Our Cal Pal - 5 Months!

Regan here! It's been a while since I've given an update on my little not so little Cal, and since today he is 5 months old I thought I'd share what's been happening since my last post (read more about Cal herehere, and here).

Cal is SUCH a happy baby, which just makes everything so much better and so fun!  He will smile at anyone and smiles all. the. time. 

His eating has gotten better.  He still has his G-tube, but will usually drink 1-3 ounces from a bottle each time he eats, then we give him the rest through his tube.  

About a month after we  brought him home from the NICU we had his followup appointment with his cardiologist.  We were expecting to have seen improvements, or no changes since we left the NICU, but unfortunately there were a few new developments that were a little worrisome.  His heart echo showed some mitral valve stenosis, as well as pulmonary hypertension. 

The cardiologist recommended we do a sleep study to see if Cal has obstructive sleep apnea, which he guessed was contributing to the hypertension. Cal has a smaller jaw that is a little bit recessed, and the doctors thought maybe his airway was getting blocked because of it.

We did the sleep study, and it turned out Cal does have severe sleep apnea.  His oxygen was frequently dropping and coming back up and they gave us all kinds of numbers that I don't really know the meaning of.  I just know they said it's bad.

(Side note...yes I did have his Owlet monitor on every night and it was never going off, but the doctors said it may just be that his oxygen was dropping and coming back up so quickly that it wasn't picking up.)

So now Cal is on oxygen to help with this.  He is supposed to be on it 24/7 because of the hypertension, but we give him breaks every once in a while during the day (doctor approved). And actually, California is now Cal's favorite place (not surprised) because his cardiologist said we could keep his oxygen off for the most part during the day when we are down there since it's easier to breath at sea level. Maybe we need to move ;)

P.S. Cal's beach outfit from Lulu + Roo is too much for me to handle (heart eyes, heart eyes)

About a week and a half ago Cal underwent a little procedure where they put him under so that they could scope out his airway while he was asleep, and see what was causing the obstruction.  They did a procedure called Supra Glotto Plasty where they trimmed up some extra/floppy tissue inside the airway.  The ENT thinks this will help him a little, but when they were scoping out his airway, they determined it's Cal's tongue falling back into his throat that's causing most of the airway obstruction. Which is a bummer :(

The ENT we've been seeing (who did the procedure) says this is something Cal could possibly grow out of in the future, but we also may consider doing a jaw distraction surgery where they will bring the jaw forward, helping the tongue to come forward as well. This is a pretty invasive surgery and the ENT just isn't sure if it's right for Cal yet.  

Throughout all of this Cal has been such a champ.  He smiles through it all, and continues to surprise us all with how well he's growing and developing in other areas.

He is also followed by a Hematologist, Urologist, and Neurologist, and has monthly visits to our home from an Occupational and Physical Therapist.  We are so grateful for amazing doctors and therapists who have been following Cal closely and making sure he has all of the help he needs to continue growing and developing. 

There are still a lot of unknowns for what the future hold for our sweet Cal.  It would be very unlikely (we've been told) that he won't have at least some degree of mental and physical delays, and we know it's going to be a long road ahead of doctors visits and followups, but we are going to give him every opportunity in the world to reach his full potential.  He has already shown us his strong will to push through every obstacle thrown his way, and we know he'll continue on that same path.

Happy 5 Months buddy, we couldn't love you any more!


DockAtot

I've already mentioned how much I love my DockAtot in this post, but, I've had a couple of friends who have been on the fence about getting one ask me how well I really like it. So I wanted to write up another quick review.  Plus, it seems like some of the cutest pictures I have of Cal are of him in his Dockatot, and I need an excuse to post them ;)

First off, my husband and I do not co-sleep (meaning sleep with Cal in our bed).  At night he sleeps in his Halo Swivel bassinet (which I also love). But the Dockatot is not just for co-sleeping.

Cal naps great in the Dockatot, and it's so nice keeping it right next to my "office" where I work during the day so I can be close to him while he naps.  It's also so convenient to travel with.  We haven't traveled much with Cal yet, but last weekend we went up to Park City to my grandparents condo for the day, and I brought the Dockatot for Cal's naps instead of his pack n' play (which is so much heavier and spacious). It was perfect!

The other thing I love about the Dockatot is that it's great for tummy time! The cushy, breathable bumpers can be positioned under the arms to help develop neck strength and motor skills during tummy time.  

Have I sold you yet?? Ha! 

If you have any additional questions, feel free to ask in the comments below!

Thanks for reading!

xx

Regan

Cal's Newborn Pictures with FotoFly

Hi! Regan again :)

If you read my Newborn Baby Essentials post, you know that one of things I think every parent needs to invest in is photos of/with your new little love.  I wasn't able to get Cal's pictures done as a brand new baby since he was in the hospital for the first 8 weeks, but I'm so glad I still decided to get them taken once he came home.

We did them with FotoFly at their SLC City location and I am so in love with how the photos turned out.  I will truly cherish them forever!

We had such a great experience with the photographer there, Max.  Cal was such a good boy and was smiling right on cue and slept through the first images, which was perfect.  Max had some great tricks to get him to wake up and open his eyes when we needed him to and to look right at the camera. 

One of the best parts about working with Fotofly is that they guaruntee you'll have your edited photos back within 24 hours! Also, their prices are pretty unbeatable.  You can do a 60 minute session for $125 and that includes all the edited images emailed to you.

Thank you FotoFly!

Regan's Newborn Baby Essentials

If you haven't heard yet or seen on our Instagram, my sweet little Cal is HOME!!

I am so out of my mind happy and loving life with him home! I am NO baby expert, but wanted to share some of the things that have made life at home with Cal so great.  These are things that I think every new mama needs.

Dockatot

I can't say enough great things about the Dockatot.  Cal sleeps SO well in it.  He sleeps in his Halo Bassinet at night (which I'll share more about below) but naps in his Dockatot.  I love that I can put him up on our bed and not worry about him rolling off, or suffocating because the fabric is breathable and 100% safe for infants. I also love this adorable play yard from Finn & Emma.  It fits perfectly over the dockatot.  Cal is still a little young to play with it, but it sure looks cute out in my living room :)

Little Unicorn Swaddles

These are by far my favorite swaddle blankets.  I got a couple as shower gifts, then I had to go buy myself more because there are so many cute prints.  I need them ALL. They are breathable, soft, nice and big, and just so cute.  They also keep your baby swaddled nice and tight.  Nothing better than a swaddled up burrito baby. haha. When Cal was in the NICU he couldn't always wear clothes because of all the monitors and they were constantly unwrapping him to look at his breathing and poke him or listen to him.  I did bring him a new blanket and hat every day though and always got so many compliments on his Little Unicorn swaddle blankets.


MamaRoo

I'm pretty sure the MamRoo is a well-known baby product, but I had to add it in here as one of my baby essentials.  Cal's occupational therapist when he was in the NICU recommended I get one.  Apparently swings are good for babies' brain development.  At the time I didn't have one for him, but I knew I needed one after she told me that and I'm so glad he has it now! I work full time from home, and it's a life saver being able to put Cal in the mamaRoo next to me while I work at my computer. 

Sollybaby Wrap

I always thought these wraps and all the colors they come in were so cute when moms would wear them.  It wasn't until I tried one myself that I realized how amazing and comfortable they are to wear. I love carrying Cal around in it and this is another thing I feel like I need in every color, ha!

Owlet Monitor

This should maybe be at the top of the post, because, really, I think EVERY parent needs one of these. The Owlet is a little sock your baby wears that tracks and allows you to check your baby's heart rate and oxygen levels anytime.  I don't think I'd be able to sleep at night without it! Below is a screenshot from my phone showing what the app looks like.

Halo Bassinet

Paige talked about this in her 2016 baby product review post, and she told me this was by far her #1 favorite baby product, so I knew I needed one for Cal. It really is SO nice that it can sit right up next to your bed and swivels back and forth and side to side. My mom also got Cal this cute mobile that fits on the side of the Halo bassinet and Cal LOVES it :)

WubbaNubs

There's something about those Soothie pacifiers (the round green ones they give you in the hospital) that babies love. The only problem is a lot of times babies can't keep them in and you're constantly having to hold them in your baby's mouth (at least I was!).  The WubbaNubs are those same Soothie brand pacifiers with a soft stuffed animal attached, that helps weigh the pacifier down and keep it in.  Paige's son, MJ, loved his and Cal does now too!


Fawn Design Bag

These bags are not just for diaper bag use.  They're cute for anyone! But I love all of the pockets for organizing everything I need in my diaper bag.  They come in great neutral colors that go with everything and I love that they can be worn as a backpack!

Fisher Price Bouncer

This is a super simple little bouncer but Cal loves it and it's perfect to keep in my bathroom to put him in while I shower and get ready.


Hands Free Pumping Bra

This is only for those who know they are going to need to pump...a LOT.  I couldn't nurse Cal when he was on IV fluids, and had a hard time nursing him when he was finally able to eat.  He did great with a bottle, and we just wanted to get him home, so I figured I'd practice nursing at home.  Well, now he won't nurse because he's so used to the bottle and getting his food right away, PLUS I don't like not knowing how much he's getting.  Long story short, I am exclusively pumping and bottle feeding now.  And it's a LOT of work. When I finally heard about this bra, I immediately bought it and it has been a game changer.  I pump for 25 minutes each time, and not being able to use my hands for 25 minutes 7-8 times a day is impossible.  

This bra is a life saver.


Baby Pictures

Okay, this is the last thing, and it isn't a baby product, but I definitely think professional newborn baby pictures are something all parents should get.  I'll be sharing a future post soon with all of Cal's pictures, but here's a little preview.  

FotoFly did such an amazing job and we are so glad we got these done! I'll cherish them  forever.

I hope this is helpful for any new moms or moms-to-be! I knew nothing about which products I needed, so I asked around a TON and I'm so glad I did! Being prepared and having everything you need before baby arrives adds so much less stress to the mix when bringing home that new little life.

Thanks for reading!

Regan


Cal's Nursery + NICU Update

Putting together Cal's nursery was one of the things I was most excited about and eager to get started on when I found out I was pregnant with him.  I wanted his room to be boy-ish but not too baby-ish to make it easier to transition as he grows and gets older.  I love how it came together.  It's my favorite room in the house!

I got almost everything from Target!  One of my favorite things is this dresser/changing table that looks to me like it could be from Restoration Hardware. Such a great price and really good quality!

The animal prints are from Etsy and the picture frames are from Target. The rugcrib, and lamp are also Target.

Scroll to the end of this post for all the linked details from Cal's nursery as well as the latest update on him. 

Cutest and tiniest pair of moccs from Freshly Picked

I'm so excited to get Cal home and show him his room! 

The number one question I get is, "When do they think you'll be able to bring him home?"  I SO wish I had the answer to that question, but it's so hard to say.  One thing we've learned from Cal being in the NICU is that it's just a huge waiting game and requires a lot of patience and faith.  

We've gone through ups and downs during the last four weeks in the NICU, and we've learned that we just need to trust Cal's doctors and give him the time he needs to get better.  We learned the hard way that we just need to take things slow with him and not push him too hard.  

Right now Cal is still getting respiratory support.  They have slowly started to wean him off a machine called NIPPV.  Once he's on a low enough flow of oxygen we are hoping we'll be able to start feeding him again.  Right now he's getting my breastmilk through his feeding tube (so sad thinking about him having a constant tube down his throat and not being able to taste or eat anything orally!). 

So at this point we will just continue to pray and have have faith that he will continue to get stronger and better.  Thank you again for all of the kind words, thoughts and prayers for our family, and especially for Cal.  Each time we pray for him we also thank God for all the wonderful people we have supporting and praying for us.  I will update again soon!

-Regan


Our Miracle Boy

On January 11th at 8:15am we welcomed our sweet baby Cal into the world!  He decided to come a few weeks early and it's such a miracle how it all happened.

As I mentioned in a previous post when I announced I was pregnant with Cal, we knew there was a chance he'd be born with some chromosome abnormalities.  We knew it was out of our hands and just felt so blessed that we were even pregnant with him, so every day we just prayed that he would continue to grow and develop into a healthy baby boy.

After a fairly normal and easy labor and delivery, Cal made his debut! He wasn't breathing well on his own and needed respiratory support.  Because we knew he might be born with some abnormalities, we had lots of doctors ready to care for him right when he was born.  A heart echo was one of the things they did right away, and the results came back showing quite a few defects with his little heart.  At that point it was pretty clear he had the unbalanced chromosome translocation, but the microarray test results confirming this would take over a week to get back. 

Over the next few days Cal was showing a lot of improvements and after a follow up heart echo, his cardiologist told us we could pretty much rule out a heart surgery at that point because his heart was functioning normally and doing its job, despite all of the little defects it showed.  What a blessing it was to hear that! 

During the next week as we waited for the chromosome test results we started to get a little bit hopeful that maybe he didn't have the chromosome translocation after all.  He was looking so good and healthy, it was hard to believe there could be anything wrong with our perfect baby boy.

Well, the test results came back and did confirm his unbalanced translocation - a partial trisomy of chromosome 15 and a partial deletion of chromosome 16.  

Because this is so uncommon and there really aren't any known cases of people with this exact genetic condition, we really don't know what this means for Cal or what effects it will have on him in the future. What we do know is that we love him so much and that he is the perfect baby for us.  We know he was meant to come be part of our family and fulfill his purpose here on earth.  

Today marks day 23 in the NICU with Cal.  It's been tough but we are so grateful for the care he's receiving from incredible doctors and nurses and are continuing to pray for his body to heal so that he can come home with us soon.

Thank you for all the love, prayers and support.  I will be posting another update soon!

-Regan

P.S. The nurses all tell me Cal's the best dressed baby in the NICU so I thought I'd share a few of his outfit details below ;)


Regan's Baby Shower

Last weekend we got to celebrate Regan and her baby boy.  It was the perfect morning visiting with friends and family, and spoiling Regan and her baby. 

We wanted to incorporate the subtle safari theme Regan is doing in baby boy's nursery (coming soon!).  Kristen from Cap + Crown designed the cutest invitations and stationary that went perfectly with the theme (see her designs in the pictures below).  

The shower was in the morning, so we served yummy breakfast foods including our Baked French Toast and Pumpkin Bread in muffin form. The quiche was from our favorite cafe in Park City - always a favorite! And for the guests to take as they left, Noelle from Noelle's Bake Shop made and packaged the most delicious snickerdoodles.  Seriously so yummy! Be sure to check out her shop if you need to order cookies for anything. 

Huge thanks to our sweet friend and favorite photographer Brittni Willie for capturing the morning perfectly.  

We can't wait to meet Regan's baby boy in January! All shower details pictured below :)