NICU Follow Up: "8" month appointment

We're hanging out in the neonatal follow up clinic today. It's through Mary Bridge as Job was in their NICU for 36 hours before he transferred.

It's been a good thing to see them every 4-6 months instead of Seattle Children's because they are so unaware of his cardiac issues that they are really just looking at his gross and fine motor development. Of course we give them updates on his cardiac stuff, but I realized today that there is a benefit of being in a separate system for this reason.

I am so deeply thankful for the various services Job receives. Today's OT consultation was phenomenally helpful! I guess I think of Job as my little research project sometimes and these consultations as my oral history interviews and find some measure of research satisfaction in studying his cardiac condition as well as all of this new-to-me childhood development information.

OT gave some great suggestions about ways to increase Job's intentional toy manipulation, about table foods that would be appropriate for him to begin, and dancing/large muscle movement ideas to begin to incorporate. Even though childhood development was never one of my interests, I am really enjoying learning more about the science behind this discipline. Certainly seeing the necessity and the effectiveness of it play out right in front of my eyes increases my appreciation of it. I want everyone to be in therapy! It's becoming my soapbox to other CHD parents because it has completely changed Job's life in such positive ways.

Job is certainly still working with a significant development delays, but he IS making progress. I have to remind myself that it's good for me to see his progress through his therapist's eyes sometimes, because I do get discouraged (like last night, filling out the surgery for today's appointment, being reminded how Job can't do many ~8 month old skills). It's slow progress, but it's definite and appropriate. It's progress.

Everywhere we go people stop us to smile at Job and talk about/with him. His sweet, cheerful spirit just shines through and people take notice. Why a little baby is on oxygen is also *quite* the conversational topic.

While we were waiting for our valet parking today I had a pretty lengthy conversation with 8-10 year old boy about how crazy it is a for someone to live with half of a heart. Again, it's good for me to have these conversations over and over and over again, lest I forget the wonder of Job surviving on such a compromised physiology.

Early March Update

This cutie is experiencing a lot more discomfort than was obvious originally. Actually, right after I posted triumphantly that he was off Tylenol I had to give him another dose. We are pushing him to go longer and longer without it, but he definitely still needs it.

It's nothing particularly concerning: of course he's sore! They sliced through a muscle he uses constantly! But it is sad. Sometimes I forget how sad because despite his pain, Job still smiles. And smiles brightly.

We are still really, really excited that Job is home already, but the exhaustion is setting in. All of the real life stuff that we paused for a few days is tumbling back in.

Last night after switching out Job's cannula for a new one, giving him all his meds, plus doing the regular baby stuff like a diaper change and food, I just collapsed into bed (and left Seth to put the big boys to bed by himself). Job is so much work, all of the time.

One thing that is extra exciting is that Job is off of his anticoagulant, Lovenox!!! He was on it last summer and then got switched to aspirin but after his multiple clots in September (including his atrial clot!!), we went to a very high dose of Lovenox. Giving him an injection twice a day has probably been our least favorite aspect of his care, so to be done with it is so wonderful. Perhaps even more (emotionally) painful than giving the shots was seeing his thighs and arms covered in dime shaped bruises. I will be so glad when they all fade! Job is now on a half-tablet of baby aspirin (which he'll be on for the rest of his life, though the dose will increase with his size).

The surgeons and anesthesiologist were determined not to place a central line for his surgery on Tuesday (as every clot as been line provoked) and they were successful! That did mean some extra work and extra pokes in the ICU to monitor Job in recovery without those lines, so I'm very grateful everyone was on board and willing to put up with a mere PIV.

Hematology is proceeding with a full work up, however, to determine why Job is hypercoaguable. I'm very curious! We have seemingly ruled out most genetic causes but will wait for the final results in coming weeks.

We're still keeping him pretty secluded for fear of germs and because he's pretty touched out. As we were writing about last week, he's going through a big developmental stage change and doesn't want people too close to him. I think today will be a come late and leave early kind of day at church. He is warming up to his brothers again and now that we're being more aware of what he needs, he is much happier.

We took the boys out on a fun excursion to the Naval Museum and to the Bug/Reptile Museum in Bremerton to pet snakes (!!?!!) yesterday. They can't stay cooped up as much as Job needs them to be. They had a blast! And they really have done so well adjusting their desires for what's best for Job. I wish it didn't need to be such an either/or choice, but such is life.

Job is also eating sooo much! I need to hurry up and make another big batch of sweet potatoes+carrots puree for him as that's his favorite meal 3-4x a day! As disappointing it is that we need to do so, thickening his bottles has really helped as well. He must be going through a growing spurt with how much he's eating but we have yet to see a big weight gain.

Sometimes it helps me to write out these big long posts so that I can see that not everything is dreary. We have much to be thankful for. It's hard to acknowledge that sometimes, as it's easier to focus on all the hard things, to wallow in our exhaustion and pain and fear. It definitely is a discipline to give thanks amidst hardship and It's one I need to exercise more often. It's just honest. Things are hard but God is good. That's not a trite Pollyanna-ism. It's true. And it's hopeful. Sustaining.

"There is strength within the sorrow.
There is beauty in our tears.
You meet us in our mourning,
With a love that casts out fear.
You are working in our waiting.
You are sanctifying us.
When beyong our understanding,
You're teaching us to trust."

https://youtu.be/B66DHRY1ITs

Surgery Week

March 6th

Drink up, Job! Only 9 hours to go before Job loses his eating/drinking privileges in preparation for surgery. Being NPO is always really hard, so we would appreciate specific prayers for Job's patience and stamina in the morning.



We came up to Seattle tonight to alleviate some driving-while-NPO time for Job as being stuck in the carseat while hungry is particularly difficult. But he'll have both Mommy's and Daddy's attention to distract him allll morning.

Iiiifffffff he doesn't start showing cold symptoms tonight or tomorrow morning. We had an exposure to a cold a few days ago and it seemed as if Job was coming down with something this morning - but was that just my paranoia?

All of today we called and emailed with Job's nurse and doctor and NP about whether or not to cancel and decided to keep him on the schedule as he had yet to show any symptoms. We'll cancel if we need to but aren't expecting to do so currently.

March 7th
Here's the mark for Job's incision! We're about head to the PACU!


Job is out of surgery. He's tired and hungry but doing well. His cardiologist says that as long as everything continues going well, he'll go home tomorrow! How strange for a kid who has made a habit of spending weeks in the hospital.

Thank you all for prayers. We praise our faithful God for all things as we continue to pray for Job's health and development.

These two were pretty glad to hear surgery went well! This was the photo Dad took in response to the photo we sent them of Job recovering. They're having a grand old time with Grandma and Grandpa!


March 8th
Hanging out in the hospital: https://youtu.be/1wrP4kVLj4g

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Job's welcome home committee:

March 10th

Guys, he's so happy!

We haven't had to use any Tylenol today and he's more active and more cheerful each day post-op.

He's even satting a bit higher! That's probably just because of the increased blood volume due to the fistula and not because his AVMs are dying off. But I'll take a number in the 80s any day.

WE'RE HOME!

I feel as if I'm in some fantastical dream and keep expecting to wake up and find out that, no, we're still in the hospital.

But we're not. Job's home. Happy. Eating so! much. Taking a bath. Playing with his brothers.

This feels like the very first time in his life that Job has "cooperated" and met expectations (or actually even exceeded them). I keep asking Seth if I'm forgetting about some other event in his life where he responded typically (or not catastrophically?), but we can't think of anything.



We found out that this was actually only the second auxiliary fistula done at Seattle Children's. We knew it was rare, but maybe not that rare! It's just that if kids develop pulmonary AVMs ("bad veins"), they usually do so two or three years after their Glenn (OHS #3) and are thus old enough to get the Fontan (OHS #3).

It was both amusing and frustrating to be in the ICU and field so many questions about why Job needed this surgery! The fellows and even some of the ICU attendings weren't familiar with this procedure and were very cautious both because of their unfamiliarity and because of Job's history, wanting to keep us in the hospital for another day or two.

But Job's surgeon and his team of cardiologists most familiar with him were thrilled with his post-op recovery and convinced everyone to let us go home. We feel very comfortable, now, assessing Job and are, unfortunately, quite familiar with his distress signs. Plus we have so many numbers to call if we are concerned, with such immediate responses, that it sometimes feels as if we essentially have a cardiologist living with us.

Fistula Coming Up!

Happy piano playing boy!

We are still on the schedule for Job's auxillary fistula on Tuesday, March 7th, at 12:15 (10:45 check in). It is so weird to go through the process of going to a scheduled, outpatient surgery! We've always been inpatient for previous surgeries, which is much different. We have pre-surgery appointments and phone calls and meds to give - all things that were just taken care of for us while inpatient.

I vaguely referenced a potentially happy development last week and meant to explain it further. It no longer applies, but to gloss over it rankles at my perfectionist record keeping tendencies and I know that, if I don't explain it, I'll be frustrated when, someday, I go back and reread these entries. So this is purely for me and totally unnecessary to read:

Last week's echo confirmed a reason that Job's sats haven't declined as sharply as we were all expecting (because of his pulmonary AVMs): aortopulmonary collateral arteries. These APCAs are small arteries that develop to take blood to the lungs to be reoxygenated.

We first learned about collateral arteries when Job's right leg clotted off back in May (because of his first cath). At the time we marveled that the body could form "side street" routes when the "freeway" artery was blocked off - but we had no idea we would be revisiting this concept again, but this time in his heart!

Job is certainly still very oxygen-dependent, but his sats have crept up rather than dropped dramatically, despite his AVMs. We all got a little excited last week when the possibility that maybe, just maybe, his body could cooperate just enough to at least postpone his auxilary. The idea was that these new collateral arteries could essentially create a natural fistula taking the liver-filtered blood from the IVC (connected to the aorta) though the collaterals to the lungs for both oxygenation and AVM killing.

We then scheduled an extra appointment on March 3rd to check whether or not these ACPAs were significant enough to postpone surgery or even cancel it altogether.

We talked about it leading up to Friday's appointment and then I talked to Dr. Files about it quite a bit at our appointment. We could postpone and maybe his body would surprise us! Though the risks of this fistula are minimal, comparatively, there are certainly risks.

Ultimately, I decided I want to go through with it. Being on oxygen once Job gets mobile but before he has the understanding/obedience to leave his cannula alone sounds awful. Like maybe even the straw that could break the proverbial camel's back of this delicate balancing act. This seems like it could work and I want to try it. Now. Job's not sick, we have a plan for childcare, our emotions are all keyed up. Especially because we would likely have to do this fistula anyway, just later on.

A Spokane Hotel Room

Wednesday and Thursday we took a quick little unexpected trip to go cheer on the Crusaders boys basketball team and meet up with Jim and Yvonne.

We had such a good time together, driving (and alternating song selections to sing along to), playing Isaac's favorite board game in our (heavily sanitized) hotel room, and playing in several parks. It was really sweet to spend some time together before next week.

Here comes the month of March!

Isaac is so proud of this photo he took! (It also shows off Job's trunk rotation!)

As this week has progressed, we have been reassured that Job's clingy, fussiness is at least mostly due to his developmental frustrations. He seems to be experiencing a great deal of separation anxiety and bit earlier and more intensely than our other kids. Job is also extremely irritated with his lack of mobility. We've been working especially hard this week on our various exercises and he seems to be even more motivated than usual.

I often say how grateful I am for the many people on Job's team, but this week in particular I am so thankful for his therapist through the birth to three program (essentially special education, through the school district). Janet comes to us twice a month and works with Job, particularly focusing on helping me help Job with his social/emotional/cognitive developmental needs. She's also a pediatric nurse at Mary Bridge and her dual qualifications have been a special blessing to us (like this week, when I begged her to assure me Job wasn't in fact sick! 😜)

So much of what babies do and communicate to show where they are at mentally and emotionally is expressed through their gross motor skills. So, especially at first, it was hard for me to differentiate between what we did with Janet and what we would do in PT - but the older Job gets, the more stark the difference is! Certainly there is overlap, but I am so glad we are receiving both services.

It was just so good to sit with someone and show her what Job was doing and how he was responding to what I was doing and to talk through strategies to help him cope with his frustrations. It's not even that what Janet suggested was new information, but I struggle to know when Job needs what, and her suggestions were so helpful.

He has been a much happier guy the rest of this week, but I'm getting a bit impatient for him to increase his mobility as I know that will make him even happier!