Prayer Warriors!

Job got to meet one of his most faithful prayer warriors today.

I suppose introducing Job to Titus was especially sweet, not just because of Titus' enthusiasm, but because it was yet another reminder of how faithfully our family has been prayed for these past months. There are so many people (some that we don't even know!) who remember us in prayer daily and we are so very grateful!

Emesis

This little guy sure loves his food tastings and his Daddy! He has such a joyful attitude, even when he doesn't feel well, like this evening.

Wasn't I just writing about the fragility of life? The mountains and valleys of life with a CHD? Job's health feels so tenuous. It seems as if for every forward step he takes, there is at least one or two backward steps. His sats have been holding steady at 80-81. He even hit 82 this morning and there was talk of trying to go down to a half liter of oxygen.



But... He has vomited eight times in the last 44 hours. And we're trying not to get too worried. Yet.

As always, he has a whole team of doctors watching him closely. We're all on high alert but there's no apparent reason for these "emesis episodes" (as I have to chart them in the tablet, which makes me laugh).

My mind immediately jumps to scary things like heart failure because poor gut profusion is one of the red flags for heart issues (the gut can do without blood flow in crisis better than, say, the brain). I KNOW that's an overreaction at present but it doesn't FEEL like one.

I always struggle with conclusions for these updates. Job's health has never rested in our hands and that hasn't changed these last couple of days.

NICU Follow Up (6 months)

Job had a his big 6 month developmental assessment yesterday (10/24).

As we were waiting for one of the several providers to come in to see us, I snapped this photo of him playing with his feet. We've been working on developing this skill for the last week and a half with several exercises from Job's wonderful physical therapist, but this was the first time I'd ever seen Job do it on his own!!



Job is quite behind on his physical developmental milestones and gross motor skills, scoring around 3 months of age (though he's 6 months old). Perhaps especially because of this, the team of therapists yesterday was quite surprised and pleased with his social and emotional responsiveness scores, which were much more on target for his age.

Job's sats aren't really improving and we're starting to get nervous about what this could mean. It's probably not helpful to even think about right now because he is still allowed more time to get them up, but it's hard to fight the temptation to anxiously worry about his sats and all of the potenial reasons he's satting this low compared to where we want him to be (and where he needs to be to get off oxygen).

If it weren't for his inadequate sats we'd probably feel a much greater sense of relief to be post-Glenn and able to switch our focus more fully to therapy. Right now it feels like we're in an awkward waiting phase.

Honestly, in some respects I don't know if we ever will be out of a waiting stage. Isn't that what life on earth is? But with his diagnosis, Job's life will always be particularly fragile and we will likely have many complications and scares. Sometimes I forget that, especially as he is improving and, it seems, entering a more stable stage of life. I suppose we will eventually find a balance!

One Week at Home!!

Job has been home from the hospital for one whole week!

The week has flown by as it's been a busy week of appointments for Job! I kept telling myself that, once we got through Thursday, things would slow down. But Monday it starts up again! Physical therapy, pediatrician well child, blood draw, early childhood intervention therapy and cardiology appointments... It takes lots and lots of people checking on Job to keep him healthy!

We were doing a very slow narcotic wean but, perhaps since he was also teething, we realized it wasn't slow enough. Taking a few days off from the wean was so nice! But we started back up yesterday and have about a week left.



Job's sats just aren't high enough. Still. Even on 1lpm of oxygen. He had a long cardiology appointment today, here in Tacoma, and everything that they can see by echo looks good. The thought continues to be that his low sats are pulmonary embolism or pulmonary lung bed related and will, hopefully, resolve with more time.

We have an appointment in Seattle on November 1st and, if his sats aren't improved by then, talks about a cardiac cath will begin.

Therapy and our subsequent practice sessions exhaust Job, but we'll keep working on his endurance! It's so exciting to watch him learn new skills. It's very hopeful to see progress day by day and week by week. I'm learning so much about how to help his little body learn to move!

He's doing a great job tracking our voices or toys and reaching out (even across his body!) for objects and he has great head and neck control. He loves sitting up on our laps, watching the world around him. As of this week he has been sitting in a bumbo (pictured) and his high chair, but working his core like that is particularly exhausting! He can roll to his side but until his sternal precautions are lifted next week we can't work on tummy time or putting any weight on his chest and arms. I'm excited for him to eventually learn to roll over! That might be his next milestone.

We reduced the fortification of Job's milk in the hospital, but even with fewer calories per bottle Job is gaining about 9 grams a day. Yay! We want to see that number a bit higher (15 grams!) as weight gain will help strengthen his body and lungs in particular (which ought to help his sats).

We're trying to relearn living together as a family and trying to catch up on the last five weeks of mostly-incomplete school work. It's a big adjustment! I think we're also trying to recover from the emotional exhaustion of what proved to be a rather traumatic hospital stay. And we're trying to avoid any and all cold and flu germs!!

We are all so happy to be together again. There has been an awful lot of baby snuggling this week.

Thankful

Thankful for Tylenol, to break through difficult opiate weans.

Thankful for big brothers, who share their snakes.

Thankful for happy smiles, the persistence of joy through pain.

HOME

It is so good to have Frightful home. So so good.

Leaving the hospital was a catalyst, I suppose, to think about everything that happened while we were there. Including how very close we were to losing Job. I guess now that he's stable and home I've been thinking (and dreaming) about how critical he was. We are so grateful Job is alive! But it's going to take a while to recover from this hospitalization.

Job has moments of joy and contentment, particularly when he's sitting up and watching his brothers play or entertain him. But it's been a pretty difficult last couple of days. He's miserable withdrawing from his dilaudid and clonidine. We think he's teething too. He has 10 more days of this wean as scheduled, but I may ask to prolong it, depending on how today and tomorrow go.



It's also strange to get used to his oxygen tanks and concentrator. We had to go to the pediatrician and grocery store yesterday and it was hard to remember we were connected to the tank! Ezra and Isaac did a good job of reminding me though.

Actually, Ezra and Isaac have been amazing helpers!! Isaac can get the biggest smile out of his little brother. And Ezra has made it possible for me to draw up meds or go to the bathroom or make food or just have a few minutes break because he can so competently care for his brother and soothe him. How did I ever take care of a baby before without little assistants?? They love their baby brother so fiercely.

HOMECOMING

Guess what my favorite word is? (Hint: it starts with "D" and is 9 letters long.)



We made it!!