Update and Hospital Visit Photos

We made it home! Ethan was a true champ, despite running a fever the whole day. He and I made it to the hospital and found a parking spot - which is not easy. Luckily, he slept most of the drive.

Ethan on his way through the parking garage

Such a little cutie, waiting on the elevator

The first elevator ride of the trip

We found the right place in a maze of specialist offices and checked in. Despite their mask policy for kids with fever, they thankfully didn't make Ethan wear one. I would have had a rough time getting him to keep one of those on! After lots of paperwork and waiting, we were in!


Happy baby with a barcode that matched mommy's barcode


I was so glad that he was happy and playful when we got into the room. He has been sick the past day or so and not very smiley.

Big smiles for mommy's funny faces

The endocrinologist had me strip Ethan down to a diaper so he could check him out. Thankfully, he feels that Ethan looks developmentally on track. He measured everything (yes... everything...) and feels that his ONH is most likely so mild that it isn't going to affect his growth in any way. He didn't feel it was necessary to run a bunch of lab tests, however he did order a basic thyroid test just to be on the safe side and see what we're dealing with. Ethan has to go back in 6 months to compare his bloodwork and at that time we'll know if more extensive testing is in order.

I'm a great kid! I sit still for the doctor and I don't complain about a thing!



Riding another elevator down to the lab

My good baby boy, still just as sweet as can be after all this

Putting on his game face - let's DO this!

The lab tech gave Ethan some specialized sugar water for his pacifier to help with the needle pain. When that sugar water hit his tongue, his eyes got really wide. I think he liked it.

What a brave little guy he was!

After a quick blood extraction, we were done! Ethan got a Bugs Bunny bandaid and then we were out of there - off to search for our car.

Sound asleep after all that excitement

Optic Nerve Hypoplasia

Today is another specialist appointment for Ethan, his endocrinologist appointment. At his 4 week checkup, I mentioned my concern that Ethan's eyes aren't aligned. Our pediatrician agreed that they weren't, and referred us to a pediatric eye specialist (Dr. H). Dr. H dialated Ethan's eyes and diagnosed him with Optic Nerve Hypoplasia. He said the nerves behind Ethan's eyes, particularly his left eye, are on the small side. He put Ethan on the list at Cook's Children's Hospital for an MRI so that we could monitor the extent of damage the ONH might be doing to his brain development. He also recommended us to an endocrinologist at Cook's Children's Hospital since ONH often affects the growth of the pituitary gland.

Deep breaths. This was a little overwhelming. I went in thinking he'd say the lack of alignment in his eyes was normal and I'm just a worrier. In fact, in the end he said the eyes would either self-align or could be corrected by surgery later. This poor baby!

After a few days of really thinking this through and discussing it with family, I called Dr. H's office and explained that I was having problems with the concept of sedating a 9 week old baby, and that I really needed encouragement that this is necessary before I would feel good about it. We had a heart-to-heart and he explained that this is really for peace of mind, that if it were his child, he would want to know one way or the other if the brain was developing normally. I decided to go through with the MRI.

The following week, Ethan saw his pediatrician for poop issues (apparently Ethan only poops once or twice a week and this is normal for him), and the pediatrician seemed surprised that an MRI was ordered for what she was told was "an extremely mild case in one eye which may or may not affect him later." Up to that point, all I had heard were things like "abnormal brain development" and "possible hormonal growth issues." This can be very scary for someone who already worries enough. And again, it's just too early to tell if the velamentous insertion had any affect on Ethan at all.

Armed with this new information, when the Cook's nurse called a few days later to confirm Ethan's MRI appointment and tell me that my part out of pocket would be over $2500, I felt okay about cancelling it. It's just a little too much financial burden on us right now for something that we can't do anything about for several months or a year anyway. Part of me feels guilty. Like I'm overlooking Ethan's health because of money. But then again, if I can't change anything right now anyway AND he's still going to have regular eye specialist checkup to monitor his ONH, why would I need to give myself more to worry about? You can see this has been weighing heavily on my mind.

So, in the end we are not doing the MRI just yet. Since his initial appointment with Dr. H, Ethan has shown us that he can see us, he laughs at our funny faces and watches toys and lights with interest and intrigue. His continued progress eases my mind. If he weren't progressing, things today might be different. (WOULD be different). We are going ahead with the endocrinologist appointment just to rule any of that out. It's covered by insurance anyway so there's no harm in seeing him. I just pray everyday that my sweet little boy is just as perfect as he looks.

Hungry Bugs

Sigh.

Conversation tonight at dinner.

Aden: Mommy, I don't like this bite. (spits it in his hand and throws it on the floor)

Me: Babe, it's okay if you don't like it. Throw it in the trash though, don't put it on the floor.

Aden: Yes, I put it on the floor.

Me: No, that's how you get bugs.

Aden: Bugs?

Me: Bugs will eat that if you throw it on the floor.

Aden: I want to feed the bugs.

Me: (realizing this has taken a turn I don't like) No, we don't feed bugs.

Aden: Aren't they hungry?

Me: They can go outside if they want to eat.

(Aden ponders this for a minute.)

So to anyone who might be with Aden when he begins to tell you about how we have bugs in our house and we feed them chicken, this is where he got that from. I'm sure his teachers are going to look at me funny for a few days.

Jesus loves me, and Her loves you too.

Every night before bed, Aden and I talk about Jesus, say prayers and (his newest insistence) sing "Jesus Loves Me." The other night, I told Aden that Jesus loves him and he smiled and said, "Yes, and Her loves you too." How sweet, Aden's God is female.

This past Sunday, Aden went to church with Gigi for the first time. She said he strutted down the halls telling everyone "I'm Aden Elwell" and putting up three fingers to show his age. The ladies in the nursery loved him too. He sang songs with them and was their helper (of course). He had a great time, and I'm sure it wasn't his last time to go either.

He was pretty excited that he got donuts before church and a happy meal afterwards. As if the singing and playing wasn't fun enough!

"I'm a Good Helper!"

I am loving age three! Aden has discovered "chores," but loves them. Yes, I know this won't last. Pretty soon I'll have to pay him for stuff like this. But until that happens, here's how we have fun indoors!

And outdoors!

Baby Legs and Baby Laughs

Baby legs! And dinner tonight was made possible by the letter "B" for Bumbo Chair.

Aden kissed Ethan and it just cracked him up. In fact, we get our best smiles from Ethan when we give him kisses.

Ethan gave lots of little laughs to his daddy tonight. He's so sweet! I have about 10 photos like this...

Brotherly Love

These two just steal my heart more and more each day. But what REALLY gets me, is when I see the bond that's forming between them. At first, having Ethan around was kind of a new thing for Aden. He has had a great time showing off his new brother (or, as he calls him, "his baby.") But then it sort of tapered off a little when Aden realized the dynamics of his family changed, as did his life forever. He became indifferent to Ethan. Didn't mind him being there, but wasn't exactly jumping for joy either. As each day passes, Aden becomes more and more tolerant of Ethan and even has a little fun with him from time to time.

Ethan, however, ADORES Aden. If he's crying, he only has to hear Adens voice and he becomes quiet. A sure way for Ethan to get settled is to put him on Aden's pillow where it smells like his big brother. He is as calm and happy as can be if I set him in Aden's arms. I'm not sure if Aden realizes how much he's loved yet, but I love seeing the two of them discover a relationship together.

Weekend Fun

Just a few random pictures from our weekend.

Because sometimes I forget.

Sometimes, I forget what this little angel looks like when he's sleeping.

MAMA!!!!!

Often overheard at the Elwell House:

Aden: "Mama!! Hey Mama!!! MAMA!!!!"
Me: "What sweetie?"
Aden: "I POOPED IN THE POTTY!!!"
Me: "That's awesome Aden! I'm so proud of you!"

....
....
....

Aden: "WANT TO SEE IT????"

Where is Rip Van Winkle?

Well, Ethan is between 7 and 8 weeks old (if you can believe that!) and still isn't on any sort of sleep schedule whatsoever. Not even close. We're also coming off three bad nights where he has been up and down all night, grumpy and fussy. I had hoped by now he would be sleeping at least 5 or 6 hours at night, but we're still lucky if he gets to a full three hours. We do all the recommended things like establishing a bedtime routine, bath time, reading, calming the home before bed, dimming lights, you name it. I don't even really take him in the bedroom until it's time to start winding down for bed just so he can associate the feel of the room with bedtime. Sigh. No luck.

Playdate with Mia

We got to play with Mia this weekend and Aden had a blast. She just recently turned two - what a big girl!

Ethan got to meet his cousin too, he was as excited as he could be about meeting someone who can't feed him or change his diaper. He'll be able to play with the kids soon.

We all headed to the pool and met up with Little Lisa.

Then headed back to the house for dinner.

Shopaholic

Aden loves to shop. Anytime we get in the car, he wants to go shopping. If you tell him we're going to go to the store he gets so happy. This boy is really a miniature of his mommy. The new thing now is that he takes his stroller with his doggy shopping. Yesterday, we went to Target and when he walked through the door, he said, "Oh! THIS is a wonderful store!" And then, "Do they have food here?" (You can tell in the first picture that I didn't comb his hair after his nap.)

Maybe this face means Ethan is not as big of a fan of shopping. Honestly, he loves getting out and being strolled around - he doesn't care where it is.

Aden found frosting with colorful sprinkles!

Consulting the shopping list...

Ethan is enjoying shopping in his own way...

BANANAS!

Helping Lola pay for the items...