Aiden changes his address...

Just another quick update since I have another dirty diaper to change in about 5 minutes....
AIDEN IS HOME :)

We picked him up this morning and he slept most of the day which means Holly and I won't sleep tonight.

We had a pretty smooth day which is good since the last couple days were pretty hectic. We will post some new pics soon.

Quick Update...

Aiden is currently on 1 liter per minute at around 30% Oxygen...he is progressing towards his homecoming next week. It is very exciting to be talking to the doctors, therapists, and nurses about "when he goes home". We worked on a few feeding exercises today to continue training Aiden to bottle feed. He did pretty good, but was a little moody since he got his 4 month immunizations this morning.

There is a possibility...

That Aiden will be coming home next week.

I am so excited at the thought of our little family all being under the same roof.

Aiden's doctor told us today that her plan is to wean his oxygen to 1/4 liters per minute by the end of the week (he is on 1 1/2 currently) and to send him home sometime next week. On oxygen of course and a feeding tube. She thinks that this point he would benefit more from being home even if he is not quite 100% ready yet. We will have to learn how to insert the feeding tube through his nose, work with him on feedings and he will be on a heart & respiratory rate monitor - but at this point we will do WHATEVER! We are just hoping that weaning his O2 goes smoothly and this week is uneventful so he really can come home. We are hoping for the best but know that it might be delayed if something happens.

Aiden is 4 months old today and weighed 5 lbs. 15 oz. WITHOUT his casts and sling on. He is getting to be such a big boy! He got his casts taken off, his feet re-positioned and new casts put back on. It was quite an ordeal, but Aiden was so good through the whole thing - he didn't cry once. They had to soak the old casts for over an hour to get them off, so technically Aiden got his first "real" bath today in a little tub of warm water. The orthopedist said his feet look really good and the left one almost looks like it is in a "normal" position after only one week!

Getting his casts off - he did so good!

This is his "bad" foot after just one week in the casts

Decked out in his I love daddy shirt :)

A busy week

Aiden and Daddy

Aiden had another big day on Monday. The orthopedist came to see him and his little feet got casted. His feet were placed closer to neutral alignment (where the foot is straight and in front of his shin) and casted in that position. In 2 weeks the casts will come off, his feet will be placed even closer to neutral alignment and re-casted. The process will happen every 1-2 weeks, depending on how fast Aiden is growing and will continue until his feet are where they totally in neutral alignment, usually about 8 weeks. His clubfeet were not something we had thought of that much, since so many other things going on with Aiden were life threatening. I finally did some internet research on the subject and found out that Aiden's are not that bad at all, his look pretty mild in comparison to others I saw, in fact the orthopedist said his left foot is not actually a clubfoot - just not positioned correctly (he called it a rocking foot), so his left foot will probably be corrected before his right foot.

Aiden and Momma

The orthopedist also found out that Aiden has a dislocated hip on his right side. Without any amniotic fluid for so long his right side was pretty squished in there and the ball of his femur did not grow correctly into the socket, no cartilage formed between them making it easy to slip the bone in and out of the socket. He is now wearing a special sling that keeps his hips in the correct position for the cartilage to grow and correct the problem. The orthopedist said that it usually takes about 3 months to correct, but it also depends on how fast Aiden grows.

Aiden in his casts and sling - momma is going to find a way to make it cuter :)

Aiden is back up to full feeds (50mls every 3 hours) and off the TPN and lipids - so no more IV...yay! He bottlefeeds for about 20 minutes and whatever is left over is fed to him through a little tube in his nose that goes down to his tummy - it's called gavage feeding. He usually takes 1 or 2 whole bottles a day and gets down about 20-25mls of the others and is gavage fed the remaining 20-25mls. His doctor says he is doing pretty good considering he has only been at it for a week :) He can go home on the gavage feedings, we just prefer that he doesn't, but feeding him might prove to be a challenge in the future. He weighed in last night at 5 lbs. 13 oz. although the casts are adding some extra weight!

Almost 4 months old!

His oxygen requirements have gone back up at Mercy. We are not quite sure why. When he left Sutter he was on 2 liters per minute at 22-23% oxygen, at Mercy he is on 2 liters 30-35% oxygen - sometimes even 40%. His doctor mentioned that he had not gotten his diuretic since he got back and he may have some extra fluid built up in his lungs, so he was started back on that. I was told we should be watching the liter flow rather than the O2 percentage, as he can come home on low flow oxygen, so the plan is to work on reducing his liter flow to 1/4 - 1/2 liters per minute and get him home!

All fixed up and back at Mercy

The nurses at Mercy made him a welcome back sign

Aiden's hernia surgery on Thursday went well. He was off the ventilator and breathing on his own again right after he was brought out of surgery. He wasn't on huge pain medication afterwards like his last surgery, only tylonel, so after a good sleep from the anesthesia he was acting like himself again that night. Hopefully, that was his last surgery for a long time.

He was transferred back to Mercy on Friday morning. The nurses were so happy to see him. He is back on bottle feeds, getting down 15 mls every 3 hours. He is still on his TPN and lipids through an IV until he is back up to full feedings - before his surgery he was getting 14 mls every hour. He is still learning how to take a bottle and it takes him 25-30 minutes to finish his 15 mls. He falls asleep alot and at the end we kinda have to force feed him - it takes alot out of the little guy :) Our main priority right now is getting him back up on his feedings and teaching how to use the bottle.

Dinner last night...

Aiden licking his lips after tasting the milk :)

We will talk to his doctor when she is back on Wednesday to find out what the plan is for getting him home to us! Hopefully it won't be long now that he is all fixed up! He is ready to be a normal baby. He loves it when we hold him and has started to realize when we are leaving and fusses and cries until we pick him back up - it is so hard to leave him at night, hopefully soon we won't have to. We are all ready for his homecoming!

Some pictures

Aiden started getting milk again today - 10 mls every 3 hours from a bottle, not a tube :) He is up to 5 lbs 6 oz now. His hernia surgery is tomorrow morning and the word from his surgeon is that he will be transfered back to Mercy sometime on Friday. Although he is doing really well at Sutter, we will be happy to get back to Mercy, it feels more like "home". Since the last couple posts have been photo-less, here are a few pictures we took today of Aiden's bottle feeding adventures, etc...

Momma feeding Aiden

After lunch...sleepy baby

Daddy's turn

"What's momma doin' with that camera?"

Aiden's tummy post-surgery - if you look close you can barely see the scar. Babies heal fast!

...and we have poop!

Aiden has done very well the last couple of days.
His "plumbing" seems to be functioning well,I got to change my 1st poopy diaper today. I think I did pretty well for a rookie. He is still on TPN/Lipids however they are beginning to bottle feed him some pedialyte. The nurses seem pleased with his ability to bottle feed. Hopefully his days of "constant feeds" with the feeding tube are over or at least limited. It is possible that on Wednesday he will be fed milk again. We think Aiden prefers the milk over the flavorless pedialyte.

He has been doing well on the nasal cannula on 2 liters @ 22-24% oxygen.
FYI, 21% oxygen is what we all normally breath. The last couple of weeks Aiden seemed to be stuck at 2 liters @ 30-35% oxygen. The fact that he is doing so well after his surgery is very exciting for us.

Also, the incision from the surgery is healing very quickly. In a couple days all of the steri-strips used to close the skin will have fallen off and it will be hard to tell he even had a surgery.

We are so proud of our strong boy

Recovering nicely

Aiden was able to get off of the ventilator on Saturday and is currently back on the high flow nasal cannula. He is on 3 liters of oxygen at 30% which is a little bit higher than he was before the surgery. He will more than likely be re-intubated again for the hernia surgery which has been scheduled for Thursday at 1:30. We've been told that the upcoming surgery is a little easier and the recovery should be quicker. He will just be given children's Tylenol for the pain rather than morphine. Aiden has been more himself the last couple of days which is nice to see.

Aiden is still on TPN and lipids, but we are hoping the feedings will start soon. On the night before the surgery Aiden weighed in at 5lbs. Two nights ago he was at 5lbs 9oz which is alot of weight gain in a short time. He has put on alot of water weight since he wasn't given his daily doses of sodium and diuretic prior to surgery. We should see a slight weight drop and his "double chin" disappear in the next couple days.

Quick surgery update..

Aiden came out of surgery just fine, it took about 3 1/2 hours.

The surgeon chose not to do the hernia repair at the same time which means Aiden will have another surgery probably sometime next week. We've been told the hernia surgery's are fairly simple however he will have to be re-intubated again next week.

He is currently on a ventilator while he is on pain medication, they will try to ween him off slowly but we were told it could take around 24 hrs.

He will more than likely be staying at Sutter for a bit longer than expected, we suspect it will be 7-10 days.

The surgeon does not want to release him back to Mercy until he knows the "plumbing" is working correctly.

Thanks to everyone for their well wishes and & support :)

Frustrated waiting

Yesterday we received a call from Mercy telling us that Aiden would be transferred to Sutter a day earlier than expected. Mercy is going "live" with a new computer system on the day he was supposed to be transferred, they were also nearing NICU capacity while Sutter had space available.
He was to be transferred by ambulance at 4:30pm so we went down around 2:30 to sit with him and hold him. When we arrived he was in a deep sleep, apparently he had a rough night and didn't sleep very much. It has been difficult for him to get comfortable and get some good rest. Aiden is in obvious discomfort from the hernia and stomas.

He has always been a very calm baby who hasn't complained or cried very much. In the last week or so he has been difficult to comfort & has been crying a lot more.

The transfer to Sutter went fine, the nurse said he slept the whole trip over.

We STILL do not have any confirmation whether or not the hernia will be fixed at the same time as the re-connect. I asked the Sutter neonatologist last night if the hernia will be repaired at the same time. We received the same answer that we have always gotten....." that will be up to the surgeon".

BEGIN RANT:

Not wanting to disrespect the medical staff, so in my head I'm thinking ...."OK, SO FREAKIN CALL THE SURGEON AND ASK HIM FOR CRYING OUT LOUD!!!"

I've really gotten the impression that surgeons are looked upon as some magical being that cannot be contacted or communicated with until they choose to make an appearance. Don't get me wrong, I appreciate what they do and acknowledge that we need them. I just don't understand why we are left with unanswered questions until the minute before the surgery.

END RANT

Holly and I were at Aiden's bedside until around 10pm. We had a really hard time leaving when he is crying. Leaving him with a new set of doctors & nurses doesn't make it any easier. We trust their medical expertise however we fear that Aiden will be left to cry while other babies that are worse off are tended too. Another thing that we find strange is that Aiden is not being given any pain medicine for the hernia. It appears that he just has to deal with it which is just heart breaking to Holly and I. Luckily, Aiden's surgery is scheduled for 8:45am on Wednesday morning. We are really looking forward to some poopy diapers!

Oh..and the surgeon had better throw in a free circumcision for making the poor kid wait so long!