Thanks for all your prayers! Aiden’s infection eventually went away and we were approved to fly him back in late July for the laryngeal cleft repair.

We expect Aiden and Hannah to come back home this coming Tuesday (June 2nd). It has been about 6 weeks since they left and both are very anxious to get back. Aiden is still vomiting so at this point, it is difficult to tell what (if any) impact the malrotation had. Even so, we are glad it is finished and over with and now we can focus on his next procedure in July.

“E and E” are starting to develop a vocabulary that goes beyond “cars, keys and door.” Although that is still their favorite subject. They are trying to string words together to convey what they want and will probably be “talking” in a few weeks. Whenever Evan gets a hold of the phone, he says “mommy…mommy…mommy” as each night, we call Hannah and the boys talk to her. Ethan has learned self-defense. Historically, Evan has been a bully and took whatever toys he wants whenever he felt like. But lately, Ethan has fought back with his mouth (as evidenced by the many bite marks he has left behind on Evan’s arms, hand and even face)! So, Evan has learned to be more respectful of Ethan and his razor sharp teeth.

Below are some recent pics of the twins and one of Aiden (webcam).

Should you boys be up there?

Evan, that looks like your “naughty” smile

Ethan, you too!

The wet-wipe container makes a lovely head covering

The little bear is so full of life

Ethan, that looks dangerous

That hat looks good on you

Hi to you too

Evan found some food in his hand

How did you get up there?

And you too?

The twins are hanging out

This looks like trouble

Grandma’s favorite “things”

Thing #1

Thing #2

Snack time at McDonalds

Ice cream is a favorite

Grandpa loves feeding his babies

…and is doing double duty this afternoon

Evan loves his fries

Devouring

Ethan likes them but not as much

Grandma is going to put some sauce on your fries

Wow, Evan you are dipping your fries all by yourself!

Ethan, one french fry at a time!

Web-camming with Hannah and Aiden (his hair has grown so much)

Hannah and Aiden have now been in Boston for over five weeks.  The separation has been difficult for everyone.  Aiden wakes up asking for his Daddy and brothers in the mornings, and Ethan and Evan go around the house trying to figure out where Mommy and Aiden have gone.  Evan will lay his head down on the floor outside the door to our room and try to see through the crack under the door and call “Mommie?  Mommie?”  The Child Life Specialist at Children’s Hospital was able to find a laptop for Hannah to borrow for a couple of days, so that Aiden could see pictures of Daddy and his brothers.  He was so excited to see them, he started clapping!  We will all be so glad to be together again, hopefully soon.

Speaking of Aiden…as you know, he underwent a major surgery a week ago to repair the intestinal malrotation, remove his appendix, remove a urachal remnant,  and insert a surgical j-tube.   The surgery went very smoothly and only took approximately 5 hours, thankfully much less time than initially estimated, and therefore less time that Aiden had to be under anesthesia.   

After spending several nights in the ICU to get his respiratory and pain issues under control, we were all (including his doctors) pleasantly surprised by how well he seemed to be recovering and we were making great progress getting him up to his baseline on j-tube feedings.  He had some low-grade fevers following the surgery (to be expected), and on Tuesday, developed a small area of inflammation or (we thought) perhaps a little bit of infected fluid drainage behind the incision, but it seemed to respond to antibiotics and appeared to be improving.

We were making preparations to be discharged from the hospital on Saturday (today); however, yesterday (Friday), Aiden just didn’t seem to feel good.  Even after adjusting his pain meds, he didn’t want to move or be touched.  His heart rate was up and he seemed to be working hard to breathe.  By Friday afternoon, his fever returned with a vengeance.  Within 30 minutes of the Tylenol wearing off, it had shot up to 101.5 and Aiden’s whole body was burning up.  The incision area all around the surgical j-tube had become swollen and inflamed, and was very tender.  The doctors ordered a number of tests and also changed the antibiotics, as he was obviously not responding to the one that he had been taking.  Fortunately, although he still has the fever and infection, he seems to be doing better today, and we are all keeping a close eye on the infected area.  Please, please pray with us that Aiden will respond to this new antibiotic and that it will completely wipe out the infection.

We are all hopeful that the intestinal repair will help to solve the motility issues and relieve the pain that Aiden has been experiencing.   As for the longer term plan: after extensive discussions with our doctors here at Boston Children’s, we now have a basic timeline for the near future.  Hannah and Aiden will have to remain in Boston for at least another week, until the beginning of June, for follow-up appointments with the aero-digestive doctors and the surgeon.  The doctors believe that it is best to wait at least two months (eight weeks) before attempting to repair the laryngeal cleft.  In the meantime, we are hopeful that they will be able to return home for the next seven weeks or so and spend some time together as a family while Aiden recovers.  This is largely dependent upon the insurance company, so please pray that everything works out.

And last but certainly not least…on this Memorial Day weekend, we want to remember and express our whole-hearted gratitude to those who have sacrificed so much and given their lives to preserve our freedoms and liberties, so that we can continue to live in this great country.   May we do our part to honor their memories and keep this nation free, and may God continue to bless America, land of the free and home of the brave.

+++++++++++++++++++++++++
Aiden, Aiden, Aiden

Aiden you are the bravest of three,
Strong and humble we can see.
Your smiling eyes look around,
With determination and faith abound.

A mystery bug got in your belly,
Makes you sick and diapers smelly!
We pray each day that doctors will find,
A cause and a cure for peace of mind.

A silent observer you are in the bed,
Taking in and digesting the words said.
God watches over you every day,
He loves you in a very special way.

We all know you will pull through,
Brave and strong like you always do.
(Written by Tanya A.)
+++++++++++++++++++++++++

The surgery took place this past Friday afternoon and the malrotation was corrected. Additionally, the surgeon removed Aiden’s appendix. He felt this would be the best thing to do just in case future complications arose from the surgery then appendicitis could be ruled out. Aiden is recovering and though he is in pain, he is doing quite well. Thanks so much for all your prayers!

The next step will be to determine when to fix the laryngeal cleft. This will depend on how quickly they think he can recover given that he will have to be intubated again. We should know more sometime next week. In the meantime, please continue to keep him in your prayers.

The twins are very happy and loving life! Nothing makes them happier than going for a ride in the car. Every other word out of their mouths is “car”, “keys”, or “car keys.” Manish did survive the weekend alone with the twins (although, Sunday was quite brutal). Thanks to Edith, Cyndi and Carolina for all their help! Without them, he may not have made it 🙂

God Bless

Not Aiden, but Manish! With Grandma gone until Wednesday, he has the twins all by himself. It will be quite a battle and we can only hope that he will survive. He has recruited people during the times he calls “key battle zones” such as early morning diapers (terribly dangerous) and dinner (which can be quite a struggle).

Aiden’s instestinal surgery is scheduled for May 15th. Hannah and Aiden have been staying at a hotel for the last week. Given all the hassle we had getting the insurance company to fly him to Boston, we decided to stay in Boston rather than try and go back for the surgery. Please keep Aiden in your prayers and that the doctors can correct whatever is wrong.

Below are some pictures and video of the twins. Despite Hannah being gone, they are doing very well!

Caged

Trying to “uncage”

Evan, love the PJs

Apparently so does he

Keep them on!

He doesn’t want to hear that

Going opposite ways?

Ethan is so happy these days!

Evan, what exactly is that?

What do you see, Ethan?

Must be birds?

Ethan, that looks dangerous

I guess you accomplished what you wanted

Now what?

Evan’s newest thing: taking out whatever is in between his toes and giving it to me

Stomp, stomp, stomp…

Twins

Evan, where did you get all those stickers from?

Ethan, you too?

No thanks, I don’t want any

Over the past few days, Aiden has undergone several tests, etc. at Children’s Hospital in Boston. One of the radiologists noticed that the intestines appeared to be malrotated. This twisting of the intestines is caused by abnormal development and can cause obstruction. Malrotation occurs in 1 out of every 500 births in the United States. It was about a year ago that a radiologist in Dallas mentioned the same thing and after following up with G.I., they decided it was a non-issue.

This afternoon, they removed his feeding tube to try and determine if there were any intestinal abnormalities. By using fluoroscopy (an imaging technique to obtain real-time moving images of the internal structures through the use of a fluoroscope), they confirmed that there is an abnormality. We view this as good news in the sense that there is finally confirmation that there is an internal issue. We are consulting with the physicians to determine the next steps. Most likely, Aiden will undergo a surgical procedure to correct these intestinal issues.

Additionally, the ENT Doctor agreed to perform the laryngeal cleft surgery after the intestinal/G.I. issues are corrected. While the cleft is not the sole cause of the problem, it could be a contributor and correcting it will rule it out as part of the problem.

In the meantime, the twins are living like princes. With mommy not around, they stay up late with daddy eating junk food and watching TV. NOT! Actually, Dad is much more strict with the twins and they have a very structured bedtime and eating schedule. But, they are living it up! They have enjoyed Grandma’s company very much and are enjoying the ourdoors more and more as the weather heats up. Below are some pictures of their daily adventures.

Evan has learned how to barter. If Ethan has something that he wants, he finds something to give him in exchange for what Ethan has. The other day, Ethan had a little toy owl and Evan brought a little toy guitar, laid it at Ethan’s feet and then took the owl and ran off. Ethan did not approve of the trade. These boys are just too much fun!

So much going on! Please keep us all (especially Aiden) in your prayers.

Ethan loves his little bunny

And his guitar…

Yes, there were ducks in our pool and the boys loved it!

Such a little monkey (or is it porcupine)

Evan, you want to play?

Is that a wave hello or good-bye?

Daddy and Evan

Daddy and Ethan

The boys also loved watching people mow the lawn

So curious

And also a little tired

Evan, what are you doing?

There he goes

A little bear amidst the roses

Ethan, stay away from the road!

They love hitting the bushes

And playing in the little fountain

Classic twins

Ethan fell down and got a cut…he did not even cry

Meanwhile, Evan checked out the cars in the street

Looking for the next car to check out

Ethan is back and making a run for it