Friday Morning Update (4/15/16)

Job is doing so much better today. He lost a liter of fluid last night!! We had already noticed the swelling go down in his arms and legs, but this morning when we saw him we couldn't help but notice how drastically the swelling had gone down in his head!! I know that he's still really sick and I know it's going to take days still for his swelling to go down enough that they can close up his chest (Monday was given as a possibility?). But I'm so happy to see my baby look more like my baby!

Wednesday night was so scary - they told us to come say goodbye to him when he went into cardiac arrest (because we were on our way to Tacoma to take Ezra and Isaac home after a visit to the hospital). We think (well, *they* think) Job had so much fluid (and therefore swelling) that his heart just couldn't pump enough blood to his kidneys because of the pressure of the fluid/swelling and that this incredible pressure on his kidneys decreased their function as well.

Thankfully God decided to give Job another day of life (now two more!), but this "event" (as his medical team calls it) has given us the opportunity to have a lot of difficult conversations. We had to, have to, face the reality of Job's death sooner rather than later. Until Wednesday night I think we were lulled into a... false sense of security? He had survived his surgery and made so many gains during the day on Wednesday that stopped thinking about the possibility of him dying soon.

So it's been good for us to have all of these conversations and to just cry and pray. We're seeing a number of improvements between yesterday and today, and we're thrilled! But we're also recognizing that for every three steps forward there will likely be two steps back and we're coming to terms with that reality. We've said it to ourselves so many times and to others many times, but this is a long, long journey. It's going to have so many ups and downs. Now we know what one of those "downs" feels like and are probably a bit more prepared for future "downs".

Thursday Morning Update (4/14/16)

Well, Job took a turn for the worse last night. He is doing ok now, but he has lost a lot of the progress he had made as far as the amount of medical support he is on.

Basically, the incredible amount of edema he was experiencing in his midsection was disrupting blood flow to his kidney and the pathway between his kidney and his bladder. They were just about to drain fluid from his tummy through a catheter to relieve some of the pressure when his blood pressure starting falling drastically and he went into cardiac arrest. They did chest compressions for nine minutes to get his heart pumping properly again.

They've drained a lot of fluid from him, and he has started peeing, which is a good sign. But he is still so puffy, because of the capillary leaking into bodily tissue. Eventually, his blood vessels need to start "sealing up", as the doctors put it.

I guess one thing to be learned here is that his recovery, AT BEST, is going to be a roller coaster ride. I wonder if, rather than giving a blow-by-blow of every step foward or step backward, it is best to just say that he is still fighting for his life, and will be for the foreseeable future (if there's such a thing). Even when things are looking up, it's important for Autumn and me to be prepared for some really difficult days and setbacks.

But we continue to bless the name of the Lord our God, whose mercies endure forever. Amen.

-Seth

Wednesday Morning Update (4/13/16)

Job has turned a corner! He is still very sick, of course, but his doctors are so pleased with his improvements (particularly his decreasing heart rate). Since his heart rate is down, his doctors are now able to work on balancing his blood pressure and fluid retention. It's hard to see how very swollen his little body is! His goal for the next two or so days is to "drastically improve his urine output" - he needs to pee!

Tuesday Morning Update (4/12/16)

Job's tough period has started. All day today his blood pressure has been really low and his heart rate has been really high. He got an echocardiogram to check if there was bleeding in his heart, but there's not! So he is just under a lot of observation and on medication to bring his heart rate down. This is in the realm of normal for babies recovering from the Norwood proceedure

Monday Updates (4/11/16)

10:00am

Today is surgery day!! We are a bit apprehensive but perhaps also relieved this day is finally here, because we have been thinking and talking about this day for weeks now. Seth and I are here at the hospital together, determined to soak up every moment we have with our baby until surgery.

1:00pm

We walked with Job to the OR for his first surgery, the Norwood procedure, and kissed him good bye.

2:30pm

We got an update that Job's chest is now open and surgery has begun.

5:30pm

We got an update that they are beginning the process of finishing Job's procedure. Things have gone well.

8:30pm
Job is out of surgery. We cannot visit yet, for at least an hour. The surgeon came to talk to us. He seemed pleased with how it went and said that he is responding in a normal/expected manner thus far. He did not have to go onto a heart and lung machine. So good news so far. It's an hour by hour thing. It is normal to see some problems arise about 12 hours after the surgery, as his body begins to responds to the physical trauma of the surgery. They will deal with those difficulties as they come. But now is time for thankfulness, optimism, and praise to our Heavenly Father

9:30pm

We just got to visit Job. Doctors and nurses are telling us that he is doing really well. It's a little unsettling to see him in his current state - chest is still open with a patch over it, lots of tubes and wires, ventilator helping him breathe, etc. There is a picture posted below, but it's a hard picture to see as he looks quite sick.

But we are very hopeful and full of praise this evening as our Faithful God keeps providing for us. He indeed answers the fervent prayers of those earnestly seek him in the name of his Son Jesus Christ. Thank you everyone! Your encouragement is truly invaluable to us.

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Sunday Night Update (4/10/16)

Today was such a lovely day. We met with Job's primary surgeon and discussed the surgery and signed permission forms; sat together and caught up on our respective experiences of these last few days; enjoyed several visitors, including Ezra and Isaac (each of whom I took on a little "date" to the lounge to cuddle and chat with them individually); and held Job for hours and hours. I even got a long nap in and made huge progress in my attempts to pump for Job! We feel so rested and ready to confront tomorrow.

Job's surgery is actually the second, not the first, scheduled for tomorrow and so it will start sometime between 1-3pm (depending on how long the first surgery takes). It will take about 6 hours. We were given a pager and will receive updates throughout the surgery about its progress (for example, when he is put on the ventilator or when he gets off the bypass machine, etc.) and after the surgery we will meet with his surgeon (probably around 11pm?).

Here are two pictures of all THREE of our boys tucked in for the night:

Saturday Night Update (4/9/16)

Our poor guy had a long day. Lots of procedures and pricks and new tubes so he didn't get much cuddling during the day but we're trying to make up for it now.

 
The best part of today was that his brothers and grandparents and Great Aunt Kathy came to visit!
I'm missing Ezra and Isaac and having a slow painful recovery from my c-section, but sitting here and snuggling Job (with the Mariner game on in the background) is strengthening my resolve to be cheerful. We have so clearly seen God's sovereignty and kindness to us over the last few days on this roller coaster journey and we are very grateful for your continued prayers and encouraging comments.

 

Transporting to SCH!

Job is headed off to Seattle Children's! We will be following him once Autumn is discharged from TG this morning.

Thursday Update (4/7/16)

From my mom on Facebook: "Mom is recuperating at TG until Friday or Saturday. Baby is being transported to Seattle Children's Hospital early Friday morning. And dad weathered the storm!"

Birth Announcement!

Job Simon Manuel Parkinson

9:26pm, April 6th 2016

7lbs, 19 inches

We chose the name "Job" because we want our son to mirror the faith in God's sovereignty that the Biblical Job displayed throughout his suffering (and because of the Washington state history tie in to Job Carr - I spent my pre-motherhood days researching and writing about PNW and Tacoma history, so such names have been particularly attractive to me).

"Simon" was Ezra's choice for a middle name, but we don't know how he thought of it! We couldn't (well, wouldn't) legally name this baby "Frightful Simon Parkinson" as Ezra really wanted us to, but the boys call him "Frightful" (as do we, with them). We could (and did) give him the middle name Simon though! ("Frightful" is the name of a falcon in one of Ezra's favorite books and he almost immediately chose it as his brother's name when we told him about the pregnancy).

"Manuel" is the name of Seth's mother's father. (Ezra and Isaac's names were also chosen after OT Biblical figures and Washington state historical figures, with middle names of their grandfathers).

Delivery Day!

Today is delivery day!! We will update later, but expect to meet this baby by tonight!

There are some updates in between this and the last post, I suppose. I'm 40 weeks today, April 6th, and have been having inconsistent contractions the last few days. We are really grateful to have made it to 40 weeks and decided to ok the induction now rather than schedule a c-section for later in the week.

Theoretically this could mean, if the baby (still no name, sorry!) is born today, decisions about surgery at Seattle Children's would be made tomorrow or Friday and we would transfer up there over the weekend and do surgery Monday? (This is all tentative and speculative, of course.)