Friday, August 22, 2008

It's set

The surgery is set.

It has been a very long day.

I slept later than I had intended and when I called in to check on Robbie, the nurse who answered the phone is not one I'm overfond of. I really should have asked her not to be assigned to us long ago.

She's one of those that when I call in, she'll say "hi." in a short way that conveys "Why are you bothering me?"

When I ask how she is, she replies "he's fine."

Um. Details. Thanks.

I decided not to even get into it then, I'd just hurry and get out of the house and up to the hospital right away because I had questions for the doctor anyway.

Less than an hour later, as I was gathering my things up to take to the hospital, the phone rang and it was her.

Of course, my first instinct is to panic because the hospital was on the Caller ID.

She was calling to tell me that she was placing his IV for a blood transfusion for the surgery.

I informed her that I hadn't actually consented to the surgery yet and I had some questions that needed answered first.

She got snippy about how she needed to place it before his next feeding. (Still 90 minutes away.) I told her I was on my way then. Again with the pissy. Again, I reiterated that I had questions for the doctor. AGAIN with the pissy.

That's when I snapped. Yep. It took 11 weeks and 5 days for me to officially lose my temper. I started yelling.

I told her that I understood we were on HER schedule, we're always on THEIR schedule, but right now I couldn't tell her that Robbie was having surgery tomorrow, so there may be no need for an IV in the first place.

She was clearly taken aback. She sputtered about it not being her schedule, it was Robbie's schedule. She said the doctor was nearby and could speak to me now.

I told her I wasn't prepared just then as I didn't have my list handy and I'd like to speak to him in person. Again with the pressure. Havetomakeadecisionrighthissecond. I refused to be pressured.

After we had a little more back and forth, I finally told her to put the doctor on the phone. She offered to hold while I got my list. I told her again I wasn't prepared to discuss it right then, but to put the doctor on the phone. RIGHT. NOW.

I was on hold several minutes. I'm sure she was telling him that I was a huge crazy bitch. Too bad he already knows that, huh?

In any case, I ended up talking to the doctor at length. I got my questions answered. I'm quite certain that I irked the piss out of him, but frankly, I don't give a shit.

That's the freedom of crossing the line into bitch territory. Up until today, even when I was cranky, I tried to remain civil because I really didn't want to be thought of as unpleasant. Since we're past that point now, I may as well just go balls out and go for it.

I've joked several times today that they're going to transfer me to the Children's hospital across the city because they can't take me any more.

So, it's set. Tomorrow morning, they'll wheel him down around 10am. He's going to have a fundoplication (where they wrap his stomach around his esophagus), the hiatal hernia repair (stuffing his stomach back down where it belongs), a G Tube placement (a hole near his belly button through which he may be fed), and apparently there is some debate that he may actually have an inguinal hernia (in his groin) so they're going to check that and maybe fix it, too. And I asked about circumcision as well. I have to speak to the surgeon about that tomorrow morning, though.

Feel sorry for Robbie yet?

They tell me it's actually quick. Probably less than an hour. He'll be intubated (effing vent!) and we'll recover down at the old NICU. I have not missed it.

We hope to only be there overnight, then back to our usual spot in the new NICU. Our roommates are offering to cover our spot with their bodies to hold it for us.

I will say that Dr. Director did make a note that we'd like our same place back if possible. Probably did that just to shut me the hell up.

Pissy Nurse was quite nice to me throughout the day. Frankly, she should know better. She had a preemie herself.

I did NOT apologize for yelling. I wasn't sorry.

Robbie took one bottle this morning before I got to the hospital, and I tried to bottle feed him once during the day as well, but he was SOUND asleep and wanted no part of it.

But after his fantastic night nurse came in, we bathed him and he was WIDE awake and trying to eat his clothes. They usually tell me he's too tired after a bath to eat, but I asked if we could just try. She was all for it.

He nursed at the breast for 20 solid minutes. He did so well that she didn't gavage feed him AT ALL. He looked drunk when he was done. Breast milk coma. He slept in my arms for several hours afterward.

It was a better end to the day than it had started.

I hope tomorrow is the same.

Our pediatrician called me at the hospital tonight. She's on board with everything. When I told her that I was uneasy about the G-Tube, she gave me a thought that no one else had. He's having his esophagus worked on. If he doesn't have a G Tube, he'll need an NG tube (from nose to stomach) and that would be irritating to his esophagus and stomach.. plus can be a source of bacteria. That solidified my decision on the G tube. I feel okay about it now.

The surgery itself makes me nervous. I hate anesthesia. HATE IT. And with Robbie's breathing history, I'm nervous. And the fact that everyone keeps talking about how unusual it is for a preemie to have a hiatal hernia.. well.. Sometimes being unique is overrated.

All the nurses have assured me that our surgeon is the best. A nurse I don't even know said that if it were her child and he didn't work for this hospital, she'd follow him.

Nurses that have been very honest about not liking people in the past have also said he is great.

I feel like we're in the best hands (literally) we can be in, so we move forward.

I'll update ASAP tomorrow.



Amy said...

Praying hard ... and I'm glad you and Robbie did at least have a wonderful breastfeeding/snuggling end to a very rough day.

Stacie said...

Sending positive vibes to you and most especially Robbie. I be thinking of you.

Heather said...

I'll be thinking of you and Robbie all day. My DD was a premie and had surgery on her lung when she was 7 days old. It was scary, but she got through it with flying colors. I was really lucky. I liked all our nurses, except the one the last night we were at the hospital. She made me feel like she wasn't eating enough and wasn't ready to come home. I took her across the hall to the lactation room to feed her during the night and the nurse kept knocking on the door. Earlier that night when she asked what our plans were and I told her of our arrangements to sleep in the lactation room across the hall as we had been, she ran off with an "we'll see about that!" Then she asked me when she came back from talking to the other nurses who validated my arrangements, as I was the only nursing mom in the NICU, "We'll won't it be inconvenient me waking you up to feed her?" I looked at her and said "When she comes home tomorrow, I'll have to get up and feed her!" I think that's why she freaked me out the rest of the night.

And the breastfeeding coma face!!! I remember that! It's awesome!

Sandi said...

I am saying hello, finally. I have been following robbie since his birth, I read everyday. I just want to let you know you have another TTTC nestie pulling for robbie. He is always in my prayers, I will be thinking of you all today! Good luck robbie!

Maria (MKC101103) said...

I'm sure others would have said to be more polite, but GOOD FOR YOU for not giving in until you got your answers!!!

I'm praying for Robbie.

Jen said...

I'll be saying LOTS of prayers for you!!! I wanted to let you know..about the G-tube..a friend of mine has a child living with a life thretening disease and I won't go into it, has to do with protien not being able to be broken down and too much protien leads to a comma and death (lovely to think about every day huh)...anyway because of this serious illness she needs LOTS of medication and often times needs extra calories since she can't eat a lot of foods, their doctor suggested a G-tube and while they too were very nervous, she says once they did it, they feel this was the BEST thing ever. They have no regrets...I know Robbie's needs are VERY different, but just thought it might help you to know that someone else out there is a mom that is very pro G-Tube.

I wish you the best today, I know it will be a rough one, emotionally for you and physically for Robbie.


e.b. said...

I am so glad you stood your ground!

I'll be thinking of you guys all day.


Mrs. Soup said...

You all continue to be in my thoughts. Sending Robbie every keep fighting vibe I've got and sending you any extra strength you need.

Jenn said...

Good for you! I hate feeling pressured too. I am thinking of you guys today!!!!

Tracy said...

I'm praying that Robbie comes through the surgery strong and recovers quickly.
Praying for wisdom for the doctors and medical team.

Mrs. Spit said...

Ever get between a momma bear and her cub? She'll kill.

Good for you for standing up for your questions and your need to make the best decision for Robbie.

And good for you for getting what you needed.

We will be praying.

Amy said...

Good luck tomorrow! I'll be thinking of all of you!

Alihutch said...

Big prayers out to you. You'll be on my mind all weekend (and so will Robbie, of course!). Good for you for finally going off. I want to kick that nurse in the shins for you!
We're all thinking about you guys over on "Success After Loss". Can't wait for you guys to be home, and for this to be a distant memory.
Love from Yellowcar,

Megan (mmr2006) said...

I'll be thinking of all of you today! Big big hugs!!!!

-fellow sticky Megan

Susan (nasus1976) said...

My thoughts are with you and your family! ~A fellow Sticky

Sonadora said...

Prayers as always Trish.

Anonymous said...

You are a strong Momma and putting your foot down is your did good. Praying for you. We are all still here for you.

Leah said...

My prayers are with your little boy.

Elisa said...

I will be thinking of you and Robbie tonight and tomorrow. And congrats with the breastfeeding! That is so great!

Valerie said...

You're not crazy, girl. You're just a mom who's fighting for the best for her son. Continue to do what you need to do so that he gets the best care possible.

I'm praying for all of you.

Milenka said...

*hugs* Many thoughts being sent your way!

Anonymous said...

Good for you for standing up for Robbie! I'll be thinking of you today. I'm sure he'll come through this with flying colors!

- Sarah (MrsSLJ), a fellow sticky

Natalie said...

I'm praying for Robbie always, and of course you, David, and his medical team.
You're such a good mom, and sometimes some things just need to be said. I'm glad you held your ground.

Anonymous said...

I will be praying for Robbie. I hate that he has to go through it. Also praying for strength and peace for you and David. Hugs.

Andrea (pinkwedding05)

Anonymous said...

Please don't circumcise your baby :( It's not your penis to cut.