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

September 11, 2006

Happy 3 Months Aiden!!!!!!!!!!!!!!!
Aiden's ultrasound came back as negitive which means "good". The ultrasound tech said it's the best he's seen from all of Aiden's films. His eye exam came back as the plus disease is improving.. Another YAY.. But he had a hearing test today too and that came back poor. They are waiting for the final results but the puliminary results were that one ear is worse then the other and both are not so good. The doctor the went over things with me tonight didn't have much to say about the test. She said they will repeat it but she is not sure when. Then told me it's not the best test in the world so to take it with a grain of salt. That is could mean everything but it could mean nothing.
Well that's not much comfort considering it either means my son is deaf, or he isn't. Which is it??
The nurse said to me she they will repeat the test right before he goes home and if it doesn't look good with refer him to one of the hearing specialists. She also said most of the kids that are referd do very very well. That the out come is very good. I was a bit bummed, but then convinced myself that I think the test is wrong. As the doctor said it could just be cause there is so much noise in room or that Aiden just had too much going on today. So considering he has responded to my voice in the past, I prefer to think he can hear me until I know for sure that he can't, which honestly is not something I want to think about or process right now.
I remembered to take a few pics of the "big boy crib" for everyone. So enjoy...

September 10, 2006

Happy 13 weeks Aiden!!!
And as a surprise, they put him in a real big boy crib, not a bassanet. Of course I forgot to take a picture of it so you will all have to wait until tomorrow. As for my little peanut, well he is still not pushing through that food they are giving him, so they did a KUB today, which is an xray. They saw nothing of concern and thing he might just need to poop. I hope that's all it is. So the course of acting is suppositories. He got one at 4am, then again at noon and will be getting another tomorrow I think if he doesn't go. Other then this it was an uneventful day, which is good when your in the NICU, unless the events are all improvements. He does have an eye appointment tomorrow and an ultrasound of his head. We will see how those go. I am hoping his eyes are better and not worse. I don't want him to have to go through anymore laser or anythng else. As for the head ultrasound, well his last one (a month ago) looked good so I have high hopse this one will too.
Can you believe he will be 3 months tomorrow.. But he is still not a 40 weeker (full term baby) he is only 37 and 3/7th.. He looks so big to me but at the same time is still really little. Cute as a button though. And he is the only kid I know that owns a redsox jersey and a patriots jersey (from build a bear of course) Shhh that's a secret.. And soon enough we will get a pic in the bruins jersey for his grampa..

Hope you all enjoy the pics of the Patriots new Baby Back... (he replaces the quater back) lol

September 9, 2006

Aiden is back off nasal canula and at room air.. YAY!! He'd doing wonderful with that. As for eating, well he is still not digesting his feeds.. UGH!! When they suction back the milk comes back but is some what digested. You can tell his tummy is making the "juices" to digest it, but it's not moving through his system. I am thinking maybe it's becuase he hasn't pooped in 3 days. Maybe he is a little blocked up.. Although his belly isn't big or distended. Either way he got a supository tonight so we will see if we get any little gifts.
He's also getting to the poing where he would much rather be held then in the crib. I held him today 3 times for 2 or more hours at a time, and he was held by the nurses today to because he was being a fuss bucket. Chuck says he has earned it and I agree. I just don't want him to turn into a, "I need to be held 24 hrs a day" baby.. Cause that is just not possible.
We keep talking about "when Aiden comes home" and it is such a good feeling. Can you believe I am scared a little too. It's going to be a very sureal day for me. I'm still looking forward to it though in so so many ways. And at this point i could really use a long vacation from the NICU.

Lets just pray and hope that Aiden starts doing well with his feeds and can get past this hump..
As always it's another waiting game, but so much is riding on this, just like all the rest of the bumps and humps we have faced.. You can do it little man..
Oh and his weight is back up.. Strange as it is, he pee'd off all that fluid gain, and now isn't puffy and swollen like he was, but in a day he put the weight (in numbers) right back on. He lost 150 grams after his doses of lasix the other night and then as of today gained 155 grams. he is right back to being a smidge away from a 5 pounder.. Imagine that..

September 8, 2006

Aiden is still back and forth with his feeds but has gotten a little better, so the plan of attack is.. If he starts to digest all of the 3cc's he is given, then come monday they will start increasing them.
We also had a step forward and a tiny tiny step back today.. The step back was that Aiden is back on the nasal canula, but only on a sniff of oxygen. He's doing really good, but I think the combo of his starting feeds and getting blood and getting two shots of lasix today just pooped him out and he needed a little help. Not a big deal, it only nasal canula, and considering he was off it completely for 3 days is just awesome. NOW the step forward is... Aiden is now in a big boy crib, well actually a bassinet. He was either getting really warm in the isolette or getting cold, so they took him out and he has been at room temp since 10am. He still needs to be snuggled and wraped in his blankets but he is holding his temp so far, and this is a good thing. He's big enough to be out of the isolette, however he's still delicate when it comes to his temp. Well see if this works but again, so far so good.
He was also give two doses of lasix today, one after he got the blood and the second about 9am.
OH MY did he pee.. His diaper at 4am was 119 cc's and the one at noon was 91 cc's.. Yes people this is a lot, considering his average diaper is between 15 and 30, and what we call a big one is about 45.. I think we now hold the record.
With that said, you can imagine that his puffiness has gone down a bunch, and he dropped some water weight. He weighed in last night at 2235 grams (4 lb 14 1/2 oz) and tonight weighed in at 2075 (4lb 9 1/2 oz) Now that's a lot of pee...

I finally got to take some new pics today too, I was waiting because he just had so much going on with his eye exams and this and that, i didn't want to bother him with the flash, until I realized the camera I have rocks and takes really good pics with out the flash, most of the time.. So enjoy, and I will up date you all tomorrow if there is any more exciting news..

September 7, 2006

Aiden is still on his feeds and off nasal canula. YAY
As for his feeds well, sometimes they get some back, sometimes they don't get any back, and sometimes they get all of it back. But as I said, we (Me and Chuck) did expect this. It seems to be going just how it did when he started his feeds last time. Also they checked his crit and it's low, they also checked his retick level and it was low. This is the amount of red blood cells your bone marrow is making. It's low for many reasons. One being that Aiden is a preemie still, two he's not eating like a normal baby, and three he's not getting iron the way he should and since iron is given by mouth he can't have suppliments until he can feed on full feeds. These are some of the building blocks he needs and once things fall into place this "retick" level should go up. Right now he just needs a little boost so he is getting a blood transfusion today too. This will bring his crit level up to where it belongs and then who knows he might even start digesting his feeds better. That is what happened last time. He got blood and off he went running so it seemed. I have hopes all will fall into place this time too.
We had the family meeting today with the new attending. He is really nice, so we have lucked out so far that all the doctors Aiden has had, have been really good and easy to talk too.
Here is what we have for today...
Respitory... Aiden remains off the nasal canula and the doctore is extreamly pleased with this. He said some babies go back and forthe for a bit, so don't be surprised if he bumps back on again for alittle while, but so far he is remarkable and his lungs look good.
Nero.. He will have another ultra sound of his head to see if every thing has resolved, but the plan is for him to have an MRI in the future. This will be before he comes home, so one I start talking about his MRI appointment you know it's only a matter of days.. YAY, as for right now, his last ultra sound of the head (last month) looked really good as far as any effects on him for the future. We won't know until that time comes. But so far so good.
Kidney.. The ultra sound the other day shows no fluid and all looks like a perfect kidney
Eyes.. The eye doc said he will be checked again on Monday but right now they have not gotten any worse and the vessels are a little (very tiny amount) less dialated. But to remember it has only been a few days. She was very pleased that they are not any worse.
Heart.. his heart looks fine and doesn't show signs of any problems they can see.
Stomach/Intestines.. Well we know this has been an on going battle, but no new updates since the other day.. We are all set to keep going forward with feeds..

SO, You go Aiden!! You show them, and in the end we will be here with open arms to take you home.. I can't wait for this day.. daddy thinks it will be sooner then later, and deep down inside I sure hope he is right.. Stay strong little boy.. We love you!!!

September 6, 2006

Aiden is still on trophic feeds and here and there they get some formula back when they suction, but it's digesting so they let it be. If it came back a funny color then we would worry, but right now I am not. This is the same routine he went through the first time and I am sure his belly is just getting use to having something in it again and will start working better once it gets primed.
He also had his eye exam today and the eyes didn't get worse so that is really good.The nurse said that the doctore was happy with them, that they were just a tiny tiny bit improved, but it's a start. I will talk to the eye doctor tomorrow for a better in depth update. AND on a great note, I went in to see Aiden today and he was OFF nasal canula.. OFF!!! It wasn't just turned all the way down and still on him, it was disconnected and not on his face. He has been off it since 9AM this morning and doing fine all on his own. My big boy.. He's doing so much better.
However with that said, he has been a little fussy lately. Ever since his eye surgery, so I can't help to think one has something to do with the other. Hopefully he will settle down. He gets so angry and red and cries and flaps his arms all over. It's a bad scene. He does like being held though, but even while being held he has been a bit moody, but only twice. Most of the time he is my happy little bean.

September 5, 2006

It's a good day.. and part of me doesn't want to say it in fear that I'll jinx it.
Well the surgon came over today and looked at Aiden and the Xrays. He talked to the doc and Aiden's nurses since they have been there since day one and the attending doc has only been there for a few days and not really had Aiden on a one to one basis yet. The out come was that this issue, the fistular, seems to not pose a problem rightnow and may never be one, that it is not something he is worried about and he recommended we start feeds. So AIDEN GOT TO EAT!!
They started him at 3cc's every 4 hrs as of 4pm tonight and will keep that going for the next 4 days or so before any increases. So as long as Aiden tolerates the feeds he will continue on the road. I am so excited!! I am sure you can feel it just by reading this. Other news today is he has two hernias. One is a imbilical hernia, which almost always correct on there own. The other is in his abdomine on the left side and very small the surgon said, but nothing he is worried about either. They will continue to watch it and said he may (in the future) need it fixed, but that is a long way off by there prediction. Yay Aiden.. We did it baby boy... Mommy is so happy you beat this stuff and can eat again.. Your amazing little boy.. and I LOVE YOU!!

September 4, 2006

Another bump another briuse.. Seems we got over one, then another then another, and just when I though we were good to move ahead something else jumps in the way.
Aiden didn't start feeds today and that was because they have discovered a fiscular. They think it was formed when he got NEC and the drains where put in. They think during the healing process that where one of the holes were, it i guess, fuses you could say to the wall of his abdomine. This caused the fiscular, a pocket that is connected to his intestines but also his abdomine, so when there is a lot of pressure in that area, what is in his intestines, pushes out to this pocket. As you can imagine, this is not a good thing. If it ever ruptured and was full of "stuff" aka poo, then Aiden could get super sick. Not to mention that it is on the out side in the muscel tissue. Surgery came over to take a quick peek at him and the big surgon is coming tomorrow. We are now anticipating that Aiden will need surgery to fix this, which means he can still not eat until this is done, and then not eat for about 10 to 14 days later. Then once he can eat, it will once again be very little, very slowly. We are now projected out to the end of Oct, possibly even the begining of Nov befor Aiden comes home.. This is 5 weeks or longer AFTER his due date of Sept 28.. This sucks.. I pray so hard every day that he will get a break. He's gone through so much, this isn't fair that one baby has to deal with so much in his life time.
We'll know more hopefully tomorrow and I will update then, until then please keep praying for Aiden. Fast and speedy recovery for all this, and if he has to have surgery, that evrything goes well and there will be no long tern effects on his eating later on..

September 3, 2006

Aiden is off the vent, he cam off about 9AM this moring and is doing fine on it. For a few hours he was even at room air which is just amazing considering the last few days he has had. They sent him over for the GI study and it came back as negitive which means NO strictures.. How great is that.
They were going to feed him when he got back to the NICU, but when he returned his belly had blown up to 30 cm. That's alot for him, so they did an xray which showed his intestines is dialated and full of contrast that he needs to pass. Most of it usually comes out whenthey do the study but since they used a lot from what I was told, not all of it is out yet. By the time I left tonight his belly was down to 27.5 cm. The plan now is to get him going on feeds tomorrow as long as his belly continues to go down and we will go from there. They are going to start small like last time and increase daily after a few days. They are also going to do a ton of blood work to check a few things. One being his albutrin level, this may have something to do with why he is so puffy and retaining fluid as much as he is. It also has to do with him not feeding like a normal baby and not getting the protein that he would get his he was on milk or formula.. In all due time, I know.. So basiclly it was a good day, test wise, for my little man. As for how he is feeling in general well it's not such a good day. He was very cranky when i wasn't touching him, and did seem to like when i comforted him at times. I couldn't hold him yet caus of his belly and all but maybe tomorrow. I am sure his bum hurts now from the contrast study, and his belly from the gas and bloating. Added to his eye surgery the other day and not eating. He's just had the crap kicked out of him. A sore belly, a sore bum, sore eyes and a sore throat from being intubated.. I can not imagine all this in 72 hrs. I think I would be miserable and flipping out too..
I just hope tomorrow he feels much better and is back to my little wee one. My happy bug!!

September 2, 2006

I feel guilty.. Today is the first day ever, since Aiden was born, that I have not gone into see him.
I feel like a terrible mom. I hate this feeling. i woke up this morning and was having a normal day, and then it was like postpartum set in.. Gloom set over me and I was just miserable. I'm fustrated i can't find a dresser for the babies room that matches and that I like, besides the fact I have no money to buy one either, and I hate using my credit cards. Well I guess it started building up and well I got in a mood and just felt sad. So I ended up taking a nap at about 6 or so. When i got up I was a little better but still chose to stay home. I know Aiden won't know the difference, as in the amount of time it's been since I was there last, but I still feel horrible.
I've called to check on him a few times and he is doing good. He's still on the vent because he's not breathing over it yet, he's still really sleepy, so they won't take him off it and put him back on nasal canula until he has "more energy". That is fine, and I agree with them, I don't want him rushed, which is also why he didn't go for the GI study today. To take him off the vent after having hours of laser yesterday and send him for a GI study would just be too much too fast. His nurse thought the same thing and advised the doctors today to just let him be and wait until Tuesday. We want the study and we want him to eat, but that last thing I wasnt is a set back because he was rushed. Aiden will tell us when he is ready to come off it and breath on his own. I think he just needs resting time. Another reason why I didn't go in today. I can't bare to see him on that stupid vent anymore. Not able to have his little voice and move his head around. It makes me cry. And I know he needs to just be left alone and sleep to over come what they did yesterday. He won't know the difference of one day, only I will.
He's also become more puffy and retaining fluid even more then before, i am hoping that it's just cause right ow his body is tired and in a few days he will be back to himself.
I just miss him so much right now. I walk in his room and it feels so empty. Besides still missing so many things, the major thing it's missing is him. I just want my baby boy to come home and be healthy. One day at a time, just please someone show me the light at the end of this tunnel. Every time I think we are getting closer, the tunnel gets longer. I know he's not going to be home my his due date, or Oct 1st. We are now hoping for the 15th, but that seems like a long shot. I think the 80 plus days of being at the NICU is taking it's toll.

September 1, 2006

What a busy day..
I called the NICU at 10 to check on Aiden and see how his exam went since I knew the eye doc was coming at 9am to check him. The word was he was having laser surgery. They planned it for 2pm and estimated about an hour for each eye. I left work at 1pm picked up his Auntie Elisa and shot to the hospital to see my baby boy and sign the consent forms. When I got there they had already intubated him and he was back on the vent. They did this as an elective procedure so they could give him pain meds and sudate him so he was still and not worry about him not breathing.
He looked peaceful when I got there. Really sleepy and comfy from the morphine they had already given him. They moved him to an isolation room to do the procedure and i followed. We spent time with Aiden until the eye doctor got there and then I went over all my questions with her. I signed the consent and then gave Aiden kisses. I headed out and waited for the phone call. Well the two hours turned into three but all turned out well. The doctor called and told me everythign went as planned, no surprises and he did great. That they will check his eyes on Wednesday and have hopes that they will be either the same or better. As llong as they are not worse then it is a good sign. She went over before hand that some kids need a second laser surgery. that some even need an actual surgery where they cut into the eye, and some no matter what they do it just doesn't stop the ROP and they will go blind. My hopes for Aiden is, since he had to go through this, that it works and this is the end of it.
Now the GI study.. Well that was also planned for today but cancelled since the eye surgery was priority and to do it all in one day is way too much for him. The game plan now is to, depening on how Aiden is doing, to call the Barrium on call tomorrow and see if he has a slot open. If not then he will have to wait until Tuesday after the holiday to have it done. They will ook to see if he has a stricture and if not then he can be fed. IF he does, well then he will have to go into surgery to be opened up and have that part of his intestines removed. As you can imagine, I am hoping there is no blockage. That Aiden's boute of colitis was just a fluke and has nothing to do with any blockages or strictures. Then once he feeds and gets to full feeds and tolerates it. All he has to do is train on a bottle and he can come home.. Words that sound so good to my ears..