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...