postscript!

Several of you have made suggestions and asked "have you tried this...?" in relation to the persistant vomiting and retching that Aiden continues to experience. We truly appreciate any and all ideas and suggestions, so if you have any thoughts, please let us know! Briefly, in addition to the many tests and procedures that were mentioned in previous posts, here are some more of the things that we have tried:
- Zofran (anti-nausea med used primarily for cancer patients)
- Bethanacol, Erythromycin and Reglan (motility agents)
- Cyproheptadine (rule out cyclical vomiting syndrome)
- Switching from breast milk to hypo-allergenic, amino-acid based formula (rule out milk or protein allergies)
- Thickening the milk
- Drugs for reflux (i.e., Prevacid, Prilosec, Zantac, etc.)
- Different timing and types of feedings, to see if there is any connection (from continuous to very slow to bolus feeds over a smaller period of time)
- He had been on several diuretics to prevent him from retaining fluids due to his lung issues, and we stopped those since they had possible side effects of nausea and vomiting. It did not impact the vomiting, but his fluid output actually increased -- how strange!

There is more...I can't remember everything off the top of my head
;-) ... but those are just a few of the things that we have looked at. Some of the doctors have told us that if he just gains a pound or two, it should go away; however, he has gained almost 5 pounds and grown many inches since this started and there has been no change.

To answer a few more questions:

There is no discernable pattern /connection to when or how Aiden throws up, and some days are "good" days, where he may do a lot of deep retching, but will only throw up a couple times. Other days are not so good and he may throw up multiple times starting from the minute he wakes up in the morning and retch and gag every few minutes...we simply never know.

During one of Aiden's previous hospital stays, when they performed most of the other tests, they did perform testing for metabolic disorders/vitamin deficiencies at our request (organic acids testing). The results came back normal.

The doctors that we have seen are puzzled and not certain what else to do. They say that he should not be throwing up with the ND tube (feeding into his small intestines) since it is bypassing the stomach, but he continues to constantly retch and throw up.

Please Pray Today...

On Friday afternoon, we heard back from the folks at the Boston Children's Center for Aero-Digestive Disorders (CADD). They have been so kind and very responsive. They said that they would be unable to provide us with a second opinion on the laryngeal cleft issue based solely on the images that were taken during the laryngoscopy/rigid bronchoscopy. The only way they can verify whether or not Aiden may have a laryngeal cleft would be for the doctor who is the director of CADD to perform the procedure and actually touch and probe the larynx for himself. Given the situation, we expressed our concerns about taking Aiden to Boston solely to re-perform the same tests that have already been performed and no hope of any answers. We do not want to take him all the way and put him through these invasive tests again just for the sake of going somewhere else -- but by the same token, if they can do anything at all to help him, we will go wherever we need to go. This also is a major prayer request as the past 8 mos. have also been hard on Ethan and Evan, and we would need to find someone to care for them during that period if we were to take Aiden to Boston for testing.

They understood our concerns, and when we spoke with them again yesterday afternoon, said that they will be presenting Aiden's case at two different meetings today to see if there is anything else that they can do or suggest that we should explore. They will present it when the group of inter-disciplinary CADD physicians (GI, pulmonology, radiology, ENT, etc.) meet this morning and will also present it at their CADD conference later this afternoon, which is open to all physicians at the hospital and has a much wider attendance. Right now, this is our only remaining option. We do not know where else to turn or what else we should look at. Please pray that God will send the right doctors to these meetings and that if He wills, something will come out of this to help Aiden, and that He will give us clear direction and wisdom as to what we should do.

Dadaadaadaa...dada

It appears that all three boys have finally said their first word: "dada." Evan started the popular trend, Ethan followed and then Aiden chimed in also. "Dada" may be their first words but they are saving the best for last.

We have been trying for quite some time to have the Baby Dedication...in fact, each time Aiden has come home, we would think "OK, we'll finally get to do it this Sunday," and then of course, Aiden would end up back in the hospital or something else would happen and we would not be able to. It's hard to believe that the boys are nearly 9 mos. old and this is the very first time we have been able to take them to church -- or anywhere -- all together! Of course, we had dedicated them to the Lord long before they were born, but we wanted to do so publicly as well. So finally, we were all home on a Sunday and although the boys were still feeling a little 'under the weather,' we don't know what tomorrow holds and wanted to have the dedication while we could.

This brief ceremony of dedication had very special meaning for us and was very sentimental -- after everything that Aiden has been through, we have been reminded so many times that our chilren truly belong to God; He has just loaned them to us for a time that only he knows, and entrusted us to raise them for Him in the time that we have. We are so thankful for all of you and your continued prayers and support. It would not have been humanly possible for us to make it to this point without so many friends faithfully upholding us in prayer on a regular basis. Special thanks to good friends Edith Goss and Mary Ann and JR Pettit for all of their help with logistics of the dedication; we couldn't have done it without you!

Please continue to pray for Aiden: he has picked up whatever Ethan and Evan had, and has been coughing non-stop. Of course, every time he coughs, he retches and throws up...so it has been very, very hard on him. This has caused him increased difficulty breathing and he is up on his oxygen. He also has developed some congestion in his chest which we hope will not go into his lungs. We have been doing breathing treatments every three hours around the clock and are praying that he will not end up back in the hospital.

It's been a while since we posted pictures and even longer since posting a video. In the one below, you can clearly see and hear the boys saying "dada" over and over. They really are daddy's boys!

Aiden is little Mr. GQ

His first visit to church, and Ethan is already sound asleep

Evan says "I'm hungry, so let's get this over with"

The babies were finally dedicated on Sunday (May 17th)

Since we were all dressed up, we attempted a family picture

Ethan and Evan go after one of their favorite toy - "buzz bee"

Learn how to share, boys!

Aiden is sound asleep (we have to put little arm braces [baby handcuffs] when he sleeps to prevent him from pulling out his feeding tube when he wakes up in the middle of the night).

Ethan is ready to go places in his little 'car'

Aiden is so happy!

He loves smiling for the camera

Aiden, what is it that you need?

Time to eat...this looks like trouble!

Here he is again...and smiling

Evan loves to play ball

The twins are learning to play together

Evan is so charming!

Hi Evan!

Ethan has started trying to pull himself up and stand on everything

Hmmm...what are they thinking?

Ethan, what's wrong?

Now Evan is upset

Aerial view of the triplets

All three again

Ethan has learned to stand up in his crib and was climbing on the bumpers, so we had to lower the mattress -- already!!

Evan loves his first teething biscuit

Ethans enjoys it too

Aiden says "bye bye" till next time