December 30, 2006

It's been a nice week.. We had a wonderful Christmas and santa was very good to us all. We got thebest present ever. To have Aiden home with us..

Aiden is getting huge, he is now 13 pounds 12 .5 ounces. Now weare just waiting for another growth spurt to gain some inches so he can grow tall like his daddy.
We celebrated Nonny's birthday yesterday (my mom) and spent time with her and my god mother who is visiting from Georgia, which was nice. The other day we visited our friend Beau from the NICU. He's getting big too, but Aiden now has a pound on him. It use to be the other way around so it's kinda funny to me. In the end it will all come out in the wash I am sure. To see them together is just amazing though. To know how tiny they were and how good they are doing now.

Aiden has also come off his oxygen. Technically we are suppose to still be on the ween, and up to about 6 hrs a day off and on while he is sleeping. However for the life of me I can't keep it on his face. Tape doesn't work anymore cause he just pulls it off. I can put mittens on him, but he learns to wiggle them off to so he can then pull the tube off his face. If he decides to let it be, then he just wiggles and wiggles until the oxygen canula is above his nose and not in it. So at this point, since I've monitored his sats and he has always been 97 to 100% (usually 100%) even while sleeping, I just let him be. Even his nurse said he looks great and sounds fine.

I'll probably get hell from some people who read this thinking what is she doing, but honestly, Aidenw asn't on the oxygen for trouble breathing. It was a precaution so he didn't get pulmonary hypotension, which he doesn't have.
He truly is doing great and all in all been off the better part of the time since christmas.

We are also still working with our fruit and veggies and cereal. It's helping so much. He does wonderful with a spoon and eating and it help tie him over til the next feeding since formula just isn't cutting it anymore. YES this is another thing I have not gotten the green light for yet. BUT as some people say, no one knows my baby like me and it's true. The doctors know some stuff but they are not with him 24 hrs a day like I am. They don't see what I see.
If he had a problem trying to eat, or swollow and breathing, then obviously I wouldn't give it to him. BUT he doesn't.. He eats like a normal new born does, swollows then takes a breath, just like we would. I am assuming that on the 17th (his next swollow study) he is going to ACE it.. Since he basiclly passed the last one, but they wanted to wait for his cold to clear before they gave the green light and chose to give it 6 weeks and do another study, I think he is going to sail through and laugh at them. He's just come so so far and accomplished so so much. I still look at him and cry because I am so proud and just love this little man so much. He truly is awesome, and wonderful and my world is a better place for having him in it.

Here are the pics from the other day when we visited Beau. They both fell asleep near the xmas tree. It was the cutest thing..

And to everyone who follows us, Have a wonderful safe and happy new year!! Can you believe it is going to be 2007 already.

December 23, 2006

IT's been a while since I've posted, and so far all is well. Aiden is getting huge and doing really well on the oxygen ween. He is actually off it more hours then he is "allowed" but I have emailed the doctor to tell him this and so far it's been ok. I would keep the oxygen on him if he didn't pull it off his face all the time. At this point it is just pointless. It's not helping him any considering he sats at 99 to 100% when ever checked, and seems to breath exactly the same with it on or off.
He is gaining weight like a champ and is now 13 lbs 1.5 oz.. I don't know what happened to our little peanut but he is now not so little. It seemed to happen with in just a few days. He went for 8 pounds to 13.. YIKES and he is growing and growing..

Well I hope everyone has a Happy and Wonderful Holiday.. Best wishes from our family to yours..

December 15, 2006

Well good news Aiden passed his hearing test. When we got there they did an initial test that measures the movement of the ear drum and for both ears she was getting a flat reading, or no movement. She said that usually means the child has fluid behind the ear drum and to make sure I mention it to our pediatrician.
Then it was the regular test. The night before we had to keep him up late and wake him up early (if possible) and then hold his 8am feed so he'd be hungry when we got there.
We did our best to keep him tired and he was definetly hungry (the poor kid, his app't was at 10:30 so the last time he ate was 4AM) After they did the ear drum test, we hooked up Aiden's feed and they put us in a sound proof room and dimmed the lights. We had to try to get him to sleep, which I thought was going to be hard after they scrubed his head and spots to stick the probe stickers on, which kept coming off. Eventually he fell asleep and actually for the most part stayed sleeping for the entire hour. They checked the left ear and told us his hearing was in the normal range so that was good and we moved on to the right. Then she camein at the end and told us he passed, that both ears have hearing in the normal range and she was surprised considering he has fluid in his ears.
So all that stress in the NICU thinking he might be deaf cause he failed both hearing tests then. i am so so glad that he has passed. One less worry and one more thing this child has seemed to come through with flying colors. He still amazes me..

He is doing well and gaining weight like a champ. I picked him up today and I sware he is 5 pounds heavier then yesterday. He's getting big and now wants to eat more often then every 4 hours so I have increased the amount he gets every 4 to see if this helps rather then changing to every 3 hour feedings. So far so good, and we see the nutritionist next week so I am sure some adjustments have been made. It does seem like formula is not holding him over as long though. I can't wait til they tell me I can feed him cereal. Which to be honest we have tried a spoon or two. We have also tried a spoon or two of peaches and today bananas. HE LOVES IT!!!
I just won't give him enough to really consider a meal, it's more like a taste and so far it's only been once for each. I'm just waiting for the green light from the swollow study people, who said that he would probably do great on cereal. At the next test they are actually going to spoon feed him too. I k now maybe I am foolish for even letting him taste test things like that, but if he failed the last test I wouldn't even think about it, but considering he passed it, I figured just a little taste would be nice. You should see the smile I got after. It was enough to melt your heart.

December 13, 2006

Happy Birthday to Daddy! aka Chuck.. Can you believe he is 30 today haaaaa and now the world knows.. For his it's no big deal, When I turned 30 I cried, Go Figure...
Well Mr Aiden gets a Happy 6 months, he turned 6 months old on the 11th and as of today weighs 12 pounds. He is a 12 pound turkey, tee hee..

We had a pulmonary check up today and have begun to ween his oxygen which I am sure he is going to do fine with considering he is active now more then before so that darn thing is forever popping out of his nose. If it's not popping out he pulls it off his face, so he probably only has oxygen half the time he should. I can't keep up and trust me I try.

We also saw the GI doc and didn't I feel like a goof when the only problem was the spin bar on his tube needed to be tightened. I wish someone showed me that a month ago. 6 hours in the ER and a doctors app't to find this out. Now that I think of it, why didn't the ER just tell me that, there solution was use tape.. UGH!!!

All in all, Mr.Man is doing fab. He's gettin bigger, moving more, and interacting with people. He's come to like his little swing more then the big one and has learned that he likes to watch TV which is really funny. He will lay on the bed with me and turn toward the TV to watch what ever is on. He is so funny at times and so amazing..

We have our hearing test on Friday so I will keep you all posted on how that goes. We are now off to make Daddy a birthday card. (Well Mommy is, if Mr Man will let me be for long enough ha ha)

December 10, 2006

Always something huh..
Well we spent about 6 hrs in the ER once again.. This time it was because I hooked up Aiden's midnight feed and went to change him and well his g-tube was out about an inch or more then it has ever been. Yeah it was a bit scary. I stopped his feed (he'd only got 8 mins worth) and off we went to the ER. It took forever, try this try that, then they decided to send him to get a g-tube study. It was off to xray and they put in some contrast to make sure it was going into his tummy. Sounds simple huh. Well this took 6 hours.. YES 6! For them to finally decide what to do and not send us home still questioning if it was disconnected. Which then meant that Aiden missed his midnight feed and his 4AM feed and was NOT happy. We finally got to go home and Aiden got to eat. The doc said to keep the little bas that spins on the outside of his belly taped down, but considering that it is suppose to move and be turned everyday, taping it makes no sence to me. So I will be calling GI tomorrow to see if they can get us in and take a look. I know it's not leaking, or well I've been told, and he has been tolerating his food fine, so that is good. I just want to make sure that it's not the tape keeping it in place so when I go and take it off the damn thing comes out. Or if I give him a bath, cause that would really scare me.

I finally can't wait for the tube and the oxygen to be gone. Parents that don't have there kids hooked up to 1000 things have no idea how lucky they are. Iknow the g-tube is easy to use and oxygen isn't a big issue. But when your out and have a baby and need to feed him and carry his oxygen around and the feeding bag. Making sure the bag doesn't tip so air doesn't get in his belly. Trying to chang his diaper when there are lines every where. And then getting the oxygen perfect on his face and he pulls it off. Not to mention that the tape at this point is giving him dry chapped cheeks. For his sake and ours I can't wait until he can drink from a bottle, eat off a spoon and not have to carry a tank around. Considering it it off his nose more then it is on from him moving and pulling, I am pretty sure he will be fine with out it.

On a holiday not I took some pics of Aiden today at my moms in front of the tree for xmas BUT since I am putting them in cards I can't post them yet.. Sorry all.. You will have to wait. I do however have pics from yesterday of him in his car seat all ready for some football.. Well once he wakes up that is LOL.. Enjoy!!

December 7, 2006

So our little boy gained some more weight, or it could be that it was just a different scale at a different doctors office, but he was 11 lbs 7 oz and 21 inches. I might of already said this before, but it's hard to imagine that some people have newborn babies this big.. OMG Noooooo!! OUCH!
As you know we saw the pedi, Aiden got his 6 month shots and his RSV shot and the doc said he had a bit of brocholitis. He ended up getting a bit of a fever that night and was a bit fussy then slept a lot once I gave him some tylenol and the next day was a bit better.
Today on the other hand he sounds better but still a bit junky. He's sleeping a lot today but that may have something to do with his staying awake til 5AM. Once again we will be trying to flip his awake and sleep time. It seems like every time I get him close to a schedule of awake during the day and asleep at night, he decides he is going to change it up on me and stay up later so he will be tired and sleep all day. I've tried to wake him up about 10 times already but no luck. It last about 10 to 15 minutes and he is out again. If I try to wake him too much he crys cause I am aggrivating him and I just feel bad..
Yeah I know he already has me wrapped around his little finger..
Oh and I was semi right about the GI doc. They cut his Actigall in half until they get the labs drawn next week and then they will cut it altogether at the next appt in January or they will adjust it again. Most likely they will cut it..
I'll keep you all posted on how the "little" guy continues to do... Until then hav a good one..

December 6, 2006

Only 19 days until Christmas people... WOW I need to get a tree.. ha ha
Soo on to better things.. Aiden had his swollow study yesterday and technically passed thick liquid. They did not try him on thin. He didn't asperate any of the liquid into his lungs but towards the end pooled it near the opening of his wind pipe, but then directed it toward his belly like a big boy. They were very pleased with this and so was I.. No choking, couching, nothing, just down the shoot it went and right to the belly. However they chose to keep him off bottles until he doesn't have the "pooling" issue. So we will have another test in a few weeks and they will then also try him with a spoon for cereal and fruits.
I think some of it may have had to do with him just getting tired too because (and they agreed) he didn't pool until the very end and he also has a cold so he was pooped out a bit. Either way, what is a few more weeks... We did 150 days in the hospital, I can handle another 30 with no bottles and stand on my head at this rate.
...and YES you heard me he has a cold. All the keeping him in, making sure people stay away, washing hands, no kids around rules didn't stop it from coming. It's not a bad one so I am sur ethe "rules" helped out, and who knows part of it may have to do with one day it being 60 out and the next being 30. back and forth to doctor appt's causes us to be aorund sick people and kids so I am not surprised by the least. It started with the snuffly sound in his noise, which he has always had cause it's a common thing with preemies. Now it just soundsed more junky. I kept his nose clean, and lets say he just loves me for that. (He see's the boogha bulb and runs for the hills.) and we kept him cosy and warm and in doors as much as possible but on nce days did bring him out for a bit of sun and air which he LOVES.
He started to sound like he was getting a sore throut too but part of that I think has to do with theis damn reflux. Some days he is fine and other days he can throw up every other feed. That has got to do a job on your throut and I'm sure it's sore, but a little baby tylenol seems to help him no cry when he coughs.

We see the pedi today for his 6 month shots and his RSV vaccine so we will discuss the issue with him too. We did talk to the pulmonary doctors they gave him a dose of lasix yesterday to help him with the wetness and breathing (that seemed to work great) and told us that colds in babies, full term or preemies, seem to last 10 days so to hang in there and if we have any problems to let them know. To also talk to the pedi about it, which as I said I planned to do anyways.

He is now off his diuril and pottassium all together and his lasix has been cut from every other day to twice a week. We see GI tomorrow and I am thinking they will take him off his actigall too because he no longer is jaundice and seems fine, we will see what they say.

Now for meds all we have is Iron in the morning, Prilosec in the morning and at night, and Actigall in the morning and at night but like I said that may be done with as soon as tomorrow. Then his lasix twice a week.. Ahhhh so much better for his little tummy I am sure, cause who wants a belly full of meds every day.. YUK..

Well the monster (who's last weight was 11 pounds 3 ounces on Friday) is waking up again, so I am going to go tnd to my baby boy and as usual I will update you all again soon..