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..

November 30, 2006

Well can you believe that it is just about December.. It is almost 2007 people, where did the year go?? Well I know where we were yesterday... Mommy (me) took Aiden to his doctor appointments. We had an appointment with pulmonary and GI, we however only made it to pulmonary. It ran late and made us miss the GI appointment so we rescheduled it for next week.
As for the pulmonary doc, well they cut Aiden's diuril to half and his potassium to half. Then tomorrow I have to call in and let them know how he is doing with that, if he is doing fine then starting Friday he is off them all together. They also cut his lasix from every other day to twice a week. We have to go back in two weeks and if all is well we will then start to ween him off the oxygen too. We'll start with a few hours a day then go to all day and he'll be on it just at night, then we will go to being off it all together. YAY.. One less thing to tape to him and drag around.
I think he will do just fine with out it. He takes it out of his nose so much now and is on such a little amount that half the time it's like he isn't on it any way. Another change was his zantac. They took him off it and put him on prilosec. He will start that today and hopefully the reflux will let up and he can eat better with out gaging and couching at times from it..

He's getting so big so fast. I pick him up now and he feels heavy, how funny is that. I love having him little but at the same time can't wait for him to grow up to see what he will look like and how he'll interact with us more. I also can't wait for him to slepe through the night. I have to say out of it all. The NICU stay, the meds, the g-tube, the lack of sleep is the hardest part. Last night Chuck stayed up with him cause I had just baout had it. I was over tired and grouchy again and for the life of me can't understand where this baby gets the energy to be up all night. I thought crying was suppose to make them tired and burn energy.. Haaaaaa
Not that I let him cry it out that often but for the love of god when this kid wants to sleep he sleeps and when he wants to be up he is UP.. The other problem we are having is he wants to be held for comfort all the time. I know in my head that it's a bad habit, but he'll just cry and cry and cry the second he is not with you. If he is tired he'll fall asleep in your arms too and you can hold him for 10 minutes or an hour it doesn't matter, he'll stay asleep until youput him down and he is WIDE awake and fussy.. So if any of you want to volenteer for the night shift come on over. I am sure me and chuck could use a few nights of normal sleep ha ha..
It makes me wonder, although I want more kids, I dunno about that.. I knew having kids was hard. I've helped friends, I did day care, but having your own at 3am when your tired and need sleep and have no one to help you is really tuff. So all of you out there who have help, make sure you thnk those people when ever you can. For all the ones who don't, well god bless you..

November 27, 2006

Yes it's been a bit of time since I have popped on to write, but to be honest, not much has happened, which can be a good thing. Early Intervention didn't show up last week, but came today. However it was all paper work stuff, they will work with Aiden on the next visit to assess him and see where he is for his age. They go by his actual age and not his corrected age so we know he won't be doing what other 5 and a half month old babies do, but that is fine with me. One day at a time. He'll do fine as time goes on, I am sure...

As for us, well sleep is still a factor. We've come to get down a bit or a routine of sleeping in shifts. It seems as when Aiden is sleeping I am not tired and that is usually when Chuck sleeps if it's during the day. Then at night if Aiden is up Chuck is usually up with him. I try to go to bed by 2am unless CHuck is tired then I am up til 4 and sleep when he gets up til about 9 or so.
Then I am usually up with Aidenor doing the other things that need tobe done around here. Chuck goes back to sleep at about 9 or 10 til 2 or 3 and goes into work for 3:30-4. He is usually home about 10 or 10:30 and will sometimes crash for a few hours. Then I go in for my sleep time.. Some days it just doesn't seem like enough though, but you got to do what you got to do.

Aiden on the other hand is doing well. I thinkhe is developing a reflux issue all of a sudden, which sicks cause usually they get it and grow out of it. He seems to be growing into one. Hopefully it will not last long. He works through it on his own and some times will spit up and other times if I pat his back it helps. It still makes me nervous and freaks me out sometimes. I am hoping at his next appointment they can start him on something that will help. He is on Zantac but ironiclly when they started him on Zantac is when he started having this problem.

We have a GI appointment on Wed and we also see the Pulmonary doctor too. We are going to start to ween him off his Diuril and his Lasix soon, then off the oxygen.

Well that is the latest news.. Oh and before I forget.. The chubba weighed in today at 10 lbs 13 1/2 oz... Geeeeeeeesh..

November 21, 2006

We had a pedi appointment yesterday and that went well. We see him again for Aiden's 6 months shot and his RSV shot. He finally hit the 10 pound mark and weighed in at exactly 10 pounds yesterday.
He's sleeping better although he still prefers to sleep for mommy during the day and stay up with daddy during the night. It's slowly changing and he does sleep well. When he is awake he is very social. He loves watching and looking around. He gets so excited and wide eyed it cracks me up. He's closer to rolling over and tries really hard sometimes and he's finally making more "baby" sounds. He has even started to play with the toys that hang from his car seat. Well he hits them to make them move and make sounds. That's what I call playing for now.
Today we are waiting for our first appointment with EI (Early Intervention). They are coming out to do there evaluation and paper work. Other then that things are pretty much status quo.
As you can assume, some days are better then others, but all in all, having Aiden home makes everyday a good day.

I've taken him out with me for walks to the pharmacy and to do other things and he loves it. The last few days we had felt like spring and he enjoyed being out so much. He'd smile when the sun was shining on his little face and just perk up. It's just amazing...
I'm still keeping to the rules. Don't take him out during peak shopping hours. Don't let people get in his face. Keep anyone with a cold 50 miles away. OK maybe not 50, but away! Make sure people wash there hands and use purell. So far it's going well and I am very picky about who is around him. I have to be, we can't afford for him to get sick, he's been through so much already.
Me and CHuck got our flu shots too, which they advise you to do and any family member who is going to be around him.

However as for the holiday, due to doctor's orders we will be spending Thanksgiving home this year. His pedi suggested we NOT do a "family style" thanksgiving to avoid all the people around Aiden. Either way I am still thankful for what we have and I wish everyone a happy turkey day..

November 17, 2006

All is well so far. We had a GI appointment and a pulmonary appointment on Wed and both went smooth. Long but smooth. GI said his g-tube looks fine. It's still a little pink but looks ok just to make sure after it's washed and after tubby time that we dry it really well. Pulomnary said Aiden looks good and that we are looking in a few weeks, probably about 2, to start weening him off some of his meds and the oxygen may be gone by the new year. Starting the next appointment we will be allowed to take Aiden off his oxygen a few hrs a day and increase that until he is off all day and only on at night. Then he will eventually come off it all together.
To be honest, he really doesn't need it. He does fine with out it and even took a tubby today with out being hooked up. I had to retabe the tube to his cheeks so i figured I'd take it off wash him up get him dressed and retape. He did great as I expected. Oh and the pulmonary doctor had the health care company send us a sat monitor. Funny how we asked for one whenleaving the NICU and they said no and then with out asking we get one. Hopefully now Chuck will feel ok taking a nap while I am sleeping it Aiden falls asleep too. He's like me and likes to stay awake if the other is sleeping so we can keep an eye on him. It's hard after 5 months in the NICU there is always that little what if in the back of your mind.

He really is awesome though. Being a mom is great. Granted I am tired and poor and some times stressed out but to just sit and look at him and know we created that. It's just amazing and blows my mind. People have babies everyday, but i don't think they ever really sit back and think Oh My God, I just made a new person. I just created someone who previously never exsisted. It's just strange and awesome and surreal.
I sit and watch him sleep and watch him wake up. Watch him look around and figure things out. I wonder what he is thinkind and if he can hear me when I talk to him (that's still a possiblility he can't) and he just keeps me in awe. Every second I love him more and more and everyday I fall in love with him all over again.

I took some pictures today when I gave him a bath this morning and put on his new duds... This kid has more clothes then Ralph Lauren.. HA HA

November 14, 2006

Aiden is doing really well at home. He's put the weight back on that he lost in the hospital due to the lasix which is normal in his routine, but he's not working hard to breath and his lungs don't sound junky either. He goe his dose of lasix today at 8am so I am sure he will pee off the weight again, well some of it.
He's doing a better job sleeping now too which is great, and when he is up most of the time he's happy and looking around and just content. There are times though that he is just a reck. Fussy and crying and not happy at all. Myabe part of that is me cause when he cries, mommy comes to the rescue. I can't help it. i can let him cry but not for a long time. If it's his fake cry that is one thing and yes he has a very cute "fake" cry, but when it's his mad upset cry, then I'm right there.
I know he's spoiled, but he's earned it I think.

So we have an appointment with the pulmonary doctor we wanted to see tomorrow after we see the GI team. We had a few connections and well it worked to get us our appointment sooner then his office wanted to give us one. The doctor even called us himself and apoligized. I know he's busy but trying to get in to see him sometimes is like trying to see god on a sunday..

Well I took a few more pics so i hope you all enjoy them. I've tried to get him awake but the kid loves to sleep when I whip out the cam. maybe next time. Although I have a great pic of him talking to his Nonny (my mom) So cute and already starting early on the phone..

November 12, 2006

I know it's been a few days and well it's been crazy...
First off I want to start by saying Happy 5 Months to my Little Man!!! You are my rockstar..
(He turned 5 months yesterday) can you believe it.

So.. This week went well, we saw the pediatrician on tuesday, saw the visiting nurse on tuesday and friday, saw the surgon on wednesday and the eye doctor and figured it would be a quite week end. NOT SO MUCH.
Friday the visiting nurse came and when changing Aiden noticed he was a bit puffy "down there" and even in his face, which I had noticed too, but he is know to retain fluid so I knew it was coming. He was also working harder to breath which goes hand in hand with the fluid retainsion. So a call to the pedi was made and since it was a holiday and a friday and after 3pm they were closed, but our pedi happened to be on call. So we called him and left a voicemail and he called right back. He told us to bring Aiden to the ER at Children's Hosoital. Most likely he would need a dose of Lasix was my thought and I was right. We got to the ER about 5 and ended up being admitted. SAince they were giving him lasix they wanted to watch his electolytes and they only way to do that is admit us. THis was after they tried 4 times to get an IV in with 3 different people including there "IV team" (yes they have a "team" for everything there) At that point both me and CHuck were annoyed that they wouldn't listen to us when we said they were not going to get one in. Aiden is a very hard stick and we just spent 5 months in the NICU if any one knows him it's me and Chuck. What was more annoying was they can give oral lasix so why attempt an IV 4 times.?? After that we refused to let them try again and they said oral lasix was fine. If there is a nest time I am demand he have it oral cause I ma not going to let them poke at my baby if they have the same med and can give it to him that way. (I didn't know this when they first attempted the IV sticks)
Well we got a room by 9:30 and finally got Aiden fed about 10 (another thing I was annoyed about. Since we told them at 7 he was due at 8 to eat) They had a hard time finding his formula brand in the hospital, but if you ask me, it wouldn't of been so hard if they called the right department like the ummm NICU..

For the past two night, YES 2!, they decided to monitor him for 48 hrs rather then 24, his schedule was all messed up, but we got to come come at 1 and we were home by 1:30. I finally got him back on his coeect feeding schedule and his new med schedule. They added lasix every other day, added zantac just in case he gets any reflux, and dropped his potassium from 4 times a day to twice a day. Also his antibiotic is done as of tonight, so this now leaves us with a med schedule that is so much easier and allows time in there for naps longer then and hour or so.. YAY for naps.. ha ha

We now have to make an appointment with his pedi to see him this week for a follow up and make an appointment to see the pulmonary doctor too. Hopefully we can get that appointment on Wed since we already have to be at Children's on Wed morning..
Through it all Aiden did well. After all those pokes for the IV and then getting blood work drawn every day, he is still a happy sleepy little peanut, who trust me has his moments of grump and fustration but is still awesome and wonderful and maybe the cutest baby in the world..
Who right now is napping so I am going to try and sneek on in too. Although as I type this he will probably wake up and you know the rest from there. A mommy's work is never done..
And to all you men (and some women) who think staying home with this kids is a piece of cake, You have no idea, it is definetly a full time job in its self.
In the end it is so worth it though to have my little boy here with me and growing big and strong. Opps speak of the devil I hear him now.. So i will keep you all posted on how this week plays out.. Love and Hugs to you all..

November 8, 2006

Well the doctor appointments for today went well. The eye doctor checked Aiden's eyes and the ROP is completely gone. Because he had laser surgery done perviously we have to now see her in 6 months, but if he never had laser she sadi tehy look so good we wouldn't have to see her for a year. WOW big change from every two weeks huh? As for the surgon, well he took a look at Aiden and said he looks good. He gave us the ok to take a tubby and not worry about the G-tube being submerged under water. He said the soap and water may do it some good, just to make sure we dry it off well. So that may be a project for tomorrow or Friday. We'll see how it goes now that I have no appointments lined up until next week. So we don't have to see the surgon again for 6 months either unless something happens to his umbilical hernia (which is very unusual for something to go wrong) we are to just watch him and see if it corrects. If it doesn't by the age of 2-3 then they will correct it for him by doing surgery.

All in all it's been a good day. Aiden has slept alot today. Partly because he was in his car seat and he seems to LOVE it and riding in the car. Partly cause he had his eye exam and he always seems to sleep a lot after one of them. Let's home he sleeps a bit longer so mamma bear can get some Zzz's too. I tried to nap a little while ago, and you'd think I'd fall asleep as soon as my head was down on the pillow but I couldn't. So I'm still awake, running on god knows what at this point. I know new moms usually only have to deal with feeding and changing diapers through out the night and not giving meds on a crazy shcedule too, but I give all new moms weather there in my shoes or someone elses, props for doing this. Cause I'll be the first to admit... IT'S HARD!!! And if your a single mom or have a man who doesn't do crap, or have twins or more, GOD BLESS YOU, cause PHEW... I'm tired.. Yes I will admit it, I am extreamly tired, but still so glad and giddy that Aiden is home. I would not trade it for anything in the world.

And although we are still not on a schedule, and I get grumpy with him, I'm very greatful I have Chuck to do this with.
So baby, I love you, and I know I get annoyed and grouchy, but I appreciate all you do and try to do. It's going to take us a while to get on track so thank you for putting up with me being a grump at times. Just don't let me try to be super women and do it all. Cause I know how I am and will try LOL! Just give me a kick in the butt and remind me I am human too.

Here are pics of Aiden all ready to go in his car seat.. Already falling asleep..

November 7, 2006

Our first 24 hours home and look, we are still standing..
Aiden seems to enjoy home much better then the NICU and I enjoy him home a lot more then driving to the NICU to "visit". It's awesome to have him here with us, just AWESOME!!

I will say this, I'm tired.. And I knew I would be, but PHEW.. sleeping in 2 hours naps stinks. Every so often I can get maybe 3 or 4 hrs if I am really lucky, but so far it's 2 hours here and our there. Schedule has become a big word around here. Right now it's Aiden's meds and feeding that keeps us going during the wee hours of the morning and the fact that he seems to have his days and nights confused.

We went to the pediatrician today and all was good. The visiting nurse came today too. She fell in love with Aiden already, but that's easy I think. The doc told up so try and wake him through out the day about evey two hours if he sleeps a lot to get him to stay up and then sleep more at night. It will help flip flop his days and nights back to normal. Now with that said, have ya seen my son... When he is sleeping, he is sleeping. You can wake him and 5 seconds later he is out cold again. (Just like his daddy) So this will be a project for the week. He does seem to like home enought to sleep better. Oh and he is now weighing in at a bit 8 pounds 7 ounces. What can I say the boy likes to eat, and it's real weight cause he doesn't seem puffy at all since he has been home, but it's only been a night so far.

Well right now he is sleeping and not due for another med for an hour an a half so I am going to try and take another nap. THen I have a two hour span before he needs to be feed at 4 am. Lets keep our fingers crossed he sleeps through til 4. That would be super fantastic.

Tomorrow we see the eye doctor and the surgon I'll let you all know how that goes too.
Enjoy the new pics of Aiden's day home.. He's so cute..

November 6, 2006

Wooooooo Hoooooooo!!! He's home.. Yes HOME!!!
I am so excited!! So far it's been about 9 hours and we are good. The feeds are going fine, I'm fine doing his meds, and his belly looks better too. He still HATES having the spot cleaned and I can see why. It's still sore and red but not as bad as Ihave seen it. He's on the antibiotics for 6 days longer and hopefully that will do the trick. We see the pedi tomorrow and the visiting nurse should be by. I'm not sure when cause no one called me to let me know so I guess it will be a bit of a surprise. I hope she doesn't come when we are not home..

So... So far so good. Aiden took a 5 hr nap, daddy took a 4 hr nap and mommy took a 30 min nap.. Hmm somethings wrong with that picture (ha ha).

But while they were sleeping I got his stuff from the hospital put away. Did a few things around here, and got all his meds and formula all orginized.

Now we will have to see how the night goes. I'm sure I'll be checking him every 2 minutes..
But for that update you will have to wait until tomorrow..

November 5, 2006

Well I didn't go in today to see my peanut, but I called and checked on him during the day and tonight. He's doing fine they said. He lost his IV about 7am and they tried twice to get a new one in but had no luck. So the nurse decided to wait since his med was not due until 2pm she figured she'd give him a rest. The doctor then decided to change his antibiotics back to PO (bu mouth) rather then IV since his belly looked better. It is still red and still draining but not as much and surgery said they think is is bial and formula from the belly. Either way I won't rest til it heals up more and none of that yukky stuff is coming out.

However the reason I don't feel super guilty for not going in tonight is because we are a go for tomorrow. AIDEN IS COMING HOME!!!!!! Yes.. Home!!

Discharge is at 11 am so we will be there about 10. I'm sure it will take longer since I've never seen any one leave at 11.. But just the fact that tomorrow I won't have to leave with out him is super..
SO today I finished up the house, washed Aiden's laundry and put it away. Did his bedding, and got his changing pad for the table. Put the car seat base in the car (let me tell you that was a trip). And cleaned up the house with some help from Aiden's Gommie. I did a lot yesterday but today was the left over stuff. I got all his meds from the pharmacy so far and I've used his feeding pump once so i know what I'm doing. I've given him his meds, drawn them up, changed him, feed him, and cleaned his belly. SO far I'm ok with it all. Now it's just getting him home.. One night of sleep and he will be here. The funny thing is, I know I need to sleep for tomorrow is a big day, but I don't know if I'll be able too. Even Chuck chose not to go into the NICU tonight because he knew if he went in he'd stay until tomorrow morning cause he doesn't want to leave with out him. It is a bit surreal though. We have been waiting so long. It will be just about 5 months and it has just been a roller coaster ride.
Some one pinch me cause I think I'm dreaming.. My baby boy is really coming home..

November 4, 2006

Good news is Aiden passed his car seat test.. Funny thing was I wasn't even worried about that. But he did fine. Sat in the car seat for 45 mins, mad a fes grunts and then wasgood to go..

Yukky news is, we went in to see him today and he had an IV in his hand. THey put one in to start him on IV antibiotics. Even though he was getting them PO (by mouth) or in his case right to the belly by the g-tube, IV meds work faster. Well his G-tube site is still red and was draining some yukky greenish stuff. His nurse decided to culture it because she didn't liek the looks of it. We were told that he will have "normal" drainage since he doesn't have a "balloon" behind his tube. He has what hey call a "mushroom" which is a disc that stopts the tube from coming out, but can still have a bit of drainage. SO, needless to say, what is draining out is yukky and not "normal" in my eyes. A doctor tonight said it is very common for the site to get red and irritated before it heals up correctly, but I feel so bad for him because you can tell it's sore and for the love of god, the kid has been through enough already. Now after all this he has a tube coming out of his belly that has to be hurting him. UGH!!!!!!!!!
They are giving him tylenol and will be sending him home on PO antibiotics for 5 days, however they told us that if by Monday the site doesn't look better and doesn't stop draining the greenish stuff, then Aiden will buy himself a little more time in the NICU.

Now I know that if this doesn't clear up bu Monday then he is better off there then home. I don't want him to come home and get and infection and end up sicker. With his track record he'd get a sepsis infection from it and end up back in the hospital and I DON'T WANT THAT AT ALL.. But I am hoping with all my might that it clears up and heals correctly and stops hurting him. That he can come home and be a normal baby, or as normal as we can make it for him. I know the g-tube is a good thing but I just want it to go smooth for him. Enough bumps in the road..

So please all, pray for Aiden that this all goes well. That his belly will heal up nice and clean and stop hurting him. That he'll get home and grow and have the g-tube out asap. I just want him to be able to be a baby and not have all this baggage. I know he doesn know any different but I'm sure you know where I am coming from.

November 2, 2006

Well a minor change today. Our coming home dayis now Monday. We had the training with the company that supplies the oxygen and G-tube stuff and that went well. So since on week ends they have an on call number it is better that Aiden comes home monday so if we need the company to com out for "anything" they can. On a Sunday it would be more difficult. So one extra day but I'm ok with that.
He was a bit fussy today here and there. i tink his tummy is sore and he doens't know why. They started him on antibiotics too cause his g-tube spot is a bit red and they rather be safe then sorry. However it is a med he can take through the tub. An oral antibiotic so no IV's and no prolong stays at the NICU.

I am very excited about Aiden coming home, but it's sad to leave his primary team that I have come to love. I may get in trouble for saying there real names here but so be it. We are out of there soon and if someone gets up set for me saying good things about there staff then oh well.

With that said I want to say Thank You to Aiden's Nurses...

Julie.. You have been Aiden's voice when we couldn't be. You've protected him like he was your own and we love you for that. I don't think I would have made it through the NICU stay with out you in our life. I will miss you more then you will know and hope you keep in touch with us. It makes me cry just typing this.

Betsy.. Thank you for being you. You made our stay at the NICU so much easier. You have a personality that many nurses should have. Thank you for falling in love with Aiden and taking such good care of him. We will all miss you..

Lillian.. You rock! Aiden's other protector. Thank you for so much for always standing up for our peanut when we couldn't be there. I will miss you and can't wait to visit.

Christine.. Maybe it was the hormones (ha ha) but you cared for Aiden like he was your growing baby. Thank you for all you did for him..

Kathleen.. You were there the night Aiden got really sick and got us through that. It means so much. THank you for all you've done.

** You all have done so much for us and Aiden, and yes I know "it's your job" but as I said today, some people do there job and some people so there job and much more.
I've grown very close to some of you and will miss you so much. You will always be remembered and I will forever be greatful. I thank you form the bottom of my heart for all you have done. Not just taking care of Aiden, but in so many ways taking care of me.
My heart hurts and misses you guys already, but I know this new road will so be worth it. I hope you will keep in touch with us and watch Aiden grow big and strong.. Again THANK YOU!!**

November 1, 2006

Aiden is doing well today considering he had so much going on yesterday. They took him off then ventilator about 3:30AM and moved him back to the intermediate NICU room about 8AM this morning. He's done so good. He got his first feed at 4PM today and they start with half doses and will increase over 24 hours to full feeds. So far so good and the word it that SUNDAY will be the big day!!! We have to go in tomorrow and bring his car seat so they can do his car seat test either tomorrow night or sometime on Friday. Then we have to meet with the G-tube company and the oxygen company and be trained on how to care for the machines and the tube. That is tomorrow at noon. After that we have to get his perscriptions filled and bring them back in to the NICU to show we can measure up the correct doses and we are good. All we have to do then is wait until Sunday. Sunday Sunday SUNDAY!!! My baby is coming home!!! I can't wait. There is so much to do still and all I want to do right now is just yell to everyone he is coming home.. HOOOOOMMMMMEEEE!!!!!!!!!!!

So far we have the follow up appointments with Neuro, and Audiology. We still have to get the list of the rest of them. There will be a lot but some of them are spanned out a bit. Neuro is in January, Audio is in December. He'll have a follow up for his lungs, and then appointments with the pedi. He'll be back and forth for so many things for a while I am sure. We will also have early intervention to go to and he'll have a visiting nurse for a little while too.

I'm sure it's going to be a bit over whelming, but I am ready for this. I really am.. I know I'm going to be tired and worried and all that, but I already am. At least home he will be with us and I no longer have to leave him at the NICU. I'll know every time he's awake and when he's sleeping. I'll be there for his care and feeds. I'll be there right next to him when he cries and wants one of us to pick him up. It's all up to me and Chuck now and as scary as that is, it's a good feeling to finally be a mom in the full sence.

And althought I thought the last few days would seem long. With as much as I need to do, I am starting to feel like I don't have enough time, so I think the next few days are going to fly by..

October 31, 2006

Happy Halloween to my baby boy who has had one heck of a day.. 143 days in the NICU and we are almost out of there..
Today Aiden had his surgery and it went well.. They did the G-tube first and got to do it the "easy" way. They did the peg procedure rather then an open. A peg is when they insert a scope so they can see where they are going and do it that way. An open is when they can't use the scope due to scar tissue blocking or for other reasons and then they have to make a larger cut on the outside and it takes longer to heal. Well although Aiden has scar tissue, it didn't stop the scope, they said it went smoother then they anticipated and they were very pleased. Then they did the hernia repair which was quick and easy too and after that they did the circumcision. A big trick or treat day that I am sure was more of a trick then any sort of treat. The treat will be that once they can get him off the vent and stable on the oxygen again it will just be a matter of days before he comes home.
We are looking at anytime between Saturday and Monday.. The thought of that is just craziness to me. I am so trilled and excited and scared and emotional about it all.

Today was hard for me. Walking him to Children's for surgery was ok, but when the nurse took him and said we'll take good care of him I started to cry. I didn't want to leave him. I knew in my heart he'd be fine, but I was still worried and didn't want him feeling any pain. I didn't want him to have to get any of this done.

But it's over and almost a new day. That means one day closer to Aiden being home. Not having to drive to the NICU everyday. Not having to call the Nicu and check on him cause I'll be right next to him. Not having to miss him every second, cause he will be right here with us..

Just a few more days little man and then you can be home with us and growing big and strong. I can't wait for the day you can walk into that NICU and say hi to your nurses. For them to all see the little one that no one thought would be here today. My miracle!! My heart!! I love you!!!

October 30, 2006

Tomorrow is the day. I have to admit I'm scared. I don't want Aiden to be uncomfotable or in any pain. I don't want him to be going through this, but I know right now it's for the best. It just sucks that I can't "fix" it for him. So all I am going to ask is for everyone to pray tomorrow everything goes well. Fast, Quick, and Smooth...

As I promised here are some new pics.. He was not in the mood today so I only got a few pics of him in his Vampire costume, but I did get a few in his little hat and in all white. He was a pumpkin goast ha ha ha.. It wasn't planned, just funny that he remined me of a little goast wearing the tshirt he had on tonight.. Enjoy

October 29, 2006

Happy 20 Weeks Aiden!!!!
It's been a good week end, my peanut has been happier the last two days. It's strange, he goes in cycles. A few days he is really cranky (I mean really really cranky) then he gets it together and is fine for a week or two. I know babies will be babies, but these are the times you wish they could talk just to tell you what is wrong.

I starting to get super excited about his home coming. I don't want to jinx it, but I'm counting the days. Just 8 more days to go (or less) and he should be home...

Other then that there isn't much to update. He did lose the IV in his head, which I figured he would. They tried to keep it in until surgery on Tuesday, but I knew it was a long shot. They just figured if they could then he wouldn't have to get another poke for a new one come Tuesday.

And for you picture lovers, I will have some very special halloween pics for you soon. Maybe even tomorrow.. The nurse dressed him up in the costume I got him and took a few for me as a surprise but since I don't have a scanner I can't put them on line. So tomorrow we are going to dress him up again and take some with my cam so that way I have them and can save them to the computer like all his other pics. All I can say is wait til you see him.. OMG he looks sooooo cute.. Hee Hee

October 27, 2006

It"s Friday and today would have been the big operation day, but now we have to wait until Tuesday. Tuesday is now the day it will all happen, which means Aiden could come home between Saturday and Monday. YAY!!! I am so excited and I can't wait. It's going to be hard, I know, but I'll have Chuck and we will be all home and together.

I will say I got my first bout of fustration the other day. Part of it was I was over tired and well that will make anyone cranky too. I'm not sure what his problem was on Monday but he was cranky and irritable. He wanted no part of anyone and was so tired but kept fighting it. It took him so long to settle down it seemed. Aiden was having a day on Tuesday, and I didn't see him that day cause I was home and had the sniffles so I wanted to be cautious and didn't want him to get sick if I was getting sick. I later discovered that it was from all the dusting and cleaning and moving stuff around I was doing that it stuffed up my head and made me feel terrible.
So Wednesday he had a great day and I went in to see him and stayed for a long time. We did our routine and he fell asleep about 7:15 pm, so I put him to bed and went to go grab something to eat in the cafe. I came back up at 8pm and he was awake. His nurse just got done changing his diaper and doing him up and he was a wild man. He was so aggrivated he wanted no part of nothing. I held him for a while and he finally calmed down but refused to go to sleep. His eyes would get heavy but when ever they got close to closing he'd fight it and wake up again. This went on for 5 hours. YES, he was up for 5 hours straight and for 4 of them I was holding him and rockign him to keep him for being so fussy. One minute he'd want his binki, the next he didn't, then he's start to fall asleep then he's jolt his eyes back open and cry. I know I now welcome to motherhood. I finally had to pass him to the nurse becuase it was close to midnight and I needed to mve my car out of the parking garage. I felt so bad handing him over but I was so over tired at that point from this crazy week and I had to work in the morning. Needless to say he was awake uptil a little after 1 AM and then went to sleep. You would think after that he'd sleep for hours but he didn't.
I'm starting to wonder if it is cause he is still hungry. He gets cranky right before feedings and once his belly is full most times he settles down some, but not all the time. It's like he is saying "hey people I am still hungry and I want more". That is what makes it hard. With a baby eathing from a bottle you can give them there 2 or 3 ounces and if they want more give them more, until they are full and stop eating. But with Aiden being feed through his NG tube, they pump in 78 cc's bases on his weight and that's it. The reason I wonder is because of the way he acts (like he is still hungry) and when I see babies that weigh 2 pounds less then Aiden and take 10 to 15 cc's more then him before they are happy.
I wonder if anyone else who has a baby on a NG and who then got a G-tube wondered if they were still hungry after giving them the perscribed amount of formula.. If so please comment cause I could use the advise. I'll have to als the nurse or the doctor too and see what they say.

Well I'm going in soon to see him, so I will update later if there is any new news. Until then thanks for reading and thanks for all your blessings. The countdown is on.... Go Aiden Go!!

October 26, 2006

Today is the last day for the antibiotics, too bad in the last 3 days he had to get two new IV's. The last one in his foot he kicked it out. Once just disconnecting the connection and the second time they had to pull it cause it just leaked all over. Unfortunetly for Aiden the best place for the next one was in his head. I hate when he has to get IV's but I hate it more when there in the head. They just look like they hurt and all I can imagine when they have to flush it or give a med in it is that it feels like when you drink a slurpee really fast and get brain freeze.. OUCH!
The first IV in his head lasted until today, then he had to get a new one. Yuk! A new IV for 24 hours. I assume they will take it out tomorrow or even tonight after the last dose of antibiotics goes in. He'll need another one for surgery, but that's not for a few more days.
Yes it has been postponed. They decided to change it until Tuesday (Halloween) so they can do it all together. The team doing the circ and the hernia repair could do it tomorrow, but the GI team couldn't, they could do it on Monday. Well Monday didn't work for the other team. However Tuesday did, so Tuesday it is. It only postponed our home coming 4 days or so, which isn't that bad. At least it's not weeks, I can deal with 4 days.

Aiden's room is just about done and orginized. I have to add a few things (dresser, changing table, a touch here and a touch there) but right now it's fine. He'll be sleeping in our room for a while anyway so I have more time to do the touches.

I'm also out of work now too. With thinking Aiden was having his surgery tomorrow it was set into motion already for today to be my last day, that gave me tomorrow and the weekend for the most part to get everything her straight. Well now I have a few more days. We also have to take the CPR class at the hospital, and then learn his meds and how to draw them up (which I am fine with, I've done it once and it's really easy) Then we have to learn the G-tube care and oxygen requirements. I think both of them will be pretty straight forward to.
As for the job, well my intentions were to go back part time (25 hrs a week vs 37.5 that is full time) come January, but I just found out from work yesterday before I left that my part time has not been approved. They told me to resubmit it in January and they will revisit the issue. SO I don't know right now if I even have a job to go to since I know I can't go back full time. With our schedules and Aiden it's not possible. (Yes this is my venting)
My request made it up the ladder with no problems until it got closer to the top, then it was just squashed. The part that gets me is, we have part time people, who for the reasons of having kids when part time. Now I am not doing it to just work less hours, I am doing it cause Aiden nedds one of us here 24/7 and can't be cared for by someone else. He's going to be on oxygen and have a G-tube and I can't risk something happening to him because someone was babysitting so I could cover my 3 hr gap at work that my hours cross Chuck's hours. It's just pathedic how they operate. Chuck thinks that it may be a blessing in a way, that it's my chance to get out of there and find a job that I love and treats me like aperson and not a number. But inside I'm am really scared. We can't make it on just his income, and it seems the last few years, finding a job has become really hard. More so with no college degree.
A lady at work told me that she believes that god doesn't close one door with out opening another, so I have to believe it will all work out. Something will pull through for us. I know money isn't everything, but unfortunetly it is what makes the world go round and in this world you need it to get by and live.

All I can do is do my best and my first priority is Aiden, his needs are first and if that means me staying home then so be it. If I have to break down and ask for help then I'll swallow my pride and do just that. Until then, I'm still standing tall and going to enjoy the fact that I don't have to go to work today.. YAY!!

October 23, 2006

Well Aiden went for his test at Childrens and it came back normal so that is good. Now it's just waiting for Friday. Surgery has been by every day to check on him at the wee hours of the morning. Yes they do there rounds between about 1 am and 4 am. So last night the doc said that every thing is all set for Friday for the hernia repair and the circumcision, they just have to make sure the GI team can do the G-tube on Friday also. So far it looks good, but you know doctors, they can change things at any minute. Either way the lates he will have it done is Monday, I just don't want them to do it in two different days. I want it all in one trip so he doesn't have to be put through all that more then once. That isn't fair to him and he's been through enough already.

I am also still waiting to hear when they are going to teach us what to do with his oxygen when he is home, and the G tube care. They have to set up the visiting nurse and paper work for early intervention. Oh there is still so much to do, i have a feeling they are going to leave so much til the end that it's going to make me feel super over whelmed again.
But for now I am doing my best to get ready. I am waiting for Aiden's dresser to be done so I can store his clothes and get all the bags out of his room. I'm not sure that is going to be ready in time but we will see. I got the book case for his room today, and the rods for the closet the other day so it's coming along. I know I'll have a few days to since my last day at work is Thursday so I can get everything else done. It's going to be so strange to have him finally home..

We had a good night today. He woke up and sat up with me for a while, then got fussy in the end when he was tired but kept fighting it. He thinks he is going to miss something. He is also doing really good sleeping through the night. He finally fell asleep abotu 10 pm and will probably sleep until about 3 or 4, then he goes back to sleep til about 7-7:30, stays up for about two hours and will sleep again right through noon.. Pretty good eh?

Well we will see what tomorrow brings..

October 22, 2006

Happy 19 Weeks Aiden!!!
It's been a pretty calm week end for Mr. Man, right now it's just a waiting game to see how things pan out this week. The coud down has begun.
He did have his eye exam today and they look so much better. No more stages of ROP for what the report shows, and I was told the doctor was very pleased at what she saw. He also has a VCUG tomorrow. This is a test where they take him to Children's and fill his bladder to see if the fluid refluxes back to his kidneys at all. There doing this test because of the UTI Aiden previously had. Since it's unusal for a baby to get one "just because" they are looking for a reason it may have happened. So once they fill him up, if it shows reflux then they will know, if it doesn't then we just move on. I'm just happy it's a simple test and not anything that requires the OR to do. Once they see what they need to, he pees out the fluid and it's all done. YAY..

We also have a few rules for Aiden's home coming (per the NICU)
No KIDS over the house, No kids in Aiden's face, and No crowded places like malls or parties. Also no smoking (whichi s not an issue because we don't smoke and I wouldn't allow it around Aiden anyways. Added to that, if anyone has been smoking, they can't hold him, touch him, non of that with out washing and using purell. They also need to change there clothes. SO plain and simple No Smoke, and if you smoke stay away from my kid..
As for the No kids rule, well that is due to RSV season. Aiden comes home, smack dab in the middle of it and RSV is very bad for a preemie. It could cause a lot of problems or even death for a preemie and more so for one who has CLD like Aiden does.
Most of us get RSV, it shows up in us or kids like a runny nose or a sneeze and goes away cause our body is strong enough to fight it so we just think it's the "common cold" however it's a really bad bug that Aiden must avoid at all cost. He will get the shot for it before he leaves the NICU to come home and then will have to go to the pedi for the shot once a month until RSV season is over which is the end of March. I am sure there will be a few hearts that are broken for the little ones waiting patiently to see Aiden, but unfortunetly it's not a risk I am willing to take to have a visit that he won't really remember anyways.
As for the holidays, well we will see how that goes. We might have to stay home. So far word is that it is possible depending on how he is doing and if no one has a cold. But he is not to be passed around to be held by a million people. He again is not to have kids hovering over him or in his face and every one must wash there hands and use purell.

Funny I always said I didn't want to be one of them crazy moms who are nuts about washing hands and who holds there baby. Things work out in a funny way cause now I have to be a "crazy mom" but it's to protect him from the things that he isn't strong enough to fight off right now. So although it may take a bit of adjusting for some people, and lots of waiting for others, I am sure people will try and understand we are doing what we need to do for our peanut.

October 19, 2006

Well Aiden didn't pass his swallow study yesterday. It showed he is still silent aspirating. Which means it is tiny amounts and he isn't coughing to clear his air way. So we wait another 4 weeks and he has another study then. In the mean time, we have made the decision for him to get the G-tube put in so he can come home and grow and thrive and be a normal healthy baby.

Today he had his consult with surgery and his MRI done. (Now we know we are close to coming home, that is when they do the MRI) Surgery is going to try and get him in for Friday Oct 27th, they want him to finsh the 14 days of antibiotics first and that will be all done on the 26th. Then if they get him in on Friday and he has no issues with the procedures, he will be home in 3 to 5 days after that. YES this mean he may be home by halloween. Can you believe it. I cried today just thinking of it, and I cried yesterday. I am so excited and yet scared to no end. I want him home but I want him safe. There he has nurses doctors and a 1001 machines. Here he has me and chuck, but I am requesting they send him home with a monitor so we can hook him up at night while we sleep too. I don't feel comfy with just a spot checker. That is a monitor device you just hook up every hour or so to check there oxygen level at that moment. With the regular monitor it will be like the one in the hospital just smaller and will beep if he dsats. Considering when he gets sicks he seems to stop breathing, I don't think it's an odd request and as one of the nurses on tonight said. Even if we have to kick and scream, make them get us a monitor. Well I can kick and scream with the best of them.

So that is the latest. Maybe as soon as halloween my penaut will be home. If not then no later then a week after that if all goes well. Lets put our energy into all them prayers and hope all goes as planned and Aiden comes home and is safe and happy with his mommy and daddy.

October 17, 2006

Aiden had a wonderful day today. He was a bit fussy but feeling so much better then he was last week when he got sick. He is also really puffy so I know he's got a ton of fluid on board. They talked about giving him lasix again but wanted to wait until tomorrow in fear it would mess up his electrolytes.
As for tomorrow we have our next swallow study to see if he has matured any more. i am keepig my fingers crossed to see how he does. I am hoping he passes and we can move on, but if not, then so be it. I'm learning the hard way that no matter what I do, I can not control things like this. It stinks and it's hard at times but all i can do is be there for Aiden and make the best decisions possible for him. So that is what I am trying to do.
The GI team also came by to look at him, and want to talk to the surgons first to see if they want to handle the G-tube placement due to all the issues Aiden had with the NEC and the scar tissue he now has from it all. Once I know more I will be sure to post it.

Here is hoping tomorrow goes well.. Until then sleep well my little man.. i love you... xox

October 16, 2006

Aiden had a great week end, he is feeling much better. The other day he spent about 2 hours awake and just looking around. Chuck was amazed how alert he was since he doesn't usually get to see him like that. He was happy and smailing and just being "nosey Aiden" ha ha.

As for his updates, well we have decided on the G-tube placement, and feel it's for the best, since it is only temporary and will help Aiden in a lot of ways. I can not fear the thought he may have it longer thenI want, because right now it is waht he needs and if he has it longer then so be it. As long as he is growing and healthy and happy then that is all that matters. He'll be home with us and thriving and that is better then being in a hospital and missing this time to bond with us. I can't imagine him being in a rehab for another 3 to 4 months. NO WAY!

Right now he has 10 days left of the antibiotics and then we can think about the g-tube. When he has that done they will also do the "other stuff" and if all goes as planned he could be home a week later.. That is just strange to say.. Three weeks rather then 6 to 8 weeks longer.. All I know is Chuck better move his bottom and finsh the dresser for Aiden's room.. HA HA

SO keep praying and sending good thoughts and I thank you all for keeping track of us. Your blessings mean so much. And to "jp" you left a comment to read another preemie blog that is on blogspot. Well thank you and just so you know, me and Andy, Beau's mom are really good friends (in person) we meet at the hospital when Aiden and Beau were born. It's a small world huh..
Here are som new pics too of Aiden's last tubby (10/16/06) He loved it, in his new tubby chair..

October 13, 2006

We toured the two rehabs today, and I have to say, one of them we didn't like at all. It was just not what I thought it would be and not very "kid friendly" from my view. It is not a place I would want Aiden. I am sure what they do there is great for some kids and babies but it is not the place I want to place him, and neither does Chuck. The second place I liked a lot better. Chuck was still on the side line about it. If he had to choose then it would be the second place we saw and not the first, but in all honesty, we'd rather just have him home and not have to go to either. He has another swallow study on Wednesday, and by then we will have our decision made. In a way I think I have already made my decision, I am just waiting for Chuck to voice what he thinks and back me. With that said, I've decided to let Aiden get the G-tube placment if CHuck agrees with me. After all the talking I've done with doctors and nurses and a friend I met months ago at the NICU who's little boy also has a G-tube, i've come to realize I am not so scared of it and that Aiden could really benifit from it. There is that long shot that he could have it for years, and I have to say at this point, so be it. If it helps him grow and be healthy and happy then I will do it.
As for his "bug" he has strep B so they changed his antibiotic again and he will get it for 7 days. Then no more bugs, no more IV's and it's time to move forward. This means, plans to fix his hernia (which come to find out is not as bad as they thought it was, and he only has one in his private area not two) YAY..
From what I am told they will do the hernia fix, and the G-tube placement all at the same time. They will also circumcise him at the same time too.. A 3 for 1 deal, and that way he won't feel anything cause he will be put out, and he will not have to go for more then one operation, which is better for him... The road is getting closer, and this I am thankful for.
I do have to say I broke down today. I felt like I was cracking and just lost it in the car when we got home. All these decisions to make for Aiden, and what to do, on top of family issues, work, bills, and making ends meet. Some days I feel like I have the weight of the world sitting on my shoulders. It's hard and today I just felt it all, I felt like I couldn't breath and I was just all alone. I get scared that what I am choosing is not the right things, that I am some what in control of this innocent little person and I don't know if what I am doing is best for him.
I thank Chuck for pulling me back together today. For letting me stress out and cry and wrapping me back up so i don't become unglued. He laughed when I told him I didn't break, I just got a hair line fracture. I know I have to be strong for Aiden, and I will be, we are close to the end, I can't lose it now, but for a moment I just needed to release.
I will say this, one of the rehabs mentioned something about Aiden being there for months.. Not days, not weeks, MONTHS... In that case, YES people, I would crack. I would be in a padded room, medicated.. That i could not handle. Three to four more months of this would just mess up my head, not to mention, break my heart. Aiden is 4 months old and I can't imagine him living the first 8 months of his life in a hospital setting. There is just no way...
What ever it takes I will do, but I am bringing my baby boy home, and soooooon!!! Like in weeks, no months..

Thank you everyone who has been a shoulder to lean on and an ear to fill. Thank you to every one who has prayed for Aiden and thought about us through out there daily grind. It truly means a lot. I want to take this moment to ask all of you to not only pray for Aiden tonight but pray for my uncle to have a safe journey to heaven. He was my moms little brother and passed away a few days ago. I can only say that I take peace in the fact that now he doesn't have to fight the battle he was fighting and won't feel any more pain. We love you Uncle Richie...
Say Hi to my little man up there and know that we all love you.

October 12, 2006

SO.. Aiden's swallow study for today was cancelled. We didn't know this until we got there but I have to agree that if he isn't feeling well then he shouldn't go.
As for his infection well, his urine culture grew back which means he has a UTI (urinary track infection) and his blood culture grew back with a strain of strep. UGH!!! The doctor said it is a bit unusual for him to have two different bacteria infections, so it is possible that one is a false positive and was contaminted some how, but right now they are treating him with antibiotics that cover the strep and the UTI. He did seem to have a bit more energy today but you could tell he still wasn't feeling all that great. Lets hope he can kick these buggies soon and feel better fast. I hate seeing him feel yukky. No mommy wants there little man feeling blah.

I send you my love baby boy and lots of kisses from me and daddy to make you better. xoxo

October 11, 2006

Happy 4 Months Aiden!!!

Well I'd like to say today went super, BUT that isn't the case. Aiden had a great morning and took a tubby, had a spa treatment, and was in a great mood all day until about 2. Then all hell set in..
Ultrasound came to do the ultrasound for urology of his "private area" so they could assess the hernia's and see what was what. They need to take a peek at a few things. There is usually 2 techs that so the ultrasound. The first one did hers, and the second one started hers. She was in the middle of it and Aiden was sleeping through it all, then all of a sudden he "checked out". He got really pale and flush and just stopped breathing. His heart rate dropped to 74 and his O2 sats went as low as 23. He was gray and limp and they pumped the O2 up to 100% and nothing. They then repositioned him and bagged him, gave him a few puffs and again NOTHING. So they did it again.. Repositioned, a few more puffs and still nothing. THEN he suddenly took a spontaneous breath and started crying. After that his heart rate shot up to 220. I assume it was the adrenalin kicking in, his body own kick-start.
After that he spiked a fever of 101. They gave him some Tylenol and took him out of his PJ's to cool off. I arrived a bit after this. When I got there Mickey told me what happened and we just watched him. He was so tired and just out of it. He seemed ok and his heart rate went down, but was still a bit high. It was ranging between 185 and 205. I held him on my chest in just his diaper to keep him cool and relaxed. He settled in with me and fell asleep for a while. I took his temp every 45 mins and it was 99.1 or 99.2 most of the times. He did seem better and very happy to be with mommy. We waited for his CBC to come back and his platelets were fine but his white blood count was low, which usually means an infection or something.
It could even be a reaction to his 4-month vaccinations he got yesterday. I read his chart for the last 24 hrs and he has a 20 sec spell at about 5:15 in the AM, so if it turns out to be the shots I wouldn't be surprised. It could even be just a common cold like you and I get, but we'll know more in a few days.
All was going good and I had been holding Aiden for about 2 1/2 hours and then it happened again. I looked at his monitor and said to his nurse, his numbers are fluky and keep going back and forth, something’s up, it’s happening again. Then within about 2 minutes he bottomed out again. This freaked me out big time. We put him in the crib and bagged him again. It was probably about 50 to 60 seconds and then he opened his eyes and cried and then just looked at me to say "mommy what wrong with me, I don't feel so good" Once he saw me he just stared at me, no matter where I moved he was looking only at me. That made me feel better, that maybe I made him feel safer. After this episode they put in an IV to start antibiotics to be safe and decided to do an LP again. They will culture the spinal fluid, and also his urine and blood. They will also do the normal labs on them all too.
He did great through the LP ( I think he was way to tired to even care really) and once he was done they brought him back over to me and I just held him. He went right to sleep and every so often would look at me and pass back out.
I can tell he just doesn't feel good because he didn't really cry, and when he did it was little wimpy cries. he was just pooped out. They even held his 4 pm feed, and usually he is so hungry in about 3 1/2 hours and it didn't faze him that he had not eaten since noontime.
They feed him at 8pm and he tolerated it well. I stayed til almost 11 pm to be with him and see if the tests came back. The LP results cam back as negative, which is good. Now we are just waiting on the cultured, and they take 48 hours before they will be considered negative.

We will just have to hang tight, all I can say is it is easier said then done. Seeing him turn gray in front of me and his lips blue really scared me. After everything we have gone through and all he has fought his way through, I was really scared to see him at this stage be so out of it like he was.

Please everyone, pray... Pray Aiden kicks this bug too and gets better super fast.

Oh and another update I forgot to mention. His eye appointment was yesterday and went well. He is now down to stage 1 ROP and it's getting better. YAY for that..
Just a few more things to do and we can finally get out of the NICU and HOME...

October 9, 2006

Aiden had a great day today, he was in good moods most of the day and night (besides at tubby time) but hey if I woke you up to stick you in a tub you'd be a bit mad too) But he calmed down and liked it at the end. He didn't get the eye exam today due to the holiday, so he has it tomorrow morning. I am also suppose to meet with the pulminary doctor tomorrow, since due to lack of communication, we missed each other today. Aiden will also be getting his 4 month shots tomorrow, so I am sure he may feel a little ikky tomorrow after the shots and the eye exam. YUK!
Not much else other then that so i am posting some new pics from today. Enjoy!

October 8, 2006

Happy 17 weeks Aiden....
There's been no surprises this weekend. It's been pretty calm really. Aiden just about reached the 7 pound mark, but then they gave him a dose of lasix because he was retaining fluid and his lungs sounded a bit junky. You could tell he was working a bit harder to breath because of it, so Friday they gave him the lasix and woooo did he pee. He pee'd a lot too. He dropped 270 grams, that's 9.6 ounces.. As you can imagine, he's now not puffy and looks like my little peanut. Not my pudgy peanut (ha ha). He's been in pretty good moods too and sleeping well. He has his "up" time and stays awake for 2 to 3 hours on a good day. For the most part now, if they didn't have to wake him for diaper changes, he sleeps for a good 5 to 6 hours. Sometimes they even skip a diaper change so he can have the continued sleep with out being disturbed. e's also growing out of some of most of his preemie out fits. Now that just makes me smile. He is in some newborn size things, but still has room in them to grow. He is now down to 6 pounds 5 ounces and is 18 1/2 inches long. He's catching up, and finally falling in his percential for some things. YAY
Tomorrow we are suppose to have an eye exam, so we will have to wait and see how that goes. It may not happen though because of the holiday. Also he has his swallow study on Thursday and then we go tour the rehabs. I was told today that Franciscans has a new program for babies with CLD (Cronic Lung Disease) and eating issues. That they work with them eating and doing PT 3 times a day. From the sounds of it, it seems we are probably going to like them better then Spaulding. I just with it was closer to us, not further away. But like Chuck said, if we have to send him to a rehab, he is going to go to the one that is best for him, and if that happens to be further away for us, then we will have to deal with it. It's all about Aiden and getting him what he needs. Right now though, I am set to keep him where he is. Atleast I have another week before we have to make a decision on moving him.

October 5, 2006

Aiden had his swallow study done today and we had a family meeting with the new attending in the NICU. He didn't pass the swallow study, I hoped he would but figured he wouldn't. He was micro asperating into his lungs a little bit. So we now wait a week and re test him. Basiclly that is all we do, re test every week until he passes. In the family meeting today we went over the test and the option of Aiden getting a Gtube put in. I am NOT happy about that. I know it has some benifits but right now it's not an option for me. I want to give him more time and see if he can get the coordination down to breath suck and swallow. Another option given to us to to finally leave the Brigham and go to a rehab where they will help him learn to eat if that is the only thing keeping us at Brigham right now. With this option, they will get Aiden's hernia's repaired, then set him up to be transfered to the rehab once is is ok to do so. The thought of that is both good and bad. He's be a bit closer to home and a bit closer to "coming home" but on the down side, I'd have to give up my nursing staff in the NICU that I've grown very close to and have to deal with people that I don't know and who don't know Aiden. It's scary to me and a lot to think about. Right now we have to set up appointments to tour the two rehabs then we will have to decide what we think is best for Aiden. As for the G-tube, well that is not a decision I can make over the week end. That one is going to take us a bit longer and like I said I truley think he just needs more time to get things together. If however in 4 to 5 weeks he doesn't have it down, then we really have to take the G-tube option into consideration. It really sucks thinking it's a possibility, but at this point I don't deny the balck and white of things anymore.
He also got an Ecko done of his heart today. not for any reason other then to get a base line picture of what things look like now. It has to do with the pulminary consult that they also did today. We are still waiting to talk to that doctor, who said he will meet with us some time next week. Right now though, Aiden is doing good, and oh yeah, he was taken off his Reglan today. It's a trial week per sa, if things go well then he will stay off of it and if it looks like he could use it, then we will talk about putting him back on, or rather putting him on something else that does the same thing Reglan does, manybe even Pepsid. However I think he is going to be fine with out it. But what do I know, right....

It's going to be a crazy next few weeks. Aiden has an eye exam again next week, then another swallow study. We have to meet with the Pulminary doctor, and tours the rehab centers. I think my only real problem with all this, is making it fit in and trying to go to work too. It won't be too much of an issue for Chuck, but since I work in the day, it's going to pose a problem. Guess we will just have to deal. I'm doingmy best it's all I can do.. and in the mean time fighting a cold that I orignally thought was allergies, now I'm not too sure. I just hope I didn't pass it on to Aiden cause then I will really feel terrible...

October 4, 2006

We are still waiting for the pulminary consult, he was tied up today and didn't come over to see Aiden. However the feeding team cam to evaluate him. They checked him out, I guess the assess his palet and his tongue. Then they give him a bottle and watch the way he sucks and so on. He took about 25 cc's in about 15 minutes and only dsat'd in the begining when it was first introduced to him. I'm not too sure what this means, but they did say it warrented the swallow study, so he is set to have that done tomorrow between 12 noon and 12:30, which Chuck and I will be there for as requested. It should be interesting to see and will tell us for sure if he is apirating at all. If he is then no bottle for a week until he has another study done. If he passes then he can train on a bottle again. We will see, but I think in time he'll do ok, he's just still uncooridinated and immature.

Other then that we had a great night together. He woke up about 4:20pm and was a tiny bit fussy, just normal baby fuss really. Then once I changed him and picked him up he was great. He hung out looking around and at me and sitting on my lap like a big boy for just about 3 hours. He finally fell asleep about 7:30 and slept until I left. If he woke up after I feft I'm not sure, but I'm assuming he slept for a good 4 hours or so.

Well here is hoping tomorrow goes well and there are no more speed bumps.. Fingers crossed (as usual) and we will see... Thank you everyone for all your prayers and support and keep them coming, we can definetly use them..

October 3, 2006

I talked to the doctor today about taking Aiden off Reglan. I looked up some info on it, as I do most things he is taking and I don't like the side effects it can cause. I also wonder if that is what is causeing him to be so cranky. He was a bit better today but not at all like he was a week ago.
I talked to the audioligist today too and she told me once we get closer to being discharged from the NICU that she will help us set up his appointment at children's for the other hearing test. I asked her if I am now to assume that he can't hear me and she said it is still too soon to tell. That the test they do is a plain and simple pass or fail and the sound they send to them is very low like a wisper. That is not to say he can't hear a normal voice tone. For now I am keeping my fingers crossed and hoping for the best. I know it's out of my hands and the only thing I can do it wait.
Aiden is also set up to see the pulminary specialist tomorrow and he will see the "feeding team" from children's tomorrow too. They will evaluate him and his suck and swallow issues. He may also have the swallow study tomorrow but if not then he will be having it on Thursday. It's going to be a busy few days and hopefully a lot of answers will come from it. I'm keeping my head up and hoping for the best possible out come. One more day down... ?? how many to go..

The pictures I posted are from the other day. There Aiden and Nonny (my mom)