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..