Lilypie 3rd Birthday Ticker
Lilypie 3rd Birthday Ticker

Monday, July 31, 2006

July 30, 2006


Happy 7 Weeks Aiden!!!
Aiden looked good today, not as puffy and his lef not as swollen. The doc on, the same one who fed him, decided to stop feeds until Dr P returns on monday. THis was sort of aggrivating because he was tolerating the feeds and digesting them and even pooped today twice. I am hoping they will start them up again tomorrow. We will see..
I didn't have a super long visit with him today because me and chuck went to dinner with Andrea and Neill (little Beau's parents). It was much needed adult time. And I slept late today, also very needed. After dinner and out time out we popped in to say good night to him and he was sung as a bug having a really good night. He lost a few IV's today and had to have them replaced, and well they are in talks about a central line placement which means surgery but his cultures from the 27 grew yeast so we have to wait for the ones from the 28th to see if they are a negitive or not. If they grow nothing tomorrow then that is GREAT news.
THe surgery for the line placement should be a quick one but it still is scary any time they have to put him out. I am sure he will do fine, I just wish it was the perfect world and he didn'thave to go through all this stuff. One day closer to coming home... One day closer, thats what I remind myself... My prays and thoughts are with you little man, and when we are not by your side, as gommie said, I do believe Chase is watching over you. Both of you are the two greatest things to evr happen to me. I love you with all my heart. Sleep well til I see you tomorrow. xox

Sunday, July 30, 2006

July 29, 2006


What a day.. It has been filled with mixed emotions.
I got in to the NICU today to see that they fed Aiden again.. Hmm ok that works, but then to find out it was going to be stopped again because the doc that was on felt the current attending who was off for the week end, didn't plan to feed Aiden until after a contrast study. She also thought that surgery told us they wanted the study first too. When I talked to his nurse I had mentioned that from what I was told by the doctor and by surgery was that it was the doctors choice to do a trial feed again first but that is what they would do to, and that the doctor agreed with that. Then just the other day, one of the docs on, told me she was pushing for the feeds first to see what happens before the study because the study could be inconclusive.
Long and short of it, the attending on yesterday agreed to continue feeds (2cc every 4 hrs) as long as he doesn't do anything "funny". If anythng funny happens then they will stop.
On that note, Aiden got feed at noon and at 4 he digested it, then at 4 he was given breastmilk, and at 8pm it was still in his belly. Because it was not bilious, they put it back in. At midnight it was digested so they gave him another 2cc's. She checked again at 4am and he had 1cc left, so it went back in and she added another cc of milk. So as it looks right now he is digesting the milk, just a bit slow. Fingers crossed he keeps it up and can increase to more then 2cc's at a time.

The bad news for today was Aiden's IV in his left leg infultrated and because it had the nutrition solution in it, it burned his skin. It was leaking so they went to go check it. When removing the tape a blister had formed and was full of the nutrition liquid (the infultration) and popped burning him. He now has no skin (the size of a nickle) on the back of his left leg. This may seem like a small size to you but Aiden is tiny so it's big to him. You can't see muscle, which is good but it looks so sore and is going to take some time to heal. They consulted plastics, so lets see what they say and think. So as you can imagine, we are losing IV access with Aiden. The talk is, and his night nurse is pushing for, a central line to be put in. First we need to make sure the cultures for the yeast infection stay negitive before they will put one in, but at this point he needs it. He has no more options. The scary part about a central line is he once again has to go under and have surgery to do it. The benifit of having it is he won't have to have the IV's in like now, but the draw back is putting him out again.
I just worried. Aiden is getting sick from not eating. His liver is taking a big hit and causing the jaundice and now the IV situation and the burn to his leg. I was just very emotional today. He needs a break, something has to give already and give the poor kid a break. It just breaks my heart. Today he was so upset when it was diaper time because his leg hurt and he didn't want anyone touching it. I felt so bad that after I calmed him down I went to call Chuck and just broke down. It kills me to see him upset and know there is nothing I can do. I so badly want to hold him and make it better. I just want to take him home, and everyday it is getting harder to leave the NICU without him.
I'm very overwhelmed at the moment. I'm super tired, I constantly feel "guilty" if I'm not there all the time, and it seems like when I am not there somthing else happens. I just miss him and I'm so worried about him I can't think straight. I try to look forward to him coming home by the end of Sept or so, but I know if he's not eating he's not coming home by then. I just want him to get better and be ok. So please all, keep praying for him. Keep sending them "happy" thoughts. I know AIden is strong, he has proved that over and over to me and sometimes I think he is stronger then I am, but right now he needs a big break.

Saturday, July 29, 2006

July 28, 2006


What a very long day. I was at the NICU for a little over 12 hours today. It got later and later and I just couldn't bare to leave. I am really getting tired of "leaving Aiden behind". It's killing me, I wanted to cry.
He is now on two antifungal meds for the yeast infection just incase. He now has 3 IV's in and is still puffy. He's got adema so the fluid shifts around depending on how he is laying. He did look better today in the face. His eyes were not swollen like last night and he weighed in at 1260 grams (down 40) so that is good. He got another eye exam tosay which ruled out the yeast. They said they were going to do it Monday but when I got in today they were already in the middle of it. Well no yeast there, so in all honestly, they don't know where the source of the yeast was from. All I know at this point is I want it gone so they can try to feed him again. He needs to eat, he is becoming jaundic do to not eating. The liver can't get rid of the bilirubin building up and that can cause issues too. I hate this feeling of worry, it really eats you up inside. He did go poops twice today, once at 4am and again at 8am. Both maconium and the second one was a lot from what I am told. I hope this means he is pushing everything out so when they, if they, attempt to try feeds again, it will go off with out a hitch. If Aiden can get over this infection, start eating, and digest with out an issue, he will then go on to CPAP and then just nasal canula and our goal wil be to be home by Oct 1st the latest. But before we can even think of that he needs to start eating and digesting.

I'm just stressed out, I think the owrry of work coming up, not being able to see Aiden as much once I am back to work, and all of lifes normal ups and downs is building up and getting to me. I'm just tired, I don't get to bed til 4am most nights, then in the morning I am dead to the world and trying to function to do it all over again. I just want to know Aiden is going to be ok, then maybe I could sleep at night. I miss him so much and just want him home with me. I hate not being with him and walking out the door every night. I know every day is one day close to the goal, but I just wish it would "fly" by and Aiden was here with me NOW!!!

Thursday, July 27, 2006

July 27, 2006


Another long day of tests for my little one.. He was a bit cranky today and no wonder. Today they did an Ecko, a Lumbar Puncture, an ultrasound of the belly, took out his pik line, and sent out more blood work. The news last night after we called and checked in was Aiden, once again has a yeast infection. This is still worry some, but not a minute to minute thing like it was before when he was a lot sicker. Now he has a better chance to fight it. My hopes are if he fought it off before when he was really really ill, then he can kick it this time too.. I have to think that or I might loose it. I hate him having another hurdle to jump over. Due to this they have taken him off the 3 antibiotics for the "infection" because it is yeast, antibiotics will only contribute to it. So they are now giving him an antifungal, same as before when he had the yeast infection.
He himself doesn't seemed bothered so much by it, but did seem more puffy today. And when we weighed him it showed in that too. he is now 1300 grams (2 lbs 14 oz) with alot of that being fluid gain. Although he is peeing fine and even pooped some maconium today which is great. You could tell it was umm, in there for a while so that makes me think he is getting stuff through his intestines a bit better. Hopefully the next feeding trial with go off with out a stitch and all will be ok, but first we have to get rid of the yeast. To do that we need 2 negitive cultures which to be negivite they are required to go for 72 hrs, if they then don't grow anything they are negitive. So if the one from tonight grows nothing and the one from tomorrow. The soonest Aiden can try and eat again would be about Tuesday morning...
On top of that I am suppose to go back to work on Aug 7th, which is about a week away. That's going to be so hard. I was hoping they would let me come back for part time hrs for a month, then back to full time until Aiden comes home, but I don't think they will. Working for the state can sometimes suck. They are not very flexible when it comes to things like that. It's either come in or be out, it's never a happy medium..
So I am going to do my best if they say NO and work til Aiden is able to be home, then I'll be out for a while to care for him. However if something comes up and he has to have the contrast study and it shows he needs surgery, well then I will be out a bit longer no matter what the "job" says. That is my little boy and he comes first.

Keep them prays coming all.. We could use them...

Wednesday, July 26, 2006

July 26, 2006

We had our meeting today with the surgons and it went well. We got a lot of questions we wanted answered, finally. What the "plan" was and the time frame being the key question.
Aiden is still hanging in there. He's such an angel, making silly faces and just looking at you and watching you. It's the best. He is now on 3 antibiotics until his WBC comes back as normal and also got a test done to check for a UTI. But all in all he seems comfy and very happy.

A bonus today is we got to kangaroo for 3 hrs. I was so excited and Aiden did great. My mom & dad (Nonny & Pops) came in to visit for a bit, and Nonny will be back tomorrow to spend some time with us. I miss my mom, so I'll be happy to see her. It seems I don't get to see her as often as I like too with all that is going on.

Aiden's weight is now 1260 grams (about 2 lbs 11 1/2 oz) He is almost double his birth weight. I know some of this is fluid gain but it is strange to see him so big already and at the same time still so tiny.

In the meeting today the surgon said to me that he never thought we would be having a conversation about Aiden after the NEC issue. He in all honesty didn't think Aiden would make it. He said he is a remarkable and very strong little boy. I was so proud of him at that very second, and my reply back was, I told you he is my little superman. He is my idol, and as little as "he" is, I look up to him.

Show them how it's done little man.. Keep laughing and smiling and be strong. We can't wait for you to come home. We love you!!! xoxo

Tuesday, July 25, 2006

July 25, 2006

Stupid set backs.. UGGGGGGGGGGGGGGGHHHHHHHH!!
Well I called to check on a peanut and they have stopped his feedings. At 8AM the 4AM feeding was still in his belly. When they suctioned they got back the entire cc. Also Aiden's CBC came back bad, they actually did another one to double check thinking it was maybe a lab error. Nope no error. SO he now has another IV in, is going to get a blood transfusion, is on two new antibiotics because whis white blood count is showing an infection and we are back to square one.
Surgery came in to look at him and then asked if we did the contrast study before feeds. This makes me angry.. I wish I was there, I think I would of yelled at the surgon to say NO cause YOUR NOTES said not to and to feed him. Not that feeding him caused this, because I don't know what caused it, but I am annoyed and feel like at times there are way to many hands in the cookie jar. Grrrrrrrr!! The only good news I got over the phone was that they did and xray and the nurse said it looked good. However I know to take that with a grain of salt like everything else. Things change in a matter of hours (proven just by the last 24) but I can't help but to get angry at the world sometimes. I just want Aiden to be ok and come home. He's been through so much, for the love of god and the kid get a break... So I am off the the hospital earlier then I have been going. This way I can be there incase anything else comes up and so I can see my peanut for a longer visit.
Keep praying guys.. Pray Aiden makes a fast recovery and pray to keep me from going crazy.

I'm home from my visit and Aiden is doing well (I think).. SOmetimes I think he looks at me and says calm down ma, I'm fine, chill out, this is no big deal.
So with that said, I spent time with him today and he seemd comfy as usual. They are weening his hydro still and he is almost off that, and they are still weening the vent settings. At midnight they dropped his rate down to 28. So now he is 20 over 6 with a rate of 28. The pressure is the 20 and the 28 is how many breaths the vent gives him. The lower they can go means the more breaths Aiden takes on his own and so far so good. now they will wait til 4AM and draw his blood gas and see how it looks. His is so close to CPAP, which is a good thing but scary, cause I know "he" is going to hate it. Or maybe it won't bother him, who knows. I just know some babies hate it because it's annoying and big and on there face unlike the tube just in there mouth. As for the infection, well I talked to Dr Pye today and he said that he put Aiden on the two anitbiotics to be safe. That the WBC (white blood count) was off, which indicates that there is usually an infection, so he is treating it as so. They can't rule it out until things come back as "better" or until the cultures come back. So in the mean time we are better safe then sorry.
As for his feedings, well since he wasn't digesting the last cc given to him, they stopped them and are going to treat the "infection" then do a contrast study and go from there. However the baby gram done today did show air all the way down to the bowel. THIS IS A GREAT THING. If he can now finally pass this air (in other words fart up a storm) we will be in a happy happy place. And my little peanut, right after I put the clean diaper under his bum, decided to poop. Yes, I am still excited when this happens (because of all the problems he has had and the issue with eating and his gut, for him to poop is a very great thing) so smiling I was, and so was dad!
Tomorrow is the meeting with the surgons, my main question being, what is the plan of action. What is it that they intend to do if he can't eat and downs't get rid of the gas trapped in there. How long do we wait? It's funny how you have 1000 questions then when the time comes, your mind becomes blank. This is why I told Chuck to make a list. Haa Haa..
Peanut also kicked out his IV in his foot today. he decided he didn't want it and kicked it until he got it loose and then pop, and out it came just enough that they had to remove it. He still had one in his arm so they didn't have to replace the one he kicked out. However the one in his arm, although it was new from this morning, didn't look good to me. at the crease of his elbow area it was bruised and the vain looked purple. The nurse on this morning checked it and siad it looked ok to her, but the night nurse didn't like it and agreed with me it didn't look good so she took it out. Which meant Aiden had to get a new one. UGH, I hate that, but I stayed with him and kept him calm and she looked and looked and found a spot in his hand. I gave him some sucrose (that helps calm them) and she popped it in. The first try and he didn't even cry. i think it was the extra sugar water (sucrose) I gave him, and just as she did it I gave him a little more. He was calm and happy, so that made me happy. No cries makes a mommy's day.

Best part of the day is I tickled him today near his ear and he laughed. Then I did it again later and didn the mommy loves you silly voice and he smiled and giggled again.. it was so awesome to see such a happy bug..

Monday, July 24, 2006

July 24, 2006


What a big day today was... Chuck called this morning to get a noon time update and word was they decided to do feed him. HUH?? Feed him?? What happened to the contrast study??
Well when I got to the NICU to see him, the story was, that surgery, after looking at him last night, thought it was a good idea to start small feeds. So at noon Aiden got his first cc of what looks like greyish watery milk stuff. It's not breast milk or regular formula. It's a formula they give babies who have belly problems to start there belly's movin. To get them ready for breast milk. They also use it to add calories to breast milk. So what they do is give him 1cc every 4 hrs. Before they give the next dose they suction back to see if he has digested it or if it is still sitting in the tummy. Round one was a noon, round two at 4 and round three and 8. All went great.. Nothing came back at all. Then at midnight was round four. When his nurse suctioned, a small amount came back, BUT he said that that was fine. That it wasn't a problem unless you see most of the cc come back or if it's green in color, and it was neither. It was about 1/10th or a cc. So the next dose went in and it's another 4 hr wait.
Aiden also had his eye exam today and it came back as premature, which is what you want to hear. You dont want to hear ROP, so that was another good thing for the day.
He is still puffy and it seems to be moving around some. His feet and legs are showing it and under his neck. He looks like he has a little double chin. His weight is now 1210 grams almost double his birth weight, but some of that is still the swolleness and fluid he is retaining.
So now it's another waiting game. Wait to see how these tiny feeds go, and wait and see if it passes through and he poops. All fingers are crossed!!
On another good note, Dr P was very pleased with his oxygen being at room air (21%) and so were the respitory nurses. They weened his settings twice today, he is now 20 over 6 with a rate of 32.. You go Aiden!! THe talk is now to switch him to CPAP if he keeps doing what he is doing. They don't want to switch him this week because he just started feeds and they don't want to overwhelm him. Also while on CPAP, babies tend to swallow more air at times and since he already has a ton of gas in his gut they don't want to add to that since the feeds just started. They need to take there time and do one thing at a time, which I agreed with.
I know CPAP is a great step, but I also know he is probably going to hate that thing on his face and so if they wait a bit longer I think that is good. I think it would be too much to have him finally off the meds, now attempting feeds and then on CPAP all in the same week.

I sit here and I'm still amazed. He has come so far. It is crazy how things can change from week to week, or in some cases day to day and hour by hour. On the flip side, since I have seen the changes happen, for the good and at times for the bad, it is also very scary.
All I know is I look at him and to me he is the strongest person in the world. He has been with us for 6 weeks and has gone through more in that time then some people go through in there entire life. I am so proud of him!! I truly believe that he has an angel looking out for him. That angel being his brother Chase. My two angels, one here to keep me grounded and one to watch over us. I send my love to you both.. Hugs and Kisses my little boys..

Sunday, July 23, 2006

July 23, 2006

It is now 4:40AM and I have yet to sleep... For what ever reason I don't think my body will let me sleep unless I am running on E and dead tired cause I have been up til the wee hours for many nights in a row, OR it waits til I call and check on Aiden and then decides it's tired.. So I have called and hopefully the tiredness will kick in.
First off... HAPPY 6 WEEKS AIDEN!!!

The update I got tonight or shall I say this morning was good.. He is still at room air, and has not alarmed all night. (I am still in awe, but very happy) So they decided to lower his vent rates. They now have him at 22 over 6 with a rate of 32.. (Our goal is 17 to 19 over 6 and back to a rate of 30 or less, preferably 25) then he will definetly go to CPAP if he can tolerate that. BUT one day at a time, I know..
Since they lowered him, they just drew a gas to see how that is, and (fingers crossed) if it is good they may lower it again, or wait til his next gas (at 4AM tomorrow).. Slowly we are getting there.. YAY for Aiden.. It's about time some of his hard work pays off. He deserves a little rest.
And speaking of rest, I am off to get a drink and then to bed.. I'll update more later.

I went in to see Aiden and he had another day at "room air" and is doing well on his vent settings. He also doesn't look as puffy to me in some spots although he is up another 10 grams so he now weighs in at 1170 grams which is about 2 pounds 10 ounces... What amount is actual fluid weight I don't know. Probably about few ounces at the very least.
As for tomorrow, the plan is, they are going to do a GI contrast study. That way they can see how the "flow" of things is before they feed him. So the big feeding day may be Tuesday, which I am happier about, because Tuesday his primary nurse Micky will be on. Since she is very protective of my lovebug, I know she will voice her opinion if she doesn't think things are going well and that it's too soon. Which ever the case, I am glad a primary will be with him and not a nurse that doesn't know him well. Soooo since the study is tomorrow, I talked to the nurses today to see if Chuck could kangaroo for the first time. His day was going to be tomorrow, but I figured if Aiden isn't feelign well because he had a rough day due to the test, then it would be nice for both of them if they got to kangaroo. Well since my peanut had a good day today and tonight, Chuck got to kangaroo with him at midnight for an hour. You should have seen them, it was so cute. It's hard sharing, haa haa haa, but I was so happy for both of them.

Well all, please pray everything goes ok tomorrow for Aiden when he has the study done. Best case senerio would be for them to come back and say the air pushed it's way through and it looks fine. Aiden can eat and grow and finally get on the road to being home... And I can't wait for that day... Happy 6 weeks little man! I LOVE YOU sooooooooooooooooooooo much!!

Saturday, July 22, 2006

July 22, 2006


Well I forced myself to stay home today and do what I needed to do around here. This house was starting to look like a nation disater area. So with the cleaning out of the way, well most of it, we went to go see Aiden tonight. He had a great day, slept well, and seemed happy and comfortable all day. He should be off the fentanyl tomorrow, he was down to 1 mcg tonight.. WOO HOOO
His belly is still super distended and he is still swollen with fluid, but some of the swelling has gone down, since he pee'd alot last night. They can hear bowel sounds on the left side of his belly (which for the most part that is the side that hasn't been a problem) and they actually heard sounds on the right tonight. Not a lot, but I will take it. Some is better then none. The talk this week end was that they wanted to feed him on Monday, but I read the nots tonight from surgery, who suggested NOT to feed him until they do a contrast study.. Sometimes I don't think the left hand knows what the right hand is doing, but it seems to be coming together now. One of our concerns to is that Monday none of his primary nurses are on, and I truly don't want them to attempt feeding him if he doesn't have a nurse that doesn't know him. I've had some issues with nurses who didn't know him and kinda took it for granted that he is like every other baby. However, just because they may have had 1000 babies like him, he is a first for me, so I'd rather it be done by the book. If you know what I mean.
Another update is his finger tip finally fell off. The morning nurse saw a little black thing on his cheek and thought it was a boogah. Haa Haa and picked it off and tossed it away. Then when she was examing him, realized it was the finger tip. Now his hand looks for the most part normal. That one finger (to me) looks a little but shorter, but it still has a nail, so mabe the nail will grow out and it will look like the rest.. Either way, it's the least of my worries. I remember when it first happened and they thought he might loose the finger or at least half of it and after all this time, it was just the tip, from about mid nail up.. Not so bad at all... As for his thumb, that went back to normal, no loss on that one.. Yay!!!!
And a really really good thing, is the last few days he has been very close to being at 21% O2 (which is room air or the amount of o2 in room air I should say) and last night, all of today and all of tonight he has been at 21, even 20%.. and not beeping low, he's even beeped high.. THis is a very good thing. They adjusted his vent settings again to less pressure, and if his blood gasses keep coming back good they they can ween his setting and eventually he may even be able to go to CPAP (the scuba steve mask).. Another scary but exciting time... I asked his nurse Liz tonight if they are happy that he has been at 21% and she said they are VERY happy and VERY VERY AMAZED!!! That's our "superman" he keeps them guessing... You go Aiden, you show them how it's done...

July 21, 2006

Aiden had a good day other then being so swollen with fluid. This scares me but I know there is nothing I can do. I just hate seeing him this way and feeling like it has to be uncomfortable for him and he just can't tell us what's wrong. He had a head ultrasound today and it looks fine. The area's they are watching seem to be clearing up in time, as we hoped they would. No new xrays to talk about and the plan, from what I heard tonight, is to feed him on Monday. So yes I will be stressing out on Monday with worry of what is going to happen next.. Surgery has scheduled a meeting with us, as I requested for Wednesday, which kinda throws me for a loop since I wanted this meeting before they attempted to feed him. But we will see how things go on Monday.
He is up on his weight again, but retaining so much fluid in his tissue that he looks like a completely diffrent baby to me. He now weighs 1160 grams, so he is up another 40.. He did have a great pee episode tonight, but so far hasn't dropped any of the swolleness.

On a great note, we got to kangaroo again, and he did wonderful. He got a bit fussy and cried when he got the hiccups but burrowed in and was fine after that. He layed there and tried with all his might to suck his fingers and fell asleep. I got to hold him for an hour and a half this time, which was awesome. I could of sat there for hours and hours. Boy i miss him already.
I was there tonight til 2am and could have stayed all night. Time flies when your with him. It's great. Can't believe he is almost 6 weeks old already. He's come so far.
Chuck was reading his medical record book last night and was amazed at some of the things they commented on. Just the fact of how they would have honered our wishes at that time if we decided on "comfort care" rather then to keep going with "heroic care" as they called it.
Even tonight Dr L, who was covering the wee end shift tonight (and was his attending the first 3 weeks of his life) said "he looks good" (puffiness aside) and has gotten big (no pun intended) She is amazed at what he has been through andthat he has gotten this far. I welcome the day I can take him home and then bring him back to visit and say look how far he has come now. Our little "superman"!!! I never thought you could love someone so much, and then love them even more then thata few seconds later.. He is my heart.. I couldn not, and refuse to, picture my world with out him!
Stay strong Aiden, keep growing, and sleep well. I love you bug!!!

Thursday, July 20, 2006

July 20, 2006


Yesterday (wednesday)was another long visiting day at the hospital. It has seem to become the normal for me. I know I am going back to work soon and I only have these last two weeks to be with Aiden as much as I can. It's killing me knowing I won't be able to see him all day until after 5 when I get out of work, but I'm not going to think about that now (or at least for the next few minutes)
Well after they gave peanut the lasix he pee'd up a storm and dropped some of the weight he was hanging on too. He went from 1010 grams to 950 grams. This is good considering it was fluid gain.
And he pooped again, just a bit but on his own with out a suppository. They decided to then give him one a few hours later and he pushed that sucker right back out. When I changed him it was sitting on his bum cheek like it was never put any place else (you get the point) so that was just about pointless since it did nothing. He has continued to pass some mucas stuff but that's about it. He is still very distended in the belly area and has a lot, I mean a lot of gas in his intestines. The poor little thing. They think he might have a blockage from the NEC issue previously and that is why the gas is not passing all the way through. So no feeds yet and we are still waiting, howlong I don't know.. It's just really fustrating..

Today (thursday) we had a "family meeting" with Dr P, he went over Aiden's progress and told us what surgery said about his belly, which is they are waiting to see if the intestines will pass what ever is blocking because they really don't want to do a contrast study, they are affraid of damaging him more. Umm ok, now what we asked.. How long do we wait? What if he doesn't pass the blockage? I requested a meeting with the surgons, which Dr P is suppose to set up. I want to pick there brain and want to know how long they are going to wait. Don't get me wrong I am not saying we should feed Aiden just to feed him, there is obviously a problem. BUT how long do we wait before they do something to "fix" the problem. Before we were told he needed surgery and that we had to wait til he was stable enough. Now he is stable and we have to wait just to wait.
I don't want him to have to have surgery, I dread the thought of it, but Aiden is now 5 weeks and 4 days old and has not eaten. On top of that in the last 24 hrs he isn't peeing much, and retaining fluid. His electrolytes are fine, his blood gas and red and white cells all fine. For the first time his lungs sound really good today and all of a sudden he is puffy and swollen and get this.. Weighed in at a whopping 1120 grams, that is 2 pounds 8 ounces.. He jumped from 990 to 1120 inless the 24 hours.. That's A LOT for a peanut.. I'm worried!! Also his billi is building up in his blood and bot the billirubin that they can do photo therpy for, this kind they can't treat, it fixes itself once a baby starts to eat and the intestines kicks in. Right now the levels are not at a point where they are panicing but if they keep waiting I don't know what's going to happen.
After the meeting today chuck went to work and I stayed at the hospital until he got out of work and picked me up. Another 10 hr visit and I already want to rush back. We left the hospital a little after midnight and I just cried on the way home. I miss Aiden so much and just want to be able to hold him and be a mom to him. I want him to be ok and it is scaring the crap out of me that he's not. He's come so far and over come so much. I just wish he'd get a break.
I took some pictures today of him all wraped up like a pea in a pod. i didn't do the best job wrapping him but he was comfy so I didn't want to fuss over him to much. These were before he got even puffier.
So once again I am asking.. Please all pray all you can, please make someone hear us. Pray for my peanut, that he gets better and is ok..

Tuesday, July 18, 2006

July 18, 2006


Today started off as a tired morning. I could not get out of bed for nothing. Until I said to myself, "the sooner you get up the sooner you can see peanut" so up I got! LOL
Then it went down hill, UGH!!! I wanted to be in no later then 2, and for other reasons I won't vent about I didn't get in til 4. The nurse on this morning was ummm not to my liking so to speak. She didn't answer questions, kinda went around them, and talked to me like I was two. I hate that so much. Then I was annoyed because she only took Aiden's BP once her entire shift and that was at 8am. HELLO.. the order is every 4 hrs, how hard is that to follow. It's obvious she hasn't had him before, and hopefully doesn't again. Then his night nurse was nice but I think the little babies make her more nervous. However she gave me a heart attack when she unhooked his breathing tube to weigh him (twice) then again later that night to move something around.. AHhhhhh.. Sometimes I wonder what goes on when your not looking. Something I don't want to think about it. Don't get me wrong, I know Aiden is at one of the best hospitals in the world for preemies, but as in every place there are some that just scare you. Tonight I was scared, and annoyed to a degree with a few things.
Aiden's belly is also now 23cm and it's obvious he has a blockage in his intestines, so talks are to do a test where they put a barrium or somthing like it in and see how far it travels. They might actually do it tomorrow. I really nervouse about this, it's on the same page as feeding him. I'm scared. I just want him to be ok, for the problem to be very minor and an easy fix. Please all pray pray pray.. Pray for Aiden and Beau and let them make it past all these damn hurdles.

BUT the HIGHLIGHT of the night... It made my entire day so much better.. We got to Kangaroo.. OMG what a feeling. They place the baby skin to skin and he just slept like he was on a cloud. His vital signs were great and it was the best thing ever since all this has happened. I look forward to many more nights of holding my peanut.
I only got about an hour, and man did it fly, but it was the best hour of the day. Gradually we will get longer periods of time.. Woo Hoo, and with the test maybe tomorrow, I am glad I got to hold my boogah first, just to give him that little extra love, so he knows his mommy and daddy are there. And I wanted to say thank you to Andrea (Beau's mom) for taking the pics for me. (today was the one day i didn't have the cam) So thank you Drea...

they also gave Aiden lasik today to get rid of some of that fluid... i knew him weighing in at 1010 grams was a lot now he is back down to 950 (about 2 lbs).. but still looks filled out (not puffy)

Monday, July 17, 2006

July 17, 2006

Aiden had a peaceful night and a peaceful day today. I went to see him and got there about 2:30 and didn't get him til past 1am.. so we had about a solid 10 hr visit. It was great, time flies when your happy. And I can say that i am happy. I still worry abot his BP, but not seeing the number on the screen is strange. Sometimes I don't know if I should worry cause we can't see it, or not to worry cause we can't see it. They now take it by a cuff every 4 hrs but from experience, I tend not to trust the baby cuff. Either way, things seem to be going well right now. We are still very concerned about his gut still but we truley won't know more til they attempt to feed him. That may be by the end of this week. They started weening his pain meds and want him close to off of them by feeding time if possible. Then the ride begins. We also have a family meeting with Dr P on thursday at 2pm so we can touch base and see how things are progressing. Then come Aug 1st a new attending is on. That makes it difficult when people are changing all the time. They are there a month then gone. It's stressful sometimes.
Aiden now weighs in at a whopping 2 pounds 4 ounces as of tonight, however due to the gas in his belly (and there is a lot of it) and fluid I'm sure he is retaining right now, he's probably only about 2 pounds in actual weight, but boy is he filling out. He looks so much bigger to me and so cute.. I know he's my son but he really is cute..
So all I can soy for now is it was a good day and tomorrow is a new one. Every day is one day closer to coming home. So make sure every one prays for my little peanut and his little friend Beau. Can't wait for them to get big and play together. (Andrea we are in trouble)
Sleep well peanut, and grow strong, Mommy loves you! xo

Sunday, July 16, 2006

July 16, 2006


Happy 5 Weeks Aiden!!!!
The 4am call... It seems we are going to get him off the dopamine within the next 24 hrs. He is doing good, sleeping and comfy cozy, just the way a baby should be. His BP's have been pretty ok for being weened and we will just have to "wait" and see. They did take out the ART line at 4 too, since the dose of dopamine was low and after they drew bloods tonight the ART line had just about had enough (it was in a tepermental spot to begin with) so now it's gone. Wow he now has two feet and one hand free, what is a boy to do.
I just called, it's 2pm, and CC said he came off the dopamine (I believe within the past two hours) they changed his isolette, which they do every two weeks or so, and his day was been good so far. His blood gas was good and so was his crit so they will not draw bloods until tuesday unless he starts to "act up". However they just did an xray to look at his belly because it is more destended then it was, 21cm vs 20cm. They believe it is air since he isn't eating but need to take a look since they are not pulling much air from his belly. Let's hope that, that is all it is, damn air, and will go away cause we know how we feel when we have gas... UGH!!!!
Other then that there is not much to tell. I am going to head in to see him soon, and will update more later.. positive energy... Keep sending all that positive energy prayers and hope..

Well I went out and got my peanut some little socks now that he has somewhat free feet.. And a preemie snap on tshirt and bottoms.. They are still big for him and he can't wear the outfit just yet i don't think cause of his belly but soon he will if we can get all this stuff fixed.
He is off the BP meds still (I just got home from seeing him) and his last gas came back good. His heart rate and O2 is in the ball park we want it in so this is another good thing. They have him on 25 to 30% O2 on the vent and he's been doing good (21% is room air)
So we are back on the climb up.. Wooo Hoooo..
His belly however is now 22cm but the xray did show gas in there. The doctors don't seem too worried about it though. I even looked at the xray myself, as I try to when ever they put one up, and you can see the loops of his intestines again. When we talked to the doc yesterday she said if he has dead bowel in there and it has to be removed, as long as he has at least 50 cm of good bowel then he should be fine. i again asked the question I asked before about the platelets and electrolytes and she still agreed that IF he has dead bowel she would assume it isn't a lot because dead tissue will suck up platelets and throw off your electrolytes and his for the most part have been fine. Nothing looks alarming to them on that point. This keeps me hopeful and I need that. Aiden needs to grow and he can't grow if he can't eat so we need his gut to be ok.
Fingers & toes crossed (as usual)

Saturday, July 15, 2006

July 15, 2006



So far all the calls to the NICU today have gone well. Aiden is holding his owe and the talk is to still ween him off the dopamine. This will be a great thing so I am again, as usual, keeping my fingers crossed.

We went in for the AM visit and had a "family meeting" with the docs. It was to go over a few things, change a few orders we had put into place, and make sure we are all on the same page again. They are still surprised Aidens lungs are doing so well. There still terrible compaired to a "healthy full term babies lungs" but much better then they were before and that is a good thing. He seems tobe tolerating the new vent better then he ever did and they have started to ween the dopamine down. During our night visit, his nurse got him even lower, and is determined to get him off it. We came to the conclusion too that his receptors in his body are basiclly so use to the dopamine that they are not responding to it anymore, that is why he needed such a high dose, but the ween should be easy now because the amount he is actually getting at this point, his body may not be listening too. If this is the case (and it looked to be tonight anyway) then he may be off it by tomorrow. They also mentioned that as long as his BP looks ok from his ART line and corilates with the cuff pressure when taken, that they will then take out the ART line and just go by the cuff, which will be taken every hour. So that is one less IV in him. He will then have 3 limbs free at once.. I don't think he will know what to do with himself.
On another positive note, he seemed very happy tonight. He knew my voice right away and woke up and looked at me. he seems to have more eye control to and follows me (and bright colors) I believe next week he will get an eye exam. Somewhere around 6 weeks of age. Our hopes are they will just come back and say they are premature. That is what you want to hear.
The docs also talked about his gut some more. When they day comes they can feed him (as long as he gets off the dopamine and stays off) they actually said no one really wants to be the one to do it, they are scared. No one wants to be the one to say ok then have something go wrong, like a blockage, or him to get sick (infection) if there is still a hole. it's going to be a big and super scary day. As for myself I am staying super positive, lately he seems like a happy baby, well considering all he is going through, and that helps me so much. It's still really hard and there are days I have to fight the tears and be strong. Some days ( like today) I cray and don't even know why I am crying. Well I know why, cause I miss him, and want to hold him, and want to be a "mom" to him and I get really over whelmed. Some days I get really sad or crabby, then I see Aiden (like tonight) and feel so much better. I'm doing the best I can, and that's all I can really do. It's just really hard to pull myself away from the NICU and try to live life and do other things besides be at the hospital. I feel guilty and miss him so much when I am not there. As for Chuck, he is hanging in there too. Some times I think so much better then me. I don't know, I think men just process things like this differently and react different too. He doesn't "need" to be there every minute like me (and on my crabby days although I never say anything to him, I have a hard time understanding that), but I know he loves Aiden just as much as I do, and he misses him all the time too. Maybe he is just stronger? What ever the case may be, all I can say is that we deffinetly handle and deal with it two really different ways, but we are hanging in there and doing ok for the most part, so far.
PS the pic of Aiden with the pooh bear thatI posted was taken the other day. The pooh is only 6 inches although he looks huge and makes Aiden look so much bigger

Thursday, July 13, 2006

July 14, 2006


It's now 2:30 am and it is taking every ounce I have in me to "sit and wait" and not drive back to the hospital. I just called to check on Aiden and they have moved him up to the max amount of dopamine he can get and they are giving him a blood transfusion to see if that helps. I'm lost right now, why isn't this working. He finally got them damn drains out, he's on the new vent and it's working great, his lungs look a better and his blood gases have been spot on. They have been amazed at how good he is doing on the new vent too. Now this,, now his BP has to act up and be the worst it has ever been,, UGHHHHHHHHHHH!!!.. I'm panicing now and need to calm down. They have to fix this. Please god let this problem heal, let Aiden be ok. Please, I'm begging here.
I'm going to check on him again at 4.. I'm praying with all my might that something kicks in and starts working..
4am update, I finally feel asleep, I think by about this time I had no choice, my body was going to sleep if I wanted to or not, which is fine with me. Chuck woke me to let me know that Aiden was hanging in there. It took a while but the blood tranfusion was helping a little and his BP was hangin in at about a means of 30. (Still not what we want considering all the dopamine they are pumping in) But I will take it and hope it pops up and they can lower the meds)
9am update, I just called to check on him again. Liz got to lower the dopamine again before she left her shift at 7am he is now at 1.5 They just got him all situated and took a babygram, and his lungs looked good. They had to retape his tube because it needed to be adjusted but this is a normal thing at least he didn't pull it out or anything like that. Surgery came by again and talked to the attending. They have decided to D/C his antibiotics and see what happens. Now we just need to get him off the dopamine and stabilized so he can get fed. They said today once they get him off it they are going to attempt to feed him. An exciting and a scary moment. I want him to be able to eat but I am so scared that "what if something happens?" I sure don't want him to have to go through more trama. He's had enough already!

I went in this afternoon about 12:30 and had a short visit, Aiden was doing better. Yippeee!
Then I actually went out and had some mommy time (me and beau's mom caught a movie)
I went back to the hospital after that, and stayed until 12:30 tonight, so we had a long visit today (7.5 hrs) He was doing ok though. His belly looks good, his O2 levels are good, and his on lower dopamine for his blood pressure. He is however still higher then he was 48 hrs ago, but hopefully somthing will pan out and he will get off it soon.
It was a good day with Aiden today and now I am exhausted. Tomorrow is another day, and 1 day closer to getting better, so until tomorrow.

July 13, 2006


It's 4:25am and I just called in to check on my peanut. He's doing good. They still haven't been able to ween him lower or off the dopamine (BP meds). but they haven't had to increase the amount higher. They also changed his vent again to another version of the conventional vent because his blood gases where so good. All I can say is lets keep up this hill Aiden. Tomorrow is another day and every day is one step closer to getting better. Sleep well peanut and know mommy loves you.

I called at 12:30 and Aiden's nurse said other then his blood pressure he was doing well. That they had to up his BP meds a bit. She also said surgery came by and took another look and took out the stitch holding in the drains so they can work there way out. Well what a day for peanut, finally they are coming out and we can move on and hope for some better days. If only we can get this BP problem resolved. I'm headed in to see him about 4 so I'll update then.

Well I got in to see Aiden at about 4:30 and stayed all day til 11:30 pm.. His blood pressure is out of wack. i don't know what it going on tonight but something has got to work for him. The drains are out completely. Surgery came by again tonight while I was there and said the color of his belly looks the best he has ever seen it. That's good news! They took the leads off his head from the seizure monitor and hopefully we will have the results of that soon too, but none of the nurses he has had noticed any kind of seizure activity so we are hopeful.
Major problem tonight is his damn BP. He was at .7 for the dose when the day started and worked his way up to .8 when i got there at 4:30, then worked up to .9 by 7pm and by 11 was at 1.6.. He can only go as high as 1.8 and I don't know what happens from there. I'm getting really nervous. I also talked to the surgon about the course of action they will take concerning Aiden's belly. Will they attempt to feed him, or do a barrium run or right to surgery?? He said they will most likely do a feed attempt but not until he is off the BP meds and is stable. Somthing else to work toward. Poor little man has so much to work on. I just pray that his BP stabilizes tonight and they can ween him down on the dopa.. He's come so far and fought so hard, just give the little man a break already. Right now I am waiting for Chuck to get home, since I was there all night and he didn't get there until he got out of work, he stayed a while longer. I am hoping when he gets home which should be soon he will tell me that Aiden went down on the med. If I don't hear from him soon I am going to call and if Aiden's BP doesn't get better then I am going to go back in and sit there for awhile longer. I know I can't do anything but I can be there for him and maybe that will help. I'll try anything..
So keep them prayers coming everyone. We are using them up as they come in. Please pray for Aiden and his little friend Beau. They are going to grow big and strong so they can bother you all and drive you nuts later.. (I look forward to them days)

I just talked to Chuck he is on his way home, Aiden's BP is not good still. they are now at 1.7 and also are giving him a blood transfusion to see if that helps.. i don't understand it. Why is he not responding to the domamine.. What's going on?? What's wrong???
Well we are going to give it a few hours and call in to check on him and see if the blood helps. If it's still low I think I am headed back in, I know I am not going to be able to sleep now. I'm too worried.. I just want him to be ok.

July 12, 2006

I woke up today and was so emotional. All I could think about last night was our night visit and what "she" said. I really wanted to kick her. I dropped Chuck off at work and went in for Aiden's 4pm changing. I stayed from 4 til 9:45 then came back with Chuck at 10:30 and stayed til 11:45.
I also talked to Micky today and she made me feel a little better. Like she says, no one knows the out come of what is going to happen all we can do is take it day by day and hope for the best. In the mean time i cherish every second I have with my baby boy. i plan on having him for a very very very long time.
The newest news is they have hooked all kinds of leads up to a monitor and are checking to see if Aiden is having micro seizures. The poor thing has enough going on, that's all we need. Please god don't let anything else happen, just let him get better from all this and be a strong healthy little boy. He also did his "trick" again today and pulled his tube out while the lady from nerology was putting all the leads on. So once again Aiden got a new breathing tube. I know enough already. He hasn't learned he can't breath well enough on his own yet.

July 11, 2006

Happy 1 Month Aiden!!!

They lowered the settings on his vent again and are talking again about putting him on the conventional vent. his lungs have showed improvment and look a little better. he lost the IV in his foot but luckly they got another one in his hand. My poor little guy, he's always being poked so much he is running out places to put the IV's. He needs time to heal, which takes about a week to 10 days, maybe longer for him and since the IV's only last 2 to 4 days it's tough.
His blood gas has been really good the past few days too. (happy happy)

It's our night visit and they asked us to wait a few minutes before coming in. They have to retape Aiden's tube. This then turned into them again retubing him. He pulled out his tube again. Well not pulled it out, but build up so much spit in his mouth that he wiggles it all the way up so far it was in his mouth.

At least Andrea came out to keep us company and make the time go by so we don't worry. It usually doesn't take this long. I gave her the gift we bought for her, Neill and Beau. Now both Beau and Aiden having matching pooh bears :)
I also got Aiden some blankies for his isolette. I have to wash them so I can bring them in tomorrow. I thought it would be nice for him to have his own stuff that smells like mommy and daddy.

We finally get to go in and they are still fussing over him. The first thing I notice is that they have put him back on the conventional vent and taken him off the jet. I am happy and nervous, hoping they didn't jump the gun. Now that they have stopped fussing over him he seems comfy and fine. He just went through a retubing and getting a new repogle (which even causes me to gag) so I am sure he just wants to have some peace.
Our visit was going well then "that same intern" the one I talked about before, comes over to talk about them putting him on the new vent. That conversation went fine until it led some how into his gut. Lets just say that she was so negitive about Aiden's out come that when she walked away I snapped at Chuck for even talking to her and then ended up going home. i was so upset I cried. I got home and was so angry and crushed. She took all the hope I had and stomped it into the ground. It was like she is trying to say in he own way, we are keeping him alive so you have some time with him, but in the end he's not going to make it. Well that is not an option for me. My son has fought through so much. I will not accept that his belly is going to take him away from me. We will get it fixed and stabilize his BP and get him well..

July 10, 2006

Although everything was great last night while we where there, later on his BP starting acting up. it waslingering in the 20's and when I called this morning at 5am the nurse said she was checking with the doc to see what he wanted to do. Other then that everything else was fine. I told her to please call me if there are any issues.

No calls and that is a good thing. I called Liz to check on him at noon and as I am talking to her she says Jess call me back Aiden just pulled out his tube...
He's learned a new trick (from his little buddy Beau) He actually got up the energy to turn his head all the way around to the other side and pull the breathing tube out. When Liz looked at him it was sitting on his cheek.
Liz called me back about 30 mins later (as I was about to call her) and all was ok. They got a new tube and Dr P put it back in. So no pulling out your tube ya monkey.. Geeesh
Another change is he is back on the dopamine (AGAIN) They started him at 7am and are once again hoping to ween him off. They are also going to try breaking his hydro up in 3 doses rather then 2. Maybe that will help out too. On a good note his last gas was really good and they lowered his setting on the jet again. his baby gram showed some improvment of the cycstic part of his lung. Good Good Good.. It also showed a lot of air still in his intestines, now more over to the left then the right. I'm not sure what this means. Ijust stay as positive as I can.
Aiden looked very comfy today though and when he was awake he was alert and would stare at me. :) As I had that thought Mr "I look so peaceful" just decided to try and turn his head and pull his tube out again. Not once but twice! The out come was trying to reposition him and then a bolus of fent to make him more relaxed.
I hate the thought of medicating a baby to keep him "relaxed". In your head you know babies are suppose to wiggle and giggle, but I know for now he has to be still as possible so it's for the best. The more he relaxes, the better the jet works and the more recoop time his lungs get. Also the rest of his body. They say your bodyheals best when your sleeping. Sleep well peanut..

July 9, 2006

Happy 4 weeks Aiden!!

I can't believe it's been 4 weeks already. The time has gone by so fast, but so much has gone on with him. The ups and downs, the worry, the waiting. It's no wonder the last 28 days all blend together. I remember the day I had him like it just happened an hour ago, but I remember the birth of Chase like that just happened too.

I came to visit today at 4 until about 7 then me and chuck came at 10:30. Today Aiden seemed active so they gave him some fent to relax him. They don't want him moving much while he is on the jet vent so they keep them medicated to a point, but he still had energy today. He also got his stitch removed from the PDA surgery. They also came to look at his drains again, it's like a daily thing now, and since one decided to drain a lot today so they are staying in and he will continue on the antibiotics. His bely today is still "bigger" but looksgood in color compaired to when he first got NEC.
As for tonights visit.. Since we got here his O2 levels have been fantastic. His BP has also been stable. His nurse tonight was amazed and said it was like the second we walked in that he knew and just decided to show off. Funny it's a full moon tonight. Youknow what they say about full moons. i can't believe he is on point and the % on his vent is at 29 (21% is room air) and he is still beeping high on the monitor.. Go AIDEN!!! Keep it up Mr Man.

Wednesday, July 12, 2006

July 8, 2006


Aiden POOPED!!! woo hoo..
Now I am not a parent to get oh so excited about there kid having a BM but considering the things that have happened and what is going on with his gut, him poopin is a really good thing.
Yesterday they did a baby gram and Dr P said it looked like there was a lot of air in his intestines, that it traveled through but stopped at the bottom so they decided to give Aiden a supository. Well when I changed him a few hours later we had a surprise.
I can't help but think that this is a good thing. For the baby gram to show air in there and for him to poop after the supository this showed that atleast some of the blockage wasn't dead tissue. This all gives me hope. Maybe the holes healed over, maybe he will start pooing more, maybe the air will pass all the way through and then maybe he won't have to go to surgery. Oh my fingers are crossed I am hoping and praying. Please Please Please...
My hope is that everyones prayers and thoughts, and most of all Aiden's strength to fight, will get us to that happy place.
We just talked to Dr P, he said the ultrasound of Aiden's head showed the bleeding in the back of his head has resolved, however he now has a cycst there. They don't know if it is in the tissue or just out side but they will watch it and twice a week measure his head to make sure it is growing at the normal rate.

July 6, 2006

Aiden is back on the dopamine. I came back in last night and stayed past 2am. His blood pressure was drifting in the high 20's and by looking at the notes they put him back on the dopa at 2:45, not long after I left. He's been on it all day so far and the plan is to ween him off it again. Other then that the only thing I've noticed is his belly looks bigger to me, but once again when they measured it, it was the same as last time. So momma bear is keeping an eye on it. Something else to watch.

July 5, 2006

I'm not having a good day today. I am having this over whelming feeling of worry. I'm sure the over whelming feeling of missing Aiden when we got home last night and when I went to bed didn't help either. I can't help it though. The last few nights I've come home I've secretly sat and cried cause I miss him so so much. I want so badly to take him home and for him to just be ok.
Then the intern resident talking to us today, or to Chuck I should say because to me it was more like the teacher on the peanuts talking (blah blah blah) words came out and her lips are moving but it was all a blur to me after a certain point. She talked about surgery and not wanting to remove the drains yet and his gut having air and the drains still draining. Then about not being able to feed him and the lack of nutrition. Oh and don't forget the blood pressure.
She just crushed our hopes, it was a jumble of bad out comes and things that can happen (or in her eyes will happen) all to say Aiden is sick, he can't eat, we have no idea when we will be able to feed him and he really needs to eat, and oh by the way his blood pressure sucks too. I don't think I have ever talked to a person so negitive. I don't think she took the course in "What not to say to a parent of a NICU baby"

July 4, 2006

Happy 4th of July Mr. Man!!
I talked to CC this afternoon and she said he was doing good today. The doc decided not to taper his hydro and other then that all is the same. I did ask her about his belly and she said it was now 18 cm. (See i knew it was different) so they are going to watch it.
We didn't get to visit this morning, and that bothered me because I have always gone twice a day, but with the holiday traffic and some roads closed i knew it was going to be a rough day getting there. We got in about 7pm and the update was his day was good but his BP was a bit low. He was getting blood and the hydro so that should help. however his belly was now measuring 19 cm. UGH.. .This worried me until she said the baby gram showed he has air in his intestines. I am hoping this is a good sign and will travel through and show no dead spots. Since the air doesn't seem to be escaping into the abdomen this may be a possiblility. So maybe the holes healed over. I can hope right? Fingers crossed.
The flew by they idea of putting him back on the conventional vent again, but this time it was strange. It was for the sole benifit of us being able to hold Aiden. Now granted I want to hold him in the worst way, but not at the risk of his health and if we put him back on the conventional vent we are risking blowing a hole in his lungs. So the obvious decision from us was to keep him on the jet until his lungs show improvment. I am still stunned that they would even run that idea by us. Who in the world would risk there childs life just to hold them?

July 3, 2006


I called today at 12:30 and CC said he had a great night and is haveing a great morning. That he was one of the best kids in the room last night. That made Momma smile :) She also said surgery stopped by to check his drains and was pleased the size of his belly looked better and so did the color. They didn't say much else but that's no surprise. Plastics also came by to look at his finger which lookes better too.
We had a meeting with Dr P today too. He is taking over this month as Attending. The meeting was more so to introduce ourselves and to make sure we are on the same page with each other. I stayed today for about 6 hrs then came back abot 10:30pm and stayed til 12:30.
Aiden's belly seemed a little puffy to me and I had the nurse measure it and it still measured 17cm she said, but I see a change. I know my son and I know when something looks different.
Chuck will call later to check on him. I hope his belly is ok and not getting worse.

July 2, 2006

Happy 3 weeks Aiden!!!

Our visit yesturday turned into a long one. Aiden's BP dipped really low and wasn't coming back up. It went as low as a means of 11. (A perfect means is 31-35) They orders some hydro then fussed over him until it came. Then, because of the low pressure his IV's started leaking and had to be removed. A process I never want to see again. The one in his hand was not big deal, they took it out with no problem and replaced it with out me seeing them stick him. The one in is head, well who ever taped it must have used duct tape. It was stuck to his hair and they had to use adheasive remover to try and get it off with out pulling out his hair. I was there trying to calm him and my heart broke. He just cried and cried, silent cries due to the breathing tube. My poor little man. I wanted to just pick him up and run away. i felt so bad for him. I actually had to walk away at one point because I began to cry. I couldn't bare to see him like that.
Then the IV nurse came to try and put one in his foot. The poor kid, he just got poked and pulled at and now they were going to poke his feet to put another one in.. They tried and couldn't get one in his foot.. Again it was killing me. They ended up putting another one in his head again and got it in on the first try, but my god, all he went through in a matter of hours.. I wanted so badly to trade places with him. I know they were doing what they had to do to help him in the long run, but at that moment they were hurting my baby and that was hurting me.
After they were done I gave him some sugar water on a Qtip (what they call a lollipop) and he loved it! He smiled at me and sucked on that thing like no tomorrow. It made him so happy and that made me happy to be able to do something that made him feel good for a change.
Aiden stabilized and we stayed for a while longer. Once we got home Chuck called at 11pm to check on him and Lilly said he was doing great. I called at 2:15am and the report was the same. O2 good, BP good, and baby seemed comfy.. YAY

Monday, July 10, 2006

July 1, 2006

Aiden looks so good today. His blood pressure is a little low and that worries me but I'm taking into consideration that they have changed his vent settings and are weening him off they hydro so this may be part of the problem. They are also going to give him some more blood in a few minutes so this may help too. His blood preassure is ranging about 20-22 and we want it to be more like 30-33. His O2 sats are and they just did a chest xray to take a look at his lungs and heart. They did a blood gas to check that too. his PIP is now 16 with a Peep of 8, this is a decrease which is a good thing.

June 30, 2006

SO... They did put Aiden back on the dopamine last night about 1am then took him off it at 7am. He also got blood today and the settings (pip and peep) on his vents were lowered. He's been pretty relaxed the last two nights for the most part but I know the Fent has domething to do with that. Last night he looked so doped up. (I didn't like that) But I also know the stiller he is the better the vent can work and the more recoop time his lungs can get. The last xray today showed they actually look a little better but he still has a long way to go. His last head ultrasound showed no extra bleeding and no swelling at all which is a great thing. We still have a long road ahead of us but I can't help to be hopeful and think of Aiden coming home. Daddy getting him a puppy, his 1st bday and all the endless possibilities.

Magic happen in numbers and there are alot of people praying for him. it's hard to believe he will be 19 days already. It feels more like 19 hours to me.

June 29, 2006


We had the family meeting yesterday and although Dr L doesn't seem as positive as we are I'm still holding on to my hope and the fact that Aiden is a fighter. They started him on Hydrocortizone which has gotten him off the Dopamine and has kept his blood pressure pretty ok. His O2 has also been stable today at 40%, but right now he is at 31% which is good. His lungs per the meeting have not gotten better but haven't gotten any worse and his electrolytes and platlets are good too. This give us the impression that there my not be dead bowel or intestines, but just a hole or holes which we are hoping will heal over and fix themselves. That way they can feed him some breastmilk and he can maybe feel a bit better. They also got a pik line in today since they had to take the other one out due to the yeast infection, but this one is not in his leg, it's in his head. i'm just glad they got one in. Maybe this is the start of a good streak. On top of this, all his cultures have been negitive for the yeast.. GREAT!!
His lungs need to hold up and repair some. No more infections and i pray his belly/gut will heal with out surgery. Strong lungs, healthy tummy, good levels, great O2 and no more blown IV's.. this would be my perfect world right now.
Let's get my peanut better so he can come home with his mommy and daddy!!!

I'm at my night visit and Chuck stayed home to do some things around the house since it has been so neglected. Aiden looks so tired tonight his BP is fluttering in the 20's and 30's. The 30's is where we want it but it keeps hanging out in those damn 20's. The night nurse is talking about them putting him back on the Dopamine, but she has never had Aiden before so she doesn't know that this is he routine. Not a good one but it's what he seems to do. I am hoping he will pop back up as usual and all will be fine.. NO DOPA...
I wish Micky or Cat or Liz were here. I just get antsy when he has a nurse who doesn't know him..
As I sit by his bed and just look at him, I can't help but see Andrea and Neill holding there baby boy Beau who is just 12 days older then Aiden. He was also born a 24 weeker. She's been holding him since he was two weeks old. Inside I am happy for them but so jealous. Aiden is 18 days old and not even close to being held yet. I long for that so badly. I want to cry again. It's so hard to feel him in your belly moving and then give birth to him and not be able to hold him. I just want to cuddle him and make him all better. Now with a new IV in his head I can't even cradle him with my hands. It's just a really helpless feeling. It breaks my heart.

June 28, 2006

I'm sitting by Aiden's side until I have to leave for my one o'clock doctors appointment.
Last night was a relitivly quiet night, and so was the night before. Meaning they didn't have to knock on our door and wake us for any issues. Other then that, well Aiden is holding his own on the machines they have him on. A bit of tweeking up and down like usual on the settings but that's about it. Unfortunetly he is stil lon high O2 settings to keep him in the range he needs to be in. There are just so many worries.. His lungs, his belly, the IV's and the damn infection.

Dr L came back Monday and we had a meeting. She told us again she is very worried about Aiden's lungs and what can happen if he doesn't get some recoop time. Her fear is he could blow a hole through the tissue. The she is worried about his gut. He is still not strong enough to go to surgery to repair the intestines, so he still has the drains in. With out that repair he can't eat, and with out eating the only nutrition he gets is the IV fluids which is not good for him if they have to do it for a long period of time. I sware this circle is never going to stop. I'm so angry inside about this happening to him. My beautiful little boy doesn't deserve this.

So it's on to another day and another meeting. i am hoping the yeast infection went away, they can fix the NEC issue, his lungs have time to heal and his blood pressure stabilizes so he can come off the dopamine.
I have to leave now and i don't want to go. I be back later for a "family meeting" to go over results of new tests and all that.

June 26, 2006

We spent the night at the hospital again and I stayed by Aiden's side until about midnight, then tried to sleep, but as tired as I am it seemed impossible. I finally fell asleep at about 1:30am. I woke up at 4:30 and went to go sit with Aiden again for an hour. He was holding his own for a bit but still so frail. I went back to bed and cried myself to sleep this time.
It is now 11:15am and I'm sitting with him again. they just came in to do his head ultrasound and he doesn't like the bother. His O2 sats are dropping and Julie just moved him to 92%. I'm so sensitive to them poking at him but I know they have too. I just HATE seeing him in any discomfort. There finally done and I'll feel better once he settles down.
Dr L is back today, here is hoping when she talks to us, that it's good news for a change. I don't think I can take any more bad news. Something has to go right for my little man, he's fight so hard already..
On a positive note, Aiden finally has 4 primary nurses. Two night and Two day.. The first to sign up was his night nurse Liz. She young but sometimes it's the young ones who seen to connect better with me and I really like her. She's awesome to talk to and has fallin in love with Aiden already. I'm glad she is his nurse. Then there is Micky and Cat who are great too. Micky is one of them nurses who is all about "protecting her baby" and she does a great job at it. Aiden is known as her "lovey" which is funny cause that is one of the names I call him.
Cat is his other night nurse and she is another one we seem to get along with really well. I think we have lucked out so far. The only one we have not met is CC, she's been out so hopefully we will meet her soon..

June 25, 2006


Happy 2 weeks Peanut!!!
Aiden looks so much better! We are battling a lot of hurdles and I'm trying to stay as positive as possible. If not for Chuck always watching out for me too, i think I'd be in pieces by now. I feel bad, he's doing double duty. Worring about Aiden and me. Part of me feels selfish because althought I worry about him I focus all my energy on the baby.

Aiden's test blood culturs came back and there positive for a yeast infection. This is not good. I feel like every time something comes back or we get news it's bad news lately... Why does this keep happening... WHY????

They have started him on a antifungal med now too, because he now has a yeast infection. This could be trouble. You should of seen there faces when they said "yeast infection". It's something we take for granted because it is such an easy fix, but for a baby, and a baby this tiny, it could take there life. Right now I am so very scared..
i am hoping the cultures from today will come back as a negitive, since the positive ones where from the 22nd and 23rd, but i'll assume it will take a while to see results.

My head is spinning again.. there is just so much going on.. The NEC, are the drains working? Is he still going to have to have surgery? How is all this going to pan out? So many questions and we have no answers.
They have up'ed his fentanol for pain, puthim back on the dopermine for his blood pressure which is helping him pee (Yay..) and another issue is the pik line. With the yeast infection, the yeast will attach to the plastic the line is made of, I guess yeast loves plastic, so they may have to take it out. That poses another problem. Aiden's nutrition goes through that line, it's bad enough he can't get my milk yet and with the NEC we have no idea when he will be able to eat so the pik line is really valuable for so many reasons. A nurse mentioned to me tonight that if the pik line goes and he doesn't get rid of the yeast infection she doesn't think he will do well getting nutrition through a normal IV. Great just what I wanted to hear. I almost yelled at her to go take care of her own baby and leave mine to his own nurse please, but I held my tongue.

Please don't let that line go.. Please let the yeast go away. Please let the NEC clear up and the holes heal themselves.. This is what I keep saying over and over with hope someone hears me.. Just let our baby be ok...

Another milestone.. Aiden opened his eyes today...

It's now our night visit which has turned into an overnight. Aiden is really sick. The yeast infection has not gotten better and his O2 levels dropped he was dsat'ing fast and he was on at 100%. They now had to put him back on the jet vet. This is the one that makes him vibrate and gives him 420 tiny puffs of air a minute. I tell myself atleast it is not the osilating vent, but it still doesn't make me feel any better.
They are now watching his blood pressure to as they give him a transfusion, pump in pain meds, antibiotics, and it seems like 1000 other things.. The worry keeps building and all I can do is sit by his bedside and cling to the bit of hope I have left..
Chuck was trying to get me to go home, i was so tired, i hadn't been sleeping good, but then Cat asked if we are staying the night. In her opinion she said we should (she didn't say it but I knew she didn't think Aiden was going to make it) So Chuck went home to get some things and I sat with Aiden. I sat there and silently pleaded with god. if you have ever listened to me let it be now. Give Aiden the strength to get through this and be ok. Don't take my baby boy away..
My heart is breaking as I sit here knowing there is nothing I can do. i can't help at all, just sit here and watch and hope. How long does this go on? Will the end of the NICU road be a good day? Will Aiden ever get to come home with us? So many questions and only time will answer them. i ask myself all the time, why us, or more so why Aiden? He didn't ask to be here and sure to hell does not deserve this! NO BABY DOES!!

Chuck asked me today if I was planning for Aiden not to come home. I guess a comment I made gave that impression. It's not what i intended to mean, but the thought does cross my mind. i think that is normal but it's not what I want or hope for.
Aiden is my heart right now. A piece of it belongs to Chase, a piece of it to Chuck and the rest is consumed by my wee one. It kells me to sit here and see him like this, but I know I have no control over this. Time is the player here. One day at a time, or for right now it's one hour at a time.

June 23, 2006


Today is Chase's birthday. He would have been one today. We left the hospital where we spent the night and brought balloons to Chase's grave signed with messages from all of us who love him and miss him so much. We intended to send them up, but with the rain our plans changed. So i tied the balloons down and put his new stuffed animal, flowers and picture of his new little brother by his stone.
We are sleeping at the hospital again tonight to be close to Aiden. It may not help heal anything but atleast we are close by to look over him. His blood pressure has been out of wack and his lungs are just having trouble.
All this and it's Chase's Birthday. i feel like i am losing my mind a little at a time..
I'm not sure what is going to happen, but I pray everyday he will be ok. It's funny that you don't ever think you can love someone so much until you have a child. It's a love that you can not put into words.

A cute milestone.. Aiden discovered his binki recently and LOVES IT. Just loves it...

June 22, 2006

This is taken directly from my journal... I did my best previously to go day to day but since i didn't start my personal jounal until June 21, and Chuck stopped writting in his there is a gap so bare with me.. Some of this entry will recap the previous info...

To recap a bit more...
Aiden was doing pretty well for a 24 weeker then came another scare. Minus the two family meetings we had already had, this was a nerve racking day on top of all the normal worries.
Aiden had to have surgery to fix the PDA. At this point I was just a mess. Scared I was going to lose my baby and scared he'd be in pain. He went in for the surgery and came out ok. That was such a great feeling! He was only 5 days old and stood strong through it all. His nurse Elly said he did fabulous. His heart rate and blood pressure was on point. I'm still amazed of what he has faced and fought his way through. All I can say is this boy is a trooper. Just AMAZING!!!
My visits to the hospital consist of sitting by his isolete and holding aiden's tiny fingers, or shall I say him holding my finger. I've gotten to change him twice, take his temp and touch him, but he is too little for me to hold still. I look forward to doing kangaroo care him. i look forward to so many things.
Aiden is now 11 days old and been through so much. I look at him everyday and fall in love over and over again. My world has changed and I can't picture him not being here with us.
As I sit here writting I have so many emotions. I miss Aiden every second of everyday and don't know how to deal with that. Tomorrow is Chase's birthday and i struggle with still missing him and the loss I still feel. Now I have to go back to the NICU and visit Aiden again and pray the results of his new tests are ok. That his belly gets better and all the bad goes away. Please god just make it go away.. make my little boy healthy and strong..

Filling in the gap some more...
Aiden's belly continues to be a problem. He vomited dark green bile twice and they had pumped some out of his belly. It was mentioned to us they thought it might have been from the acids building in his belly. So they are going to continue to watch him..
Well it wasn't acid building. It was the begining of NEC, (Necrotizing Entrocolitis) they think. This is NOT good for a baby, any baby, nevermind one as tiny as Aiden. In bad cases the intestines preferates and the maconium or fecal matter empties into the abdomine, even worse is that inmost cases part of the intestines is dead, so the baby has to have surgery to see if they can remove the dead tissue and fix what is left. I am very worried, this could be the downward spiral we are affraid of.
They have to do more tests to be sure what is going on...
We found out today Aiden does have NEC for sure, and there is atleast one hole in his intestines. This is why his belly looks so big and blueish in color. We met with the surgons when we got back to the hospital and we were given 3 options. 1 was to send Aiden to surgery so they can open his abdomine and see what, if anything can be fixed and what is left of his intestines. 2 to put drains in and see if they can drain his abdomine and run him on some more antibiotics and hope that this will help the issue until he is strong enough to go to surgery. (In a perfect case the holes would heal over after the abdomine was drained and none of the intestines would be dead) or option 3 do nothing and make the decision that he has been through enough already. WELL... 1 isn't an option because weknow for a fact Aiden is not strong enough and stable enough to make it through surgery and 3 is not an option because I refuse to give up on my son and let him go. So we both chose option two, to put in the drains and go from there.
While the drains are in they will see what comes out and also run him on a 14 day course of antibiotics. Again my stomach is in knots and I can't think of anything else but Aiden and what he is going through.

The docs come and put the drains in and from what they told us, right away they drained alot of maconium. That's a relief that they got some of that out of him. Now it's a waiting game once again. They advised us to stay at the hospital tonight to be close by. We have no idea what is going on at this point. I'm just worried.. I don't want to lose him..

June 16, 2006


Craziness sets in.. On our way to the hospital my cell phone rings and when i pick up no one is there. (stupid cell phones) I try the number back and I get nothing. I am panicing inside because it's not a number i reconize but I have a feeling it is the hospital. Please don't let there be anything wrong with Aiden.. The phone rings again and it it Dr L, my heart drops, as she tells me not to panic, but... (a but, there is never anything good after a "but")
She continues on to say that Aiden's PDA is open again and he needs to go in for the surgery to fix it. The medications didn't work and they can't give him another dose because it seems to be bothering his stomach and they think it is too risky because of the bleeding he already has in his head and in conjunction with the dopamine it could cause more problems then it is solving. I tell here we are almost parked and will be up in a second. As i hang up the phone i try not to cry. My poor baby. Why is this happening to him.. It's unfair and just wrong.
When we get up to the NICU Dr L met us at the door. We went in to see Aiden and his belly was so red, I was very upset about this. They were "guessing" the medication gave him a belly infection.. Ugh. What else could happen.. So we took the final recourse we had: surgery. Fortunetly this is a relitively common procedure preformed by experts at Childrens Hospital which is connected to Brighams.
So they prepped Aiden as we sat with him for a few hours. We met the Dr doing the surgery and were reassured when he told us he had just finished doing the same procedure successfully twice already today. We went over with Aiden as they wheeled him to the OR, then waited nervously for the word he was ok and the results of the operation. About 45 mins later, the Dr came out and said everything had gone well. Aiden was brought back to the NICU to recover.
We walked back to the NICU with a little less worry and a bit of a smile. Our wee one is a trooper, he made it and will be ok. That is all we could hope and pray for and that is what we were doing.
When we got back to the NICU we had to wait a bit so they could get him situated. When we got to finally see him he looked so peaceful and down right out cold. I knew the anisteshia would do that but to see such a tiny baby like that tugs at the heart.

June 15, 2006

(this is taken from Chuck's journal word for word)

Discharge day for Jess. As I said, we already miss the convenience of close proximity. We visited him a few times before we left, and then went back tonight. It appears that twice daily visits will be our norm for a while.
As I write this I realize i haven't really touched on the people that have helped us out. Lots of friends (Julie, Michelle, Anette) and family have been in and out constantly, helping to raise spirits and exclaiming on the cuteness of our wee lil one.
Aiden has been doing pretty good. He's had relatively uneventful days, which is a good thing. The nurses he had this morning and tonight said they can not hear the heart murmur, so hopefully he is in the clear with the blood vessel. He is still on the antibiotics and blood pressure meds (Dopamine) so there is still plenty to worry about.

June 14, 2006

Today we had another family meeting with the doctors scheduled. After the last one, neither I or Chuck were looking forward to it. Thankfully after a morning filled with worry and nervous anticipation, it turned out to be a pretty good meeting.
The staff at this point were becoming much more familiar with Aiden, and so they had a better idia of what to expect and what to watch for. They had done the head ultrasound and found a small amount of bleeding in the expected area. The good news was that it wasn't expanding, which is what they worry about. His potassium levels had also dropped into normal range and was not something to be concerned with anymore. They also told us about another condition very common with preemies, which is a blood vessel above the heart that short circuits blood where it needs to be while the baby is in the womb and then closes up before the baby is term. Since Aiden was almost 16 weeks early his may still be open. So they gave him a special medication to close the PDA. Without it closes Aiden could run into alot of problems.
I on the other hand am being discharged tomorrow which is bitter sweet for some. Since Chuck has slept in my room every night that I have been here, i am sure he is dying to sleep in a bed. As for myself, well honestly, I like it here. I get to wander down to see Aiden anytime I want, and know I am only 2 minutes away, rather then a 30 min car ride. Plus here I am taken care of and medicated to stay comfy from the C section pain.. Which is not a pleasant feeling at all. Walking isn't so bad at this point, but sleeping seems to be an issue. I just can't get comfy, no matter how I lay, it still feels wrong. But that could be because I had a classic. That is when they cut side to side on the outside, but up and down on the inside. it is the fastest way to get to the baby they said. The down fall is, it takes longer to recover and you can never have a vaginal birth again, so I will always have to have C sections from this point on.

June 13, 2006


Today we had our first sit down meeting aka "family meeting" with the doctors, nurses, and social worker. The gist of the meeting was them explaining all the diffrent things they are doing to care for Aiden. His potassium level, ventilation, bleeding in the brain, blood pressure, etc...
I did not take this all too well.
He is on dangerous ground for so many issues accross the board that it is almost pointless to worry about one thing more then the other. However there are still certain things which are immediately life threatening. Potassium level for example. Normal is around 4 to 5. if it gets to 8 or 9, doctors get very worried. Aiden was at 7.6 at the time of the meeting. It spiked to 8.4 later in the day, but thankfully it looks to be coming down again. 8.1 and 7.6 in the last two tests..
Chuck and I are becoming experts at reading all the different sensors, read outs and alarms. It's almost comical to see us conversing with the staff, asking the same questions repeatatively. How's his potassium? How's his blood sugar? How's his breathing? What's his O2 percent at? Have they done a new ultra sound on his head? How's his skin? Etc...
From our non-professional view point, he actually looks to be doing pretty well. We are acutely aware that we are still in what they call the honeymoon period.
We on the other hand are just glad he is doing well today and that is all that matters to us. His color looks better, he is lighter and pinker, which means his bili levels are lower and the photo therapy is working and Aiden looks to be resting more comfy.

June 12, 2006

Late last night and most of today we have spent in a "holding pattern". The doctors like to scare the crap out of you with their grim assessments of the bad things that can happen. Apperently it seems to be the nurses job to be the optimistic voice. They tell us the first 3 days is considered the "honeymoon period". I understand they are trying to prepare us for the worst. I just wish they'd understand we have been through the worst once before. We Know! Now just give us the straight facts and let us retain our hope.
It is very clear the staff here knows what there doing, and they seem to really care. It is suppose to be the best hospital in the world for preemies, and it so far definitely appears that way.
Chuck stayed with me at the hospital over night, and the great thing is they let us down to the NICU any time we want, which is often.
The big scare right now is Aiden's potassium levels. It is very common for preemies to have hight potassium, but if it goes to high it can cause heart failure. There also isn't much they can do for it. They give him calcium to fortify his heart, but for now we just hope. They told us this happens frequently and then usually drops within 48 hrs. once it goes back to normal, it's not usually a problem again.
They also have him hooked up to a stunning array of IV's, sensors, and ventilator tubes. The amount of things they are continually tweeking and medicating him really drives home how fragile he is. Ventilation levels, blood pressure, heart rate, blood gases, potassium, blood sugars, photo therapy for his skin... Up on this, down on that.. i am trying to keep up with it all but it is truley overwhelming.