Aiden continues to slowly progress. His oxygen was down to 1/2 liter this morning and he is alert, active and even took 10 ml of milk from the bottle. However, as they started weaning him off his medicines, there are now signs of withdrawals. They changed medicines on Tuesday and stopped giving him Methadone. This evening, he was very agitated and breathing much heavier to the point where his oxygen had to bumped back up to 1 liter. This is not uncommon as withdrawal can cause all sorts of short-term issues. Hopefully, these issues are strictly withdrawal related and this phase will soon be over.

Ethan and Evan are doing very well. They are starting to eat solid foods (see pics and video below) and loving it — especially Evan. Ethan seems to think that he is in charge and we have dubbed him “the Prince.” Whenever he wants something, he squalors for it and expects immediate results. It is very amusing (of course, in a few years it won’t be). Evan lives to eat and as long as nothing gets in the way of his food, he is quite happy. They have both gained weight and Ethan is near 14 lbs. and Evan is close to 16 lbs while Aiden is just over 10 lbs.

Please continue to pray for Aiden and that he would learn to eat again, get down on his oxygen and the withdrawals would go away. Thanks!

What is Evan up to?

Got Milk?

Ethan blows me a kiss

Aiden’s eyelashes seem to have grown

Reading at such a young age

Evan loves solid food!

So does the prince!

Face-off

Hey, I saw it first!

Aiden is all smiles

Upclose shot of the Little Charmer

Aiden taking care of some business

Evan loves his ‘slugger’ outfit

Some matching socks

Ethan is wearing his favorite outfit (Manish calls him “Mr. Peabody” when he wears it)

“Prince Pea” in his royal chair

Evan getting ready to go for a walk

Ethan is not too sure he wants to go for a walk

A snow storm in Texas (yesterday, it was so warm the boys went for a walk)

Look who wants to play in the snow!

This past Sunday, Aiden was successfully extubated. His breathing support is currently a high-flow nasal canula (which is short prongs through the nose). He is currently at a 2-liter flow and the goal is to wean him down to what he was when he came to the hospital; which would be 1/16th. He has gained weight and is currently a little over 9 lbs. Additionally, he is alert, comfortable and looks much better than he has in a long time.

They moved him out of ICU yesterday evening into the General Ward. Unfortunately, the level of care and service is quite poor as the facilities are older and the quality of care is much less when compared to the ICU. The General Ward is what we refer to as “Hades, with fluorescent lighting.” Hannah and I are doing 12 hour shifts at the hospital to make sure he gets the care he needs. Unlike the ICU, we have little to no confidence that he would be cared for properly so one of us has to be there all the time. The other concern is that he has forgotten how to eat. In fact, he does not even suck on his pacifier like he used to. This will lengthen and complicate his stay as it will take some time for him learn how to suck, swallow and eat.

We are so glad that he is doing well enough to where he does not need to be in critical care but being at the hospital 24/7 is very difficult. Please pray that his oxygen needs can be weaned quickly and that he would start eating. Thanks for all your support and prayers during this difficult time.

Thank you all for your continued prayers for Aiden. He is still in critical condition and will be for some time to come, but is much more stable than he was previously. He has made some progress as they continue trying to wean him from the ventilator in very small increments, and seems to be tolerating the changes better. He is still on fairly heavy sedation meds, and they were concerned that he was becoming too reliant on the ventilator, so it is a relief to finally see that he seems to be more tolerant of changes this week.

The goal is to move him to a different, less invasive type of ventilation system sometime next week. If they are unable to wean him from the ventilator, they will have to re-intubate him with a different ET tube (the ventilator tube that goes down the back of his throat into his lungs) due to some issues with the current ET tube. This is something that everyone wants to avoid if at all possible, as it opens the door for additional complications such as another pneumothorax, etc.

On Wednesday afternoon, Aiden had a CT scan to look at the C-CAM or growth on his left lung. Unfortunately, the results were not conclusive. They do see some cysts and abnormalities in the lower left lung, but are puzzled because they do not present in a typical manner as a discernable mass. The scans will be sent to a Pulmonary Radiologist in another hospital to get a second opinion.

Ethan and Evan are doing wonderful! Ethan is over 12 lbs. and Evan is a whopping 14 lbs. They have started trying to “talk” and are learning how to complain when they want attention. Both boys love to “chat” and are learning that they can call out when they want something. It is tough to record them because they tend to stop talking when they realize they are on camera! Take a look at the video below to see the twins in action. Also, there are lots of pictures below as we have not had much time to update the blog with images, video, etc. These pics are from the last several weeks. Enjoy!

Which team are you on?

There’s an “e”-monster under my bed!

Sweet Pea is done for the night.

Medium and Large…now we just need “Small”

To date, the only picture with all three boys together

Baby Aiden is so cute!

Little AI with his tongue out

Grandma and the twins

Aiden getting a breathing treatment (when he was home)

Look at those eyes!

He must be the cutest baby in the world!

Ethan issues a challenge to Evan

Ethan is doing good holding his head up — he is already scooting himself around a little bit

E1 is out for the night

Grandmas and the twins

Grandparents and the twins

Evan in his jungle gym

Ethan, what big eyes you have!

The boys with their new friend, Carolyn

Evan is all cheeks

Ethan poses (but no smiles)

Evan was not ready to have his picture taken

Ethan is learning to chew on his fist

Evan looking around

Ethan tries to talk to me

Ethan awaits my response

Evan loves his bumble bee

When he sleeps, he loves to hold on to his friends

These little thieves stole mommy’s heart!

Throughout the last week, Aiden has marginally improved each day. That means little over the course of 24 hours, but over the course of a week it certainly adds up.

His oxygen dependency on the ventilator has dropped and they have been able to wean him to a much lower requirement. Although he still requires ventilation, he is doing much better and less dependent on it.

The x-rays look better when compared to last week and they have been able to take him off the paralytic (although he is still sedated). It was such a blessing to see him open his little eyes and look around the room. Brain and heart scans look good so the main issue is still the lungs.

Please continue to pray that his little body would fully heal. Also, please pray that we would know what decisions to make once he is released from the hospital. He has severe reflux and we need to determine the best way to feed him whether it is orally or through a feeding tube.

Thanks so much for your support and prayers!

Aiden has improved marginally each day since last week. His oxygen dependancy is down and the x-rays show some improvement. He is still sedated and paralyzed as they do not want him to be active and risk pulling out any of his tubes.

Thanks so much for all your prayers. Things are better but he still has a way to go. Hopefully, by the end of the week, things will get good enough to where he can be taken off the ventilator.

Please continue to keep praying for him!

Thanks,
Manish & Hannah