August 19, 2006

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

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

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

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

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

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

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