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..

August 31, 2006

Aiden did great today and during our visit was even off nasal canula for about 10 mins of so and didn't dsat a bit. He was awesome, and when put back on he even sat'd high while I was holding him. They lowered his oxygen to about 5 cc's and he has been less then 25 all day. More like less then 12. He's come so far on that level and has just a few more bumps to get over.
The plan for tomorrow is this... I talked to the eye doctor and she said she will be over at 9AM to do his eye exam. Then she inticipates that he will need the laser surgery and she has planned to do it later that afternoon.
As for the GI study, well IF he doesn't get laser, the GI is planned for after 1pm. If he does get the laster then they can't do the GI until he recovers a bit, so atleast 24 hrs. Surgery said that they will try to maybe get him in on Saturday but if they can't then we are looking at Monday. Either way, it will be a few more days before big man can eat. The new doc coming on tomorrow knows the plan and from what I am told will stick to it. He is one that "tells it like it is" too so I am glad for that cause when it comes to Aiden I don't want it sugar coated. I want to know the black and white of it all.
So we will have to wait and see what happens tomorrow. Keep your fingers crossed. I am hoping he doesn't need surgery on his eyes and they correct on there own but that is unlikely once they see plus disease, but I can hope. AND I am more so hoping that Aiden's bout with colitis was just that, a bout, and not caused by some stricture. If he has a stricture he will have to go to the OR and have a major surgery to open his abdomine and cut out the blockage. That is something I am trying to put out of my mind and not think about right now. Another bridge I will deal with if and when it comes up. Until then, I stay very hopeful that everything will work out and by the grace of god Aiden will be home by Oct 1st..
PS these pics are from today.. So cute my little man.. LOVE YOU!!

August 30, 2006

Aiden had his eye exam this morning and hated it. The doctor that did it used the clamps that open your eyes and he's never had that done before. Not that that matters because I am sure he'd hate it even if he had it done before that way.
The out come is that in this doctors opinion the eyes do not look bad enough for laser surgery. They will check them again in a few days. Most likely on Friday and go from there, but as of right now it is another "waiting game".. Other news is surgery came by and decided they want Aiden to have a lower GI study again. They prefer this to be done before he eats because they think there may be a sticture and that is what caused the colitis. This means No eating on Friday. Once again put off for another day, possibly the entire weekend.
Can you feel my fustration!! I'm over tired, burnt out, and over whelmed with all this NICU stuff.
I keep saying Aiden is going to get a break, but this poor kid has luck like him mom and can't seem to catch a break if it fell in his lap. Enough already, just let him heal and be able to get out of there. I know I'm venting but I'm just stressed out. And since this is also my personal blog and not just Aiden's I can do that. So vent away I will do..
Maybe it's the added stress of finally tapping out the savings and actually being broke to the point that we just have enough gas money to get us back and forth until next friday (Sept 8)
other then that right now we are sinking. This is a first for me, I've always been able to keep our heads up or atleast pull them back up very quickly. Right now I just feel like there is so much stuff to get, so much stuff Aiden will need and I'm stressing out over it. As usual I know things will fall into place but as of today the light at the end of the tunnel seems to be getting further away. As for the peanut, well if and when I get any more news today as usual I will update.
Keep praying that everything works out and he comes home soon.

Well I went in to see my peanut and he didn't have one eye exam today he had two. One at 9am and the other at noon. So you can imagine how sore his eyes were not to mention how bright everything must have been with his pupils dialated still and will continue to be until his next exam on Friday.
As of right now he is scheduled to have his eyes checked on Friday morning and then the plan is to have the laser done, unless his eyes improve on there own in the next few days which I've seen happen. He is also scheduled for his lower GI study any time after 1pm. He's what you call "on call" so as soon as they have time after 1 then will take him in. however since his eyes might be done that day too, if it turns out they do the laser (which is there intentions at this time) then the GI study will have to be postponed. The nurse said probably to saturday, but you know as much as I do that they will not do it on the week end and since it is a holiday week end it will be postponed until probably Tuesday.
Once again I am fustrated. Friday he is suppose to start feeds. Friday he is suppose to have another eye exam. Friday he is suppose to have laser eye surgery. Friday he is suppose to have a lower GI study done and don't ya know Friday is the 1st of the month so we get a new attending and a new fellow.. This just sucks.. It's pretty obvious he can't have all this stuff happen on Friday. So which one takes priority? What are they going to do? What's the new plan of action? I want answers, concreat ones, and I'm not getting them.
I am sure tomorrow will be a great family meeting. I'm once again bummed to see a doc I like leave, and have to start over again. And I'm bummed Aiden has to deal with all this crap. Add that to being over tired, it's now 2:11AM and I have to be up for work in less then 6 hours.
So I am off to bed to "sleep on it all". hopefully I will get some news tomorrow and I am looking forward to seeing mickey on friday to take care of Aiden. Now we just need to hit the lotto.. Haaaaaaaaa, now that's funny and I am definetly over tired.. Good night all, and keep praying for my little one that once he gets past this bump in the road he will have smooth sailing...

August 29, 2006

And so the beat goes on...
Aiden had his eye exam today and i got a phone call. Scared the crap out of me but I had a feeling they were going to tell me it was now stage 2 ROP. I however didn't expect them to say he also has Plus Disease in one eye and will require laser surgery. The other eye is boarder line for having plus disease. So with that said, another doctor is coming in tomorrow to check his eyes again (they always have two check them once they see plus disease I guess) and if she agrees with the findings of the other doctor well then Aiden will have the laser surgery done as soon as tomorrow morning. She told me today they like to have it done within 72 hours which will be by Friday the latest.
I'm very hopeful this will correct the problem. There is a chance it won't work but I am not thinking too much about that. We will have to cross that bridge if it shall go that direction.

On a good note he is getting so big to me already. He's so much bigger then he was and already lifting his head on his own and holding it up. That has been his new trick. Amazing, just amazing!
He's 4 pounds 3 1/2 ounces already and getting bigger. I can't wait for Mickey to get back this week end and see him, she's going to think we swaped him out for another baby. And when his gommie gets back from Idaho too. They are in for a surprise. My peanut is now a big boy... LOL

The new tasks at hand..
Get Aiden through this ROP and laser surgery issue.
Get him back on feeds with a healthy belly
Get him feeding from a bottle
and if possible off oxygen (which he is very close to already)

and then woo hoo.. he can come home!!!!!!!!!!! How exciting is that day going to be.. I can see it already.. I'll be running around like a chicken with my head cut off because now it's all on us with out watching eyes, but that still sounds good to me, if it means I can have him home.
I look forward to our first nap time together.

I also wanted to take this time to thank everyone who reads the blogs and comments. To all my friends and family who have been there and supported us in there own way. I know we have been M.I.A. for awhile and don't always call when we should, but I hope you understand and Please know I am truly greatful to you all. I am very much a person who in times of crisis, shit down and focus on only that thing assuming the rest of the world can get along with out me and will still be there and be understanding when I am ready to re-enter it. So for those of you who have been there, who have called and didn't get a call back, who have prayed or just thought of us. I thank you all, and please know it truly does mean a lot to me. I thank god everyday that I have been blessed with some really good family members and friends...

PS any pics I post up will most likely be from the past few days.. Since Aiden had his eye exam and is getting eye drops twice a day until tomorrow to keep his eyes dialated. Then having another exam in the morning after they dialate him some more. I don't want to take any pics because I don't want the flash to bother him. You can only imagine having your eyes dialated at the eye doctor and going outside then having someone flash a camera at you. I'm sure you all understand. So tonight I posted a few black and whites I took the other day...

August 28, 2006

Yay.. It's official.. My peanut gets to start feeds on Friday!! I'm so excited for him. He's so antsy between 8 and 10 some nights and you can tell it's from being hungry. I can only imagine how much he's going to grow once he starts eating.. My peanut will no longer be a peanut.
On another good note his blood work came back and his bili levels are down. ( This is the stuff that causes the jaundice) So I am happy about that. Once he starts eating it will also go down.
As for his eye exam, well they didn't do it today. Nothing was said to the nurse and when I questioned it, CC said they never came around so they are either going to do it on Wed or they decided to do it on next Monday. I'd assume Wed because once they see that a baby has ROP they do them weekly and his last one was on the 21st. Guess we will find out tomorrow if it is going to be on Wed for sure. The only thing we are watching now is his temp. He seems to keep a temp between 97.3 and 97.7 but tonight he dropped down to 96.6 So we bundled him up and will keep an eye on it.
As for me well I been fidgiting with his window treatments and right now have two different ones. Each window is staying this way until I can figure out what one I like best or until i get more then just me and Chuck's opinion. I can't decided and the one I seem to like the best is the one Chuck likes the least. Maybe I will have to wait until Friday when Aiden's auntie comes over. She can tell me what one she likes. I'll have to wait for his gommie too. (That's family talk for godmother) She always has good advice. Now it's just getting some jungle stuff tha tmatches that I can put on his shelf and waiting to find a dresser and we will be close to done. Not done, just close to it. And last but certainly not least, will be my peanut all snuggled in his crib.

I'm getting really excited. My shower is coming up on the 16th of Sept. I know about it, and know who is invited, just don't know who is coming or all the little things people are doing to put it together so it still is a bit of a surprise. I can't wait cause it makes me feel like Aiden is that much closer to coming home. It's my day to finally celebrate him. YAY!!!

Sweet Dreams my little "super"man.. I'll see you tomorrow but until then I send you and Chase all the kisses I can. I love you both very much. xxooxox

August 27, 2006

Happy 11 Weeks Aiden...
It is so strange saying that.. Eleven weeks old!! He had a good day today from what they told me when I called to check on him earlier in the day. His oxygen requirement is pretty low. Most of today it stayed at 12.5 ml and for a bit went to 25 ml. Either one we will take, it's such a small amount compaired to when he was first born. He's become more yellow now too from the jaundice. It's starting to worry me. He's in a great mood and I shouldn't really say "he" is becoming yellow because although you can see it in his skin, it's the whites of his eyes that show it the worse. I'm not so worried about the color it's what causes the jaundice that I worry about. (The liver and his bili levels) They are doing blood work in the moring to check the levels again and I'm sure they have gone way up. Not too much that can be done besides getting him eating like a normal baby should be doing. I'm crossing my fingers this go round flies to the top and stays there. Smooth sailing all the way this time. He has also got his eye exam tomorrow morning to check the progress of the ROP. I'm hoping it hasn't gotten worse. I know they say it gets worse before it gets better, but can't Aiden be the one who it just gets better for with out getting worse.. He's gone through enough already.

I also started his room today. It's been painted for a little while (his god mother did it for me) and I've had the crib, but I put up a shelf and some pictures of him and us with him. Also the wall hangings that match his crib set. It looks cute so far, but it's missing a few things. The number one thing it's missing is Aiden, but he'll be home soon, I know. I got a few more things to do to it, and a few adjustments to the window treatments. They just need a bit of help, but not to worry suzy homemaker here can handle it. Then it will all be perfect for my peanut.
Can't wait til the only place I have to go to check on him is his room. Ahhh what a feeling that would be..

August 26, 2006

Yes I know I skipped a day, but thats because there isn't much news to tell. Aiden is doing wonderful, besides being antsy here (I think it's because he is hungry). He's smiling, laughing and being a baby. He has 6 more days of the antibiotics and then should be able to start feeds again. From what I've been told they will start him at 4cc's a feed then increase up until they get to full feeds. Based on his current weight, full feeds would be about 35 to 40cc's but because he has had so many issues concerning his belly and gut, they will use a base weight like they did before and everyday increase it by 20 grams.
His actual weight right now is 4 pounds 1 1/4 ounces.. He is an offical 4 pounder, even if some of it is fluid gain. It's amazing because I can't picture him anymore as tiny as he was. He's still little but so much bigger then 1 lb 6 oz. It's just crazy talk saying he's 4 pounds. he actually finally fits in some of his preemie clothes. Although some are still big on him.
Can you believe he will be 11 weeks old tomorrow.. It's strange just saying that. And still if he were born today he'd only be a 35 weeker... Crazy just crazy...

August 24, 2006

Our family meeting today went well. The doctor said straight out to us that she really doesn't know what caused Aidento get sick this past week end but it does look to her like colitis. If it is NEC or just a non specific colitis she doesn't know, so they are treating it the same as if it were NEC, which is 14 days on the antibiotics and no feeds. She said as of right now she thinks she will wait out the 14 days. If it was a non specific colitis then we could feed him again now but since we are not 100% sure we will probably have to stick to the 14 days NPO (NPO means no food).
Besides being hungry, he seems really happy. He's was puffy again so they gave him some lasix and wrote the script for diarell, which is another diaretic. He will now get that every 12 hrs. It works like lasix but it's not as strong of a kicker. It's more of a long term med, which if fine because I know he needs it right now.
Tonight he has been on 25 ml or less of oxygen and they even tried him at room air a few times but that only last a few minutes before he would start to dip below 87. (His blood oxygen level needs to be 87 or higher) So to some up the last 24 hrs, he had a good night and a good day, was happy but hungry and is once again on the rise to improvment and close to being home with his mommy and daddy. He also got the repogal tube out today. That is the tube that rtavels from his mouth to his tummy to suck out the air and anything that goes in there. Since his belly is not distended they stopped the suction yesterday. Then took the tube out today since there was nothing building up in the belly. With that said, this means I took some new pics. YAY
Oh and get this (I know he has a lot of fluid on him right now but) he is weighing in at 3 pounds 15 ounces.. Can you believe it. I am sure once the lasix kicks in and the diarell does it's job, he will pee off a lot of the fluid and then we will know what his true weight is. But for now he is almost a 4 pounder...

August 23, 2006

Well well well... Aiden's belly still looks better and hs xrays have shown that there is still NO free air around his intestines. He is still on nasal canula ans staying at 50 ml of oxygen or less which is awesome since a lot of preemies are sent home on 100 sometimes 150 ml..
He did seem a bit antsy again tonight like last night but I truly think it is cause he is hungry. When he fusses I give him the binki and he takes it and settles down for a while until he either falls asleep or realizes he isn't getting a full belly from it. I feel so bad that he isn't eating. Think about it, if you ate every day for a week every 4 hours and then all of a sudden stopped for days your tummy would be all twisted with hunger pains too. I know I don't want them to rush his system but I do hope he gets to eat pretty soon. From the sounds of it though, I think they will definetly feed him before the 14 days is up. I am not sure how little the first few feeds will be. I don't think they will start at 2 cc's again since he was on just about 24 cc's every 4 hrs before he got sick.
I do cross my fingers that after this battle with his GI system he has some "great" luck and don't have any more issues like this. other then him eating, like I said his GI issues seem to be getting a bit better so now our focus will be on his eye exam on monday and his bili levels in his blood (the stuff that makes him jaundus. (sorry I am sure that spelling is way off)
We have a family meeting tomorrow with the doc so we will find out more. Last meeting was great, then Aiden got sick. I am hoping this meeting will be good too and Aiden will sore through this rough patch and come out on top of the world.
If you all could only see him in person. He truly is amazing!!! He is going to be a kid that keeps me on my toes.. (how I look forward to that)

August 22, 2006

It's a happy day for us all... They took Aiden off the vent and he is back on low flow nasal canula and doing well. Another great thing was I got to hold him today and boy did I miss that. I haven't been able to hold him since the day he got sick so we both enjoyed today very much.
He's now at the point that when he is awake, HE IS AWAKE! Very alert, looking around, and seems to like the lights now too. All in all it was a good day today. The doctors, nurses and most of all us and Aiden all seemed very pleased that things are progressing the way they are.
I thank every one for all there thoughts and prayers and all I can say is keep them coming.
I'm going to keep this one short and sweet and leave it at, we are on our way back up. YAY!!

August 21, 2006

There was more talk today about taking Aiden off the vent and ssing if he can hold his own on nasal canula again. This is a good thing but everything at this point scares me. It's good cause they wouldn't attempt it if they truley thought he was going to fail but scary cause if he didn't do well and had to go to CPAP that could just cause more problems since CPAP pushes air into the belly. In that case they would probably just tube him again and put hm on the vent.
They were also waiting for him to be more active and get his energy back and well I think they got what they asked for cause tonight he was fighting that breathing tube with everything he had. He wants it OUT!!!
Good news for the day is his belly distention went down. It went from 29.5 cm to 26 and has been staying between 26.5 and 26. His xrays have been looking better and better and he is still going #2 but there is still blood in it. The doctore told me it will take awhile for it to test negitive, but it's not that bright red blood anymore which is good.
She also mentioned that she isn't sticking to the "no food for 14 days" rule. She is taking it day to day and going to see how things progress. She said that she is feeling this could be just a bout of colitis and not necrotizing entrocolitis (NEC) again. Although similar they are different. Either way it is being treated like NEC and that is fine, I want him to get better and this should do it. If it is just colitis then that is better then NEC and the antibiotics should work like a charm.
On a sour note, Aiden had his eye exam today and has stage 1 ROP zone 2. This is very common in preemies and could correct on it's own and I am hoping it does, but we won't know, only time will tell. ROP is Retinopathy of Prematurity. You can go to www.charles-retina.com/rop-faq.htm It will tell you all about it and the treatment.
He will now have an eye exam every week to watch it and see if it worsens or corrects. i've been told it usually get worse before it gets better and from what the doctor said today, we are hoping that it stays stage 1 and goes to zone 3 for the next eye exam and then just corrects on it's one. but that would be a perfect world once the see ROP and we all know, this world is everything but perfect.
Back to the positive notes, they gave him blood today because his crit was low, and gave him lasix in between the transfusions. The lasix will help him pee off some of the fluuid he is holding on to. And it's working so far as it usually does. He is still puffy but starting to look like my little Aiden again. I spent alot of time with him today half of the day (about 11 hrs) and will again tomorrow. Ijust want to be there if they take him off the vent and make sure he is ok. i know it's the doctors and nurses job to care after him, but being his mom I can't help but want to be by his side and "protect". To be honest I feel really useless. I can;t really do anything but sit there and hold his hand, but it's got to atleast make him feel a little better to know I am there. Or manybe it just makes me feel better.
I know I should probably go to work tomorrow but it's hard. My head tells me to go because its out of my control and my heart tells me to stay with Aiden cause he needs me there. So I'm going to do a happy medium. I'm staying out again tomorrow and then will go back on wed and finish the week out. All i can say is I'm doing my best trying to juggle the hospital visits and work and everyday life. I'm doing my best trying to juggle the rides on the emotional roller coaster. I just hope the rest of the world can understand that and be patient.

Keep praying for my little man to get well and strong and come out of there sooner then we think. Everyday is a new day and a new day is one day closer. Right????

PS the picturs posted are from Friday before he got sick and put back on the vent. I haven't taken any new ones because I can't bare to take anymore with him on the vent.

August 20, 2006

I'm just so tired.. It took me a while to fall asleep last night and I didn't sleep very well. When I did get up this morning I was tripping over myself. My stomach is in knots and my head hurts from worring so much. I know I am suppose to stay positive and I am trying, but I just scared. I know Aiden is stronger and bigger this time but I know he has already been through so much that he has got to just be tired at this point of fighting all these bumps in the road. Maybe it is just me who is tired and he is a lot stronger then I am. I hope that is the case, so he can whip this and be done with it.

As for peanut, well all day he was just sleepy. He didn't move much and his tummy was really distended. It measured 29 cm and that is way up from what it was (25). They took him off one of the antibiotice and he's just getting the singel one that goes in every 8 hrs. This one covers so much and a lot of gastrointestinal things.

Tonight he woke up a little but here and there and looked at me as I alked to him. I can tell he isn't liking the vent tube in his mouth, and they did talk about removing it abod putting him back on the nasal canula but then decided not to and to wait. He has been breathing over the vent here and there but when he gets sluggish he rides it, meaning he is only getting the breaths given to him by the vent and since it was so hard to get him tubed again this time due to swelling they chose to wait a bit longer.
He did go to the bathroom a few times today and there is still blood in his stool. Not bright bright red blood but it's still in there. The Xrays have showed that air is moving through the intestines which is a good thing. The first two showed darkness near the retum area, which makes you think something is worng and the air is not passing through. But the last few showed air all the way to the bottom. As I type this I feel like I am talking about weeks ago and not tonight. It is all so unreal that this is happening to him yet again.

At the rate we are going now, if the antibiotics work, and Aiden does perf his intestines, then it will probably be about 3 weeks before they will fed him again. He'll start off with 2 cc's like before and have to work back up to full feeds. All this sets us back ( I am guessing) about a month or so. I already hate going to the NICU. Not because of the people, just because it reminds me more and more that he isn't home and time is no longer flying by. I hate not being there every second but when I am there I hate the fact that I am so useless. I feel helpless because I can;t make him better.

Please everyone keep praying for Aiden. We need our little boy to be ok and have the chance every kid should have. To grow up big and strong and have a good life with all of us who love him. Keep sending the positive energy, I know we could all use it, and I thank you all in advance

August 19, 2006

It has been a really rough night. I called to check on Aiden about 2:30 AM and he was doing fabulous. Then I called this afternoon and again he was doing great. Eating pooping sleeping.. Just in perfect baby mode.
I got to the NICU for the 4pm change up and to hold him for our 4 hrs mommy and me time and chaos hit. I changed his diaper and in it looked to be a bit of mucusy blood in his stool. This didn't seem right, so I put it aside, did all the things with him I needed to do and waited for the nurse. She took the diaper, did the hema test on it, which came out positive and had a look on her face. I said that was positive huh? Her responce was yes, and since she doesn't have Aiden she asked, Does his stool usually look anything like that. My answer.. NO
She then went to call the doc to take a look and I finished swaddleing up Aiden to hold and find out what was going on. We sat in the rocker and about 1 minute into it he bradied. A brady is when your heart rate goes really low and you stop breathing some times. That one lasted about 10 seconds, then about 10 seconds later he had another brady for about 15 seconds. Now I was getting nervous. I've seen him brady before, it's common with preemies because they forget to breath sometimes. But this was different, he went gray on me, and I was scared. I put him back in his isolette and kept him stimulated by rubbing him to make sure he was ok. Then once he was fine we changed his diaper again since right before the brady I felt him "go".
Well that diaper had a mix of stool and blood too. Now I was freaked out. What the hell was wrong with my baby. They stopped hthe feed he was getting and waited for the doc who requested an xray. The xray came and we waited for the results.
The results came back...... Aiden has NEC again.. This has to be a nightmare.
My mom stayed with Aiden and I ran to call chuck. I told him what happened and just cried.
How could this be happening again. Aiden was doing so well.. He was doing great!!
I went back in and sat beside him for a bit (about 20 mins) til my mom had to leave. I walked her to the elevator and then took a few minutes to get myself together a little bit more. When I went back in, they had the isolette open and the privacy sheild up. Ok what now? The doc came over to tell me that they have to put Aiden back on the conventional ventilator again, that he stopped breathing. They are also trying to get an ART line in to monitor his blood pressure contiunesly.
Now I had to wait in the waiting room and was really upset. I was gone for 10 minutes. What happened in those 10 minutes, what's wrong is all I kept saying to myself. I called Chuck again to fill him in and he said I'm calling someone to come in (he was at work) and I will be there ASAP.
It took them about 2 hours before I could go back in. I'd get an update here and there but it was a while. None of the information was good. He not only stopped breathing but his heart stopped too, so they had to give him medicine to keep it going, this was now causing his heart to race but it would settle down after a while. They confirmed the NEC and have stopped all feeds. He is back on two antibiotics for 14 days, one he gets once a day and the other is every 8 hours. They will do xrays every 6 hours to check for any changes and if need be prep him for surgery. He also has an IV in his head and they couldn't get the ART line in because he is still really puffy.
They also changed his diaper again and it was bright red blood.

My head is going a mile a minute. How does a baby go from finally being ok and breathing on his own, to not breathing on his own, to his heart stopping, and to haveing NEC again.

I'm staying positive or trying to! I know this time he is bigger and stronger then he was before. He needs less oxygen and isn't on all kinds of meds like before either, so he is in a better place to fight this.
Unfortunetly we are now not living week to week and back to living hour to hour.
The only thing different this time with him having NEC is he didn't perf (blow a hole through the intestines) but that could still happen they said, if it did he will definetly have to go into the OR for surgery.

I'm scared, I truley am. I was so angry today and just snapped at one point. I just want this crap down with. I want Aiden ok and healthy and home. I want him to fight this off and never to have to deal with it again. He's been through so much, I don't understand how or why he has to go through anymore.

All I can ask is that if you were ever going to pray with all you got, then let it be now. Let Aiden make it through all this and grow up to be a strong healthy little boy. Pray for us that we can get through this with him. I need the strength to stay strong for him. We both do.

I called a little past midnight tonight and Lilly told me he was comfy. She got the doctors order for fentynal for pain incase he needs it, but so far he has been ok. She said his midnight diaper was just pee, which was good cause they worried about dehydration, and there was no blood in it. They also did an xray and it showed no changes, which is good too. Atleast it didn't get worse.
I am hoping the strong antibiotics will do the trick. I am holding on to faith here and a stroy I read about a baby who got NEC three times, and all three times it was cured by antibiotics. Since Aiden already had an extream case with a perf the first time. I hope this time it's an easy bout for him. Beat them belly bugs as I call them and show them who's boss superman.

Chase I know right now you are watching over your little brother. Take care of him for me and know that both me and daddy love you both very VERY much. The two best things I ever did in my life. I send you kisses on angels wings little guys.

August 18, 2006

And the Red Sox play a double header against the Yankees... Thank god we had a better day then them..
Aiden is doing well, he has been staying between 20 ml and 50 ml of oxygen (20 is the lowest 200 is the highest before they would have to go back to CPAP) They stopped his TPN (the gatoraid stuff I talked about last time) and now he is just getting normal sugar water with sodium and potassium. They have also started him on pergestimil 24 which has more calories then the regular pergestimil. He is now getting 21 cc's a feed and will stay there for 24 hrs before they increase, to make sure he is digesting the P24. So far so good though. He's even gotten to the point that 30 minutes before his next feed he starts to fidgit about. you can tell he is hungry. He doesn't cry often just gets antsy when he wants to eat or had a dirty diaper.
His nurse tonight also talked about trying him on a bottle in about a week or so. First they will give him drops of milk in his mouth to see if he swallows it and eventually start to try, once a day, during the day to see if he will take to a bottle, that way he gets use to it.
I look at him and he has come so far. No one thought he would make it, and he did. no one thought he would ace CPAP and he did. No one really thought he'd last on nasal canula this long and he has. He truly is a gift. He has an agenda, this little on, and he isn't going to let any one or any thing get in his way.
I said to my mom i often think of Chase and what he would have grown up to look like. I miss him so much, and it still hurts really bad for him not to be here. But I can't help but feel that he watches over Aiden and has pulled him through some rough times. That there is a little bit of my angel in Aiden as well.

August 17, 2006

He's still on the nasal canula.. Boy am I excited!!!
We had a meeting with the doc today and it was a good "report card" for Aiden. The plan is to keep uping his feeds twice a day until he gets to full feeds. (that will be by tomorrow for the weight they are using, but a few more days for his actual weight) and then starting tomorrow we will also add calories to the milk. Right now he is still getting the pergestimil, which is 20 calories an ounce, they will then go to pergestimil 24, which is 24 calories an ounce and eventually add to that to give him 30. Once he gets up to 3 ounce feeding he will pack on the weight. Right now he is on 2/3 of an ounce per feeding. He won't get to 3 ounces til he is a bit bigger since he is still really little, but an ounce right now is a full feed for him.
But considering even if he was born today, he'd still be about 7 weeks early, I think he is doing great for what he went through in the begining.
They also took him off his IV fats so now all he gets is the IV nutrition that looks like gatoraid. As they up his feeds they lower the other stuff, so he will even be off that in a few days too. Then No pik line, no IV's nothing.. He will have all his limbs free and be eating just like a normal baby. Well not from a bottle but he'll be getting milk. The bottle comes later.. Something I think he will do well with also, since he does great with his binki.
They also updated us on his last head ultrasound and she said that is basicly looks "normal" which was really good to hear. His lungs sound good and his heart too. He doesn't seem to be a baby who spells alot and they are truley amazed at his progress this far.
All I can say is he is amazing and awesome. Everyday i rush to the hospital to see him and just fall in love all over again. It's a love that only a parent can feel.
Lets see what tomorrow brings.. All i know is it is one day closer to Aiden coming home, and it's friday, two really great things..

August 16, 2006

Ahhhhhh What a day.. I get up, go to work, still feeling a bit behind and then about 11am make the call to check on Aiden. Was I in for a shock.. The nurse goes over Aiden's morning and then tells me he is on nasal canual and has been since about 5AM.. What?? Oh My God!!! This is a big step... How did this come about? We just asked about it the other day and they said probably not for another week.
Well come to find out, they were changing the canula on the CPAP and Aiden was at room air for awhile. I was told today that he did really good and didn't alert the maching once. SO.. they decided to try him on nasal canula. Not even high flow, he is on low flow and doing well.
When i finally got out of work and got to the hospital, it was about 3pm and he was still on it. That is when I found out he'd been on it since 4AM not 5... I am so excited and he seems very comfortable with it. The nurse told me if he has any problems he will have to go back to CPAP, and although he was doing good and holding his own she kinda felt like he would end up on CPAP. Well 7pm came and his night nurse Liz came in. She looked at Aiden and me holding him and said tell me your joking.. "He's still on it" My reply, yup, he was going to prove you all wrong. She laughed and said she truley thought when she came back in tonight he'd be on the CPAP again. Well I was at the hospital until almost 11pm tonight and he is still on low flow nasal canula and holding his own. As for his feeds well they upped them at noon to 15 cc's and then at midnight he will go to 17 cc's, again closer to the goal. So far he has been digesting it and not having an issue withthe increases. Within another week he should be on full feeds.
Remember he needs to be able to hold his temp, be on full feeds, stay on low flow or off completely, and drink from a bottle to come home. It's so good to know he is one step closer.

Please all this is a good time. Thoughts and prayers in numbers work. Keep them coming. I know Aiden can do it, he's a strong bugger. They just have to give him the chance and we all have to believe he can do it.

August 15, 2006

Can you believe it is already the middle of August.. Geeesh!
Well Aiden is doing great! Yes I used the word Great.. He is tolerating CPAP very well and it seems to bother me much more then it bothers him. I think they may try him on nasal canula very soon too. This I am all for.... As for his feeds, well they upped them again. He was moved to 8 cc's, then at noon today moved to 10 cc's and at midnight will be moved to 12 cc's. His orders are now to increase feeds twice a day every 12 hours. As they increase his feeds they will decrease his TPN and Lipids (this is the IV nutrition he gets) He will stay on that until he gets close to full feeds which would be about 30 cc's a feed. So we are about 1/3 of the way there. Not so bad for just starting this on the 5th of August and considering everything that went on with his belly and gut. I am still amazed. The only other thing we are now keeping an eye on is his puffiness. Today he seemed puffier to me and the nurse who mentioned it to the doctor. I have a feeling they are going to put him on a diaretic to keep him from retaining all the fluid. We will just have to wait and see.
Tomorrow is a new day and that is always a good thing.

August 14, 2006

Aiden is still on CPAP and doing really well. I asked one of the respitory nurses if they think they will ween Aiden to a 5 or just try him on nasal canula and he said to him there is not much difference between a 5 and a 6, that he thinks if he continues to do well and not spell when they take it off him to clean his face and weigh him and stuff that they should just got from 6 to nasal canula. However it does depend on the doctor. Personally I think he will do well on the canula. He seems to do fine when you hold the bag next to him so he can breath the oxygen so I'm not so sure he really needs the pressure any more, but who am I? I am sure the docs know more then me and that's fine cause I just want him to be able to sail through all this.
As for his feeds well they increased him again from 6 cc's a feed to 8 cc's and then tomorrow he will move to twice a day increases, well as long as tonight goes ok.
That's my boy.. Go Aiden!!!
(PS the pics are before he went on CPAP but I thought they were cute so I posted them. The kitty in the pic is the same size as the previous teddy bear, which is about 5 inches) It looks soooo BIG!

August 13, 2006

Happy 9 Weeks Aiden!!!
So I have been MIA for a few days and well that's ok cause I have some good news... Aiden is now on a pressure of 6 on the CPAP and doing great. They want to ween him to a 5 before they try the nasal canula but that's ok. Only one step at a time. Also he is back to digesting his milk and they increased it from 2 cc's to 4 cc's the other day and then today from 4 to 6 cc's. So far so good. He's has three "servings" of 6 cc's and the first two didn't come back, I'll know about the third once I get back to the hospital. He's gaining weight too and now up to 3 pounds 3 ounces, but some of that is fluid gain. (Probably 3 ounces of it) He is also back to being puffy and the CPAP has some to do with that. He actually looked like he did a few rounds with Mike Tyson today when I saw him. I felt so bad. They also gave him a blood transfusion because his Crit was 31.2 and a good crit is 40 so he needed that, which meant he got an IV put in, but that will come out after the blood and lasix tonight.

Back to good notes. I finally got to hear him. All this time he has had a breathing tube in so there really is no sound. Well now that it's out, it took a few days but he is getting his voice. It's a little horse from the tube, but I actually heard him cry. Although I hate when he cries, it was a good feeling to finally hear him.

Well I am on my way back in and will keep you all updated this week, I promise. I'll get some new pics too if I can, but I warn you, the poor little thing has a piggy nose right now. It's from that darn CPAP. It streaches there nostrils from here to kingdom come. They promised it will go back.. And so we hope so cause that is just truly unfair!...

Back from the visit and because Aiden had to get the second part of his blood transfusion the nurse on tonight, who was really nice, thought it be best if we didn't hold him. Since he is such a hard stick for an IV they didn't want it to blow before the blood was done. This meant daddy didn't get to hold his boy. I felt so bad for him. It's been about a week since Chuck has held him do to work and partly his own fault of not being a morning person so he doesn't get there til after work. I know he'll get to hold him tomorrow if he can get in for noon, but I still felt bad.
Aiden is still super puffy, and the lasix they gave him is kicking in. His 8pm diaper was a big one which is good. He needs to get off some of that fluid. He did tolerate most of the last feed too. There was only 1 cc left in his belly at 8pm, but I wasn't surprised since he got it late. he got fed at just about 5pm instead of 4pm, so in all that was still very good. We will have to wait and see what midnight brings.
All in all, he seems to be doing better then they expected he would do. The words still ring in my head when they thought Aiden wouldn't make it the week. Now look, he's 9 weeks old today.. Can you believe it. It's just awesome!!!
As for me well I'm still over whelmed a bit. We have so much to do with his room and finding a pediatrician before he comes home. I know we still have time and he will be there about 8 more weeks, maybe even longer, but I spent so much time there that I never seem to get anything done here. And my god, could baby furniture be any more expensive. I know it last forever and some, like the crib I got the converts into an adult bed later, can be used well past there baby years. But really people, does a dresser have to cost $500?!?! I can't help the fact that my mom raised me to like stuff that is going to last, but it's just so much. With that said, I finally did more to my baby registy, and Chucks sisters are planning me a shower. I'm actually really excited. For one it will be really fun I think and a chance to be around people that I know care about me, and two it means Aiden is that much closer to coming home. I can't wait for him to sleep in his own crib and have his own room. (Although I may not let him out of mine for the fist few months... Chuck says I won't let him out of my arms for the first few years at this rate) Hey I can't help it if I'm protective. Another funny thing is, I was always one of them people who laughed at the moms that were crazy about germs and washing your hands and not touching the baby. And now after all this, I have to be one of them nuts too. Due to Aiden having CLD (Cronic Lung Disease) we have to have purell all over the house and wash our hands, keep things clean and not pass him around alot to people for a while. Maybe a long while.
It is funny how things turn out. It's like the girl I went to school with who hated red heads just cause they had read hair and when she had her first son, although both parents had dark brown hair, her son was born a red head. Although I could have lived without these past lessons. After all this though I truly think I have paid my dues.
Well enough babble from me. Please all continue to pray for Aiden. Keep them toughts coming and I know he will do it. He will get himself off CPAP and continue eating. He'll put the weight on and come home. (Sept 28th can not come fast enough I tell ya) That was my due date and a good idea of when peanut will be home where he belongs.

August 11, 2006

Happy 2 Months AIDEN!!!!!!!!!
It's 1:37AM and I just called to check on him. Ijust left there less then 2 hrs ago, but wanted to see if they fed him again for the midnight feeding since I was rushing out the door at that time to try and stop from being locked in the parking garage. But who cares about that. The news is that nothing came back at midnight, so he finally digested the milk in his tummy. It took him about 12 hrs. So this time they gave him 1cc and will check at the next do up as they always do, and see if it's still lingering in there. Let's hope he does ok. Also they did a blood gas to check and see if the CPAP was working ok and it came back as good as the morning one. YAY!!!.. If he can keep this up and get weened down to a pressure of 6 then we can talk about putting him on nasal canula. Now that would be AWESOME!!!!. The doc did say at the family meeting that we will try for 10 days on CPAP and see if we can get him off it by then. That would be so awesome. The chance to be like a normal baby and be picked up anytime and graduate to intermediate.. Maybe him and Beau will become roommates again. Now that would be cute..
Keep trucken my little man. Just remember all this is worth it, you can do it and I am already so proud of you. Your my miracle and I LOVE YOU SO!!

August 10, 2006

Well yesterday Aiden was doing really good on the vent that they weened him down some more and when they did a blood gas this morning it was good so I was told he was going to CPAP at noon time. I got out of work at 2, got to the hospital and YES he was on CPAP and doing really well. We had our family meeting with the doctor and it was all good new. Aiden was doing well on the vent and was now on CPAP, that he is gaining weight and it seems to be actually weight not fluid weight (some is fluid but not like before when he was super puffy). And he is still getting the trophic feeds of 2cc's every 4 hrs. They did however talk about cutting him back to 1cc since as of yesterday he was having problems digesting the milk. It seems like it is taking him longer then 4 hrs to digest 2cc's and sometimes he doesn't digest it at all. Part of this could be just the fact that his belly hasn't really been working for 8 weeks, now all of a sudden, it has something to do and is a bit over whelmed. The doc chose to keep giving him 2cc's but to change it from breast milk to pergestimil. It's a formula that is easier to digest. We will see if this works but so far it's about the same. Sometimes he does, sometimes he doesn't. I think in all due time it will work out and his belly will be ok. Or I hope anyway, I try my hardest not to worry and stay positive, but it does scare me that he isn't eating like a "normal" baby or even the other babies that were born close to his age. I then have to remind myself they didn't get NEC and Aiden will be ok.
Now as for this CPAP thing. Well I know it's a good thing but I almost cried tonight when I left. Actually I did cry. They changed the little nose guard they put on him to protect his nose and he was so happy when they took it all off. Then when they put it back on, he hated it. His poor nose looked so sore and he just looked at me like "mom tell them to stop".
I so wish that he didn't need any of this, but since he does, I have to deal I have no choice in the matter. I'm just so affraid it's going to hurt his little nose, or reshape it to grow funny. He's been through so much, the last thing I want is for him to have something else to go wrong.

It's just fustrating. He's doing good and 2 months old tomorrow. He'll be 9 weeks on sunday and I am just so tired of leaving him behind. I just want to have him home with us. For him to be here snuggled in his crib where he belongs. Not in the NICU going through one thing after another, with a million people taking care of him. Granted I love his primary team, but I just want to finally take care of him and know he is ok. The next 8 weeks can not go by fast enough.

Please y'all keep them prayers coming. Pray we all make it to a very happy ending..

August 8, 2006

Aiden looks great and is really happy, which makes me super happy to see. He is having a little issues with digesting some of the milk here and there, but I expected that to happen on and off for the first week. They weened his vent setting back down again and are going to do a blood gas tomorrow. If it's good then they are going to ween him some more. They said by the week end if all goes as they plan he will be on CPAP.
We also got a new spot in the room over near the window. We have Beau's old "condo" lol. He graduated to intermediate, so is no longer in Aiden's room. But we are very happy for him.. Go Beau!!! Yay.. (You can read his blog too at www.beaujacob.blogspot.com)
I see him and Aiden being great friends later in life. So there isn't much else to update today. The burn on his leg looks better, he's getting bigger, and now we are another day closer to coming home.. YAY!!! Just keep them fingers crossed (everyone) that he keeps eating ok and goes to CPAP but only for a little bit and can then go on nasal canula really fast.. Then he is really closer to going home... Wooooo Hooooooo and I got to hold him like a big boy, just like chuck did yesterday.. That was fun cause I got to look at him and talk to him until he fell asleep.
Oh and by the way the bear in the pic, it's body is about 4 inches, which helps you see how tiny "peanut" still is, but how good he looks..

August 7, 2006

First day back to work.. Wow that was strange, it even looked different, but the best part was being able to actually say Aiden is ok and doing good. He's eating still and tolerating it well. Nothing has been coming back in his tube. He even pooped like a baby LOL. Yes we still get excited about him pooping! They did change his rate on the vent back to 19 over 6 but that is fine. He is still looking at CPAP at the end of the week. He also got his eye exam today and no signs of ROP. They said just immature. This is a very very good thing. Most preemies will get ROP and it gets worse before it gets better. Out of the percent that get it 85 percent correct on there own between 38 and 40 weeks, some needing laser surgery, however in very bad cases (stage 4) a baby can become blind. SO like I said it is a good thing that Aiden is now considered a 32 weeker and has no signs of ROP. He gets his next exam in 2 more weeks.
He has gained a little more weight and is 3/4 of an ounce shy of being a 3 pounder. He now weighs 2 pounds 15 1/4 ounces.. AND he looks so good. Everytime (like today and tonight) that he gets a new nurse, they always comment on how great he looks (and cute he is) for a baby that has had so much and been so sick that he doesn act or look sick at all. They even said today he is so strong with his grasp and head movements. That really makes you feel good. I am already counting the days until he comes home. One more down, a "few" more to go..

August 6, 2006

So far so good. It's been a slow start for feeds but that is perfectly fine with me. A few times when they suctioned back from his belly (they do this at the end of every 4 hours before they feed again) there has been milk left in his belly. Sometimes all of it and sometimes half, so they just refed him the milk as long as it was "just milk" and it has been. Then today after his 8am, noon, and 4pm there was nothing in his belly but air... So we gave him his 8pm feed while me and Aiden had kangaroo time. I don't know just yet if anythign was left at midnight because I haven't called in to check just yet. Other news is they lowered his pressure settings on the vent again. He is now 18 over 6. Once he is 16 over 6 he will go on to CPAP. He can go now but with the feeds just starting we wanted to wait and give him a chance to adjust.
His weight is now 1310 grams which is about 2 pounds 14 ounces.. He's almost a 3 pounder... I can only imagine how big and how fast he will grow once he really gets eating.. That's my boy!!!

August 5, 2006

It's my birthday.. yay!!
And the best gift ever was that they started trophic feeds today with Aiden.. 2cc's every 4 hours.
This started at 8am, and he's been a bit slow digesting the milk but I figured it would be like that. I think his body just needs to get use to having something in there. So far any suctions that they did came back only milk, it was not bilious, (no bial) in it. If he tolerates it ok they will bump him to 4cc's every 4 hours, but I think at least for tomorrow he will stick to the 2cc's.
Then after Andrea & Neill's baby shower, we went back to the NICU and I got to kangaroo for about 2 hours. Aiden did great, he loved it. The funniest thing was, he usually always has his hands up near his face or shoulder while sleeping on his belly. Well he started out like that butt hen moved to hold on to my hand. He actually put his arm straight down his side to find my hand and held my finger. Any time I moved he'd find me and hold tight. (What a birthday) ..
He is still doing really good on his vent too so now I am consentrating on the feeds and it correcting the issues he has from not eating. The jaundice from the build up of the bilirubin in his blood.
I know it's one thing at a time so right now this is my one thing.. Then we will consintrate on CPAP and getting off it asap.. The also took out his IV tonight so all he has now is the pik line.. Free limbs.. What is a peanut to do... One thing is for sure, he has been very happy and alert the past few days. And has come to love getting his mouth suctioned. (strange child) Oh and he loves it right after diaper change. Can you say Super Happy Baby... He's just awesome..

August 4, 2006

Well it went very well today. They did the upper GI study and the results showed no blockage. How excited are we!!!!! Can you say Happy Early Birthday!!!
We also had a family meeting but that was just what I expected, to make sure we all got introduced and are on the same page. To go over Aidens recent issues and tests and what the "plans" are. As of right now since the GI studies came back good, they should be feeding Aiden tomorrow. This is the best birthday gift I could ask for. My little man gets to eat. I am so excited and happy for him. He needs this so badly..
They also lowered the pressure on his vent, they are still talking CPAP but are going to wait a few days to see how he does with his feeds first since CPAP can blow air into the belly. Besides although it is a "graduation step" for him, I am in no rush for it. I know and so does the doc and the nurses, that he is going to hate it. It is very annoying and more so to babies that have previously been intubated as Aiden is.

Another nice thing (and very special) was Aiden's nurse liz made me a birthday card from him to me eith some pictures of him all dressed up in his onesie and matching hat. He looked so cute and it was the best birthday card I have ever gotten. And a day early too. Haa Haa...

Sleep well little man, know I love you and I will see you tomorrow.
I send you kisses as I do to Chase every night on angel's wings. Grow strong and healthy so mommy can pack you up and take you home. xxooxox

August 3, 2006

Wooo Hoooo, Aiden had the contrast study today and besides pooping all over the table, they saw NO blocked areas.. This is awesome. Now the attending doc is going to check with surgery and see if they want to do an upper GI study since they only did a lower GI. If they do, he will have that done too. If they don't then he may be eating as soon as tomorrow. I am so excited and happy for him. Finally my baby will get the chance to eat again.

I finally got to see him about 4:45, when they brought him back over from Children's it took them a bit to clean him up and get him all cozy in his isolette. Once they did I was right there to give him kisses. He was really sleepy (and I'm sure if they gave me an enima I'd be out of it too) Ouch, the poor thing. But it had a great out come, no pun intended..
Julie and SOfie came to visit today and were so excited to see him. It was good to sit with the girls and talk for a bit too. I miss that. Then Auntie Elisa came to see us while we were kangaroo'ing.
That was a good time. I got him at 8pm and he stayed (sleeping most of the time) on my chest until about 11:30pm, then we changed him, and changed him again, oh and again (he pooped all over lol) and then got him dressed in his preemie onesie (that still looks huge) and all snug as a bug. He was then wide awake too, smiling and laughing. Chuck talked to him and stroked his head and off he went to dream land. (I often wonder what they dream about) but he looked so peaceful.
We have a family meeting tomorrow to touch base with this months attending and to go over all of Aiden's issues. It should go smooth, for once I actually don't feel knots in my tummy over it.

All I can ask is for every one to keep us in your thoughts. Keep them prays coming, not only for Aiden but his little buddy Beau and all his other little neighbors in the NICU. You can't help but to pull for all of them. So if nothing else, we can be there cheering team. GO Babies, Go Aiden!!

August 2, 2006

Aiden got his line in. YAY!!! They did a "cutdown" at the bedside, so it spared him from being sent over the Children's. They just turned his isolette into a little OR, and presto whamo, luck was with us today. They made an incision and put the line in his leg. Now they can get rid of some of them IV's (they took one out tonight and may take the "long line" out tomorrow morning. That way he will have the surgical pik line, which has two ports, and one IV. Eventually he won't need an IV if all goes well after he is off the anitfungal meds they are giving him for the yeast infection. Which I might add, is GONE!!!!!!!
As for tomorrow, word is, he goes for the contrast study of the lower GI. They will give him a enima of barrium (the poor thing) and see how far it travels. I am hoping all looks good and then we can feed him either tomorrow night or friday. (Please all, keep your fingers crossed, he's been through enough, and I don't want to have to send him to the OR for a surgery on his belly)
Another good thing is Micky is back. She was out for a while and well I always feel comfortable when Aiden is in her care. She is great to him..

August 1, 2006

Yesterday was a busy day for Aiden, they attempted at two different times to get a pik line in for his IV nutrition. (A pik line is a tiny tube they feed through the vain until it reaches one of the main vains in the body that are stronger then the little vains in your arm or hand. This way they can put a good amount of meds or nutrition into it with out it infultrating or blowing.)
Well the first attempt was a no go, so they gave AIden a few hours to rest and then tried a different spot. They got this one in but not as far as they needed it to go, therefore it is not a pik line, but otherwise known as a "long line" it's stronger then an IV but not as strong as a pik.
The plan after this was to wait for the new attendign to start (today) and see if they wanted to try and use just the long line, or send Aiden to surgery to have a line placement of a pik. My pther question to the doc was what about the contrast study and feedings, since he did so well with them on saturday I was hoping they would bite the bullet, but the answer I got was that they were going to wait for the new attending to decide what she wanted to do. (Fustration sets in) Can you feel my blood boiling yet?? Once again we are back and forth with the "to do the study or to not do the study" I'm getting tired of this and I want the answer solved in the next day. Enough is enough already. I know Aiden has great doctors and staff, but they need to get on the same page.
As for today well we checked in and the new fellow on (attendings and fellows change every first of the month) has decided to attempt a pik line before sending him to the OR. New doctors, new techniques, new opinions, is basiclly what they said, so they wanted to see if they could get one in since the fellow yesterday couldn't. Here is hoping!!! That would mean one less surgery for Aiden, and that is a great thing!! His cultures from the 28th and 29th are negitive so the yeast is gone. He will be on the meds for a while, but they have taken one away.
As for his vent, well he is doing great they said. From the settings he is on (20 over 6 with a rate of 24) is a wonderful thing. He usually breaths over the vent and that is good. The only time he "rides it" is when he is in a deep sleep. Now they are talking again about CPAP, which to be honest I am not in a rush for. I know he is going to hate it, and another nurse agreed with me, she doesn't think he will like it at all. Plus it's going to streach and pull at his nose, and he has such a little little nose. They told me it would go back, but I hate the thought of anything that "bothers" him.. We'll just have to see how it goes.
We have a meeting with the new attending today and are on our way.. Wish us luck..

Back from the "visit", just got in, and it's about 3AM, so this will be short.
Aiden looks happy and laughed at us tonight when we were making funny faces and talking to him. It was so cute.. Chuck started cracking up.. The fellow who looked at him today couldn't see a spot to get the pik line in so he didn't try. This means Aiden is going to the OR tomorrow to have a line placement done. I guess the one they are going to do it NOT a pik, it's bigger and comes out of the neck or the groin area. I know he needs it but I just feel so bad. After this is done, the next thing will be the GI study to see if anything is "blocking" and if so then again to the OR to have a BIG surgery. I am hoping that nothing is blocking and in that case they can start feeding him like before and see how it goes.
His leg (the burn) looks better, and they gave him more lasix today to keep the fluid off so he looks like Aiden and not someone elses puffkin.
As for me well I am back to work on Monday. They were great to "meet me in the middle" and let me go back part time hours for the month of August. By then I think Aiden will be a lot more stable and I'll go back full time until he comes home. That will be hard but I know I have to do it or we are not going to have a home for him to come home to. Chucks already back to work and he's doing well. Always there to keep me grounded. He got to kangaroo tonight with Aiden so he's on cloude 9 right now. They look so cute together. I can't wait to take him home. That is going to be a strange day.