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)

October 2, 2006

Aiden is still very cranky at times. It's not like him to be like this either. It's heart breaking when he is crying and upset and nothing I do calms him down. Tonight he was awake with me for 2 hours and for a while he was just fussy. Once his belly was full he was better but still crankier then usual. He also had his hearing test today. I wanted to be there but they didn't tell me he was having it today so I missed it. The out come was, he failed again. Now he has been refered to Childrens for a diagnostic hearing evaluation to determine his hearing status. I guess reality is setting in now. There is a big possiblility that he may be hard of hearing, or worst case, deaf.
I'm struggling with this, along with so many other things. I look around and see babies born so long after Aiden and there already going home. I know there all different, and I know he is the best place to get the care he needs right now to fix the things that need fixing, but it's not helping ease the feeling I have inside. I just want him to be ok and not have to go through anymore crap. I just want him home.

So this is what we have on our plate for this week.. The hearing screening is done, so he won't go for the other one until he comes home. Until then we have to assume he either can or can't hear us, which just sucks. He will probably see the pulminary specialist tomorrow to assess him and see what we can do to get him off oxygen or if he has pulminary hypotension. Then by the end of this week he should go for his swallow study. Then Thursday we have a family meeting with the new doctor and we will go from there.

I know everyone keeps telling me to stay positive, and all in all I think I've done a pretty good job getting through this. But right now I feel like the weight of the world that I've been carring on my shoulders, is getting a bit heavy. My life is consumed with two things right now. Trying to get to work and going to the hospital to be with Aiden. In between that I try my best to eat, sleep, and keep up with the house and bills. I'm finally starting to get to the point where I feel burnt out.
I'm hanging in there, what choice do I have really, and I'm staying positive the best I can, but I'm not to sure I can take many more months of this. I was hoping we were on our last 4 week streach, now it's looking more like 8 weeks, which means Aiden will be 5 1/2 almost 6 months old when he finally gets to come home.

This I will say.. I would not wish this ride on my worst enemy... I dream about having more kids someday, but if I ever have to go through this again, then I'm done, my dream of having 4 will be a little shorter cause another ride on the NICU train and I might end up in a padded room.

October 1, 2006

Happy 16 weeks Aiden...
There isn't much to update on since it's the week end and the new doc in the NICU doesn't come on until tomorrow. We are hoping to have a meeting this week and set the plan in motion to have Aiden looked at by the pulminary specialist and then have the swallow study so we know what is what and can move on from this stand still. Speaking of pulminary, Aiden has been off the oxyger for the better of 2 days now. So I am hoping he will continue to stay off it for good. I know when it comes to bottling he will need a bit to get thim through it, but once he gets it down I think he will be ok. I have faith he will learn to bottle like a normal baby and not have any issues. After all he has been through I can't imagine him having to have to get G-tube put in to eat at home.

Othere then that Aiden has been Aiden, but a little fussy at times. Even when being held. Part of it I think is gas and he's fussy cause he is unfomfortable. But all in all he looks good and is doing well. We just got to get over this current speed bump and move on to the next one.

As for me well I'm tired alot lately and a bit stressed. I'm not sleeping at night no matter how much aI try so getting up in the morning is a killer. I'm doing the best I can though. I know I have to go to work and be there for Aiden, but I know I have to take care of me so i can take care of him. Just some times it's tough to deal with "life" and it's hurdles and take care of yourself the way you should. I can't wait to get to the end of this road.
As a stress breaker, my brother came up this week end and hlped with Aiden's room. I had him draw some of the Animals from his bedding set and I painted them. It looks cute and I'm proud of myself. I found a hidden talent I think. It made me feel better anyways.
And don't worry I used no toxic craft paint so it won't harm the baby, and if and when we buy a house and move some day, we can just paint over it very easily. Now all that is missing is a few pieces of furnature and a wonderful little baby boy named Aiden...

September 29, 2006

It's been a tough day today. Aiden had PT and that went well, but before I got there today I guess he was very cranky. The nurse said he cried and fussed for over two hours. This isn't like him at all. They tried to bottle feed him and he didn't do well. He pushed the bottle away, arched his back and wanted no part of it. After this, at rounds the doctors and nurse decided that they will stop bottle feedings. They don't know if that is what caused his fussing, and since another nurse had mentioned he did really poor and didn't want the bottle at another time, they think that stopping the feeds are the best bet. However the nurse today looked back in the documents and there are no notes of Aiden doing this before, and no one has mentioned it to me, so I was a bit shocked. Either way they have stopped. The plan is to consult the pulminary specialist from Childrens to see Aiden and see if he can assess him and get him off the oxygen he is on. Even though it is a very very low amount, they want to make sure they can get him off and assess to make sure there are no underlining respitory issues. Then he will go for a swollow study to see if he is asperating or if he swollows with no issue when given a bottle. This study won't be done for a week, then if he fails the study he will have to wait 4 days to a week for another one. He can't bottle feed until he passes the swollow study. This just sucks. I know it's in his best interest but i thought we were close to coming home. I was getting my hopes up that we would have him home in a month or so. Now with all this it makes me feel like he will be there for all of October and November.
I don't know how much I can take. I'm not sleeping at night, which makes it harder to get up in the morning to get to work, when I am at work I want to be with Aiden, and when I am with Aiden I just want to cry and take him home. Emotions are setting in. I'm tired all the time, and I'm getting depressed. I don't think I can do this much longer. I am tired of the NICU, tired of the tubes and wires, tired of seeing Aiden and then leaving him behind.
I cried today talking to Chuck ans even though he was on the line I felt so alone. I hate this, I hate all of this, and I wouldn't wish this on my worse enemy. Being in intermediate doesn't help either. We have a new doctor coming on for October, our primary get bumped, and the nurses Aiden has don't really know him. I know part of that contributed to him not doing well on the bottle too. It's just hard, and I feel like I'm falling apart.

Please keep praying that this study goes fine and that we get him off the oxygen. Please pray that nothing else goes wrong and Aiden comes home soon. Please pray that I can stay strong not only for myself but for him so he doesn't feel my fustration.

September 28, 2006

Happy "Birth"-day Aiden... Since today is the day he was suppose to be born.. Or should I say Happy Due date day.. Haa haa.. It's official.. It's a BOY!! Ha Ha!

His IV came out tonight, no more antibiotics. His LP was fine from what we know so far and things are going ok. He bottled twice today as usual. The first time he didn't do so well the nurse said. He took 20 cc's but spelled twice, so she stopped. Then at his 4 pm feed I just thought he was too tired so we didn't bother to try then. He actually slept right through the 4pm feed and woke up at 5 after his belly was full, the little bugger. Then at his 8pm feed he was up and hungry so I tried him myself and he took 15 cc's like a champ. No choking or gagging. I just had to set the pace with him in the begining cause he wanted to just suck it down like it was his binki and that isn't good cause then he will just choke and spell. But he did great. He got it going and did fine. Then I stopped him to burp and relax and he decided he wanted to go to sleep. That was enough eating for him. I waited a bit but he was not waking up. He was cozy and comfy and was probably thinking just fill my belly lady.. I'm hungry and I'm not working for it. So we gavage feed him the rest. Even though he only took 15 I was so proud of him he did it with out spelling.. YAY.. That's my baby boy..
He is also up 50 grams so now he weighs 5 pounds 15 ounces. He is 1 ounce away from being a 6 pounder.. Check that out eh..
I am posting a few pics today, since it is his due date, one of him when he was born and then some from today with his godmother "Gommie" Annette.. It's amazing, just simply amazing at what he has gone through and how far he has come.
Keep praying all.. He will be home soon I just know it in my heart that it's getting closer.

September 27, 2006

Aiden had an LP done today (lumbar puncture) so they can test the spinal fluid and make sure the staph is gone. He did it like a champ they said, which is no surprise to me, cause he seems to go through some things like it's nothing. He has one day left of the antibiotice unless the LP shows something and then he can have his IV out. They also chose to up his diaral to help respitory wise and maybe this will help him not d'sat during bottling. That is another thing he did good at. He got two bottles. One at 4am and another at 4pm and he took over half his feed. His magic mumber is now 30 cc's and he does it well. He did d'sat and had a small spell at the 4am feed, but I also contribute that to having a new nurse who has never had him before and never bottled with him. This is going to be the hard part for me. It's very nerve racking not having my primaries on when he is going through something so important. Don't get me wrong, the other nurses are great, but they don't know Aiden like most of his primary team does.
SO they have decided that he will bottle only twice a day until he gets better at it and the feeds between bottling he will just get through the tube in his nose. It's so close (home) yet still so far away. I can see the light but it's still a long way off. It's going to be an amazing, nerve racking, crazy day when he comes home. I can't wait...
I am still waiting to hear if he is going to have his hearing screening tomorrow too. They told me a 40 weeks, and can you believe it, his due date is tomorrow.. He is now not negitive days old, ha ha, as of tomorrow his corrected age is 1 day old. Funny how that works isn't it. One day old and he is really 111 days old.

September 26, 2006

Oh what a day.... Aiden didn't get moved to intermediate yesterday but that's ok. As I said for personal reasons I am in no rush. In the ICU, I know he will get his primary nurses and in intermediate ya never really know. He also drank from a bottle 4 times yesterday. The first time, at 8am he took about15 cc's, then at noon he was really not into it and only took 10. At his 4pm feed his nurse tried again and he took 20 and we skipped the 8pm try cause he was just too tired. Then at midnight he took 21 cc's. Not bad considering his total feed as of yesterday was 53 cc's and he is still learning.

Then today was a big day. They bumped up his feeds to 130 ml per kg, which means he gets 58 ml's (or cc's) per feed. He took 30 cc's for his 8 am feed by a bottle and did wonderful. They skipped trying him at noon cause he slept right through his do up and tried him at 4 and he took 35 cc's. My boy is doing it.. YAY.. I know there are going to be bumps and it's still going to take time. Lots of time, but he seems to be getting the hang of it. I am so proud of him and so excited. He took over half of his feed by bottle and that is a fantastic start.
They also started him on a new med that he will get twice a day. It's called actigal and it will help his liver process the bili in his blood that causes the jaundice. Since it has not gone down on it's own and has actually gotten worse they decided his liver need a little help. The doc believes this is due to being on the TPN (IV nutrition) for so long. He only has two more days of the antibiotics for the staph infection and his eye exam yesterday went well. The doc was super happy with the results and said besides needing glasses his eyes are well on there way to getting better. YAY YAY YAY!!!!!

We also as of 7pm have graduated to intermediate. We are now not in the ICU unit but in the step up unit. Closer to going home and that is a really good feeling. It is getting harder to leave at night and not be able to take him with us. And he is becoming a momma's boy and knows when I am not there and doesn't like it. The nurse yesterday even said, he knew you were running late and was fussing cause he wasn't being held by me yet. As soon as I got there, he was fine. I didn't even need to hold him, all I needed to do was talk to him and he was happy as can be. But of course I held him.. Hee hee, who wouldn't..

SO, another check on the check list and we are on our way. A few more to check off, and we will be out of there... Now that just seems like crazy talk, as Chuck would say..

September 24, 2006

Yesterday was a good day as was today. They started Aiden on iron suppliments today. They couldn't give it to him before because it can only be taken oral and since he wasn't eating before that wasn't possible. This should help him a lot now from being anemic. Also the cultures they sent to the lab on Friday afternoon have yet to grow out anything so I am hoping that they caught the staph infection early and it's just about gone. He has a few days left of the antibiotics and then he can have the IV out. YAY!!
Another big step is that we are moving. Or shall I say graduating.. Aiden is suppose to move to intermidiate tomorrow. I am so excited because it makes me feel like the road to getting home has gotten that much shorter. Believe me i know things can happen but right now I am living in the glory of knowing we will not be in the ICU part of the NICU and will be in the intermidiate part of the NICU. That is huge right now. My only worry is that in the "step up" room, the nurse to baby ratio is 1 to 4, which means Aiden's primary nurses may not have him as much. That I don't like. It will depend on what babies in there have primaries. A baby who is already in the "step up" who has a primary gets first dibs. So our primary staff might get bumped out..

You should have seen him tonight too. He was wide awake when I went in to hold him this afternoon, and fell asleep when I was rocking him, but he was so happy. then when we went in tonight, he was wide awake again and stayed that way for 3 hrs. Bright eyed and alert. he was watchin me and chuck while we held him and evry time a nurse walked by he's follow them and move his head to look over at them. He was so funny and so cute. It was like he didn't want to go to sleep cause he thought he was going to miss something. Finally a little after 11pm he went nighty night.

He's come so far and he still amazes me. He has been through so much and fought off so many things that even an adult would get sick of fighting. He is my little superman and I do not know what I would do with out him. If I've done anything in my life right, it has been my sons. Although I can only watch one grow up, I love them both the same, with everything I have!

I told chuck tonight that the more I see Aiden grow and change, it makes me wonder how much him and Chase would have looked like. If they would of been brothers that looked so much alike that people would sware they were twins, or if they would have been so different. We both think they would have fallen in the twin catagory. I still see Chase's little face when I close my eyes and he did look so much like Aiden. Both looked so much like there dad. Part of me feels that a little bit of Chase is in Aiden and it is our little angel who is pulling his brother through all this when he gets a little tired. He is the one getting him over the bumps when Aiden just doesn't have it in him and needs a rest. He's always watching over us as we are always missing him and sending him our love.

To my boys... I love you both more then anything in this world. Aiden keep fighting, for there is so much waiting for you.. Chase, one day I will see you again, and til then know that you are forever my big boy.. Sending you kisses on angel wings. xoxo

September 22, 2006

Aiden had a few more episodes. Once at midnight and another at 4am. His heart rate dropped and he wasn't breathing well. They are doing more blood work and he is still on the antibiotics for a few more days. His culturs grew positive but there not sure yet what for. The doctor today said he thinks it could be a staff infection. This would explain Aiden's sudden episodes. It's his way of saying, "hey something isn't right here". Although other then those few episodes the other day and this morning, he doesn't act sick. He's sleeping well, isn't fussy really and still loves being held. He is even starting to like his bouncy chair. He got to work with PT today again for 30 mins and enjoyed that too. He does well with her and seems to like it.
As for this infection, he is going to continue on the antibiotics for 7 days as I said and hopefully that will nip it in the bud. They will continue to do CBC's to watch his platelets and white blood counts. If they start to go lower the most likely they will start him on something else. Right now the two antibiotics he is on should be good. I am hoping because they started them on it before the cultures even grew out, that it will be a quick fix and he will be feeling better soon. No one wants a sick little one, and he's battled enough and still has a long road a head of him. I don't want to keep adding to it.
I mentioned to his nurse today about him coming home and was hoping originally by Oct 15, then after the lst set back said ok maybe Oct 31st. Now I feel like it's not going to be until November. Her reaction was basiclly the same. I don't think she thinks he will be home anytime soon, or anytime in the next 6 weeks. That just kills me. It's getting harder to leave him behind and I'm becoming emotional all over again. It now feels like it takes a month for a week to go by. I don't know if I can take two more months of the NICU. I love Aiden's nurses, but I am so tired of being there and visiting my baby there. I've already had to watch him spend the first (almost) 15 weeks of his life there. I am not looking forward to another 8 weeks or so.

On a good note, Aiden got his first tubby. YAY.. it was so cute. He loved it.. It was like a spa day for him. The first tubby he decided to poop in as soon as he sat in the water. So tubby one was out and tubby two was in.. Ha Ha!
He got to soak, scrub and wash his hair (well what he has left) and then put on some new duds and had a grand time. Can't wait for the next one.

September 21, 2006

Today is a day of mixed emotions. Aiden is doing well once again on his feeds. They bumped him up to 26 calorie neocate formula and so far so good with that too. My lower emotions come from him haveing a few "episodes" today. He dsat'd and basiclly "forgot to breath" as they say. This happened last week, if you remember correctly and they send blood cultures and did a CBC to check him for infection because it's not like him to do this. Well nothing ever cam back from the cultures and the CBC was fine. Now today he did it again. Not once, not twice, but a few times. The last time was at 4:45 and yes I was right there for it all. It wasn't a good scene. He was gray in color and just not breathing. We stimulated him by rubbinghim and had to put the oxygen bag on him. This "episode" lasted about 30 seconds, which is about 29 seconds too long in my book.
We had a meeting today, and talked to the doc after his last episode. He isn't sure why this is happening. They are going to continue to do CBC's and ran blood cultures again. They also chose to pull his pic line in case of infection and put him on antibiotice for the next 48 hrs at least to to be safe. If the cultures don't grow anything and his platelets go up along with his white blood cell count, then they will take him off the antibiotics. With his white count down a bit and his platlets off too, that is usually signs of infection, but so far we can't find anything. His platelets did go up since yesterday which is good but are still lower then they should be.

On a good note, since his pic line is out they did have to put a normal IV in his hand for the antibiotics but, with no pic I got to dress him up in big kid clothes, and not just jammies. Oh my did he look cute. I know it's a mommy thing but he is adorable if I may say so myself.

For now I am just trying to hang tight and hope that this issue goes away, that the episodes will just stop and even if nothing comes of it, we can just chalk it up as one of them things.
I just don't want to see him go through anything else. I don't want him getting sick again.
I'm still praying he will be home by the end of October. That will be a month past his due date. Part of me feels like I am kidding myself, but CHuck said tonight that he thinks he will be home by then. I sure hope so.. I don't think I can take two more months of being in the NICU and not having Aiden home with me. I don't think I have EVER wanted winter to come and go so fast like I do now, but I know once it is here, it means Aiden will be home. I am back to being like I was when he was first born, and missing him every second that I am not sitting with him. But when I am with him, I just want to take him home with me. I am really getting tired, and tired of leaving him behind. All I can say is I don't wish a NICU stay on any parent. It's such a long road and some days I'm just not sure if the light at the end of the tunnel is really light or my imagination playing tricks on me again. Right now this tunnel seems endless.

Keep praying all.. I know it's just a matter of time, but it's just hard some times. Just really hard!

September 20, 2006

My update when I called today was that since they got back residuals after his feeds, they went back down to the 20 calorie neocate (formula he is on) and wanted to see if it might of been the 24 cal, or something else, since he usually only gets back 2 or so cc's and he got back 10 last night at 8pm and then 8 at midnight. Well I don't think it was anything other then his belly needing more time to digest the higher calorie formula and the fact that he is getting 54 cc's a feed.
Today at noon they went back to the 24 cal, and at the 4pm feeding he only had 3cc's left. Then at 8pm he had 5 which isn't bad either in my eyes. He will get there he just needs time. Speaking of time, I think him bottling is going to take a lot of time. We tried him again tonight at the 8pm feed and it was the same as last time. He took right too it but then I think he drownds himself in the milk. He's not swollowing and then breathing, he is doing both at the same time and well you know what that means. Oxygen drops and blue baby, and scared mommy. I know enough to rub his back, talk to him and move him. Even make him cry if I have to (which is a hard thing to do cause no mommy wants to "make" there wee one cry.) So we have our family meeting tomorrow and will go over his "issues" then. I know one day at a time, it's just hard to know this is the last step, and it's going to be the one that keeps him there or lets him come home.. Let's pray he can get the hang of it soon enough and we can all have Aiden home where he belongs.. With Mommy and Daddy...

September 19, 2006

Can you believe it... Aiden is 100 days old!!!
He is now weighing in at a whopping 5 pounds 13 ounces.. But still when you pick him up, is my little peanut.. I put newborn jammies on him tonight and he has about 3 inches in the feet, ha ha ha. It was so cute, but he's filling out well and as always cute as a button. One of the social workers tonight said that he use to look so much like chuck, but now he is starting to look like me.. YAY.. Not that I don't want him to look like Chuck, but it's nice to know he looks a little like his momma too.
He is on full feeds as of midnight last night, and as of 4pm today they increased his calories to 24 per ounce. It may seem like a 4 calorie increase isn't much, but to them it's a lot.
The 20 calorie he was tolerating well. After the first round of 24, he has 10 cc's come back, so at his 8 pm feed they gave him the 10 back plus 42cc's instead of the 52 he gets per feed. (30 cc's is an ounce) So he gets about 1 and 2/3 of an ounce per feeding. Which doesn't seem like a lot, but remember he is still tiny and by gestational age, still not suppose to be born for another week and two days.

With the calorie increase we are expecting that he has some come back for the next few feeds at least, because his belly needs to get use to digesting it. It has to work a bit harder to do this. In the mean time, they are keeping his pik line in his leg just incase. After the last episode we don't want to take it out and have something happen and then need it again. It's one of those better safe then sorry things, that I am all for right now.
He's also still on the nasal canula and I assume he will be for a bit longer too, since now he has a full belly every 4 hrs and that puts more pressure on his lungs. He's still 25 cc's or less of oxygen so that is not something that will stop him from coming home at all.
As for bottle-feeding, well he wasn't awake enough to attempt it again. And after yesterday I'm a bit nervous. He didn't do so well with me. He dsat'd and although his heart rate didn't go below the bad level, his oxygen dipped really low. I know it's going to take time, it just scared me, but I handled it well. I also want to talk to the doc to have OT work with him to find a nipple that he like and best suits him. I think that is going to work best for him. If everyone prefers a different on and uses a different one then it's going to affect him differently and he may not take to a bottle. I want him to use what he likes best and not what so and so likes at the time. It was also a suggestion form a few nurses to be consistent once we find one that he does well with, and that makes all then sense in the world to me. He also had another round of PT today, which I call baby yoga and palates.. He loves it and does really well. He actually does well with both OT and PT. YAY Aiden..
So here are our goals.. Stay on full feeds, tolerate the calorie increases, and bottle feed.
In between that, try to get off the oxygen.. Then we have to wait for the hearing test, and let his eyes heal some more.. Sounds so easy huh.. It's that last leg of the marathon, and now it's really starting to drag.
And the update on his eye progress is. There is no longer any sign of plus disease in either eye. One eyes is down to Stage 1 ROP and the other eye is still Stage 2 ROP but shows improvements. There is a possibility that he could wear glasses, as I have probably already mentioned, and that I can live with. We will see what the next eye exam on Monday shows.

Keep praying, we are on our way.. Go Aiden.. I can't wait for you to be home.. I love you peanut!

September 18, 2006

It's been a busy weekend so I haven't been able to update until now. As of Sunday Happy 14 Weeks Aiden!!!!!!!!!

Aiden is doing well for the most part. He's had a few minor issues that they are checking out the best they can. One of them, "better safe then sorry" type things. Saturday he seemed very sleepy through the day and not himself, so they did a CBC and sent blood cultures to the lab just to make sure he didn't have an infection. The CBC came back fine, and so far nothing from the cultures, which is great. Saturday night he seemed back to himself, loved being held but had a bit of an attitude when you put him down. Yup that's my peanut. Spoiled!!! But he settled in and was fine the rest of the night. Sunday came and then about 7AM he has a spell which is not like him to do. He has never been a baby to spell much. Once here and there for 2 to 3 seconds, so this one was unusual and lasted 30 seconds. A spell is when your heart rate drops, and they sometimes stop breathing. They sometimes even need to be stimulated by patting there backs to get them going again, and breathing normal. That is what happend to Aiden. They then chose to send off cultures for the flu, RSV and another virus to rule out anything they can and like I said, to be safe rather then sorry. So far nothing has come back and Aiden is being Aiden. All good to hear.
Other good news today is he had an eye exam and the doctor said she is VERY pleased. That they look excellent and are getting better. That he may need glasses but she is very very happy with them. That the doctor who did the laser surgery did a wonderful job. I was so happy to hear that, and as for glasses well I wear them and can't see two feet with out them, so I kinda figured Aiden would need them too. Not such a big deal. He can always get contacts when he becomes a teen. Some more good news is Aiden drank from a bottle today at 8AM. He drank 20 ml's which is 20 cc's.. At noon he was too sleepy to try so out goal is to try again at 4PM if he is wide awake.
We are going inthe right direction finally. I was so excited that I called home to tell chuck and scared the crap out of him cause he didn't know what I was talking about.. Until I started talking a bit slower. He drank from a Buh-Ba is what I was yelling.. So i needed to slow it down and say he drank from a bottle, then he was as excited as I was.. YAY for today. It's about time we had a really good day. He's also at 110 ml per kg (140 is a full feed) which he will be at by midnight on tuesday night / wednesday morning. After that they will then increase his calories. This will be the next bump in the road. Hopefully it will be just a speed bump we can cruise over and not a pot hole we get stuck in.
YAY for Aiden!!!!!!!!!!!!!!!!!!!!!!!

September 15, 2006

Yes I skipped a day, but it's been hectic so forgive me. Aiden is doing well but once again retaining fluid weight. As of today he is up to 5 pounds 8 1/4 ounces.. He's huge to me until I pick him up then he's still small. I know that makes no sence but it's how it is. He looks big but then you pick him up and he is still tiny. He's still eating, which we are all excited about. They have him now getting 14 cc's every four hours and if he continues to not give any back or less then 2 cc's or so then as of midnight tonight they are going to increase him again to 18 cc's then instead of increases once a day he will be increases twice a day. At that rate he will be at full feeds on Wednesday morning. Then they will hold him for a day or two before they increase the calories. That will be the next bump in the road. Calorie increases seem to put some babies in a tail spin. They don't digest as well, can spit up, or even spell. It's something to do with the fat or protein in the formula. I am keeping my fingers crossed that Aiden will be so hungry and his belly will be so happy that it will all go smooth for once. THEN once he gets to full feeds and calorie increases, he will then train on a bottle. His last step to coming home. YAY.. However I know this step is a long process. It can take weeks and weeks. I just hpe we are out of the NICU by Halloween. That is my hope... But everyday is closer to him coming home and that is a great feeling.
Tonight I didn't get to see him much or for very long. Tomorrow is my baby shower and my mom came up to stay. There is so much to do, but I had to go see Aiden. We got to stay for almost an hour and half or so, then we left. He was fussy when I was leaving and I wanted to stay. I felt so bad not being there most of the day and then leaving him when he was being a fuss bucket. I called later and the nurse said he settled down after a while and was finally sleeping, that made me feel a little better.
Tomorrow will be another crazy day. A day to celebrate Aiden and he can't be here. I know you usually have a shower when your still pregnant so the baby isn't really there anyways, but knowing he is here in the world, I wish he could be here with us too.
Well I will update more tomorrow night, let you all know how the feeds went. Right now I am off to bed, since it's past 2AM and I am being kicked out tomorrow by the "crew" at 9am. I need at least a few hours beauty sleep or I am the one who will be a fuss bucket tomorrow morning.

September 13, 2006

So Aiden's hearing test got cancelled.. They decided not to repeat it and to wait a few weeks. So we will have to wait until then to find out more. A nurse told me today to ignore it, that they should have waited to do the test because he is still little and just to pretend that they didn't do it. To wait for the next one. She said considering he had so much done that day and is not a 40 weeker yet, they should have waited and the next test could be better. No matter what anyone says though, the thought he could be deaf sits in the back of my mind. I also take peace in the fact that they can do so much for hearing now, with new hearing aids and technology they have. I've watched specials on TV where they fitted a girl with special hearing aids and she heard sound like we do for the first time in 15 years.. SO enough on that until I know more, or until someone brings it up again.
He also had an eye exam again today, and it was about the same. Nothing worse though.. YAY
On a super positive note, his feeds were increased again to 11cc's and he seems to be tolerating well.. His asperates (what comes back when they suction his belly) is between 0 and 3 cc's at the most. Not so bad considering all he has been dealing with. It's funny that when he was given 4cc's he'd give back 2. When he was given 7 he gave back 2, now he is getting 11 and giving back 2.. Maybe 2 is just his number.. LOL
All I know is I am glad he is eating and tolerating it. I'm glad that he is one day closer to coming home, and I'm glad that he is here with us... Be strong little one, our little angel Chase is watching over us and will help you through this, I know he will. Love to both my babies.. XOX

September 12, 2006

There isn't much to tell today.. They started increasing Aiden's feeds. He is now at 7cc's per feed every 4 hrs. (A full feed righ now would be 40cc's) So far so good, we will have to see how it goes. Besides that the only other new thing is the resident doctor told me tonight she orderd another hearing test for Aiden, for tomorrow. I asked her if it could have been the atmosphere, room noise kinda stuff, or just that he didn't want to be bothered, that made the other one come back abnormal, and she said not really. She told me that the test they do is really good and it measures the babies hearing by the movement of the hair that is in the ears when you hear sound. She said if this test, the one tomorrow, comes back as abnormal too, then he will have to go to childrens for a different one. But most likely if this test is abnormal too, then that means Aiden has some deafness. How much we don't know yet, all I do know is one ear is worse then the other but neither ear was good. I'm kinda bummed out about this. It really bothers me and brings tears to my eyes that my little boy may never be able to hear us, he may never hear his momma's voice or me say I love you... I'm trying not to let it get to me but just typing this makes me cry.
Once again fustration sets in, as I say to myself over and over.. What next.. When is it going to stop. How can so much happen to one innocent little boy..
I remember when he was smaller, I would get there and as soon as I was talking he'd wake up. I know he heard me, I just know it. Tonight I tried talking to him and he didn't even open his eyes. Part of me says it was cause he was just sleepy and comfy, but then I have to ask myself if I am just in denial. Right now all I'm asking for is to please let them be wrong..

Please all keep praying for Aiden, and pray with all you have that he will get over this and his test tomorrow comes back normal...
I can't bare to think of my little boy going through everything he has gone through to then have to grow up deaf and have another challange he will live with forever. It's just not fair...

I love you Little Man... Soooo much... You are truly mommy's amazing little boy and I love you more then life. Sleep well and know I'm laying there next to you, until I see you tomorrow.. XO