Visits with friends

Our aunt and uncle, Vianne and Jim, are visiting in Ohio this week. Here is Vianne with Jackson... she's a pro.

Duncan and Jackson also got a visit from their soon-to-be-playmate Jack Kellough. Jess gave birth to Jack just a couple weeks after our boys were born. Duncan is taking a nap, so he couldn't join in the picture.
And here's Jess' mom in HEAVEN... she loves the grandma role. Duncan is napping in her arms.

Duncan's turn to be in the Bumbo. He's not so sure.

Duncan is not sure here whether he is looking at himself or his twin brother... mirrors confuse the HECK out of twins... hee.

A future Louisville cardinal? Jackson preparing for night-night time (like the pink pacifier?)

Self portrait of Duncan and me. He loved having his patch off!

OK, so I went a little camera happy... here's another self portrait of me sandwiched between my boys - my favorite spot!

Jackson is all grins here...

The END

(aren't I funny!)

Check out US News and World Report Article

Scott and I opened up this week's issue of US News and World Report to find one of the feature articles to be about Hypoplastic Left Heart Syndrome. The stort is about a little girl who had her three surgeries done in Texas and they chose the Norwood Procedure as opposed to the route we chose for Duncan: the Hybrid Sequence. The end result (after all three surgeries) is still the same... below is a link that takes you to the photo gallery included in the article. The print itself is not included.

http://www.usnews.com/usnews/photography/ch_surgery/bigpicture.php?image=1

And for those of you who are interested in the anatomy of the heart... here is a diagram explaining what an HLHS patient's heart looks like when born and what the end result should be. Duncan's heart will operate like the picture on the right after his 2 year surgery. I continue to be amazed at what can be done as the field of medicine advances. Truly incredible.

http://health.usnews.com/usnews/health/best-hospitals/heart-diagram.htm

A Random Assortment of Pics

Ok... so we were a bit ambitious... Jackson's not quite ready
Duncan always has the motto, "Chin up"

The infamous patch... here is sporting the camouflage motif... there is also a sports theme and an astronaut theme

Our centerpiece for the coffee table: JACKSON! I can't get enough of that chair!

Daddy and Duncan

Bonding Moments: Daddy with Duncan and Mommy with Jackson

Just had to post these recent photos... although we attempt to make time spent with each boy balanced, it does seem that Daddy and Duncan have a special bond. Since Scott feeds Duncan (he's bottle-bound right now on that special formula) most of the time when he's home, he seems to have quite the connection with the little guy. Meanwhile, breastfed chunker Jackson and I do ALL of our feedings together...

Scott & Duncan

Jackson & Me

And in other news... I am heavily considering training for the Columbus half marathon. Scott and I have been discussing it, and I think it is a perfect way to motivate my little toosh to get out there and hit the road running. So, below is a picture of me after a recent run - sweaty as all get-out... Jackson doesn't mind that I'm dripping on him (and, yes, I did shower before feeding him!)

Also, while I am making my personal goals public (there seems to be a higher call of accountability when I set expectations for myself and make them known on this blog!), I think I am going to start composting. Scott has always called me, "granola," as if I would be found marching with signs to save the whales or embracing trees in front of bulldozers. And, although I have always had a love affair with nature and the environment (I used to argue with my mom about using styrafoam plates at outdoor cook-outs... and when she wouldn't budge I marched off with my own ceramic plate spouting off self-righteous comments such as, "well if you aren't going to save the world, at least I am going to do my part to!"), the hectic hustle bustle of life has prevented me from realistically doing my part recently. We recycle, of course, but who doesn't nowadays? Today marks a new day for the Arthur household... from this day forth, we are composters. Below are the beginnings of my compost. Thus far, it consists of one over-ripe zuchini, a few egg shells, and two brown bananas. I promise not to fill my blog entries with the contents of my compost, but I certainly will keep you updated with how it's going. Wish me luck!

It went well!

Ducan made it through with flying colors. He is staying overnight at the hospital and, if all goes well, will be joining us at home tomorrow. Thanks for all your thoughts and prayers.

Duncan's cath

Just in the past 24 hours a decision has been made for Duncan to undergo that catheterization procedure. A bit of history: Duncan has routine bi-monthly heart check ups between the first open heart surgery (at 11 days of age) and the second one (somewhere in the 6 month range). The past two check-ups (consisting of an echo and an EKG) have revealed restricted blood flow in the arch of his heart - which "fuels" the head, neck, and heart by delivering them oxygenated blood. The plan was to just keep an eye on it in hopes that he would stay stable enough until the next surgery.

However, his behavior seemed changed from Sunday until yesterday - not eating as well, increased fussiness, sweating a bit, and clammy hands and feet. It was enough to call in about, so we did. They squeezed in an appointment yesterday to do another echo and EKG, which revealed that the problem had worstened. His heart was beginning to be a bit under stress and the blood pressure difference between the top half of his body and the body half had increased. So - needless to say - they were glad we brought him in. They decided to admit him at that time. He stayed at Children's overnight, and he is currently in the cath lab (the family surgery waiting room has a computer with online access, which is what I am using). This is a 3 hour procedure involving a ballooning of that restricted area and a stint to keep it open.

The cath specialist, Dr. Cheatum, said this problem happens in less than 10% of the HLHS patients - yet another minority category Duncan falls into. But the risks are low and it does not affect the success of his next surgery, so it's just a little hurdle to get past. As you can imagine, we are just a little on edge at the prospect of going under anesthesia again, the fourth time in his barely 3 months of life.

Be in prayer if you get this before noon. I will be in touch about the results.

Boys' Photos of the Week and Trip to Lou

This past weekend I went to Louisville for more than one reason. Primarily, Dad, Justin, and I had a trip planned to Barron River, where Mom wanted half of her ashes spread. Secondly, Scott was out of town and I needed some family support to get through the weekend with the boys.
It was a truly sacred weekend. Saturday was just a perfect day - we had a nice road trip to and from the river in Dad's new Subaru. We had some really nice conversations about our favorite things about Mom, and what we miss most about her. There aren't a whole lot of moments I get to spend with Dad and Justin alone, so it was a great opportunity to do so. We also had some really nice moments of closure when we laid Mom to rest on the lake.
Meanwhile, Duncan and Jackson were bonding with their Great Aunt Lisa, Great Uncle Brad and second cousins Drew and Jessica. GGmom and GGdad popped over to their house as well to aid in the babysitting. It was so wonderful to knew they were being well loved and cared for. The boys were troopers, on their best behavior for their babysitters.

Also, I was able to help Dad sort through some of Mom's things at the condo. He is truly doing such a wonderful job taking care of himself and his condo. I am very proud of him! Losing someone like Mom meant for him losing not only a life companion but also a "manager" of the home. Dad has had to deal with the grief process concurrently with the learning process of taking care of all the "stuff" of the home.

My time in Louisville was yet another stage in my own grief process as well. The spreading of Mom's ashes, clearly, was an important time. But the weekend was also one of many more "firsts" to come... the first visit "home" without a mom to welcome me. It will get easier, I feel certain. But I am still feeling the hardhitting reality of what her absence means in Louisvillle even after being back home for a few days. Living out of town and having these miraculous boys to consume my thoughts sometimes hides the reality of my changed life without Mom. Louisville's trip brought it up close and personal.

On a lighter note, I learned that I NEVER want to be a single mom permanently. The responsibility is amazing. "Tipsy" the Town and Country was packed with everything but the kitchen sink for the weekend. And carting those guys around by myself (P.S. - they were AMAZING travelers on thr 3 hours road trip there and back!) made me increasingly thankful that I have a husband as supportive and helpful as I do. So, when you cross paths with a Mom who doesn't have the good fortune of having another set of hands for relief, give her a hug!!


And now for the photo of the week for each boy:

Jackson in his "big boy" chair... the fun orthopedically -ecommended "bumbee." It props him up in a sit-up position, even though he is nowhere close to sitting up by himself. As a result, he looks like SUCH a big boy sitting there, doesn't he? And that sweet little grin seems to communicate, "I got this down! What else ya want me to do?"

Duncan exercising on his tummy. He even has a little grin going too. Look at those defining eyebrows! They are clear reminders that these boys are 50% (or more) Scott Gibson Arthur! His right eye currently has a contact lens in it, which is undetectable unless you were to get up close. What may be noticable in this picture is dilation in that eye as a result of eye drops we have to give him 4 times a day.

FROM LOUISVILLE:

Cousins Drew and Jessica had a blast with the boys. Here's Duncan looking peaceful

And Jackson in Aunt Lisa's arms... notice the CROKS! (thanks Beth and Danny!)

Dad took Justin and I out to a VERY nice restaurant Saturday night to seal that day in our memories. It's the nicest restaurant in Louisville, according to Justin, who is quite familiar with the restaurant business. The boys, yet again, cooperated beautifully!

They keep changing

Duncan enjoying bath time with Dad
Look at the sparkle in that eye! (Duncan!)

Below photos:

Jackson's priceless grin in his "Beach Boy" outfit

Bella and Ruth enjoying the boys

Our first morning going to church with our guys: adorable in their jean overalls

Sucking away on their pacifiers

Jackson in his baseball cap

Beach Memories

When the Hills (my aunt, uncle and cousin) came into town from Florida for Mom's funeral, they brought with them some sand and neat beach themed ornamental pieces which were created into a beach scene for the visitation. It was featured with Mom's pictures for people to enjoy. Since one of Mom's FAVORITE hang-outs was the Sarasota beach, it certainly made her presence feel more real.
After that week in Louisville was over, I decided that I wanted the same presence to be felt in my house full-time. So, Aunt Jo came up with the idea of using a shadow box to contain everything. When she was here, she worked dilgently on it. On the last day of her stay, it was finally complete - prepared to be hung. It went on the wall and we all ooohhed and ahhhed over it for about 35 minutes, at which time it came crashing down. Sand EVERYwhere, broken glass EVERYwhere - it about killed me after all the time she put into it!
So, I made it my goal this week to recreate Aunt Jo's gift to me!!! Here it is! Didn't she do a fantastic job? I am so thrilled to have a little slice of Mom's heaven in my home. Every time I look at it, I am reminded of her.

Recent Weights

I forgot to give the most recent weights of both boys: On Wednesday, Duncan was 7 lbs 4 ounces and Jackson was 9 lbs 11 ounces. They are still about 2 1/2 lbs apart - both are growing steadily!

We just had our buddy Phil V. in from Los Angeles for the nights. It was so wonderful visiting with him. Scott and he became very close during his time in Cleveland, when Phil was going through his MD/ PHD program at Case Western. Now he is in residency in CA. Phil has been a huge resource for sound advice during our learning curve with Duncan's heart. He is specializing now in pediatric cardiology - what a gift!

From the Top: Clothesless Jackson and "Patch" Duncan

Duncan in a state of total sleeping bliss

A multitasker's dream: 2 babies and a lap top (notice Jackson is nude again - i promise i DO dress him!)

Look at those cool name plates! Aunt Jo and Uncle Darrell owned this project! THANKS GUYS!

Home again home again

Well, we're slowly but surely getting the routine down at home. There is quite a lot to remember, meds wise, but it will become more natural in the days/weeks ahead. The toughest part if getting little ole Duncan's eyes open wide enough for the drops. He's starting to out-smart us and seems to know when one is coming, clamping up so it's difficult to squeeze them in there. We're learning the tricks, though.

The newest news troubling BOTH our boys is a terrible bout of constipation. Poor guys. There are times I think their eyes are going to pop right out of their heads, they are pushing so hard! We're trying to feed them water from time to time to curb that problem.

Next challenge: Getting them to sleep overnight! (yeah right)

Another successful surgery down!

The surgery today went well! Duncan's cataract is now removed. He is staying overnight in the cardiac ICU for monitoring purposes only. But he looks great! We have a doctor's appointment tomorrow where we will be trained on all the eye drops. Then, in one week Duncan will receive his contact lense and the patching of his good eye will begin.

He had SUCH a sweet spirit today - despite not being able to receive any feeds from 5:00am on. We expected a cranky, crying baby all day until the surgery. Instead, although clearly hungry, he hung in there like a trooper. He really has such a cooperative disposition. I guess we've left him no choice with all the unpleasantries he's been dealt! He is our warrior!

Duncan being wheeled away for his surgery... note the HUGE bed for such a little guy!

Tomorrow and Beyond

This evening Scott and I are going it alone! Aunt Jo and Stacia flew home (Florida) yesterday and GGmom (great grandmom), GGdad (great grandad), and Justin's weekend visit ended this afternoon. Tonight is the first time in awhile we have cared for both boys alone. The house feels a bit empty. Thanks for everyone's help. Aunt Jo was the originator, participator, and monitor of many projects in and around the house. She and Stacia, her assistant, were probably ready for a vacation themselves!

Tomorrow is Duncan's eye surgery. As I started to explain before, he will be under anesthesia for about 1 1/2 hours during the procedure, which removes the lense with the cataract (in his right eye). Infants with cataracts do not receive replacement false lenses right away (as adults could). In its stead, Duncan will need to wear a contact lense until that happens (the surgery which installs the false lense occurs generally between 8 and 12 years of age). This contact lense, thankfully, only needs changes every 2 months initially, until he is able to cooperate with a contact lense that gets changed daily. He will need to wear bifocal glasses at around 2 or 3 years of age, which allows him to switch his vision from up close to distant. Starting tomorrow, he will need to begin the practice of "patching" - placing a patch over his left "good" eye in order to train the right "bad" eye to compensate. Duncan needs to wear his patch approximately half of his wake hours. We believe we heard correctly that this needs to happen until the implant lens surgery at 8 - 12 years of age. We will also need to administer special eye drops 4 times a day and different drops before and after his naps. (Disclaimer: All of this was communicated to us by the opthimologist we just met Thursday and the conversation was a total of maybe 15 minutes long, so we could have gotten some details wrong, but this is the gist of it!)

Needless to say, we are a little worn out. Clearly, Duncan's eye troubles are not nearly as life threatening as his heart problem has potential to be. However, it does feel to us that it is more life altering in the day to day - in addition to his heart meds, we will be dropping the heck out of his eye and worrying with the patch. We have our moments of "Are we strong enough to handle all of this?" But, at the end of the day, (or, as the case may be, at the end of each gripe-fest we may have with each other!) Scott and I know that indeed - with God's strength - we WILL handle all of Duncan's health concerns with grace and be better for it.

On a side note, who knew cataracts could even happen in babies?

Be with us in prayer tomorrow. Every time they put our little Duncan under, we are naturally anxious.

Enjoy below shots of the fam... For some reason we have more good ones of Jackson (perhaps because all of the type is dedicated to Duncan - Jackson wants his chance to shine!). More to come of Duncan.





GGmom with Jackson
GGdad with Duncan
Jackson in his swing
Gotta love this "old man" outfit... thanks Emily and Jason!
Jackson is already learning the are of the french kiss (actually, he was rooting around and thought my lips might provide milk! HEE! HEE!)

Cataract

Last night Scott noticed a little cloudiness in Duncan's right pupil. We weren't sure if it was a passing thing, or if it was something to be concerned about. We called our good friend and opthimology student, Liz, to ask. She encouraged us to get it checked out sooner than later. Our pediatrician was of the same thought - so we made an appointment for this afternoon at Children's. Turns out, Duncan has a cataract on his right eye lense. He has surgery scheduled for Monday at 3:30pm to remove it. I will explain more in the next entry about what type of extra care this will require. For now, we're pooped and going to bed!

Some pics from this week:

Nancy loves loving babies - and thankfully our boys get to be included in that love. Thanks, Nancy for all your help! Sir Jackson at 2 months
Sir Duncan at 2 months
Aunt Jo lovin on her little man, Duncan
The twins hangin loose