A Family of Johnsons: 07/01/2017

It's been a while since the last update, so hopefully this blog does the wait justice! :) Lots of things have happened these past few weeks, so before I get to talking about Isaac, I'll tell you about other big life happenings.

For starters, we bought our very own home!!! We are super excited and all moved in - even have almost every box unpacked already! (Which is a miracle, compared to the last 2 years of having half a garage full of boxes, not knowing if we'd be moving to Cali, which we aren't, by the way.)

I wish I had more pictures of it, but this is all I have for now.

Isn't it lovely?! 😍

Complete with a POOL! And even corn hole.

We even have a cute little park at the end of the street, where we can only play at 7AM because after that it's just too darn hot. 🌞🔥 Look at these cuties....

Another wonderful event - this little duffer(Daniel) turned TWO! And he LOVES his Grandpa and Grandma McElroy's dog, Bonnie 💕

Hanging out with Grandma M

Impeccable style

Always good hard work ethics to be learned at Grandpa M's house - a boy's dream: DEMOLITION.

Zeke and Jack hard at work

And a most bittersweet moment of the year...Natalya graduating from elementary to middle school - so proud of her!!

My 6th grader!!

The beaming beauty to the right of the podium 💖

And now, on to the baby! :)

There have been a few ups and downs these last few weeks. Isaac has been doing great, gaining weight and meeting goals. He's already 6lbs. 4oz!! And no more oxygen nose-prong thingys! He is VERY happy about that!

The downs have been things like telling us he would be coming home in a week and then a day later Isaac having too much "output"(poo) and that being enough of a concern to keep him longer. Boo!

Another downer, and the most recent, was when the team in Phoenix couldn't find 2 Gastroenterologists (GIs[the intestine docs]) in Tucson who would manage Isaac's rather complex TPN(total nutrition, central line to the heart, etc.). Even when they found one GI doc, the team - including nurse practitioners, nurses, and neonatologists - called around for almost 2 weeks trying to find a second doctor who could be the first's backup, since 2 are required for discharge. Well, turns out no one wants the job. And the normal requirements are for the TPN patient to be within an hour of the primary care doctor. All of which posed a very difficult situation where the only solutions were, A)move to Phoenix where our current docs could manage the TPN, or B)he stays at his current hospital(Phoenix Children's) for the foreseeable future, until he comes off of TPN.....which could be YEARS. 😳😳😳

Uh, yeah, no thanks to both of those.

Needless to say, when Steph and I got that news one morning we went to visit last week, we were pretty depressed. Isaac's nurse, Christine, gave us the news, telling us how families have to move there all the time because of this kind of thing. Well that would suck! Especially considering we just bought a house! 😡😫😭

(In truth, I had gotten wind of the idea a few days earlier, but just that it was a possibility if they couldn't find a doctor, not a for sure thing. So by this time I had already spent many tears weeping and weeping over what might come. Thankfully, God kept reminding me of Who He Is and all He has done for us thus far. This was a dark valley indeed, but He was with me all the way.)

And there's been a new song out called "Hills and Valleys" that has been the strength of my heart these difficult months.

"In the valley I will lift my eyes to the One who sees me there."

"When I'm walking through the valley I know I am not alone."

Back to the same day we get the news from our nurse, Steph and I went to lunch having no idea what to even say to each other, besides "we should probably pray".

We go back to Isaac's room, and we're there for about 10 minutes when the nurse practitioner walks in. She says, "Well, I think we've found a solution." She tells us how the whole team wants the best for Isaac and they love him so much and how they know he needs to be HOME. She said all the nurses and nurse practitioners had been saying great things about Steph and I to their head of the GI team and asking her if she would be willing to make an exception to the one hour rule and be Isaac's primary care doctor and manage his TPN from Phoenix....she said YES. Isaac's GI doc in Phoenix is willing to manage him from there so he CAN COME HOME!!!

"On the mountain I will bow my life to the One who sent me there."

"When I'm standing on the mountain I know I didn't get there on my own."

Thanks be to God!

We were/are so ecstatic! And we can't wait to have him home soon. OF COURSE, this week his GI doc is on vacation, so when she gets back we should be good to go. Steph and I still have a bunch of training in dealing with Isaac's very intricate/complicated line care and such, but we've gotten a bit of training already and HOPEFULLY Isaac will be home in a couple weeks! The nurses train us at the hospital and will make sure we are comfortable and adequately completing the tasks we'll need to deal with on a regular basis before we can bring him home. The whole team at PCH NICU is getting everything ready for Isaac to come home and are so excited for us. His nurse, Christine, has even gotten him on a sleep/wake schedule so he's been sleeping through the night! 🙌

So that's latest. Enough with the chit-chat - here's a bunch of photos! :)