Week 29...On the tube & on the move

This past week has been so hectic and stressful. Ayden still remains intubated and is hating every second of it. They have been trying to keep him pretty sedated or retrained all week in order to avoid an accidental extubation. Even with these precautions he managed to extubate himself this week with his rapid head movements that he does when he is being retrained. And so explains the never ending cycle...

When it concerns his g-tube, it opened up and they began feeds. He finally got back up to full feeds and 24 calories. Full feeds went good but when they progressed to 24 calories he began to spit up more often. When we noticed this it was at the point that he was going NPO for his bronchoscopy. Since they began the 24 calorie formula Ayden has been losing weight consistantly...He now weighs 8lb 5oz (down from 8lb 9oz) and if finally 20 inches long!...I have a feeling his newborn clothes aren't going to last him much longer... :-D

And so, onto the brochoscopy & results...I was waiting to write this post until I found out the results of the bronchoscopy. It didn't reveal any good news or give us any answers. Once again we hear the statement that they "have never seen anything like it and are unsure as to what it is or how it happened"....I just don't get why Ayden is always the exception or always has to endure the worst case scenerio....(the doctors tell me now its because most 23 weekers don't make it this far and so there isn't anything to compare his issues to)...So, the pulmonologist says that there are three different possibilities but what they found is not typical for any of them. They found lesions on the top of his mouth at the back of his throat, as well as around his vocal cords. They said that when he breaths that these areas collapse and block his airway. In addition to these lesions he also has Tracheomalacia(softening of the trachea in which the airway closes down when taking a breath). After these results were found, we were informed that he will be transferred to Cincinnati Childrens for more tests and probable airway surgeries. He will be transported on Monday morning and we have no idea how long he will have to be there. The more serious the condition, the longer the stay will be :-(....

When it concerns his hearing...the ENT consult was put in and requested numerous times but the exam was never done. We will be requesting one when we arrive in Cinci as well since the ENT specialists will be the ones who follow him there for his airway issues already. Although no additional testing or examinations were done, the audiologist re-examined all of the previous data and told us that his hearing loss was in fact Sensorineural hearing loss and not just fluid or something of that sort. His hearing aid paperwork has already been started and now all we have to do is wait for another more detailed exam.

On a happy note...I officially became an Aunt this week...My beautiful little niece Lilly was born on Feb. 24th weighing 7lb 6oz...Here is the birth announcement i made for her :-D


Isn't she beautiful?

Here are some pix of Ayden this week as well...he has not been a happy camper!



I hope next week goes a bit more smoothly than the past few weeks have been...
...Off to Cincinnati!!...Wish us luck!!

Extubation failure & chest compressions

So, literally minutes after posting my last blog post the doctors decided to attempt to extubate Ayden. They said that he was breathing over the vent and they thought he could do it without it. OOOHHH but were they wrong!... First they just let him breathe with a form of cpap through the tube to see if he would breathe before they took the tube out. He seemed to be taking breaths even through the small tube they had in. When they took out the tube he did not breathe. He clinched down his airway and held his breath. The RT prepped to reintubate and attempted to take a look @ his airway. When looking she could see nothing and could not secure a path. Ayden was clenching down his airway and there was another obstruction that they could not identify. Ayden's heartrate dropped as he held his breath and he began to turn grey and purple...So many people rushed to the bedside that I was guided out of the way and taken to another room to calm down. After numerous tries from the RT & the neonatologist they were finally able to reintubate. But, when I was taken away Ayden's heartrate dropped to 0 and they had to perform chest compressions for a little over a minute. I thought this type of stuff was over!...This was definitely a big setback!...We will definitely not be going home within the next 2 weeks!

So, orders for a Pulmonology screen and an ENT(ear, nose & throat) exam have been placed. Hopefully with the next week pulmonology will help us understand what the obstruction in his throat is. (the Neo seemed to think that it was some kind of calix that has formed--calices near the trachea are more cauliflower shaped rather than flat). The ENT exam should tell us more about his hearing issues as well...We are crossing our fingers in hopes that it is just fluid that is causing the interference.

Meanwhile, Ayden has began to swell pretty bad and his lil manhood seems to be taking the worst of it...With all of the swelling his urine output had been dangerously low but has begun to increase and he has been pushing his catheter out with his urine. I guess this is a good sign.


So, there is not many signs of relief and our excitement for him to come home soon has been depleted..We definitely have more questions than answers right now....Poor lil' man can never get a break...Will he ever be able to come home?

Surgery is done...now to recover!

So yesterday was a very long day & I was way too stressed to post anything. I was no stressed that I thought I was hungry and so I ate and ate until I figured out that it was just nerves...I have not done that to that extreme since Ayden was first born. And I wonder why I have not lost enough weight lol...

So, the surgery went just as planned minus one thing or another. They placed the g-tube but did not do the fundo (a band @ the top of the stomach to help reduce reflux). The hernias were fixed without any problems. But while the surgeon was in there he found that Ayden's left testicle was ascending and so they put stitches in and a button to bring it back into place. This procedure went ok but did not last & the botton came off within an hour after being brought back up to the NICU. I guess they will do the same procedure again sometime before the age of two. He got his circumcision as well but it looks very gruesome. He is still intubated, has been given a blood transfusion and is having a hard time with pain. They have upped his fantanil drip and has given him numerous spot doses of 3 different pain meds. They have cathed him and given him numerous bolices to help him get out the urine as well. He is not a happy camper. He has begun to swell quite a bit & seems very uncomfortable...Poor baby boy is having a rough time. We are hoping the pain gets better and he starts to improve soon. Here are soem pre & post opp pix as well as some happier shots from valentines day!

Pre-Opp


Post-Opp


now for some happy pix...

We had a Happy Valentines Day!...look @ my lil cutie pie!

Bath Time b/c he peed all over his real Valentines Outift!
Mad After his Bath!

pics pics pics!

I know its late but I can't sleep because I am so nervous for tomorrow....I have to be at the hospital by 7:30 but my mind won't quit racing long enough for me to fall asleep...& theres not much to report so here are some pix of Ayden. I don't have the cutest ones on my computer yet but here are some from the last week or so... :-D

I will probably post more photos during Aydens surgery to take my mind off of it as well...So, I have been attempting to make different elements and layouts for digital scrapbooking & this is the first one I have made from scratch without other people's elements...let me know wat u think :-D

Here are some more pix of my lil monster!

Week 27...Hearing tests & an angry boy

So this week has been hectic to say the least. I know it seems as though all I ever have is bad news but really we never get any good. His surgery has been rescheduled 3 different times already. If no further changes are made, he will be going to surgery at 9am on Monday. Aside from surgery plans and upping his calories from 20 to 23, this week there were not any changes made in his care. He is still on Progestimil and hating every second of it. Ayden throws tantrums during nearly every feed and takes less than half of what he is supposed to. He has been steadily gaining weight and so his minimum intake expectation is now 85ccs every 4 hours. The last couple days he will have a good feed and eat 50ccs one feed and then eat only 30ccs the next feed. I think he just likes keeping us on our toes! Today they mentioned finding a similar formula that tastes better or to find a flavoring to put inside of the formula itself. We will see how that search goes within the next couple of days.

The enzymes are still giving Ayden's bottom issues and none of the creams they have been using have been helping. The doctors said they are going to search for a different type of ointment for that as well. Meanwhile, Ayden is now up to 7lb 8oz & is 19.75 inches long...He is just looking so big now!

Last week I mentioned that they had had some issues with Ayden's hearing tests and we were a bit clueless as to what was going on. Well, yesterday they did another screening and they came back to say that he had moderate hearing loss and he will be examined by a doctor. If the next test comes back the same he will be fitted for hearing aids before going home. All of the nurses say that unless the baby is calm and quiet that the test results are not very accurate. During his test Ayden threw a tantrum, threw up profusely, held his breath and bradied for the first time in months. They will be doing another test after his surgery on Monday while he is still sedated. After that exam we should know more about what to expect for his hearing.

Yesterday was probably one of the the worst days Ayden has had in a while. He threw up his entire feed three different times yesterday and over 100ccs of air was drawn off his stomach numerous times. Late last night they ordered a belly x-ray and said that he just had a lot of air in his belly. My question is...how does a baby his size get that much air in his belly? He gets less than 3 oz of formula every 4 hours & 4oz of air is being drawn off of his stomach in between feeds. There is something going on that they are not finding!

So Ayden turned 6 months old on the 5th and I completely didn't mention it in my last post. I did take some photos of him on his big day and I will post them later! I can not believe it has been a half a year since my precious man came into this world!

Wish us luck for Monday! Next week is a big week for our lil man!

Week 26...Fussy Fussy Man

This week didn't bring many changes for Ayden other than in his personality. I am not sure if it is the fact that he hates the taste of his formula, that his throat is sore from enzymes, that is little bottom is so raw that the open sores bleed all the time, or the fact that he is just getting older, but Ayden sure has been fussy this week. He has began to stay awake in between feeds more often and is beginning to make more sounds other than crying and grunting. He has not progressed into happy sounds but more whimpers and higher pitched squeals and grunts have been coming out. We are hoping that the "coo"s will be coming around shortly as he seems to be responding with whimpers when we talk to him when hes mad.

This week his feedings have gradually gotten worse. He has taken anywhere from 5-40ccs at most when his minimum is 80 for his weight. He acts hungry before and after he takes his bottle but has been gagging, screaming, and throwing his body around when the bottle is placed in his mouth. I just cant figure out why he is being so temperamental about eating. I feel like the g-tube is a good option for him but I don't feel like it is an answer to his problems. He used to eat 60-80ccs when he was only required to eat 40-50ccs and now he is not even eating half of what he is supposed to now. I want explanations as to possible reasons why he is acting this way and not just a crutch to send him out the door. Don't get me wrong, I am ecstatic about bringing him home but I feel like we don't have a direction of which to take to help improve his feedings even with the g-tube once he is at home.

Meanwhile, It seems as though his enzymes are doing their job. He seems to be getting a bit burnt out on his applesauce but still does well with it overall. His weight has been stable and has been gaining and losing each day for the past week....The highest he has been this week was 7lb 4oz but has lost and gained numerous times. He now weights 7lb 3oz and is 19.5 inches long. The enzymes are helping with nutrition and weight gain but have taken a major tole on his bottom. His little booty has so many open bleeding sores and no cream they have tried has made any improvements. Now, 1-2 times a day we change his bottom and leave it open to air or give him a sitz bath. Not many improvements so far but any day that we don't see blood in his diaper we are a little bit relieved. I have a feeling that this has a lot to do with his recent temperament though.

Within the past week he has also had numerous eye and hearing exams. They have not said anything bout changes in his retinopothy but they have become very concerned with his pressures. In terms of pressures, high pressures in the eye usually is connected with glaucoma, we are still waiting to hear more about this as that have checked him every day for the past 5 days. In addition to the high pressures they say his cataract is still progressing but we still have a while before a surgery for that is in the works. We are still crossing our fingers in hopes of him having some vision in his right eye but for now it seems as though he doesn't see much as he rarely ever looks at anything other than lights. This week they tried numerous hearing exams but said there was too much interference. I am unsure what that means but they are supposed to try again within the next week or so. Even though it seems as though he hears we want to be certain before he goes home. One of the reasons we are so concerned with the hearing factor is because Ayden's daddy is deaf (he has about 85%-90% hearing loss) and his family did not find this out until he was almost 3. To me that is a long time to go without noticing a disability as prominent as that. I want to know anything and everything that even seems the slightest bit odd about Ayden as to prepare ways to help him overcome anything that may come his way.

So, Ayden's big g-tube surgery is supposed to be next week but we are still unsure as to which day it will be. The surgeon told us that it would be a 3-4 hour surgery as he will have 3 hernias repaired, a circumcision, and his g-tube placement. The neonatologist told us that he would be coming home within 2 weeks after the surgery. We have waited for this for so long and now that the time is coming I am beginning to get nervous. My biggest fear is getting his medicines mixed up or not keeping on schedule with them and I know Ayden's daddy will not be much help in that aspect. He refuses to read directions and can not be on time for anything. With as many medicines as he will be getting and the equipment he will be coming home on we will have lots of training to go through within the next 2 weeks as well. Nervousness has definitely set in!

Wish us luck & please pray for Ayden in hope that his surgery will go smoothly...

On a more solemn note:...Last week was quite hard in a different way...One of Ayden's neighbors passed away. She was a 25 weeker who was about a month and a half old. She had been doin significantly better than most of the other micro preemies I have seen that early on(was already on a high flow cannula) but things turned for the worse after her pda-ligation surgery and she passed away. My heart goes out to her family during this time. RIP Jazmyne...you were very loved & will be missed!