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..