Wednesday, May 24, 2017

Baby Isaac - 6 Weeks Old

Isaac is doing super well! (Or "swell" if you combine the two ;)

It's been a while since the last post, so there's plenty of pictures, though only a couple of updates.

The updates: 
He's growing, growing! At 4 lbs. 11oz now! He is up to 7ml an hour on his continuous G-tube feeds. We just found out they want him to get up to 12 or 13ml an hour, which we're assuming is before he leaves the hospital. As they increase his feeds, they will decrease his TPN(special nutrition via IV) as he can handle it. 
G-tube on the left side of his stomach and PICC line in his right leg.
His blood pressure is doing better - it is not high as often now, so hopefully it will continue to get and stay better. As you can see, he is still on a little bit of oxygen, usually the lowest settings in fact. But, when they have tried to wean him off of it, he acts like he needs it again. Which is not a huge deal. After all, he's a preemie, and his lungs weren't fully developed when he was born, so it's typical for them to need a little help for a while. 
Zeke is the only sibling so far that's visited twice - lucky boy! 

 A belated Mother's Day gift from our amazing nurse, Christine - the pics and crafts on Isaac's wall.

And another Mother's Day gift for all the NICU moms from Curacao - a gorgeous gold and crystal necklace!

The biggest step towards home has been moving to an open crib! He is maintaining his own body temperature very well. That's a big deal in the NICU! :) (Still in an isolette in the pic below.)

He's truly in his happy place there!

 Can you tell this guy really loves his littlest baby brother?! 💞

Zeke had one of the best days EVER. It was his birthday - turned 10 - and he came to visit Isaac with Stephan and me. The Child Life specialist at the NICU came and talked to Zeke and answered a whole bunch of his questions. When she found out it was his birthday, she brought him some gifts - Clue Junior, an AZ Cardinals hat, and a big football. THEN, he got to play in the Kids Zone with Dad. AND on this day, the Kids Zone just happened to have an AZ Cardinals PLAYER come and hang out with all the kids!! Zeke got to meet Troy Niklas, a TE, got his hat and football signed, AND played air hockey with him!
I tried to put a couple videos here, but it's not working, so I'll email it to those who don't have FB, as well as post it on FB soon.

My mom, Veronica, also got to finally come visit and hold Isaac. Mikey, Victoria, and Daniel also all got to visit - they were very happy to finally meet their baby brother! :)

That's all for now:)

Saturday, May 06, 2017

Baby Isaac - 4 Weeks Old

The journey continues...Isaac is a corrected 35 weeks and 5 days(born 4 weeks ago). And he is doing splendidly! 

Major milestones so far:

1) Off the breathing tube and down to oxygen nose prongs. The purpose for these is simply to keep his lungs from sticking together when closing, so he is breathing fine, they're just for a little extra help. 
2) Recovering well and healing wonderfully from surgery. After final confirmation from the urology surgeon, Isaac won't have another surgery for at least 6 months, which is a good thing. They need him to grow to have more "real estate"(as they call it) to work with for the surgery. That surgery will be dealing with the bladder more, as well as his pelvic bones, which were separated at birth. Not exactly sure how all that goes, but we'll know more as the time gets closer. 
3) Feedings of breastmilk through his G-tube are being upped and he is tolerating them very well. This is good! :) They will continue to increase his feedings by 0.5ml-1ml every day or every other day as long as he is absorbing the nutrients and not just pooping it all out. 
4) His weight is currently up - Friday he was at 3lbs. 13oz. - woohoo! 

Concerns at this point:

He's had some funky ups and downs with his blood pressure and oxygen and was looking pretty anemic yesterday, so they decided to give him some blood, which made him a good pink color :) They aren't really sure where his blood is going right now, since they have drawn very little blood since he received some two weeks ago. They're checking all possibilities to figure it out. 
They also performed an ultrasound on his kidneys to see if they're functioning properly. We'll have the results of that in a couple of days.  

I've gotten to give Isaac sponge baths, change his diaper, and continue skin-to-skin holding with him. 
Isaac's gotten several gifts from various groups and people at the hospital - gift baskets, stuffed animals, blankets, and even a special preemie octopus, which he LOVES. More about those here

Isaac has really amazing nurses, and usually he has one or two who always take care of him. A couple of them who've been there since the beginning are really great in particular, Christine, who is Isaac's primary nurse, and Noelle. A primary nurse means that when she works, she always has Isaac, which is so awesome because she gets to know how he acts, reacts, communicates, etc. We are very thankful to have primary nurses we love! 

Jack, our 8 year old, came with me this last Monday to see Isaac. Jack was ELATED to get to hold Isaac and talk to him. Jack loves babies, like REALLY loves them. He was always talking to Isaac while in utero and couldn't wait to finally meet him. When we put Isaac back in his isolette (bed) before leaving, he opened his eyes and was looking around. Jack started talking to him, and Isaac turned in Jack's direction and was listening. The nurse practitioner, Dana, said to Jack, "Did you talk to him a lot when he was in your mommy's tummy?" And Jack said, "Yeah." Dana told Jack that Isaac obviously recognized Jack's voice. Jack was BEAMING and had a smile from ear to ear! :) 

We met with a Child Life specialist, Shannon, who can talk with kids about all the experiences and stuff going on in the NICU, to kind of help them prepare/understand about everything that can maybe be confusing or a little scary. She just answered any question Jack had about all the various wires and machines around Isaac. She also put together a special teddy bear for us to bring home that was fixed with the main things Isaac has, such as the G-tube, the stoma (with a colostomy bag), the nose prongs, and the PICC line in his leg. So cool! The kids thought it was AWESOME. Shannon even gave us a couple syringes and a line to show the kids how Isaac is fed through the G-tube. 

What I love the most about the bear is that the kids can have it at home to get used to seeing different things like that so when Isaac comes home it's not too much of a shock. And they can also learn how to be gentle and understand how his stuff works. 

Natalya, my oldest at 11, came with me yesterday, Friday, and we had a wonderful time together. She was also very happy to finally meet Isaac and get to hold him, although Isaac and his nurse and a neighboring baby had so much going on yesterday we didn't get to hold him till after we'd been there for 6 hours. 😳 But, we made the most of it and spent a lot of the time holding his hand and being with him during most of his procedures, and that was special too. Natalya really enjoyed being there and talked to Isaac a lot. :)

Bird on the chair - too close for comfort!
At lunch we sat in the outside eating area for dinner and almost witnessed a real life movie - The Birds 2. These birds were ridiculously brave as it seems they're used to being fed by at least the crumbs people leave behind. At one point there were probably 10 birds surrounding us and a couple jumped onto our table. Not cool. Kinda scary.

There is a Kids Zone at the hospital where usually patients can come with their visitors and play, but since Isaac is in the NICU, I've been able to take the kids to the Zone to play. It's a pretty awesome place - foosball table, pool table, air hockey, video games, board games, books, and themed parties from time to time. Yesterday, they had a Cinco de Mayo party with snacks, games, and arts and crafts. So that's a really neat and fun thing the kids and I have been able to do there. 

That's pretty much all for now. Right now the hardest part of everything is having to be either here without Isaac or there without the rest of the kids. 
From the video feed online. He knows I'm watching! :)

Stephan comes to see Isaac on his day(s) off and we go together. That's been a nice time for just the two of us actually. We're always talking about how much gratitude is in our hearts for everyone who has made and is making it possible for us to not only see Isaac but also not have to worry about meals all the time. This is a difficult but definitely blessed time for our family. 😊

Sunday, April 16, 2017

Baby Isaac - Week 1

Welcome to the outside world, Isaac Leo! Two months early, at 31 weeks and 5 days, 3 lbs. 5 oz. and 14 in. long.

Isaac was delivered at 7:09 am on April 8, 2017, by emergency C-section. I had placental abruption, which means the placenta detached from the uterus, causing bleeding, and my water broke as well.

Thanks be to God, Isaac has been strong since the beginning, never having a faltering heart beat or in distress. He came out kicking and screaming! :)

This blog is where I'll sorta-kinda document his journey so anyone interested can follow along. It's going to be a long journey. And it started a long time ago when we first found out he had some issues in utero.

At our very first ultrasound, around 13 weeks gestation, we could see that Isaac had some problems unusual things going on with his tiny little body. At first, the doctors thought it looked like he had a tumor near the end of his tailbone and Isaac had two cysts on his brain. Through the subsequent ultrasounds and finally near the end of the pregnancy, the cysts had resolved(gone away) on their own, there was no tailbone tumor, and, instead, we could clearly see Isaac had a bubble(if you will) coming off of his abdomen. While the docs never figured out exactly what was inside the bubble - called an abdominal wall defect - from what they could tell and figure there was probably intestines, the bladder, liver, and possibly his boy goods inside the bubble (which was a sac covering the insides with a thin membrane).

I was due for a fetal MRI the Monday after Isaac was born, to see more clearly what was inside the bubble, but, as it turned out, the MRI was unnecessary. ;)
Getting ready to fly!

A few hours after he was born, he was flown by helicopter to Phoenix Children's Medical Hospital, about 2 hours from where we live in Tucson. We were recommended that hospital because of its renowned (all over the country) care and specialists. It is no accident he is there - that hospital is PHEMONENAL!!! The specialists, doctors, surgeons, NICU, and NICU nurses are AMAZING. Even though Isaac is far away right now, I wouldn't want him anywhere less awesome.

Three surgeons for this little guy
Once he was out of the womb and at PCH(Phoenix Children's Hospital), the doctors could see exactly what was going on with his body. He has a very rare condition called OEIS complex (more here). His bladder, some intestines, and penis were in the sac that was now gone. They had wrapped all that in (basically) saran wrap and kept it moist. Also, his bladder was split in two halves, apart from each other. Also, he has a funky crook at his tailbone, which is tethered spinal cord, here, but he does not have spina-bifida. We have been told it will take several surgeries to get things in working order (at least to some degree).

He had his first surgery on April 12, just four days after being born. This surgery put his intestines back inside his abdomen, and the two halves of the bladder together on one side. (So basically, an open sphere split in half is what it's like at this point). During the surgery, the docs discovered Isaac only has 18 cm of intestines. The typical newborn has 200 cm of intestines. So he was born with less than 10% of his intestines. When they saw that, they realized he was going to need help with feeding and pooping. After everything was said and done, Isaac came out of surgery with a stoma/colostomy (learn about that here), a G-tube placed in his stomach for feedings (more here), his intestines put back in his abdomen, and the two halves of his bladder sown together on one side.

Isaac did wonderfully! He was great during surgery and his recovery is going well so far.
Just like the song "I Will Survive!" :)

The only bump has been when they started feeding him a tiny bit of breastmilk in his G-tube, which he threw up for a while, so they decided he wasn't ready yet, that his intestines probably just need some more time to get working and out of the anesthesia from surgery. So for now, they'll continue to give him all the nutrients he needs through his picc line, (more on that here).

He had a breathing tube in place until yesterday, the 15th, just for some extra help during the surgery and recovery. They removed the tube, and he now just has an oxygen prong thing in his nose (like old people wear sometimes) which really just puts out a couple puffs of oxygen every now and then. He is breathing great on his own otherwise.

Getting him off the breathing tube was the first step post-surgery, so woohoo! The nurses have been managing his pain well, and he has been very vocal since the breathing tube was removed! :)

We aren't sure at this point when the next surgery will be  - most likely in a month, and that surgery will be to put the bladder back into a whole sphere. From then, the surgeons said he shouldn't need another surgery for maybe 5 or 6 months. The spinal issue is not a major concern at this point and is something that will be addressed later on down the road.

So right now, it's all about getting Baby Isaac growing, healthy, well-managed pain post-surgery, and his body adapting to its several changes and new ways of functioning.
He will be in the PCH NICU for at least 8-10 weeks, hopefully free of sickness or infection, so he can just go up from here. :)

Just want to put this out there also - there were a few doctors who, after seeing the ultrasound results in the beginning, told me about the option to "terminate the pregnancy" because of the possible outcomes of Isaac's very rare condition. They were all pretty grim in their summation of how the pregnancy would continue (if at all) and, even if he did make it close to term, of how he might turn out. Well, one of those docs actually ended up being my C-section surgeon. And, my hope is that she recognized the miracle that Baby Isaac is and has always been. They kept saying at each OB appointment that they just hoped he would make it to 20 weeks, then 24 weeks, then 28, then 30, and so on. God kept him in for almost 32 weeks, longer than anyone on the medical staff thought he would make it. He doesn't have a genetic disorder, his brain is perfect, his heart is perfect. And while his issues were caused by something chromosomal, this very rare condition is NOT something that, of itself, comes with mental/developmental issues. AND EVEN IF IT DID, Isaac's life would have no less value than any other's simply because he would be different. That is truth, and Isaac is a miracle, and the fact that he did not die in my womb is a miracle, and the fact he is surviving and STRONG is a miracle.

Isaac was created for a purpose far greater than anything anyone can imagine. He is loved, strong, and amazing.

Praise God, from Whom ALL blessings flow! And Isaac is indeed one of those blessings.

Sunday, June 22, 2014

Baby selfies, trips, family, friends - Spring/summer 2014

 Lots of fun this year!!!
Baby Victoria getting so big!

 Had fun at a Kids' Fest in Graf

Natalya trying her hand at a bean bag toss game.

 Sand and gravel never gets old.
 Here, Natalya takes some pictures from the top of a jungle gym.

 Artists abound! :)

 Mikey and a rainbow!

 Next up, a trip to Regensburg with some great friends!
The amazing cathedral there, St. Peter's.

 Our friend, Jesse, with Victoria :)

 And Mom, Dad, and Kevin come to Germany!!!!
 First beers shared in Germany! Franziskaner - nothing but the best!!
 Kevin loved the autobahn! Although, in this picture, we're going down a smaller road, and slower. :)

 Visiting the Odeonsplatz in Munich. :) Mom and Victoria

 In the Theatinerkirche in Munich - amazingly beautiful! Sending up some prayers :)

 Simply stunning!

 Going towards the Marianplatz

 Taking a little break - Victoria loves shoes :) Grandma's are approved!

 Funny story: stopped sooner than planned to have Mass at the Heiliggeistkirche. As it turned out, the Mass was not in English, not that we were expecting it to be, but it was not in German, either. It was in Slavic. Haha! So we followed along as best we could, although the ending was entirely foreign(bu dum, ch!). I'm sure it was a fun experience especially for the fam - a Slavic Mass in Germany! :)
 And on to the Eibsee! Near Garmisch, at the border of Austria and Germany, this amazing glacier lake is breathtaking and crystal clear.

 Mom, down by the water.
 The many shades of Kevin :)

 A little rainy trip to Amberg, here is the organ in St. Martin Church.
 Saying a prayer for Grandma Witschen.
 Summer fun - Jack is enjoying a well-deserved treat after completing an UNDEFEATED season of soccer!!

 This is the entire team Jack was a part of that defeated EVERY other team this season - no joke! So proud!!
 At a goodbye/b-day party for our friends, Jesse and Raychael. Victoria just loves him! :)
 Here is Natalya at the end of the year awards ceremony. She won a perfect attendance award for the 4th quarter, as well as a certificate of appreciation for being in the "meeter-greeter" program in her class, helping new kids out. :)

 Here we are with a very good friend, Joe, in Ramstein. Lunch at the Macaroni Grill was amazing, but it was even better catching up with a much-missed friend! :) The kids just love him so much!
 And to finish off, a couple of selfies. :)