....and the results are in...

Sullivan had his upper GI today. The results are in. They came back normal. We are so glad to have some answers. We spent a long time with the speech therapy team at the hospital and after much consultation, they explained that Sully has a very "disorganized eating pattern". Basically, this means that when most babies naturally "suck (then) swallow (then) breathe", Sullivan is instead "suck (then) suck some more (then) suck some more (then) breathe (then) suck some more (then) swallow...etc.".

They also noticed that he has some sensory issues, meaning that when he gets over stimulated (aka when mommy watches Dr. Oz, talks on the phone, has Pandora radio streaming, and feeds him) he tends to get stressed and this causes more "chaos" in his eating. Who knew that the basic task of eating (which I know I definitely take for granted) can be so complicated to a little baby?

Oh, and he also has reflux, but it is a minor part in all of this.

So, the verdict is that we will go to speech theray (for those of you who are as confused as I was....speech therapists also work with eating and swallowing therapies...who knew?) twice a week and we will continue to be very patient and diligent at home to help him re-learn how to eat.

I did not mention, but feel that it is a huge piece of this, is that we continue to have lots of people praying for our little man. Thank you so much. Thanks for praying for answers (which we got) and for the right people to intervene in our lives that will/have helped us so much (pediatrician, nurses, therapists, friends, and family!!!!).

Here are a few pictures from today:

waiting.....

Sportin' a cute (and tiny) medical gown getting ready to have his upper GI (which by the way was really cool! We got to see exactly how the fluids (barium) flow down his little body.)

trial and error.

So, I have learned a lot in the past few months that I didn't know before. I have learned that so much of parenting is trial and error. It probably sounds bad, but since there isn't an exact science behind what to do and when....much of what parents (we) do is based off of what we tried and what has or has not worked. So, I am trying to be patient when I realize this, but sometimes it would be nice to just have "an answer".

The answer that I (we) are seeking right now is for Sullivan. He is still not eating well. I had been saying it was a "breathing" thing but now we are thinking (another trial) that maybe it is severe reflux. (Thank you, Brenda, for spending time with us the other night) His pediatrician is WONDERFUL and he has prescribed prevaset (spelling?) but the little guy still does not eat very much. To give you a refernce point, Cam eats 4 or 5 ounces at each meal time and Sullivan struggles to get 2 down. He never really seems super hungry, and is pretty much "done" at one ounce.

So, in search for some more answers, since our CTscan came back "normal", we are having an upper GI (barium swallow) done on him hopefully tomorrow. Our friends, the Olivers are in a very similar situation. (their little girl Presley is still in the NICU and if you could pray for her that would be much appreciated! I know they would love to have their entire family home soon!)

So, for those of you who skim through the text (like I often do when I "read" (aka look at pictures) on blogs), here are the cliff notes:

• Sullivan needs you to pray for him! He needs to be able to breath and eat without discomfort.
• Sullivan needs you to pray for him! He needs to (continue to) gain weight.
• We need your prayers. Please pray that we can continue to find patience in the midst of trials (hopefully not errors, but I know there will be some).

And now....the pictures from the past few days. (beware...they are super cute!)

(look at those grins! They are such happy and content boys!)
("Grandma...can you please stop dressing me up with all of my new clothes and please get my milk!"-Cam)

(We got these paci's (with a stuffed animal attached) in hopes that it would help keep the Paci in instead of falling out of their mouths. Ha...the other one is a monkey...pretty funny!)

I had to share this one. This is what I woke up to the other day. Chris made me one of his famous smoothies with a note attached. What a great way to wake up. Thanks, Chris! That was very thoughtful of you!

7.

Seven has a whole new meaning. It is the number of hours that Cam can now sleep at night in a row. WooHoo! He has done this twice now and it is just amazing! We feed him around midnight and then he gets up for his breakfast at 7am. Sullivan still needs nightime feedings, but they (so far) have been relatively quick and easy and therefor more enjoyable.

Speaking of Sullivan, we still have not heard the results from his CTscan but are patiently (or trying) waiting. He is still gaining weight (slowly) so we will just have to wait to see what the doctors say.

Here are some pictures from the past few days.


Cousin Reece stops over to visit. She can't really be too close to the boys yet (they aren't allowed to be near kids per doctors orders) but we laid her down to sneak a quick photo. Thank you, Erica, for the cute outfits for the boys. And thanks, Tiffany, for stopping over to visit. What a nice morning!
Chris sneaks in a nap with Sullivan. Wait....it doesn't quite look like Sullivan is napping?!?

Aaahhh...so cute! (The boys are still in Newborn size diapers, but I think that Cam will soon be retiring from those and movin' up in the world...)

Sullivan "chills out" in his swing. (I think he is getting some "cheeks". Way to go, buddy!)

We are back!

Sorry about that! I think my last post said I would post pictures soon....well, sooner turned into later! We have had a lot going on here at the Butler house. We had a great GREAT visit from family! It was so fun introducing the boys to their aunt and uncle. (thank you so much for visiting Uncle John and Aunt Sue)

The boys are doing great! They 15 weeks old. Camden weighed 8 lbs 9 oz a few days ago.... and Sullivan weighed 7 lbs and 3 oz just yesterday. They have each (are you ready for this) rolled over; Sullivan rolled from his back to his belly and Cam rolled from his belly to his back (I know...I would not have believed it unless I saw it with my own eyes).

We had a little battle with reflux, but I think we are getting better (you would not guess it though from the 4 loads of laundry I wash daily with just baby "stuff"). Cam has recieved the "all clear" from ROP (remember...the eye stuff), and Sullivan has not been cleared yet, but his eyes are improving greatly. We are so thankful for that!

Tomorrow is actually a big day-we are taking Sullivan in for a CTScan. He still struggles to breath becuase his nasal passageway is so tiny. So, we are going to rule out any other problem. Gosh..it just breaks your heart to see such a sweet baby struggle.

Alright, some photos from the past few days.

Aunt Sue feeding Sullivan.

Hmn...they travel all the way here and we put them to work!

Look how big Cam is getting.

Uncle John and Cam were having a little heart to heart.

Uncle John feeding Sullivan.

Sullivan....our big 7 pounder!

Sullivan hanging out in the same bassinet that I used to sleep in.

What a pro! Miss you already, Aunt Sue!

So, my dad brought me a bunch of pictures of the boys and I had to include this one. It seems like forever ago...well, wait, maybe it just seems like yesterday. This (I think) is our first family photo. I had to include it. (Plus, I am watching the NICU special on Discovery Health and it is making me a little emotional...why am I watching this?)

August 16.

I don't really have a clever title today. I could have called this post many things. Hmn...some titles that were in the running were:

"aah, reflux...we could have lived without meeting you"
"Camden gets a little boy surgery and does great"
"laundry, laundry, laundry"
"100 degrees in Texas"

But, instead, I just settled for the date.

Look at how we spent our Friday evening. Thank you, guys, for being so wonderful. I am sure that so many other wives wished their husbands would take the babies for a while.



















So, after getting great advice from my friend, Erin, I now prepare all 16 bottles at one time for the day (yep, that is 8 per baby). Here is the finished product.
















And before the finished product comes the bottle washing. I love Dr. Browns, but boy are there lots of little parts.















(I know that some of you scrolled down to just find some baby pictures. Sorry to disappoint you. I will post some tonight.)

Happy 3 Months!!!!!

3 months have gone by so fast.
Our little "at home photo session"....

Sullivan 3 months.
6 lbs 3 oz.















Camden 3 months.
7 lbs 13.5 oz.















Brothers.

Cool Cam.

As Sullivan sweetly sleeps, Cam and I enjoy some mother/son time. Thank you, Cole (wink wink, Molly!), for our new hats!

We had (yet another) doctor appointment today. I think it is important to share our updates so our friends/family can continue to rejoice in how healthy the boys are, and keep praying for continued health.....so, thanks for reading.

Sullivan weighs 5 lbs 15.6 oz (so close buddy!)

Cam weights 7 lbs 7 oz.

Sullivan needs continued prayer for his breathing. We believe he is improving, but it is still a struggle for him. His breathing continues to be more labored than it "should" be, and the doctors assure us that as he continues to grow this will enlarge his airways and his breathing will become easier. He seems to be eating a little better, but the "suck/swallow/breath" notion is a little tough for this little guy.

Additionally, his eyes are not completely done growing. He is considered to have "mild to moderate ROP". If this goes untreated, it could lead to bad things (retinal detachment). Our prayer is that not only does it not need to be treated, but that when we go back next week, he will have moved from a stage 1-2 to a stage 0....no treatment needed!