Thursday, July 17, 2008


Well, as they say, two steps forward, one step back.

Or in the case of the NICU, half a step forward, 3 steps back.

Here's the deal as I know it.

His tummy issues continue. I spent the day obsessing about NEC. I made the mistake of googling. I even told myself before I did it that I shouldn't. But I did. And, of course, freaked myself out.

The good news is that no one except me seems worried about that. His day nurse says his belly doesn't look like that, his night nurse (who has proven herself to me in the past- she's the one that caught the cold stress when he was a weak old) doesn't think he's "acting sick." The doctor actually upped his feeds very slightly today, and if they suspected NEC, they'd actually stop his feeds altogether.

Robbie has had a lot of sucking today, though.

His breathing has sucked. I admit that I'm so disappointed because he had SUCH a good day on Monday. But, he's been down to room air a time or two in the last couple of days which is great. The trouble is that he's also had some pretty big desaturations. And plenty of As & Bs. Not so many that they're worried, but enough to scare the shit out of me.

I got to his bedside at about 8:45 tonight. At 8:45 and 10 seconds, he stopped breathing and dropped his heart rate lower than I've ever seen it. Scared. I'd already spent all day worrying about him, so that set off tears.

Some of the parent volunteers were coming thru just then, so they got to watch him.. well.. suck. THey were lovely.
One of them I had met before, the other I hadn't.
The one I hadn't offered me her home number. And at one point asked if I needed a hug. I actually said yes. And she hugged me a long time. And I cried. A lot.

Shortly thereafter, I went to change my shirt to kangaroo and prayed to God that he just let Robbie be okay. I just need him to be okay.

Then I went back to hold him.

Night Nurse gave me a little lecture about not watching monitors and just enjoying my baby. I did my best.

We had about 30 good minutes before he started sucking again.

Then we had another hour of mostly okay, though she kept having to turn his oxygen up. Over 50%. That's not how kangarooing is supposed to go.

The last half hour, he sucked more. I finally had her put him back to bed because I don't think either of us was doing that well. Still, we got 2 hours together, so it's something.

But back to the sucking.

He's had air sucked out of his belly.

He's had bile sucked out of his belly.

He's had boogers sucked out of his nose.

He's had secretions sucked out of his mouth.

His day nurse apparently got a ton of stuff out of his nose. He'd had a big desat that was otherwise unexplained so she checked. Sure enough. A bunch. He improved a bit after that.

His night nurse sucked a ton of air out of his belly. Along with a bunch of bile.

She actually thinks the air in his belly is playing a part in his breathing issues. His belly is pushing on his lungs and causing some trouble. She also thinks that's why he's throwing up bile. She thinks the bile is normal, and it's coming up because his belly is full of air.

Everyone seems to agree that the CPAP is the source of the air. But of course, he has to have that to breathe.

So, twice a day, they thread a 2nd tube down his nose and suck it out. Is it any wonder that preemies often have trouble with sensory issues?

Oh. and he lost weight again. He's at 2lb 11 oz. That's down about an ounce over 3 days. I honestly don't care about his weight. Except that with weight comes progress. So we try to think fat thoughts.

So that's where things stand for now.

It was another long day. Close to 15 hours.

I'm off to bed.



Amy said...

Oh, honey ... what a sucky day! I'm so sorry. Glad there was someone there to hug you while you cried; wish I could do that. These ups and downs just sound SO emotionally draining. Huge hugs and double-prayers today. I love you!

Two Hands said...

I wish I could go to the hospital with you and hug you when things go crappy. Poor little peanut, I really hope today is a much better day for him (and by extension, you).
Thinking of you and your little one ALOT today.

Jess said...

I wish I could give you all the hugs you need, especially on sucky days. Lots of prayers for you and Robbie, I'm always thinking about you.

Mrs. Spit said...

I'm sorry. That's not a good day, that's a hard, wearying day.

Remember, behind you in NICU, there's a whole group, and we are cheering on both you and Robbie. And when you are tired, and weary and frightened and confused and frustrated, we are with you.

Anonymous said...


- jandc

silvashan said...

you and Robbie are in my thoughts and prayers Trish.

tbonegrl said...

I just wanted to offer ((HUGS))

S said...

I'm sorry for the hard day. I hope today is much better!

Anonymous said...

I just came across your blog....geez louise. As if you haven't been through enough. Infertlity, miscarriage, all the crap that comes with both...then a preemie? Holy cow!!! Why can't we just get a break sometimes? I hope everything goes ok and your baby gets to come home soon. Total Suckage....

Monica said...

just wanted to let you know I am praying for you and your baby boy. NICU can be scary at times but he will grow and get better. Hope for a great day tomorrow.

Aidan's mom said...

Just found your blog. So sorry about the sucky day. I don't know if you are in contact with many other preemie parents, but if/when you feel up to it, let me know and I am part of a couple of really good online preemie groups.

My own DS was an IUGR 28 weeker born at 1 lb 8 oz and 12 inches long. He was delivered due to pre-e/sudden onset HELLP.

I am happy to say he is almost 3 years old and is doing very well. He is thriving and you would never guess he was once so small.

Please let me know if there is anything I can do for you. Even lend an ear...we were in NICU for 105 days.

Wishing your whole family the best.

Stacie said...

Hugs, Trish. One hour at a time. Keep taking things one hour at a time.

Much love.