Saturday, June 21, 2008


And the roller coaster plummets again.

On Fridays my dad takes me to the hospital. He's off on Fridays so rather than both of us drive up there, we go together. Yesterday, we started the morning shopping for a freezer (I'm officially being attacked by bottles of breastmilk every time I open my freezer door now.) and had lunch.

Dad bought me a freezer. Yay Dad!

We headed up to the hospital arriving about 1 o'clock. When I came in, they had his isolette lid open and when I looked at the nurse questioningly, she opened his diaper and said, "See the blood?"

She looked concerned. My heart stopped. I couldn't do much except look around for answers. The nurse practioner was there and said she'd already called for an X-Ray. I welled up with tears. What do I do?

The NP pretty much said to hold on until we had some answers.

The nurse took another blood sugar since that's often a sign of something going on. His morning sugar has been 86- fine. This time it was 147. Much higher. My stomach churned. Please don't let this be happening.

After what seemed like an eternity (about a half an hour- they apologized for the delay), X-ray came and got a film. It was normal. Everyone assured me that was VERY good news.

In the midst of this, a huge storm rolled through and the power went out. It was only out for about 30 seconds in the NICU (back up generator, of course) but it was just one more point of insanity in the chaos.

Oh- and a baby on the other end of Robbie's row extubated himself, so there was a lot of commotion going on as well.

As for Robbie, they had stopped his feedings and were basically waiting for more tests.

He's retaining a lot of water. His poor little legs are swollen and red, but they already gave him Lasix a few days ago and no one seems concerned. Apparently this isn't uncommon after getting a blood transfusion which he recently did.

They decided that they would change his feedings from fortified breastmilk to plain and asked me to go pump some fresh stuff. Off I went.

I got to the pumping room and got set up and the power went off again. The plug for the pump isn't on the backup generator. So I waited. Maybe 15 minutes later, it came back on and I made a fresh batch and delivered it.

While I had been gone, they had done a CBC.

We waited for results. The nurse was concerned that the power outages had affected the lab computers and they wouldn't get them up right away.

I wrung my hands.

What was probably a short time later, but felt like yet another eternity, it was back- normal.
They were still waiting on the more detailed results, but so far the tests looked okay.

My dad asked if he should "go talk to someone" about the results taking so long. I think it would have made him feel better to go beat the crap out of someone. I understand the sentiment.

The nurse checked his diaper again- no more blood.

The NP said that because the blood was bright red and not mixed in with the stool that it's quite likely that his rectum is irritated. It could be a small fissure. He poops at pretty much every diaper change (a small amount) and it could be irritating his rectum.

I wish I could say that reassured me.

They restarted his feedings with the breastmilk and got him settled for a while.

Around 5, they decided we could Kangaroo.

Shortly after they got him into my arms, Dr. C pulled up a chair to chat.

He said that his CBC was almost exactly the same as it had been on Wednesday. (They had done a work up that day before they started steroids.) One of the more detailed components, though, was ever-so-slightly askew. They were going to go ahead and start antibiotics just to be safe. And of course, they ordered all the cultures to see what they found.

In much better news, his lungs are greatly improved. His O2 needs have been mostly in the upper 20 percents and they lowered his rate as well. And were considering lowering the rate again. Dr. C says we may extubate this weekend. He's very pleased with his lung progress.

As they say- 1 step forward, 2 steps back. Sometimes it feels more like 200 steps back.

Dr. C told me that he wished I'd been at the hospital early in the morning. A 25 weeker graduate had stopped by. He's been home for a few months now and doing very well. He tells me that he had "far more problems than this little guy (pointing to Robbie) ever had." I guess he had an abdominal tear and had to have heart surgery. I told Dr. C he was a good counselor.

I held Robbie for about 3 1/2 hours. He was a happy baby. His plain breast milk feedings went well. Nothing left and just before we left for the night he'd had a big poop. There was a spot of dark brown that the nurse wasn't sure if was dried blood or not. The NP looked and said she didn't think so.

His blood sugar was back down into the 80s.

I talked to his nurse this morning around 5 and she said he was having a good night. Oxygen at 28%, hadn't been higher than 30% through the night. Sleeping peacefully, no more blood.

Right now- we wait. All the people who are smarter than me seem encouraged. I'm trying to trust that they know what they're doing.

I just keep praying. I hope you'll join me.



Heather said...

Sorry about the roller coaster, but glad in the end things seem to be going well.

Amy said...

Oh goodness, I'm so sorry about the roller coaster. That must have been so scary, and I'm sure the power outages didn't help! Glad things seem to be looking up a bit now. ((((((Trish))))))) and of course I'll keep praying for you all. Call if you need to talk.

Heather said...

Did they talk about NEC at all? Madeline had it and it's very common in preemies. Sounds more like an irritated rectum, though!

Stacie said...

YOu know, suppositories can cause bleeding. Did he have any rectal anything recently? One of my boys had blood in his stool once, so we tested for NEC, and all came back clear. They attributed it to Tylenol they had given him rectally earlier in the day.

Hugs to you. Please know that all of this does get better. It is scary as hell while you're in the middle of it, but it WILL GET BETTER! I promise. Your little guy sounds strong and relatively healthy considering that he was so little and early. That, my dear, is the thing to focus on.

Much love,

Anonymous said...

We're all still with you on this journey. Sorry we can't actually be there with you physically every step of the way for a hug here and there. I have prayed for you guys daily and will continue. Your are such a strong Mommy!!!

silvashan said...

Many prayers sent your way Trish.

Baby Steps to Baby Shoes said...

I am glad you got to hold him for so long. Know that I and my entire women's group at church are praying for all three of you.

Nichole said...

Dear Lord, please take care of Robbie, he is so loved by his family here on earth, and even more loved by you. Please hold his precious body in your hand and work your healing miracles on him. Lord I know that you are a healing Lord and I ask that you place your hand on Robbie and heal his young body. This I pray in your heavenly name. Amen

Fran said...

You and your sweet boy remain in my prayers.

Kristin (kekis) said...

These ups & downs are killing us, so I can only begin to imagine how it feels for all of you. I'm sorry it was so rough, and I'm glad to hear that things are looking better. Prayers are still coming . . .

AngelsAmid said...

I'm praying for you! You're post sent my heart on an emotional roller coaster so I can't even imagine how you're feeling. That's reassuring to hear about the 25wk graduate! =) Robbie is doing great!

*huge hugs*

Two Hands said...

Haven't stop praying and won't. I'm sorry you and your son (and family) have to go through so much. I pray that at the end of this rollercoaster is a chubby little boy with bright eyes and a snuggly disposition. You deserve nothing less.

Valerie said...

Tessa's had blood in her stool too. They've said it could be a milk allergy - but she doesn't have any other symptoms, so they're not really concerned. I'm terrified though since it keeps happening. We have a doctor's appointment this week where I'm going to address it further.

I know how scared I've been about that, so I can only imagine how scary it is for you. It sounds like Robbie has great doctors - and that must make you feel better.

Keeping you all in our thoughts and prayers.