Wednesday, February 23, 2011

Interesting

A coworker of mine was chatting, today, about his girlfriend. She's going to be 30 next week and I guess it just hit her what a milestone it is. She woke up this morning feeling kind of down.

My coworker said he told her he understood that she probably wasn't where she expected to be at 30 - she thought she'd be married and pregnant by now. I thought that was very astute of him to pick up on. I was a little impressed.

Then he finished, "I told her we could fix both of those before she turns 30." When one of the women in the office looked at him funny, he insisted "We could fix them both. We've got 6 days!"

That must be an interesting world to live in.

--Trish

Thursday, February 17, 2011

Let's march

I don't know if I can say again how much the March of Dimes has meant to my family. There are only so many ways to say "They helped save our son's life." A few days after Robbie was born we were down visiting him in the NICU. I was still admitted to the hospital myself, but this was the first day I was able to walk (albeit slowly) down to see him. This particular day stands out very clearly in my mind. The NICU almost seemed to have a special glow that day. As we left the NICU to go back to my room, I remarked to David that I felt almost like I could see angel's wings on the backs of the nurses in the unit that day. They were literally doing God's work.

That is how I feel about the March of Dimes still. They are doing God's work. The research that they help fund has lead to breakthrough after breakthrough which has improved survival rates of babies born as early as Robbie, along with countless other accomplishments dating back to their original mission to cure polio.

That day in the NICU, I told David that if we hit the lottery, we were designating a large portion of money to the angels doing God's work. Unfortunately those winning lotto numbers are still eluding us. The next best thing I can think to do is to raise money. I'm not a public figure. We're not celebrities. We're just a regular family hoping to make a difference. The best way we know how to do that is to march. We are going to march for babies.

Team Remarkable Robbie is now seeking walkers and donors. Please join us as we seek to do God's work. Our march is April 30 in Forest Park, St. Louis, MO. We hope to see you there!



http://www.marchforbabies.com/remarkablerobbie




-Trish

Thursday, February 10, 2011

Tests

I had an interaction today that I'm still sort of processing through. I had to go to my PCP for an exam and tests. I've been fighting a stubborn UTI. I really like the nurse practitioner in the office, but she asked a question in a way that I get quite frequently. I'm never quite sure what to make of it.

Inevitably, someone asks a question which leads to me needing to tell them about Robbie's early birth. Today it was because of a discussion about my kidneys, obviously because of the possible implications of my bladder issues. She asks how early he was.

Me: 26 weeks
NP: Oh, that's early!
Me: Yes, quite.
NP: Was he in the hospital a long time?
Me: Yes, 96 days in the NICU, and a few stays beyond that.
NP: But he's good now?


And this is where I stumble a bit. This interaction happens probably at least monthly with one person or another. They never seem to ask "how is he doing now?" It's always "But he's good now?" or "But all is well now?" As though the only acceptable answer is yes. You would think that by now I'd know how to answer, but I don't.

I usually stutter "Yes! Well,  I mean, he's getting there, but he's awesome.. yes.." They usually want to know why I qualify it, so I explain that he's had a lot of issues and we still struggle with feeding. They inevitably shrug dismissively or say something about kids not eating. I say yes, we hope to get rid of his G-tube soon. Perhaps I shouldn't add this, but I don't appreciate the dismissive tone. They look at me pointedly, realizing that when I say "issues" I mean issues.

And then they change the subject. Whether that is because the conversation has produced the information they sought or because the notion of issues made them uncomfortable is never quite clear.

I just don't quite understand why the question seems to always be seeking reassurance that all is well. I mean, I love our life and think Robbie's freaking awesome. But I also recognize that a tube-dependent 2.5 year old isn't exactly typical. I realize that a lot of people, even medical professionals, don't realize the impact of prematurity at the level we've experienced it. But it honestly doesn't matter. Sometimes kids struggle. It's not ideal, but it's reality. Whether it is prematurity, or a genetic condition, a trauma of some sort, a developmental disorder or something else, not every kid is "all well." And when the question is asked that way, I feel like it sets me up to disappoint them somehow. It makes me uncomfortable.

I can't even really qualify why that is. I mean, sometimes I'm disappointed. I wish Robbie was tube-free. I wish Robbie didn't have to have therapy 2 to 3 times a week. I wish he would outgrow this blasted corn allergy. I wish he was as physically adept as his peers. Sometimes when I'm directly confronted with one of his peers who is clearly light-years ahead of him in speech or another area, I am sad. I'm never disappointed in him, but the situation that has lead to this still gets me down occasionally.

Surely other people should be entitled to feel that, too. Logically, I know people want to hear the happy endings. I feel like we're living one. Or, maybe more of a happy journey, but I know it's a new kind of happy that most people have trouble imagining. But every time, I find myself leaving the interaction with a mental head scratch. Why do they ask this question? And did I answer it correctly? Did we pass our tests?

Trish

Friday, February 4, 2011

The plan is set

Just had my phone consult with Dr. K. It took all of about 3 minutes, I think. It's official- 25mg Clomid/IUI.
I asked about the left side pain and she wasn't concerned. Basically as long as it stopped  and I don't currently have pain, it's not a big deal. She did say my tubes were a little elevated, but not enough that she thought it would be a problem. But that in either case, she only wanted to do 3 rounds of Clomid/IUI and if I wasn't pregnant by then, she wanted to go to IVF, and that would bypass either issue.

So, we're good to go. Call when my period starts. Let the hot flashes begin.

--Trish

Tuesday, February 1, 2011

HSG: The Event

I don't know what is wrong with me lately. My blog is so neglected. I THINK about writing every day, even sometimes thinking "oh, I should write that thought down" so that I write about it later. But then I don't. Maybe I need to do a 7 day challenge or something (write something every day for 7 days) to get the juices flowing. In any case, enough blogging about blogging.

The HSG

It was okay. It hurt, but I survived. I'd heard anything from "didn't feel a thing" to "I thought I was going to die" and even a few "I passed out"s. I didn't know quite what to expect.

I got up early, took Robbie to school, took my 800mg of Motrin as instructed and headed to the hospital. And then I waited. And waited. At an hour past my appointed time, I put my coat on the arm of the chair and nodded off. Heaven knows what the woman who came to get me thought, but I was tired.

Once in the room, a competent sounding radiology fellow came to tell me about the procedure. I mostly just nodded and tried not to chuckle at his pronunciation of vagina. "vag-ih-nuh." I should have counted how many times he said it. The whole thing struck me as absolutely comical. Of course, then he confirmed that I'd had an abortion. Pardon?

Now don't get me wrong, I know that a miscarriage is a spontaneous abortion, and I have never felt gutted by that term the way that a lot of people do. I understand why many miscarriage survivors do, it just has never affected me that way. I honestly didn't know if he had his facts wrong, or that's what he meant. I clarified that I've had 2 miscarriages. "Oh..uh.. mis....carriages, yes.." and then started talking about how they would look for scarring from my abortions. I can't say I appreciated it, technically correct or not. But the real fun was yet to begin.

They get me up on the table. I was expecting stirrups. Stirrups and I are BFFs, you know. But no. Just a table. So I had to bring my feet together and tilt my knees outward. I had knee surgery a few years ago and this was not the most comfortable position (never mind the whole naked vagihnuh thing.) but again, just go with it. The regular radiologist and the tech were both relaxed and sympathetic. But then the fellow came with the speculum. And by speculum, I mean the jaws of life that they had clearly borrowed from the local fire department.

Jimminy Christmas that hurt! As someone who has been through more examinations, probings & surgeries of my lady bits than I care to count, I can't say I had dreaded that part. Sure, it's never awesome, but this was definitely unexpected. I'm now convinced that my radiology fellow had never actually seen a vagihnuh before, either professionally or otherwise. The regular radiologist kept saying "no no, not like that." "no, not that wide." "here, move it this way." This is not a conversation that one wants to hear near her crotch. I focused on breathing through the pain while I was sterilized. Then came the expected cramp when the catheter was inserted. I've had enough IUIs that I was prepared for that.

They injected the dye- more cramps. Nothing I couldn't handle. Breathe in, breathe out. They asked me to roll to my right side to get a look at the tube. And that is when the real fun began. My LEFT side felt like it was going to revolt. I stifled a groan. Then roll to my left side. My left side was on fire! I couldn't stifled the groan that time. Now I just focused on not crying. And then it was over.

As soon as all their equipment was gone, the cramping began to ease. The radiologist said "everything looks good." but then stopped and told me not to leave until he'd viewed the films. I cleaned myself up and waited. He came out and said that everything looked "pretty good" but that he'd look closer at the films to check for scarring. "Pretty good," he said again. I didn't really know if pretty good mean actually good or okay-but-not-great. I just knew I was ready to go.

Dr. K left a voicemail that afternoon and clarified. "Completely normal." Both tubes were fine and my "cavity" was as well. I was to set up a phone consult and we'd go from there. That consult is on Friday. I assume we'll officially declare it 25mg Clomid & IUI and call it a day. I do intend to ask about the dramatic pain on my left side.

That left ovary has been cranky since I started fertility treatments in 2006. Or at least, I thought it was my ovary which was cranky. It hurts when they palpate it at my year exam. At one point, I stopped having periods right around the time I weaned from pumping for Robbie and my OB and I both thought perhaps I had a cyst. An ultrasound showed a small one, and a round of provera fixed it right up. But it still aches almost every month around ovulation time. But maybe it's something else? Maybe it's my tube? Maybe I'm just a paranoid neurotic hypochondriac, I don't know.

Either way, everything appears to be open and intact, so that is good news. Testing phase complete. Next step- treatments. Someone ready the Xanax.

--Trish