Tuesday, June 17, 2008

Again and again.

Yep. He actually managed to extubate himself AGAIN.
Twice in one day. And technically three times because after they FINALLY got him reintubated tonight, they went to tape it and managed to pull it out again. So before they could even get him back to bed, they had to start all over again.

It was a long day. David did get a urology appointment- July 3rd. That seems so far away. I'm scared. If he had pain, I'd be more convinced it was kidney stones, but he doesn't. So I think scarier stuff.

I got to the hospital and everything felt out of sorts. Robbie was fine but restless. It was bright in the NICU. It felt weird.

L- The mom of the baby to Robbies left closed the blinds to the little window close to Robbie. That helped a little. He was getting a blood transfusion so he couldn't be held. It takes 2 hours. I talked to him and gave him still touch to quiet him. Finally his nurses got chatty and kept me company a while.

After the two hours were up, I could finally hold him. The holding went well. I only heard weird sounds two or three times and it was fine each time. But then it was time to put him back to bed. The night nurse got him to bed and suddenly said "what just happened" and I said "that doesn't sound good" and I could see the tube coming out of his mouth.

I really do think she pulled it when she put him to bed. They always get a 2nd nurse to help and she didn't. There are just too many tubes and wires to do it alone.

I tried not to panic as they came to try to reintubate. At one point he has 6 nurses and respiratory therapists working on him. They did a good job of keeping his stats up with the baby, but the NP seemed to be having issues with the metal thing that looks through the vocal chords.

I was really trying to stay calm and thought I was doing okay until one of the nurses came and sat next to me and said "it's not your fault. I don't want you to think this is because you kangarooed him." Of course, being nice to me when I'm trying to be stoic is the worst thing you can do. That's when I started crying. The nurse got me a tissue and explained everything that was going on.

But it took forever. I don't mean "it felt like forever." I mean, it took about a half hour to get it done. The first time. That's a LONG time to see your kid being worked on. David kept trying to touch me. I just wanted to be left alone.

After they got it in, no one seemed convinced it was right. X-ray came to check it and they really decided that it wasn't in, but let them take the x-ray to see. But before it could even be read they decided it definitely wasn't in. Back to the bagging.

At one point another NP came by and told us we were "welcome to step out." I'm afraid I couldn't stifle the snotty laugh. "I don't think so. We'll be here until he's settled." I'm sure she thinks I'm a bitch, but anyone who thought I was "stepping out" while they tried to keep my son's heart beating and brain oxygenated is insane.

The 2nd intubation took less time. Maybe 15 minutes. But the whole thing took nearly an hour.

Once they got him done, I went to calm him. He was tired so he wasn't doing much, but when they put his feeding tube back in before X-ray came, he was PISSED. I finally got him calmed down. X-ray took the film and I sat at his bedside soothing him. When the call came that everything was in the right place, I got him settled in and back to sleep and finally agreed to go pump before my boobs exploded.

David came with me to the pumping room. I thought I was okay. Until he asked. People really need to stop asking me if I'm okay. The answer, quite frankly, is no. But what choice do I have?

I tried to say that yes- I was okay, but instead I broke down. I sobbed for a while. Harder than I have since Robbie was born. I kept thinking that I'd stop, but I couldn't. All I kept saying was that no baby deserved to have to go through all of this. All I could think was how I did this to him. My body failed. If I could have stayed pregnant he wouldn't have to be poked at, prodded at, tubes shoved everywhere, needles in his heels, alarms sounding every few minutes, nurses turning him every few hours so his head doesn't flatten. It's just not fair. I failed, but he suffers.

I just don't understand. None of these babies deserve this torture. They should be floating in amniotic bliss. Not having lights shone in their sensitive little eyes.

It just isn't right.

After I finally stopped crying, I got back to business. Milk. Something my body can manage.

David was clearly worried about me. All I could tell him was that I'd manage. I just need him not to be sick. He said he'd do his best.

We headed back to the NICU milk in hand. Robbie's partner (the little girl to his left) had visitors- her dad and grandma. I hadn't really formally met her dad, so we introduced ourselves. I was disheveled. Her grandma looked concerned. I told them of our adventure.

They were very kind. But by the grace of God goes them.

We finally made our way out after 10 o'clock.

Home to pump again and then to bed.

Tomorrow we do it again.



Mrs. Spit said...

What a stubborn little boy! This is a good thing. It bodes well.

I understand the feeling that your body has failed. All too well. All I can say is this: we live in a fallen world, where horrible things happen to the most innocent of children.

I thought about any words I could give to comfort you as you rested tonight, and all that came to my mind were these words, written at a particularly evil time in our history.

I believe in the sun, even when I cannot see it.
I believe in love, even when I cannot feel it.
I believe in God, even when He is silent.

Wishing that you would feel God, even when you can't hear his words. Holding out hope that He is with you in this, and He is strong, in the midst of weakness and frailty.

Praying always.

Stacie said...

One of my sons was a tube puller. He pulled everything out...over and over again. After awhile, I got a little numb to it all.

As for the feelings of your body has failed, I too struggled with that (and sometimes still do, although it is getting less and less now). Many of the mothers of preemies that I've talked to have felt similarly. I don't know if it makes you feel any better to know that, but it helped me a time bit.

Robbie is a tough little guy, much like his mother. Please try not to be too hard on yourself. As hard as it is, let your husband in on your feelings. This is an incredibly stressful time, and you need to be there for each other as much as possible. That includes sharing all your feelings about what is going on--the good, bad, and the ugly.

Much love to you and your family. I hope that tomorrow is a better day for everyone.

Anonymous said...

I cannot say I know how you are feeling, but I can say that you have strength beyond your wildest dreams to get through days like today and any more that come along. Your family are in my prayers.

Osh said...

remember when Evan had the reaction to the anaesthesia several years ago and had to be bagged on the hospital floor, restrained and put back under? Scariest shit ever. Watching doctors working to save your kids life is not an easy thing, standing by helpless isn't much better...
This mom stuff is hard. I send you hugs and prayers every waking moment.

Heather said...

I'm sorry you had a rough day yesterday. What you're going through is one of the toughest things ever. Our daughter was in the NICU for 10 days after she was born. I know its not as long as what you're going through, but I remember all the tubes, wires and alarms going off. We were on pins and needles the whole time. I'm praying for his continued progress and the day you get to take Robbie home.

Amy said...

Oh gosh, I am so sorry you guys had such a difficult day. (((((((((((Trish))))))))))))))
Praying that today is infinitely better than yesterday. I love you!

Nicole said...

Trish, I just wanted to let you know that I pray for you and Robbie and David every morning as I read your blog. It must be so difficult to keep up your strength, but I'm amazed at how you manage to get through each day. This isn't your fault. Don't even start thinking that way- nothing you could have done would have prevented this. You're being the best mommy you can possibly be by sitting with Robbie and showing him so much love every day. He's a lucky little guy to have you and David, and he's going to get through this.

Anonymous said...

I had many uncontrollable moments like you described - where everything was just too much all of a sudden and once I started crying, I just couldn't stop.

Your feelings are all 100% normal. I still have those thoughts - almost every day.

Robbie is a strong, stubborn little guy! Trust in the doctors and nurses and believe that he'll be 110% VERY soon!


Hyperfertile Infertile said...

I am so sorry for such a rough day. My heart breaks reading this. We weren't there for as long, but I felt so guilty and so... I don't even know. The NICU is what it is, and no one can understand who hasn't been there.

Hang in there. He's a strong little boy.