Saturday, November 18, 2017

Isaac - 7 months!

              It's been a bit, so I thought we'd update you all on Isaac and our family!

The Siblings:

Meeting the Arizona Wildcats cheerleaders!
Closest to me, yes, she is the shortest in the whole squad.

Natalya has started Junior High! 😭 But seriously, she's amazing and doing wonderfully. She's a cheerleader, and if you know Natalya at all, it's a perfect fit! Spunky, loud, exciting, happy. Getting pretty good at kicking high!


Zeke winning his boat race

Ezekiel is in 5th grade and has an awesome teacher. He's not currently doing any sports, just hanging out with friends and having fun. 

Jack is in 3rd grade and in advanced Math. He and Zeke are in Cub Scouts, and they really enjoy that. They're also in the Tucson Arizona Boys Chorus.

Mikey in a real life race car

Mikey, Daniel, Victoria (L-R)

Michael is in 1st grade. He is doing well, other than sometimes not doing independent work. But, he's improving and really enjoys school. 

Victoria is 4 now and is a fabulous Diva! She changes clothes probably 3 times a day. She loves all things girly and feminine and pink. 

A true lover of donuts

A thinker

Daniel is the cutest ever! Sometimes a stinker, but mostly adorable and super fun. He talks a lot and is learning new words all the time. 

The Babe:

He loves his toes being tickled 

Isaac is amazing. He's growing wonderfully, up to 12lbs! At 7 months old now, he's holding his legs up in the air for ages - haha! 

He loves to play with his toes and his two fun giraffes - one plushy and the other hard and good for teething. 

He really loves all his siblings and gets the biggest grin whenever they come around. 

Isaac loves his swing, a wonderful gift borrowed from his Aunt Wendy and Uncle Josh - thanks guys!

He sleeps great at night and takes awesome naps during the day. Quite frankly, he doesn't like being woken up from his naps for awake time. 😆

We've taken a couple trips to the ER in the last month, thanks be to God nothing too serious happened and Isaac wasn't admitted. Just some higher than normal fevers and being off of his TPN(total nutrition) a little too long. Isaac was right back to normal the next day after everything checked out fine. The docs ran some tests and did some ultrasounds and X-rays - all was good. 

Isaac has his next major surgery scheduled for December 13th. They have an 8-hour block for the surgery since it's going to involve a lot. 
There will be four attending surgeons, three of which were all at Isaac's first surgery, when he was 3 days old. The fourth surgeon is an orthopedic surgeon. 

Right now, Isaac's bladder is still open and on the outside of his body. This surgery will accomplish putting his bladder into a sphere(as normal bladders are) and putting it back inside of his body. At the same time, the orthopedic surgeon will be suturing Isaac's pelvis together(since it's currently separated) and making incisions on Isaac's hip bones to turn them inward so that his legs face forward. So yes, a lot going on.

His stay and recovery in the hospital should be 2-3 weeks. 
With Grandpa M.

Instead of a cast around his legs/pelvis, Isaac will be in traction, which is basically where they'll hang his legs up at an angle(like you see in the movies when someone breaks their leg). It will be awful for Isaac, I'm sure, since he loves to kick, kick, kick! But, the upside to traction instead of a cast is less time spent in it - a cast would have to be on 4-6 weeks, whereas the traction should only take 3 weeks. 
With Grandma M.

This surgery will be a very good thing for Isaac, I believe. As it is right now, he can't roll over or sit up on his own because of the way his pelvis is separated. Isaac also seems uncomfortable in several positions, maybe from his pelvis or his bladder being the way they are. So, I think after he's recovered he'll be able to accomplish much more in terms of normal development and mobility. 

Thankfully, as Providence would have it, we have help in my mom, Veronica, and Stephan's mom, LaDonna, with taking care of the kids so I can be with Isaac as much as possible while he is recovering. 

As always, we are so very grateful for all the prayers, thoughts, and various forms of help everyone we know has been so gracious in showing us. I know many of you pray for us and baby Isaac on a daily basis, and I thank you!!!!

If anyone feels so inclined, we would be glad to have help in any way possible, particularly during Isaac's upcoming surgery/recovery. It's not an ideal time, to be sure, over the holidays - a busy (and expensive) season! - so we understand if it's difficult to give.

Please click the link below if you wish to donate to help us with traveling expenses during Isaac's time in the hospital. Anything helps!

Love for Isaac

Thanks again for everything you all have already given of your money, time, prayers, and efforts. We are truly humbled and thankful!

Please pray for a good surgery, quick recovery, and blessings upon our family through the whole time, as it will be hard on all of us. 

We hope everyone has a Happy Thanksgiving and a Merry Christmas! 🎄

Sunday, August 27, 2017

Home, Sweet Home

Isaac is finally home!! Thanks be to God! He's been home for about a month now, and life is BUSY! 
Homecoming Day! With Isaac's amazing primary nurse, Christine

It was so wonderful to bring Isaac home from the NICU after a loooooooong 95 days. 

95 days of scary unknowns and frustrating heartache, of surgery and setbacks, of leaps and hangups, of tears and interstate, of trust and trial. Indeed, long is an understatement. But, God is good. And through it all, He was and still is our strength and our fortress. 

As many of you may remember, Isaac was born weighing 3lbs. 5oz. He came home at about 7 1/2lbs and is now almost 9lbs.! Yay! He's doing wonderfully being at home - thriving, in fact. He's outgrown all his newborn clothes and is learning to grasp things. He LOVES to be around all his siblings with all their noise and smiles and laughter and life. Their faces just light up when he smiles at them! The kids all like taking turns holding Isaac and playing with him. The 2 year old, Daniel, whenever he can tell that Isaac is about to cry, says, "Baby sad" and makes a frowning face. 😆 Isaac brings so much joy to our family - a blessing for sure!

La di da di everybody
Now, when I say life is busy, I don't mean "life with seven kids" busy. I mean "life with seven kids, one of whom has a lot of stuff to deal with" busy. Like, a busy I've never ever ever ever ever ever ever imagined before kind of busy. A busy you can't possibly imagine unless you're actually in the thick of it.
It's tiring being a baby

In the beginning, when Isaac first came home, it was lots of alarms on the phone to remind me of every single thing that needed to be done for Isaac. Now, thankfully, I've gotten in the hang of when things need to happen and how to time things most efficiently, for the most part. I still need an alarm or two just so I don't forget, but we're getting in a decent routine, I think.

What most makes up the actual busyness is the amount of time things take to be done, as well as what kind of things need to be done and how many things need to be done. Some days the busyness is a little less, and some days it's overwhelming.

Just as a little glimpse, I'll tell you some things that need to be done or things that we deal with on a regular basis. (It's okay if you might not know what are some of the things I'm talking about....maybe later.) ;)

Make the milk, warm the milk, empty milk bag, rinse bag, prime rinse water through line, empty bag, new milk in bag, prime milk through line, pause priming to attach extension and insert medicine into med-port, continue priming to end of line, adjust feed settings(based on the time of day because its 8ml/hour for 12 hours and 9ml/hour for 12 hours instead of 8.5ml/hour for 24 hours because the pump doesn't have a .5ml option), attach line to G-tube button on tummy, remember to unclamp line(important or nothing flows), run pump.
At least we only have to do that 2 or 3 times a day. And that's just the milk.

Now, I'm going to just list the items needed for changing Isaac's TPN(central line) once a day.
 - 2 lines, one with a blue filter(Lipids), one with a white filter(TPN), and remember, white doesn't go with white
 - a Y extension port
 - 3 needles
 - bag of TPN
 - bag of lipids
 - 2 vials of multivitamins to be injected into TPN bag, 1ml(pink lid) and 4ml(blue lid)
 - empty lure-lock syringe to be filled with multivitamins
 - syringe of iron to be injected into TPN
 - syringe of Carnitor(I don't know) to be injected into TPN
 - 10ml syringe of saline
 - 6ml syringe of Heparin(but only use 3ml)
 - 4 C batteries
 - 2 pumps
 - a TON of alcohol wipes(because germs)
and a partridge in a pear tree. 🎶
Not to brag, but I've gotten that whole thing down to a SCIENCE of 25 minutes, solid.
No big deal 😏

Our life of using alcohol wipes is kind of like that line in O Brother, Where Art Thou - "Well ain't this place a geographical oddity...2 weeks from everywhere." Ours is "30 seconds for everything".

Three pumps that can beep for multiple reasons at any given time. You know how new moms tend to hear (or think they hear) a baby crying no matter where they are? Yeah, mine is beeping....I think I hear beeping wherever I fact, just a minute....ok, nope, false alarm, we're good.

And that thing I was going to do(whatever it was), yeah I'm not gonna do it anymore, or at least not today, or at least not till after I change this leaking poop bag, for the second time today - that will only take 15 minutes. Thank God I'm in the kidney ultrasound room where they have a box of gloves - yesssssssssssssssss.

ANYWAY, Isaac is doing very well medically. Weight gain and growth is good. All his ins and outs and lines and bags and tubes are all functioning well.

He just saw the urology surgeon, who was one of the surgeons during Isaac's first surgery at just a few days old. He said everything is looking good, and Isaac's kidneys look good(hence the ultrasound), and the next surgery should be in early December. That surgery will be to put Isaac's bladder into a sphere shape(as it should be), create a hole for good urine drainage, and put the bladder inside his abdomen as much as possible. Hopefully Isaac will have enough "real estate" to close back over the bladder and sew shut, but if it's a little lacking, the specialty surgeon will be there to place a sort of mesh over top of the opening that's left, which mimics the skin and basically causes skin to grow over the mesh and close up the opening.
Also, the orthopedic surgeon will be there as well to suture together Isaac's pelvis - right now the two halves are not even attached  - and the surgeon will also make incisions in the hip bones to turn them facing more inward, since right now they face straight forward. So basically, they'll just fix his open butterfly situation and make it normal. This will also enable the urologist to put the bladder more inside the abdomen.
Isaac will need to be in a cast for the pelvis situation after surgery for about 4-6 weeks. Hopefully, the hospital stay after surgery will only be 2-3 weeks, depending. Let's just hope he's out by Christmas!

So please continue to pray for us. I know so many of you do, and it's so great to hear of some of your little ones remembering us in prayer!
And thank you to those who continue to so generously bless us with your encouraging words, your time and effort, and even your giving.

That's all for now, except....
I just have to say that my husband, Stephan, has been the most amazing husband and father through everything. He cooks most nights, takes the kids where they need to go, works 6 days a week, and still has an amazing attitude through everything, including putting up with me. ;) He has always been awesome, but has stepped up even more these last few months - the hardest of our lives - and loved his family more deeply than ever before, through dedication to his role of providing and by thinking of us in everything. Thanks babe. 💗

Wednesday, July 05, 2017

Baby Isaac - 12 Weeks Old

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! :)

This boy

Mikey loves his baby brother

Sleepy sleepy


Zeke pretending to be asleep ;)

That's a great daddy right there, reading Dr. Suess to the babe. 💓

Silly faces :P

Daniel is actually asleep lol
They all just love him so much!!!

This boy knows where the camera is at

Grandpa J came to visit 

 Aunt Doris came to visit as well!

And of course, today is the 4th of July - 'Murica!
Spent it with my bro Josh and awesome sis-in-law Wendy and their kids. 

That's all for now. Please pray for us for strength and courage and continued trust in God.