Sunday, February 22, 2009

Weekend update and interview take II

Sorry for the quiet. Not much to report. My mind goes non stop but nothing seems to be forming into real thoughts.

Robbie's eating has gotten worse again. He's down to averaging about an ounce and a half. Still miles better than it was before our hospital stint, but also miles from where it needs to be.

We have another follow up appointment tomorrow. I suspect we'll be schedule the G tube surgery then.

He has gained some weight this week. I have a scale at home and I believe he's right about 10 lb 8oz. We've been adding ProSobee powder to my breastmilk for calories. Obviously it's working, but it's pissing his reflux off something fierce. We'd actually gotten to where he was spitting maybe once or twice a week to now back to several times a day. And he seems uncomfortable. It's something we'll discuss again tomorrow, I'm sure.

I have such mixed feelings about the G-tube.

I do feel like we have exhausted all other options at this point. Clearly if he gets enough food, he gains weight. Developmentally he's made some great strides in the last 2 weeks (pushing up more, nearly rolling from back to front, more language developments, more hand-eye coordination) that I attribute to proper nutrition as well.

But DAMN IT, I HATE THAT HE NEEDS IT. I dread the surgery. I hate that he needs to be knocked out again. I'm still traumatized from the 3 days it took him to wake up last time. And I hate that he'll be in pain. And he's going to have HOLE in his STOMACH.

Plus we've been down this road. I remember the constant leaking. The worry about catching it on his clothes and hurting him.

And there is the "freak factor." In the summer if he is shirtless, people will see it. I hope to get him in the pool in the summer time. And I hate that people will likely whisper and wonder. Every mom wants their child to be normal. And mine isn't.

Of course, then I feel guilty about that. It could be SO much worse. If the worst effect he has from being born 14 weeks early weighing less than a pound and a half is a plug in his side, we are truly, truly blessed.

But I still hate it.

So there's where we're at. Getting by and preparing for the future. But we're doing okay.

On a more normal note- the last few days I've been working on sleep training.

He goes to be quite easily. He has for a number of months, really. He gets drowsy, you wrap him up and lay him down and he's out. Even if he's not terribly drowsy, you lay him down, he watches his aquarium and eventually nods off w/o much fuss. But 20 minutes later it begins. He needs his paci and/or some patting. He nods off again. 15 minutes later we do it again. This lasts anywhere from a half hour to (more frequently) 90 minutes. It's exhausting.

Since he's nearly 6 months adjusted now, it's high time he learn to self soothe a bit. So I'm giving it a shot. Last night I let him cry it out for 5 minutes, then soothed, then cried for 10 minutes, then soothed again and he was out.

Tonight was a little odd because he got really sleepy much earlier than usual, but too close to bedtime to really let him nap.

He fell asleep almost immediately and 20 minutes later he fussed just the tiniest bit. I sat next his bassinet and shushed him for a minute and he settled right down. He didn't stir again for an hour when it was time to eat. He ate and cried for about a minute or so- but I think I attribute that to objecting to food in his tummy more than anything. I patted him just for a minute, told him goodnight and he settled down. That was almost an hour ago, so I think he's out.

That's pretty painless so I'm sure we have harder days coming. But hopefully it goes well. Once he's out, he's a GREAT sleeper. He gets up to eat and goes straight back to sleep. Often he barely even opens his eyes to eat. On the rare occasion he wakes up really perky, he usually just stays up long enough to eat and I can still lay him back in bed and he'll talk to himself until he nods back off. I'm really lucky in that regard. (Lord, I never thought I'd see those days after his first weeks at home.) And he typically sleeps at least 10 hours at night, sometimes approaching 12.

He still naps like crap, but I'm tackling one thing at a time.

That's the state of our house for now. promised, I'll answer some questions:

Fertilized asks:
If you were a tv character, Is there already a tv character you would want to be, or would you have to write a script for your ideal tv character.

My favorite TV character was Veronica Mars. I LOVED that show. She was a strong, smart girl being raised by a single dad after he mom took off. I saw one episode before I called my dad and insisted he watch it. He was instantly hooked as well. i identified a lot with the character, so if I were to pick one, it would be her.

Anonymous wrote:
how do you deal with the fact that your husband seems to do nothing but aggravate your frustration? Seriously, he sounds like he is at his breaking point and needs a kick in the ARSE. Want me to do the deed?
I admit this one made me laugh.
As for how I deal with it? I generally go with passive aggression.
In all honesty, David has improved greatly in the last few weeks. He still slips on occasion, but he has gotten much better.
I think we hit a crossroads a few weeks ago when we had a serious discussion in which he admitted that he feels a bit like a 3rd wheel when it comes to Robbie and me. He said it in an almost accusatory way. As though I made him feel unneeded and unwanted. I asked him to tell me HOW I make him feel that way.
After a lot of hemming and hawwing, he finally conceded that I don't. He just feels that way on his own.
From there we discussed things more calmly and I offered a few suggestions of things he could be doing to be part of Robbie's life.
And it's made a difference.
It also helps, I think, that Robbie is more and more interactive. David still seems genuinely surprised when Robbie smiles at him. (Which he does every time he sees him. He ADORES his daddy.)
As for how we got through the roughest patches- A combo of perseverance and laziness. I knew I'd never give up easily on my marriage. And most days I was just too tired to fight about it. And eventually things started to improve.
Of course sometimes I still want to strangle him. We are married, after all.
But just last night David actually got up and took a middle of the night feeding. I won't say it went smoothly. I was up the entire time as well, but at least he offered and followed through.
And I'll keep you in mind the next time he needs a good ass kicking. Thanks for the offer.

Tracy asked:
When you finally get out of your cold and flu season isolation, what is the first place either special or mundane that you want to go with Robbie?

The zoo. St. Louis has a great zoo. And it's free! And it's one of my favorite places on Earth. I can't wait to take him! I hope he loves animals as much as I do.

Adriane asked:
What book would you be reading right now if you had the time?

Well, I had an answer to this because I've been working on one for a few weeks but I actually finished it the other night. (I gave up sleep to read a while. I ALMOST regretted it in the morning, but it was so nice to do something for myself for once that I decided it was worth it.) I was reading "Fearless Fourteen" by Janet Evanovich. I LOVE mysteries. If they're mixed with humor, even better.
As for what my next choice would be- I'm not really sure. I don't have anything lined up just yet. I tend to get hooked on series because when I find a character I like, I want more-more-more. I'm open to suggestions!

OSB asked:
Does time really help like everyone keeps saying? Has having Robbie helped ease that pain? Do you think that you will do something special on birthdates/miscarriage dates? Any other advice for dealing with the loss?
I considered emailing you directly this week but decided I wanted to answer this publically.

Does time help? Yes. It does. And sometimes it hurts more than others.

Does having Robbie help? Yes, it does. For a couple of reasons, really. The biggest being that I'm just so busy caring for him that I don't have time to be sad too often for too long.

Secondly because I know that had either of my first babies survived, the chance that Robbie would here is very, very slim. And I can't imagine my life without him. I would never say that my losses were meant to be but simply that the sorrows and sadness were not in vain.

As for doing things on loss dates, I haven't done anything tangible. I do think of them quite frequently. And when I want them with me, I wear my rememberance necklace.

The last time I wore it was to my baby shower back in September. And yes, I was sad. At the end of my shower, I mentioned to a friend that I was wearing it and I cried. I do miss them. And nothing will ever stop that pain.

One of Robbie's NICU friend's dad told me about his family. His mom had 15 children and 6 miscarriages. One of her children had down's syndrome and lived only a few months.

He said he asked his mom one time how she'd survived so much sadness. Her answer was that every child is a gift from God. Our job as parents is to love them while we have them. Maybe that would be a few weeks or maybe it would be many years, but we had to love them while we could.

Those words have resonated with me so strongly. I spent almost my entire pregnancy with Robbie trying not to connect to him. I was so afraid to love him because I was afraid I wouldn't survive losing another.

When I was admitted to the hospital and was facing the very real possibility of doing just that, all I could think was that I had wasted so much time NOT enjoying him. I was suddenly terrified he'd die and never feel loved.

I spent those last days listening to lullabyes and singing to him because I was afraid he would die and not know that I had, indeed, loved him. That morning before he was delivered, the tech who came to take my presurgical lab work commented on the song that I had playing over and over (For Baby by Peter Paul and Mary)and I just sang and cried and cried and sang.

Later, I sang that song to him in the NICU probably a thousand times. When I couldn't hold or even touch him, I sang so he'd hear my voice. So he'd feel loved.

It was all I could do to fulfill my job- to love him.

That's all I can say for how to cope. Know that you loved your baby while you could. And that's all God asked of you. I'm so incredibly sorry for your loss. I wish I had something more comforting or profound to offer.



O.S.B. said...

I don’t even know where to begin. Thank you so much for your words of wisdom, of hope and love. You truly are an amazing woman and mother. Thank you so much for answering my questions with so much heart and openness, while I read with tears in my eyes I can honestly say my heart feels lighter for it. So thank you for that.

You and Robbie are in my prayers each and every day. I pray that soon you will find yourself on the other side of this mountain you face. Thanks again for your support.

Fertilized said...

i loved Veronica Mars. i own the box set! I discovered the series late and had to catch up.

You ARE am amazing and strong woman. I trully loved your answer about time healing. Excellently written.

Sending your family prayers

ivory and jamie said...

You know what you need for the summer? One of those rash guard bathing suit tops, they look kind of like a wet suit top and they keep the sun off their fair skin... bingo, G tube is covered (if he has one).
We're still praying for you guys. Good luck with the sleeping, that's always so fun :(

Tracy said...


::going to go hug on Andrew:::

Adriane said...

I so hope your appointment goes well today. I will be thinking about you and Robbie and praying the G tube, if necessary, works its magic quickly and painlessly. I understand wanting your baby to be normal. My girls are in helmets and it just kills me.

Your last q&a made me well up with tears. There are so many days I am so damn tired and have the hardest time with the girls. But, my job is just to love them. That's it. Love. Simple concept, brilliantly put. Lightbulb on.

Alyse said...

My brother was born with severely clubbed feet. He had a series of operations on them starting at just a week or so old. His feet, while they "work," are scarred up pretty bad, and his feet don't look 100% normal. Still, he has never had a problem with kids making fun of his scars.

I know it's not the same, but I am just trying to say that I don't think kids are as cruel as you may fear. Plus, you don't need an additional thing to worry about.

Osh said...

I wasted so many years wanting Evan to be normal, don't be like me. Please. You will regret it.