.  He now has four teeth, and, starting a week ago, has been biting his tongue regularly.  Not just nipping his tongue, but all out chomping on it, terribly.  When Oliver gets mad, or is in pain, or has a seizure, or is unhappy for any reason he clamps down his jaws super hard.  This wasn't a big deal until he got teeth, an now he has two top and two bottom teeth, so his mouth has been extremely angry and dangerous.  The damage and discomfort snowballed as he would bite his tongue, his tongue would swell, we would try keep teething rings and pacifiers in his mouth to protect his tongue, then he would get really mad about that and clamp down his jaws even more, plus I think he has even more teeth about to pop out any day.  We stopped trying to use the teething rings when we realized that his clamping was causing pressure damage to his gums - the tissue on the ridges of his gums as well as the bites to his tongue are white with damaged tissue. 

Between the horrible teething problems and the irritation of his neck rash Oliver was barely sleeping a few hours a day comfortably - he's been constantly aggitated and squirmy.  After talking extensively with the doctor and nurses we all agreed that the best thing to do would be to just get him to sleep for a few days!  He's now on regular doses of Benedryl and Tylenol, and we've also slightly increased his seizure med in case the clamping down is related in any way to mild seizure activity.  Thankfully he has been peacefully sleeping for the last 24 hours or so, and we plan to keep him sleeping comfortably for another day or so to just let his body rest and heal. 

This last week has reminded me why I never wanted to become a nurse or doctor.  I can handle the ideas and science, but damaged tissues and pain/disease related bodily fluids are just too difficult for me!  The damage in Oliver's poor little mouth was just too much for me to bear - I could hardly make myself take the photos the nurse requested so she could determine if it was thrush or pressure damage.  So when I say I am thankful Oliver is sleeping now, mean that I am especially VERY thankful in this situation.  Seizures and other episodes are terrible, but seeing him suffer this week has been especially heartbreaking to me. 

I am so much looking forward for the rash and his mouth to heal so we can play with him again as I described at the beginning of the post.  My mom has been here for the last week and has been a great help, but I wish she could see Oliver more when he is happy and stong and alert.  On a very positive note, we have not needed to "bag" Oliver to recussitate him in over a week now!  Also, he has been regularly maintaining 100% oxygen saturation with only 1 liter per minute of oxygen support, which is the lowest he has been at since we've been home.  Yea!  Finally, Oliver has a birthday on Monday!  One year old already! 

Honey Bear

The fact that Nora's mess looked artistic enough to photograph didn't make it any less of a job to clean it (and her) up, but it did help me smile through the process.  She was smiling too, but in her case it was beccause she had a mouth full of honey. 

 

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.