the roller coaster ride of emotions begins - June 3-6

The best way for me to give you inside into the ups and downs of Wyatt's health and our ability to cope, is for me to share some personal updates and messages we wrote during the first few days of his life:

June 3

We said goodnight to Wyatt and he is acting so much better. He’s still on the ventilator but is much more stable than this morning. He yawned twice and was making sucking motions… This seems like such a nightmare, we’re both waiting for the moment when we wake up. In reality, we haven’t slept since yesterday morning. After spending all day at the hospital, we’re now heading home without our baby. This was supposed to be the happiest day of our life. The older kids were supposed to be off from school to spend quality time at home with their new baby brother. Instead, they spend all day not knowing what’s going on, just like all of us. I haven’t seen them all day and while I know that they’re taken care of it, I also worry if they’re alright and what they must be thinking. I feel so lost. My heart hurts yet I feel so numb. Everyone keeps asking me if I'm ok. Are you serious? I know I just had a baby but medically speaking, I'm not the one to worry about here. What does that question mean anyway? Am I ok? No, I'm devastated and there's nothing anyone can say or do to make me feel better right now.

June 4

Wyatt's responding much better today. He's still sedated and on the ventilator so he can rest and ease into breathing more on his own. However, he did open his eyes a little, yawned, stuck his tongue out and sucked on the tube. All good signs we hope. Tomorrow the ventilator is supposed to come out and they will start tube-feeding. If he does well with that then maybe we can hold him for the first time tomorrow… We finally managed to get some sleep last night and when we woke up, we were still stuck in this nightmare. Words can’t even describe what I’m feeling. I’m still in such disbelief and so lost on what to do. I feel like I have 1000lbs sitting on my chest and I can’t breathe. Looking at our baby attached to all this medical equipment is so hard. Without it he wouldn’t be alive but all I want to do is take it off of him. I feel so helpless. Someone please tell me how to fix this.

June 5

I’m so anxious for today's assessment and response... Morning visit: Wyatt is doing well. All of his numbers are going and should be off the ventilator either tonight or tomorrow. They have him on less sedative so he will not need the ventilator as much. We'll see. He’s not out of the woods yet but things are looking up… Evening visit: Wyatt is still on the ventilator but they continue to reduce the medication that keeps him sedated to try to get him to work for it more on his own. It’s not quite the progress we were hoping for today but it's good to see him more alert. We were able to hold his hand at least.

June 6

Wyatt is off the ventilator!!! He just needs a little extra O2 to help the process… I'm not coping well today.  Wyatt hasn’t made any improvements since yesterday.  He's actually back on ~30-40% O2 via nasal because he couldn’t hold his O2 saturation up since he's still not breathing often and deep enough. They're not really sure why. His blood gases are looking good with the increased O2 assistance.  They even tested his heart today to make sure the pressure is good.  Everything regarding his heart is looking and working fine. The cardiologist wants to see him again in 4-6 weeks just to make sure. Now Wyatt is also having trouble with his GI tract, he hasn’t had any bowel movements lately. They keep saying that's normal with the stress he's been under and because his body is just redirecting the blood to other areas right now. They'll give him a suppository by tonight if he can't get things going on his own...
A few hours later… Unfortunately Wyatt is back on the ventilator. He couldn’t take enough deep breaths on his own yet. He’s not back on sedation though and they will continue to tube-feed every 3 hrs.

I know it takes time but I'm having a hard time seeing things positive today.  Pumping is the only thing I can do for him right now and now he's not able to absorb it all.  I just wish there was something else I could do. I'm so angry at the world today, a punching bag would be great right now. I don't want to talk to anyone or see anyone. I can't handle people trying to stay positive right now and telling me "today is not a setback, it's normal" and "it just takes time". The phrase "congratulations" just makes me want to yell at them. I want the normal experience with the welcome home balloons and the sleepless nights because he's hungry or needs a diaper or just wants to be held. Getting up to an alarm clock every 3 hours at night to pump is not the same. It feels like holding his hand today just made things worse emotionally. It's so hard to just watch him and wait and not be able to do anything. I even get angry at other parents walking out of the hospital with their babies. And there are all kinds of people walking out of this hospital every day. It doesn’t make sense. How can moms who didn’t give a damn what they did or didn’t do before and during pregnancy, who ended up with all kinds of self-induced pregnancy complications, how can they walk out of here with such healthy babies? And then we’re sitting here in the NICU even though we did everything right? Why?