Littlemanbig: A Micropreemie Adventure

WW friendly greek yogurt peanutbutter waffles.

2012-02-14T15:43:00.001-08:00

Let me know if you want the recipe :-)

Thank you, Pinterest.

2012-02-12T14:36:00.001-08:00

Feeding Tube Awareness Week: Attitudes

2012-02-08T07:17:00.000-08:00

It's feeding tube awareness week, and I'm a little slow on the uptake. First of all, I have an in-depth blog about whether or not to get a G-tube for your child here.

As far as today's topic on feeding tube awareness, the question is How has your attitude, family's attitude/perception changed towards a feeding tube.

Phew. That's a hard one. Because at no point in time did I ever struggle getting a feeding tube for Emery. Emery had a 225-day NICU stay with serious trauma to his face on a daily basis. Getting a tube got us home a month faster and never had to put him through that pain at home. And the people I know without a tube who really struggled have a different attitude toward eating than I do. Their whole lives revolve around getting their kids to eat. Ours doesn't.

What's changed with my attitude honestly is that I don't judge people. When I see a kid out in public acting up, fighting his/her mother about eating I have an enormous amount of sympathy. It also has been very stress relieving having the tube with regards to eating. If Emery doesn't take enough calories by mouth, I tube him. In this entire journey, the only thing I can say about our feeding tube is a positive one. Emery's behaviors were already a struggle. We would have ended up with a tube anyway. I think Emery's sensory issues are severe enough (and with eating they are - he gags and retches at times just looking at food) that that is what has caused my perception to change. Poorly behaved children are not a reflection on their parents. This his enlightened me to an entirely new world, a world where I don't have the answers, a world where children have special needs, a world where my carbon footprint is significantly higher than the rest (hello plastic for the feeding tube.) And my attitude, if anything, is one of forgiveness to myself for the hard decisions I had to make for Emery and to others who judge. They just can't see reality.

I've spent countless hours talking to hundreds of other moms across the country (Thank you Preemie Blog Moms!) about feeding tips, vomit control, sensory processing disorder, autism, microprematurity etc. One of the biggest struggles I had was that I was doing everything the doctors were telling me and Emery was still struggling. I fortunately had rather honest physicians who told me that I could try all of the suggestions I was getting from other moms but I probably wouldn't see miraculous results. But I was fortunate that they let me try. This is my biggest attitude change - that a doctor's opinion is not the be all/end all. Don't get me wrong. I love all of Emery's physicians and have nothing but positive things to say about them. Every single one of them has allowed me to be part of Emery's medical team. The thing is - no one will advocate for your child like you will - so you have to stand up and ask questions, do research, and TALK TO OTHER MOMS - a LOT of other moms.

Mostly, though, it's allowed Emery to be normal. I can tube him and let him run and play with other kids and meal time can be an enjoyable experience without the stress of getting calories. A lot of my family were nervous caring for his tube - but I just taught people how to do it and for the most part everyone is fine save for a few of the squeamish teenaged girls. I find the change in me because of the tube has been a blessing!

Also, send this video to everyone you know - we'd love to have a tube-fed child on Sesame Street. And yes our sweet Emmers is in there :)

New Hair

2012-01-31T10:14:00.001-08:00

For those of you who struggle with chronic stuffiness with your kiddo, we found pediatric Breathe Right strips and they seem to work well. I have to use adhesive remover to get it off, but Emery actually likes them.

So it goes.

2012-01-27T06:35:00.000-08:00

If you haven't heard, or perhaps you never read, Celia, passed away not too long ago. I'd read her blog for close to a year, her mother being a lyrical and poetic writer - Celia being nothing short of beautiful, it was hard not to follow along.

I'm sensitive to these situations. It's one of the things that no longer escapes me having been through what we've been through with Emery. And maybe I'm a little more sensitive as Emery was being monitored for a few years for PH. I didn't mention it much here mostly because it was only something we talked about, watched, looked for and then eventually ruled out. Our lives during that time were not much different that a cancer patient in remission. You go about living your life for about 3 months, call the doctor if there are any strange infections, rashes or pains, go in for testing and the few weeks before testing your lives turn into turmoil as you anticipate that that appointment could be status quo or something more ominous. And you try to live your lives normally for the few weeks until that appointment. You do try. Then, the appointment comes and goes and you forget about it for another 2 or 3 months until it all starts again.

But these families do exist. Pediatric hospice needs do exist. Children die. Babies die. It's a hard thing to talk about and no one really wants to talk about it. To this day whenever I put on my activist hat regarding preeclampsia, eyes glaze over and yawns stretch. No one wants to hear it.

But Celia's mom asked (brilliant honestly) that those who read her blog go about the universe paying kindness forward, and you know what I'm talking about - random acts of kindness to strangers. So I'm just passing it on here, to keep the ripple going. Imagine a world where we spent our time fulfilling a tiny need of a stranger and have it magnify, rather than inwardly focusing on ourselves. Today I'm going to extend the ripple.

Just playing with editing software.

2012-01-24T08:54:00.000-08:00

I just made a collage with Picnik (screw you for shutting down!) and then played with HDR. I'm really liking HDR photography.

Rebel fun and practicing bouncing flash.

2012-01-24T08:51:00.000-08:00

Actually, this is just the half way mark for our downstairs bathroom. Erik put in a mosaic tree with some broken Mexican tile we had.

You can imagine my surprise when I got my Rebel that having built-in flash would create sucky pictures! A little time online let me know I was going to have to bounce the flash if I wanted better pictures. Right now I'm just practicing with paper and foil. I may or may not buy a puffer or mirror attachment.

Bounced flash..

Built-in flash

Bounced flash

To much bounce, but better lighting all around.

For those of you not on facebook

2012-01-20T14:52:00.001-08:00

More photo dump.

2012-01-19T17:05:00.000-08:00

Frank after his surgery. We made Emery promise to be nice to him.

So much for that.

Our first snow fall. It was nearly 50 degrees every day up until the middle of January. Unheard of in the midwest.

Yes, that's a bud on our lilac bush.

He said he wanted a happy snowman haha.

The purpose of this is to simply show you my walls are no longer dreary white with dirt.

And I love how it mixes with our wine-colored entryway.

Erik did a tile mosaic in our downstairs bathroom.

More photo dump, in which I have nothing creative to post.

2012-01-19T08:44:00.000-08:00

I'm struggling with the whole weight loss thing. I went to WW on November 22 and then didn't return until January.. eating myself silly through the holidays but continuing to exercise. I didn't even bother tracking. When I went back in January I was thrilled to see that I only gained 1 pound! This is crazy!!! Anyway, now, I'm not losing any. So, even though I didn't lose any ground over the holidays, I'm not gaining any either and it's frustrating. It makes me feel like a failure for some reason, and I'm just not happy with what I see in the mirror. Anyway, I'll regale you with pictures until I can come up with something more worthwhile to read.

Before pictures of our downstairs bathroom.

Week one after beng back on WW and 1 week of T-Tapp

2012-01-15T16:37:00.003-08:00

I'll rotate picture later.

IEP Goals being met :-)

2012-01-13T07:05:00.001-08:00

It's not pretty... it's beautiful! And he looks to be a lefty.

What I want for this year.

2012-01-08T18:37:00.000-08:00

While all of the New Year's Resolutions circulate bloggy land, I started thinking about this blog. I obviously don't blog much lately. The thing is, I like blogging. Nearly every day I have a blog post brewing accompanied by pictures, and then the seconds whittle away on the clock and I'm left with no time to put a post together. Right now Emery is in bed and Thfkae is at a meeting. All I want to do is go hit the couch and glory in my roughly 90 minutes all.to.myself.

But, I need to get some of this out of my head so that a year from now I can look back. (I always manage to ~~throw away~~ lose my resolutions by mid-March.

First, obviously I'm on a weight loss journey. I attend Weight Watchers and I exercise, but one of the things I love is T-Tapp. It's a wonderful exercise that makes you feel great. It's also very hard. But very worth it. The website speaks for itself, but I actually want to do this regularly this year - 3 to 4 times a week - and then look back in a year and see the results.

Next, I want to document this here on this blog. I realize it's not about Emery. All along I've tried to keep this blog focused on him and not make it a mommy blog, but I really need to use this space so I have documentation. I hope you don't object.

I'd love to say that I'm going to get through the Bible in a year. But when I resolve to do that it just makes it a chore, so this year I'm going to get through the New Testament, Proverbs and Psalms in a year. That way I can do it at my pace and not try to force feed Chronicles and Numbers down my throat.

I have one secret thing I plan on doing this year that I don't dare mention for a variety of reasons, but when I do finish it - you will all be the first to know complete with the entire story. It's a doozy!

My goal is to have Emery potty-trained completely by the summer. We've been potty training in earnest since October. It's gone sort of 'meh.' He can pee in the potty all day if I'm on him every 10 minutes. If I don't remind him to go, he'll just go in his pants and look at me and say "Why'd you do that?" (hello echolalia lol.) Anyway, poo poo on the potty is another story. He's holding right now which means when it comes out it's like a brick and this is ALWAYS in his pants. Oy Vey. This is probably why I'm losing my hair.

I want to play Mozart on the piano by the end of the year. This isn't such a ridiculous stretch. I know how to play the piano, albeit I haven't touched it in years and it's going to be a ridiculous chore just to get the thing tuned, but it's a bucket list thing and I enjoy playing so this will be more fun than a chore.

I want to finish, and by finish I mean carve and paint, a piece of furniture. Also, Erik just painted our living room and he's redoing our downstairs bathroom (though secretly I'm not thrilled about having 2 bathrooms - it's just another bathroom to clean.) But, before and afters will be up soon. I'd love to say that he got started and it went smoothly, but...

Our darn dog had to have bowel obstruction surgery and pretty much drained us financially. So frustrating. We had to have an honest chat about how much money we had, if we had to put him down it would cost x amount of dollars as opposed to saving him which cost x amount more, etc. etc. and blah blah. We figured if we put him down we'd just want another dog 6 months from now, so we were either spending the money that day or 6 months from now. Our dog is truly the greatest dog .... even people who don't like dogs love Frank. So, we chose to save him. This put an effective halt on all home projects herewith. Good times.

I intend to be caffeine free by the end of the year. I'm tired of this pesky habit creeping back up on me. I give it up EACH YEAR for lent and then dive right back in at the end of it. You might not think caffeine is such a big deal, but it is for me. It makes my skin crawl, I sleep poorly, it raises my blood pressure, and of all things it makes my psoriasis worse. I'm ready to be DONE!

That's all for now! Happy New Year to all of you, and may this year bring an abundance of blessings.

Oh, yeah. I was going to say that I wanted to make it through the year without major calamity but Frank screwed it up. We frequently tell him he's not worth it as we hug him :)

Happy Birthday Emery!

2012-01-05T07:42:00.000-08:00

Okay, so I'm a bit late. Emery, you turned 5 this year! I can hardly believe the time has gone by. Yesterday, you were a tiny baby barely clinging to life. The holidays were nonexistent that year, and this year you are full of life and so, so funny. Emery asked for an airplane cake for his birthday. Like, pretty much every day. Erik spent, literally, about 6 hours putting this thing together, and feeling freakishly proud that he could provide his son with a gift that he specifically asked for (especially in light of the fact that Emery still has huge issues with comprehension and communication.)

In fact, here you can see his utter and sheer delight at receiving the one and only thing he asked for, for his birthday.

Photo Dump

2012-01-01T19:10:00.000-08:00

I got a Canon Rebel DSLR for Christmas. I'll let the photos speak for themselves, lol. Needless to say, no one is safe around me anymore.

Long Time, No Post

2011-11-29T08:49:00.001-08:00

I've debated on what to post for so long, I just keep putting it off. We enjoyed a positive glorious fall around here that extended well into Thanksgiving at 60+ degrees and sun. Thfkae, Emery and I ended up going on a long bike ride that day. Crazy! First, some gratuitous photos.

Now, some fill in. Emery has been doing pretty great. We're working on potty training. I took his underwear to a seamstress and had Velcro put in the sides because it's really hard to take poopy underwear off, especially with Emery who tends to fight even with the simplest of tasks.

Speaking of Emery, he's been on some sort of crazy developmental explosion. Our IEP is coming up in December, and Emery is yet again getting a new teacher in January even. Normally I would be bothered by this, but Thfkae and I have to consider putting him in a typical kindergarten classroom with an aid, so much has his development increased. Socially, obviously, he is still very much behind. Gosh, there is so much to post about all of this. First, Emery physically is doing great. He saw nephrology in the outreach clinic here locally and he had managed to grow 2 inches and gain 3 pounds after a year of not growing at all. We'd already had an appointment scheduled with endocrinology so we went and she was happy with his growth, did a skeletal survey and deemed him appropriate for age and wanted to see us in a year. We've also been really lazy about the G-tube. Emery is eating and drinking as best he can. It's not great - but apparently it's good enough for growth. Each of these things deserves it's own post. I'm so sorry I've not been blogging. Do you want to know the main reason? I have a problem with bloggers as of late. Khourt had a great post about bloggers only being in it for the money and about blogging for ourselves. Also, oh how do I say this? The Internet is a little bigger than it was just 5 years ago when Emery was born. Back then, there were a handful of micropreemie mommy blogs and we were all in a network together. Now, there are tons of micropreemie blogs, they all want to be the biggest blog out there, they all have or want book deals (note, every person who keeps a blog about a sick child has been told to write a book - true story) and they all try to market themselves as being the one-stop shop for info. The only reason I've kept this blog is to share our story, because other mothers of micros have contacted me or said our story gave them hope. We all used to get in big debates at TPE, and it was always a topic of conversation how bloggers would sort of fall by the wayside once their kids hit a certain age. Understandably so. I can't sit around a type anymore. My kid is ACTIVE. And no longer tethered by oxygen tubes. I now understand her frustration at us newbies lol. But I'm going to keep the blog for what it is - just to offer some parents some hope when they don't know if their kids will live or die, and not because it needs to be the biggest, bestest out there, and not because I want to make money off of it. I actually stop reading bloggers once they monetize. I feel that once certain bloggers go by the way of making money on their blog they lose their integrity. Very few people can remain true to their voice and monetize. I've seen it only a handful of times. And, if you have your settings set so that I have to click on your blog rather than have it in my reader, I stop reading your blog.

Honestly, this blog a few years ago starting getting big for a while. I was getting thousands of page views a day. Google analytics actually estimates my blog as worth $100,000 .... (please tell me how I can sell it then lol.) When it started getting really popular was about the time my mom died. That might have been why I had the extra page views, coupled with the time that one of our blogging moms was arrested for putting feces in her child's central line - I'm sure most people were clicking to see if we were going to say anything about it. Anyway, that's the time I chose to take a stage left. The best way to decrease blog traffic is to stop blogging. And, my mom just died. I didn't want to blog really. Plus, I just got tired of reading blogs that were about money.

So I promise to stick around and share our story. I promise to be as true and honest about our story as much as I can on this strange road of the Internet where I really do need to give my family privacy - which seems almost impossible on a public blog. But I'm here because someone needs to hear, especially in that dark night when they don't know if their baby will live. I'm still here. And I pray that your baby will live. Because I know how hard it is.

I'm a blogger. This is just my blog, my opinions. It is not the end-all, be-all of the micropreemie world, and micropreemie blogs are a dime a dozen these days. I miss the days when we were in it to connect with each other because we were so desperate and alone that we needed each other to lean on, instead of now when people just want to be the popular kid in high school.

I'm open for a bit

2011-10-26T16:59:00.001-07:00

I've got some things that I want to share in the next few days that might be of benefit to some folks searching, so I'm opening it back up :) I think I've deterred negative traffic away for the time being.

Sorry for the absence.

2011-10-19T20:24:00.000-07:00

I have no idea how much blogging I'll be doing, but I do have to share a little funny with you.

Erik and I have often 'talked over' Emery. Because he understands (or understood) very little, we've always just carried on all conversations around him. Lately, he's been getting sensitive to it though.

A few weeks ago I posted a picture of Emery in my bra on facebook. He sees me get dressed every day and randomly tried one on, and Erik and I laughed and laughed.

So the other night Erik and I were having a discussion which wasn't a fight but we were not seeing eye to eye at all, of course all of this was around Emery. Within a minute or so Emery came downstairs from the bedroom wearing my bra. He was trying to make us laugh! He wanted us to stop 'arguing.' He's so cute and intuitive now. I certainly never expected him to be aware of these things.

Yesterday morning we were lying in bed (he climbs into bed with me every morning... actually he gets in bed and grabs my phone and says "Want Angwy Bewd?") Anyway, I got up and got dressed and he saw my bra and said "Is that Mommy's bra? Can Emmy have Mommy's bra?" I explained no, that he he couldn't have it because only people with breasts needed to wear bras. He responded by saying "Can Emmy have breasts?"

He is too cute!

Private

2011-09-22T14:22:00.000-07:00

I've toyed with this for a long time. I have to go private. Leave me a message in the comments with your email if you wish to continue to follow us and I will add you.

Preeclampsia Study Updated!

2011-09-09T17:44:00.001-07:00

This is a nationwide study, anyone can participate...ETA I have hyperlinked contacts in order to avoid spamming! Feel free to contact by clicking on links.

Dear Preeclampsia Foundation Member,

We are conducting research at the University of Washington School of Medicine to better understand why preeclampsia occurs. A woman's immune system, and the way it interacts with her baby's immune system, may contribute to the disease. As you may know, preeclampsia does tend to run in families, and for these reasons, we are studying genes related to the immune system in families (women, their children, and their own mothers) affected by preeclampsia. To try to understand this better, we are asking women who have themselves experienced preeclampsia, currently pregnant or not, to participate in our study.

If you choose to participate, you will be asked to provide cheek swab samples and to answer a brief questionnaire about your pregnancy history. Participants will be mailed a consent form, a cheek swab kit, a questionnaire, and a prepaid return envelope for return of the forms and the cheek swab samples.

We would like to offer your mother and children a chance to participate in the study as well. Their participation would involve providing cheek swab samples after completing appropriate consent or assent forms. If your children are willing to participate, we will send extra cheek swab samples and age-appropriate assent forms to you to collect samples from your children. If your mother is interested in participating, please contact us directly or ask her to contact us. We can send her a kit in the mail containing study information, consent forms, a cheek swab kit, and a prepaid return envelope.

For more information about this study and to participate, please contact us by phone at (206) 221-2792 or by emailing Evangelyn

Thank you very much for your consideration. It's only through the contributions from volunteers that we are able to progress toward a better understanding of preeclampsia and other complications of pregnancy and hopefully develop optimal treatment.

Sincerely,

Evangelyn Nkwopara
Study Coordinator

Hilary S. Gammill, MD
Principal Investigator

*Please note we cannot guarantee the confidentiality of email correspondence.

For More Information, Please contact:

Evangelyn Nkwopara

Study Coordinator

206-221-2792

For More Information about the Study Recruitment Program, please contact:

Laney Poye

Program Coordinator

laney.poye@preeclampsia.org

Visit: http://www.preeclampsia.org/research/learn-more

About Preeclampsia

Preeclampsia is a serious - and rather common - complication of pregnancy, dangerous to both the mother and her unborn baby. Knowing the warning signs can lead to more timely diagnosis and better outcomes. Learn more about why awareness is so important, and if you're pregnant and need information or support, join the Preeclampsia Foundation's community. The Preeclampsia
Foundation's mission is to provide patient support and education, raise public awareness, catalyze research and improve health care practices. We envision a world where preeclampsia no longer threatens the lives of mothers and babies. For more information,please visit www.preeclampsia.org.

Vegan Chili

2011-09-06T20:09:00.001-07:00

It's what's for dinner!

Published with Blogger-droid v1.7.4

Guess what I did today?

2011-08-26T11:23:00.001-07:00

It wasn't fast, it wasn't long and it certainly wasn't pretty.... but I did it, 16 days post major surgery.

Published with Blogger-droid v1.7.4

Processing. Yep, it's long.

2011-08-26T08:14:00.000-07:00

What many of you don't know* is that Thfkae ** and I haven't been on any type of birth control for years. A long time ago, probably when Emery was around two, we decided to 'try' to have another child, which means we decided to no longer prevent it. My OB was marginally supportive. He said "There isn't a single patient in my practice I'd be less happy to see pregnant than you." This doesn't generate warm, fuzzy feelings of joy and parenthood. Honestly, Thfkae and I were fearful anyway. Once, I thought I was pregnant and had a questionable pregnancy test and Thfkae got nervous and said "Right now? Emery's not even off of oxygen yet." I replied, "No, of course not now. We have at least 5 months." Gotta love prematurity.

Life moved on. Over the years I threw the pregnancy tests away. While we never really forgot about it, it no longer became our desire. We became foster parents. We got absolutely miserable when we had to the two last winter and Thfkae got really sick (again.) We started to think maybe it wasn't so bad not having another. Emery was in the height of issues and we often went to bed in tears of frustration. It just wouldn't be fair to bring another child into this. We calmly accepted if it was meant to happen, it would happen and left it at that. Eventually, we moved on. The desire wasn't necessarily gone. We were just content with our situation.

Over time we decided to try fostering again and had some great experiences. We no longer do long-term care, but crisis/respite. That means if the phone rings at 2 a.m. and someone needs a place to stay, they sometimes end up here in the middle of the night. Or, if a family needs a vacation or our agency is trying to get kiddos in the same home; i.e. siblings who've been placed in different homes at different times, they come here for a while. We had one baby here for a bit and he was so stinking cute and fun that briefly we painfully desired another child again, but the feeling passed. We came to accept that we were likely infertile. Secondary infertility happens.

Then this happened and we were left dumbstruck. We'd assumed that we couldn't even get pregnant. Early on, we decided under no circumstances would we pursue any fertility treatments. The risk for preeclampsia goes up with fertility treatments, and the thought of a hysterosalpingogram makes my skin crawl. Ever since the C-section, I've had pains in the abdomen, and severe muscular pain. No one could really answer why and my doctor just kept telling me he didn't feel any adhesions - but we thought it was possible that my tubes were blocked or whatever. These are the minor complications of C-section that people generally forget about, but once you've been a part of a somewhat uncommon medical tragedy you take all things into account. I didn't pursue any answers and just left it alone. Really, Thfkae and I were very comfortable with our situation, our life and loving on Emery that we never thought much about any of it. Sure, I'd get the familiar pang when yet another person told me they were pregnant. The problem with having a large group of acquaintances of childbearing age is eventually they're all gonna get knocked up. Infertility leaves you feeling alone. Pregnant bellies seem like a personal affront. But we had Emery and fostering and our jobs and friends and it just became part of life. I would experience a pang with pregnancy news and then joy for my friends.

Now, our situation has forced me to confront all of the feelings that neither one of us even knew were there. Now, we ask "why were we given this only to have it taken away?" Statistically the chances of me ever getting pregnant now are abysmal. I'm going to be 40 in a few months and I have one tube. So, it makes it harder to desire another child knowing my chances are smaller than ever. Before we were just accepting. Now we're left with lingering questions and desires that we never really knew were there. We were never even able to get excited about a positive pregnancy test because we knew something was seriously, seriously wrong immediately.

When we got to the hospital I was triaged immediately and taken to ultrasound within minutes of being checked in. In ultrasound Thfkae and I listened as the technician clicked away. When it was all over, the bleeding had stopped. I had a moment of brief hope. I had early bleeding with Emery and suspected ectopic. I ended up in the emergency room just like this and we were told all was well. Thfkae asked "Did you see anything?" She said "well, we'll let the doctor talk to you." Thfkae and I well understand ultrasound technician code speak. Having undergone something like 20 ultrasounds previously, each time everything was fine the tech would pipe up "Do you see the heart beat? Look at that little guy swimming around! Hey, there's the gestational sac. Yay, a fetal pole!" When they don't address your question or leave it up to the doctor, you know it's not good. Good news is relayed immediately. Bad news is left to the doctor.

The doctor came in shortly after and told us that I had an abdomen full of blood; however, there was a small mass in my adnexa. My HCG was 131. It wasn't consistent with a ruptured ectopic with the size of the mass or with the HCG. I said "So do you want to wait and see if it resolves?" He said "No, I really can't. You have way too much blood in your abdomen for it to be normal. That's why you're in so much pain. What I'd like to do is a laparoscopy. I'll be able to see what's going on. You might have a ruptured ovarian cyst with a viable pregnancy."

Thfkae and I clung to that. They moved me to the operating room bay and Thfkae stood with me holding hands. We all cracked jokes. I asked about the anesthesiologist and they said they called him the Indian Just.in Bie.ber. When I met him Thfkae and I laughed out loud. That was a perfect description.

I was moved into the OR and Thfkae said goodbye. I started to get nervous and the two OR nurses stood on either side of me and stroked my arms. The anesthesiologist looked down over my head from behind. I thought lamely that the OR table was very narrow - and realized it was because the doctors would want to be as close to me as possible. They were listening to Gree.n Day. It was surreal. They all calmly talked to me and told me they weren't going to let anything happen to me. One of them reassured me that this wasn't the end, I could have another baby. It happened to lots of women. I said "The doctor thought this might be viable?" They said nothing. They didn't need to. I could see the way they were looking at me. The anesthesiologist rubbed my shoulders and I drifted off.

Next thing I knew my bed was rolling. Thfkae and my friend were holding my hand. I immediately asked if it was viable and if I'd had adhesions. No and yes were the answers. Was the procedure able to be performed laparoscopically? No, it was another major open belly surgery. My tube was gone. Had the 'baby' moved about a centimeter down, it would have been in my uterus where it was supposed to be.

I kept my eyes closed, begged for Dilaudid and drifted in and out, not really processing the meaning of it all. There were adhesions that had caused me pain for years. Those were gone now. But so was my tube. They said I was too level-headed and asking too clear of questions coming out of anesthesia. I may have had pain medication, but my acute awareness never went away.

And as far as the belly full of the blood, my ectopic was unruptured. So why the belly full of blood? I saw my doctor last Friday and he explained that the blastocyst draws blood to build a placenta. It was feverishly drawing blood, but the blood was leaking out of my tube into my abdomen. Because it couldn't build a placenta it kept drawing more blood, only to lose it. It wasn't entirely common, but it does happen that way, and he said he was grateful it did happen that way rather than rupturing and creating a potentially fatal situation.

So where now? I don't know. I suppose in time we'll go back to normal just as we did before, but the sting of those who get pregnant and deliver with impunity is more acute. Now, I not only fear prematurity, but ectopic pregnancy again. What if I lose the other tube and the chance of getting pregnant is entirely removed? I don't think I could live with that. I don't think I could live with the hope being taken away.

* It always makes me giggle when I write things like that. I think a whopping 6 people read this blog with any regularity.

** For those of you who don't know, Erik hates all things Internet and said he didn't want any part of it, so I asked if I could refer to him as The Husband Formerly Known as Erik. He doesn't read here, so I don't suppose it matters either way, but we were joking when we were talking about it and it stuck.

Hiking, it was a hike.

2011-08-19T09:13:00.000-07:00

My friend and I decided to have a girls' day and headed to Wisconsin for a day trip. We had no itinerary. We had originally wanted to go hiking and canoeing in Galena, but were redirected after the major flooding. So, Wisconsin it was.

The Grotto

This is one of the coolest places - if you're from our corner of the Midwest, I highly recommend visiting.

For the record, I made her pose.

Zoo and hiking

2011-08-18T09:05:00.000-07:00

We took a trip to the zoo (on the hottest day of the year) with Emery's girlfriends.

I have to say, this might be my most favorite picture evar. You have to know Emery in person to understand it.

Yep, it hit me.

2011-08-17T08:49:00.000-07:00

So, yes, I'm bummed. As much as I expected I would be after I'd had time to process it. I thought I'd distract you (or me) with an update of our yard and garden. Here's what we had going on last year. The garden has tripled in size and Thfkae has added flowers left and right. I'll get some whole-yard pictures later.

How gross is this? Thfkae was lying in his hammock and noticed that our trees were covered in Cicadas, like this branch alone does not do justice to the sheer volume of bug carcases covering our trees.

For the record, this is lavender. Just couldn't get a good picture of it. The sole purpose of it was to brew in teas before bedtime and to put in herb sacs beneath our pillows - we haven't gotten there yet.

This is garden #2

The weather has been glorious. While I haven't been running, I have been walking every day. I managed to get 3-1/2 miles in yesterday. I'm not taking any pain pills anymore and I'm pretty much a badass, like the honey badger.

Odds and Ends

2011-08-10T07:42:00.000-07:00

I've been named the star pupil up here. Thfkae had told me that the more I'm up and around bugging the nurses, the more apt the doctor will be to send me home. Yesterday, as soon as my friend Mr. Foley said goodbye, I got up and started moving. It wasn't always pleasant. But I did it, repeatedly. I even made a point to do all of activities of daily living including showering by myself. They said I've been sufficiently active (and annoying) enough to probably get to go home. Hey, I aim to please.

What I hadn't filled you in on recently was the running. Running has been going pretty well, in spite of being stuck on a treadmill all summer - with Emery home I'm confined to gym time. I was having a lot of soreness and hip flexor pain and finally decided to just up my speed to running - it's much faster than jogging but much slower than a full out sprint. This seemed to solve everything, and while I brought me back down to running for only a minute at a time I was running 10 minutes out of 20 and burning about 200 calories in the process. This was a great workout.. and now I'm couched! The weather here is a beautiful 70 with no humidity and Emery is in school all day and I'm stuck recuperating. This is where I'm most frustrated. I've been on a weight loss journey for 7 months now. I'm down 28 pounds. I'm half-way to my goal and this happened.

As far as 'this' happening, I think I'll probably be depressed next week. This all came out of left field. We just weren't expecting it. Once I realize what happened (I'm a little slow on the uptake so I figure it will hit in about 4 or 5 days) I think I'll be more sad. I've had a rash of friends just have babies. Actually pretty much every.single.woman of childbearing age I know has given birth twice since I've had Emery. But just recently a few friends have announced pregnancies or had babies. It would have been fun to have our kids grow up together.

Emery has been an absolute peach. Thfkae brought him to visit me and he wanted to get up in bed with me. He kept saying 'wanna sleep?" Unfortunately he ended up jerking on my belly so that was that, and he was confined to running around the room. Thfkae says he's been extremely easy and I guess he's adjusting to the new school year and the new teacher very well with little problems. He has come so far.

Last week we also had another 'spare.' We got a call late in the evening for a crisis placement and ended up having her for 5 days rather than the requisite 48 hours. (Apparently once a child is out of the home on crisis placement, after 48 hours DCFS has to take protective custody and the kid has to go in front of a judge for placement) but this never happened. Long story - I'm a little angry at DCFS right now but think that it worked out for the best and am hoping she and her family were reunited. She's always welcome to come back anyway. Emery really liked her and of course she got to go to Gramma's and my sister's and thoroughly enjoyed both of those places lol.

Thanks for all of the support and messages. Physically and emotionally I'm in a much better place than I was after Emery was born. And just so you know, recovering from belly surgery is EASY AS PIE when you don't have preeclampsia to contend with. Who knew?

The Big Reveal

2011-08-09T08:55:00.000-07:00

Last night I was on my way to visit some old girlfriends, the college girls. It's been a while since we'd seen each other and just couldn't get a girls getaway. We decided to take our kiddos and meet up. I was excited!

I got on the road and about 15 minutes away from home started having belly pain. It got severe enough that I upchucked a little. Less than 45 minutes from home I pulled over at a gas station to maybe get some ibuprofen to help with the pain. I was having a hard time driving.

I eventually turned around and came home. Erik was home and took me to the ER. I'd called my doctor and left 3 messages and never heard anything from him, and then the storm of the century broke loose and I ended up at the other local hospital, not the one that I work for.

What I did know, nor had any clue whatsoever, was that I was about to be taken in for surgery, for the second time in 5 years, for life-threatening complications due to pregnancy.

I had a ruptured ectopic. I had posted on facebook that it was a ruptured ovarian cyst because at the time that's what all of us were hoping.

But it wasn't. We would have welcomed a pregnancy. Strangely, we aren't terribly sad right now. I only knew for about 3 hours I was pregnant so it all came and went before I could process it. Mostly, we're just grateful it was caught and taken care of quickly.

Cool dude

2011-08-03T11:27:00.001-07:00

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University daze

2011-08-01T06:44:00.001-07:00

We went up to the university last Thursday. Emery had to have a few scans done under anesthesia, one being a follow up renal ultrasound and the other being a nuclear medicine scan to determine how well his kidneys were functioning.

The entire day went as smoothly as things could possibly go. We were about 2 hours ahead of schedule the entire day. The IV went in like a dream. He was, for the most part, cooperative.

HE PEED IN A CUP!!!!! Do any of you understand how HUGE this? NO MORE URINE CATCH BAGS....

FOR-EV-AHR!!!!

The doc even came in to talk to us quickly rather than having us wait for an appointment. In fact, we were so far ahead of schedule (read - utter and complete freaks of nature that day) that the results weren't in. He said he'd call me if anything was worrisome.

It's now Monday and I haven't heard from him, and he emailed me today saying he'd send out the results tonight. I'll take that as no worries ;)

The scans were basically to make sure his kidney stones haven't moved and that the size disparity between his kidneys is an anomaly and not indicative of it no longer growing.

We did however, per usual, garner another specialist out of the deal. I do believe I should just expect another specialist with each visit we go to. Emery is being referred to endocrinology now. His lack of growth and the fact that he's falling off the charts in spite of being G-tube fed will find us in the office of endocrinology. The good news, it's not his kidneys' fault for lack of growth (this had been the assumption for the last year,) the bad news is that he should be growing but isn't (and again - my kiddo grew extremely well until he was taken off of oxygen.)

I'm not sure where we go from here. From a respiratory standpoint, he's stellar. His blood gases are beautiful, his respirations are slow and easy, his saturations stayed - on anesthesia - at 100 the entire time. His chest x-ray is expanded well and there is little scarring. I have the option of doing a bronchoscopy but will probably wait and see what endocrinology says. To be honest, I'm kinda tired of putting my kid through all of this.

Side note, the university has a new system called MyChart. I have to get the information, but once I do I can access all of Emery's medical records myself on the computer and not have to wait for the doctor to call. I love this!

What's the message?

2011-07-24T12:32:00.001-07:00

Today, at church the sermon was on "God winks," those little things that happen throughout the day that simply can't be coincidence, those little things that let you know God is talking to you.

Last weekend I served on a retreat and this weekend Thfkae is serving. People sign up to pray for the weekend and for everyone who attends so that someone is praying each hour of the 72 hours, based on Matthew 26:40 "Could you not pray with me for one hour?" I got ~~suckered into~~ volunteered for 1 a.m. to 2 a.m. Sunday morning.

Well, I was wide awake at 11:30 so I just started praying then. Of course, I fell asleep about about 12:51 a.m. I figured, to God time is not linear anyway.

I awoke to loud thunder and bright flashes of lightening around 3 a.m. As much as the rain is appreciated, I still didn't want to be awake. I was tired. I've been caring for Emery all weekend. Lightning crashed and I figured I may as well pray. I dozed in and out, that strange place between consciousness and hypnosis. Then, lightning struck and I swore it was in my backyard. In fact, never in my life have I experienced lightning so close. It's always just been something in the sky or off in the distance. I had a hard time falling asleep after that. I was nervous what I would do if something hapened and Thfkae wasn't here.

Today, I drove through the cemetary behind my house and less than 300 yards from my window this is what I saw.

Maybe God really did want me awake. :-)

The moral of the story? Never forget who's in charge!

okay, this is the picture with the last post.

2011-07-22T09:30:00.001-07:00

Weight Watchers Update

2011-07-22T09:22:00.001-07:00

I finally found a full length mirror, forgive the awkward position. I just got done working out and was trying to hold my shirt for a better view. I'm down 25 lbs!!!

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His girlfriend :-)

2011-07-19T21:28:00.001-07:00

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2011-07-14T14:40:00.001-07:00

Hello all! I'm going to be on a retreat this weekend, which is much much needed! It will be silent, and I will not be lurking. Three glorious days of being unplugged!

4th of July

2011-07-10T18:53:00.001-07:00

I'm sure Emery is saying 4th of July here..... yes, of course that's it.

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What's in your kitchen, that is if you're blending your kid's food.

2011-07-07T12:09:00.000-07:00

Well, first, I need to share my first love with you, which hubby and I affectionately call the M.O.A.B., pronounced MOW-AB, otherwise known as the Mother of All Blenders...The Vitamix!

If you are doing a complete blenderized diet, this is the way to go, at least for our family. Some people are partial to the Blendtec. I've never used one and therefore can't comment on it, but we have had a Vitamix for several years now.

We bought it when we were doing a complete vegan diet, otherwise known as Eat to Live. Nutritionally, this diet is the bomb diggity, but you're not going to get very far with it if you don't have a Vitamix. Not to say that it's impossible, only that you can only eat so many salads before you want to choke your dog.

We bought the Vitamix to make green smoothies. We had no idea that it could liquefy cement. Okay, maybe I'm exaggerating, but seriously, this sucker has power. My brother-in-law borrowed it to chop down a few trees. Again, exaggeration, I apologize. I wish the good folks at Vitamix were letting me give one away. It turns out, they're way more popular than anything my weenie blog could offer. Anyway, without going into long detail, this thing is the way to go if you're going to do large blends; i.e. you're done feeding your child formula created from corn syrup and cow's milk. When I do complete nutrition blends for Emery, they usually consist of spinach, brown rice or oats, coconut milk, avocado, olive oil, water, blueberries, or any type of berries, and liquid vitamins. And yes, I can put that in the Vitamix and blend it to a liquid consistency that will go through his G-tube. Believe me, this is AWESOME! It also means I control all of his ingredients. Honestly, he's far healthier when I go this route. The great thing about the Vitamix is when you leave it on, because of the high speeds, it will actually cook the food as well. Even at it's highest speeds, the temperature never gets so high that a raw foodie couldn't eat it, and when you liquefy all of these things you never lose the fiber and/or nutritional value of the foods like you would in a juicer. Vitamix = A+

Now, we don't always do full blends, especially now that Emery is eating and sometimes I need to puree his food to a consistency that he'll eat. The Vitamix will do this, but if you've used one you know how hard it is to dig the tiny amount needed for one meal out of a Vitamix. The only downfall of the Vitamix is just that - it's not best for small amounts, nor is it very portable. So, I tried this.

The Magic Bullet! I've made smoothies in it, and I just don't get the same quality of a smoothie that I get with a Vitamix, but that's okay. This thing will absolutely puree anything I need it to (including one slice of pizza - but you do have to add some water or extra pizza sauce) and is extremely convenient in terms of unscrewing the lid and removing the contents. It's very portable as well. We've taken it to other's houses and it's tiny enough to take to a restaurant (don't get me started on the fact that restaurants should be able to puree anything you ask for in the first place. Soup gets as boring as salads really.)

Anyway, if you're hurting for cash but want these things, there are a few options. Vitamix offers a discount for children with G-tubes. Granted, it's not much. Thfkae and I bought a refurbished Vitamix at the cost of $320 (yes, exorbitant for a blender, but we use that thing every day and it has by far paid for itself.) We chose the payment plan where we paid $100 up front and they even shipped it to us right away and then we paid the remaining cost of the blender split up over 3 monthly payments. It worked out very well for us. Plus, we actually broke the container, and it wasn't covered under the warranty (the base unit/motor is covered for 10 years) because we dropped it. They did however give us a discount on a new one and sent it with free shipping. The total cost of that was $30. Vitamix is a very great company.

The bullet? I found a used one off of eBay for a whopping $17 and then I paid shipping for $12 on it (this is about half the cost of a new one.) I figured if I liked it, I'll buy a new one at some point, though the used one is working just fine.

Any questions about blends, blending, blenders, blendiggities? Let me know.

Good things this way come

2011-07-06T08:31:00.001-07:00

Almost exactly four years ago, Thfkae and I walked outside of the university and sat in the children's play area eating lunch. We were both teary watching the kids play wondering if we'd ever have a kid to play in a park.

This is the very park we sat in, and yes that's my child playing. :-)

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Mr. Obvious

2011-06-28T11:53:00.000-07:00

Emery's language still isn't like a typical 4-year-old, and while it has come amazingly far in even just the last 6 months, he's still working it out, trying to figure out how to communicate, what words express best how he feels, needs or wants.

He likes to know things and tell you about them, in his own way of course. He'll say things like 'apple is red,' or 'dog is barking,' or 'Frank is a dog.'

Sometimes he says things like 'water is wet,' and Thfkae and I will just laugh and say 'why, thanks Mr. Obvious!'

Today while eating breakfast Emery pointed at the honey jar and said 'honey!' Then, he looked at me and smiled and said 'Obvious!'

I haven't been able to stop laughing all day :)

Why be normal?

2011-06-23T12:24:00.000-07:00

Emery had a lot of therapy in EI - not overmuch until the very last quarter, but many therapy appointments a week. He obviously has sensory issues, and worked with an occupational therapist. Emery aged out at 3 and I lost contact with his therapists. I promised I'd keep in touch and send updates and just never got around to it.

Imagine my surprise when I found out his occupational therapist had a micropreemie. Imagine her surprise. She wrote a great post about time healing all sounds. As I was reading it, I really wondered if time heals all wounds.

My answer, unfortunately is no. But don't just give up.

When Emery was first born, when it became evident that I was awake and this nightmare wasn't going to go away, was to get him home as quickly as possible so that I could forget about the trauma of the NICU.

Ha.

Everyone thinks that the babies who come home are fine. They are not fine. But more importantly, you can't spend 225 days wondering if your child is going to live or die and watching your child suffer repeated injustices without some damage, the best term I've heard coined is mental anguish.

It's not just about losing a normal pregnancy, breast-feeding and meeting developmental milestones, there is true psychological damage for the parents and for the child in the NICU. Every day is a roller coaster. One day is great - the baby is saturating well, tolerating feeds, growing, and the next day is a terror - there's an infection, the kidneys stop working, the heart is enlarged, the vent settings increase, feedings are stopped, lines are removed.

So, when the baby comes home those things do heal. They images become less frequent and you have your baby in your arms.

But I have a special-needs child out of all of this, one who likely would have never been so had he not been early so I live every day, as does Emery, with the painful reminder of his early birth. He does not interact with other children, everything is a struggle and a fight, he can't pull up or down his own pants, we have never had an enjoyable meal. I still have a DME deliver equipment to my house several times a month. Every day is a reminder. It's a scar that I have to touch and feel and poke at every day. And I'm not over it.

But yet I am, because this is my new normal. Eventually you have to learn how to live life in the midst of the storm. I'm not going to lie to you and say it's easy, but the best quote I've ever heard was "nothing in this life worth having comes easy."

I have days where I want to throw in the towel. I have days where I can barely catch my breath. I have days wondering if I even did Emery a favor by resuscitating him because he's suffering so much.

And then I have days when Emery takes a bite of an apple where my heart sings with joy, days when I see him play with another child and I can barely keep the tears away, and days where I'm so full of love for my family I'd die for them - literally. People say that, but I know it.

At church on Easter the kids all came up and put a flower on the cross. We were late so Emery was the last child to place a flower. Over and over Thfkae kept repeating "And so the last shall be first, and the first shall be last."

Thfkae fully believes that ever if there is a progression into heaven, people like Emery, the forgotten ones by society and the ones pushed aside, will be leading it.

Yeah, I'll take my new normal any day.

Quick update....

2011-06-20T20:05:00.000-07:00

Well, first of all - Saturday marked 2 years since my mother's passing. Where did the time go? Jeez.

Anyway, this is just a quick update. Thfkae and I have been putting into practice what the autism center director suggested, as well as following what his teacher had done during the school year.

If you're curious at all....

Sunday morning we went to church. The day before we had a church function and Thfkae and I volunteered to watch the kids. It was a long day, 4 hours in the toddler room. Emery was next door in the 4 to 5-year-old room. Halfway through we brought him over with us. We just didn't feel comfortable leaving in him that room while they tried to play organized games.

On Sunday we debated whether or not to move Emery into the toddler room. The decision was, no, we should not as no one as ever made mention of anything amiss with Emery at all. We were the ones who chose to move him the day before.

We checked in him and went to the service. When we came back to get him, this is how it went down.

KV stands for Kids Volunteer.

Me: Hi! How did it go?
KV: Well, I haven't been here in 6 weeks.
Me: Oh, have you had him before? I'm sorry, I forgot to tell you about his needs.
KV: No, no! You've told me about him before. I'm familiar with him, it's just....
Me: (heart sinking) I know, we'd thought about moving him to the toddler room today but had decided against it.
KV: No, um, I don't want this to sound bad, but are you guys doing something different?
Me: What do you mean?
KV: He's on the spectrum, right?
Me: Well, sort of. His diagnosis is PDD, which basically means he has signs and symptoms of autism but isn't classically autistic.
KV: But are you doing something different?
Me: Um, I'm not sure what you mean?
KV: He was just so easy today, so involved and so social. We had a really great time with him today.

There you have it, folks, and we're not even half-way done with the things we're implementing.

So far he's pottied every day and has tried to tell us, and we've had a poo poo on the potty as well. He knows when he has to go and for the first time ever, it's starting to bother him is his diaper is dirty.

Today in the grocery store he said hi to everyone he saw.

On Sunday he tried with all of his might to interact with someone who wanted nothing to do with him (that actually made me sad that the first person he tried to actually play with ignored him, but oh well.)

Bring on the other therapies, folks, Mommy and Daddy are on fire!

What if the Dog Whisperer had a brother named Hector who worked on parents of autistic children?

2011-06-17T07:03:00.000-07:00

Our spare left on Monday, and interestingly Thfkae and I were sad to see him go. He was a very sweet-natured baby, just the right amount of cuddly and independence. Corresponding with him leaving was a ridiculous decline in Emery's behavior.

I'm not too surprised because Emery is a creature of habit. We took spare back to Catholic Charities and then headed out to Vacation Bible School after. This was nothing less than a disaster.

Emery got into his classroom and sat with the other kids and I was proud at how he just fit right in. All for 30 seconds. After that it was mayhem, including him screaming, throwing rocks, throwing fits, hitting, kicking and screaming for much or all of it. We snuck out and left. We haven't been back since. Our friend invited us, and I have no idea if she's angry that we haven't returned. Actually, as I type this I'm sure she isn't because that isn't her nature.

All grief cycles. For the last few months I've been living under the delusion that Emery wasn't that far off from normal. Sure, I might have told people he was delayed, but that was mostly to protect Emery (our, realistically - me) from ridicule. Seeing him Monday, noticing that Emery is incapable of even the slightest reciprocal conversation and watching him deteriorate sent Thfkae and I off on a wave of depression and frustration.

Emery's behaviors escalated. By Tuesday night we considered putting him in a group home, so bad were they that we couldn't control him. By Wednesday Thfkae picked Emery up from daycare. He marched into my office and said "Well, that's it. He's getting kicked out of daycare."

I sobbed. What had happened? Was I really that delusional? Because I work nights and Emery is in school all day it's possible I just didn't notice how bad he was, but I did spend weekends with him and I do work at home so that didn't seem likely.

Unsure of what to do I sent an email off to his teacher. She's not coming back to his school next year, a victim of restructuring per usual with public schools, but at the end of the year she gave me her number, address, and email. She said she's a friend for life and anything I needed, just call. So, I did. Five minutes later I found myself on the phone with director of the local autism center. (I'd mentioned this place before - the one insurance doesn't cover.)

We talked for 45 minutes. I rattled off what was going on with Emery and she listened quietly. She gave me some suggestions, and I told her what we were doing. I told her about Vacation Bible School and a meltdown he'd had at the mall not too long ago because I interrupted his play with Thomas trains (it took over 45 minutes to drag him screaming through the mall where one woman said "Oh, little boys like that get spanked.") 'It's embarrassing,' I squeaked. She said, "I know it is" in such a soft empathetic voice that I cried for about 10 minutes while this woman, a stranger, sat quietly and waited for me. The next day I found myself on the phone with my east coast friend and I at least have a plan in place. In Emery's defense, he's been phenomenal the last 2 days.

I can speculate 'til the cows come home about why this all went down, but it doesn't matter. The fact is, it got me moving. It woke me from my rose-colored slumber into action and that's really all that matters.

Her suggestions were good, and not much different than what we're doing. Emery's teacher actually unexpectedly stopped by the next day and then followed me to daycare to work with his daycare provider. His daycare provider assured me that he wasn't on the verge of getting kicked out, but that these behaviors need to be addressed and what can we do to help.

How dark it is before the dawn. On Wednesday night it took everything I had just to get out of my chair and move.

By Thursday, I was running.

If you think that life is fine after you bring your preemie home, you are sorely mistaken. Sure, many of them function just fine, but for many of us it's a jungle and an obstacle course just to navigate the day.

This morning, Emery asked me to dance and we danced around the house and laughed. I picked him up and he laughed and laughed and hugged me.

Our joys come in moments.

Surrender to Win

2011-06-11T12:38:00.000-07:00

In a perfect world...

This past Thursday Emery was due for some major appointments in Iowa City. He first needed to have a followup with pulmonology, and then he was to undergo anesthesia, get a nuclear medicine scan to find out exactly how his kidneys were functioning, a followup renal scan to make sure those pesky stones were still stable as well as to determine if the size disparity was just that or if one of his kidneys was done growing, or worse, no longer working. He needed followup labs, too. The next day he was to see the surgeon to see what she wanted to do with the results.

In my reality....

On Tuesday night Emery developed a fever. At first we thought he was overheated. It had been nearly 100 degrees here that day and we had his friends over for dinner. A lot had gone on that day, but as the night progressed he never did cool down. I took his temperature at 11 p.m. and it was 101.6. He was lethargic. I gave him Tylenol and it came down fine. The next morning it was back and he was still lethargic. I called the university to ask them what to do about the fever, and the nurse told me he shouldn't undergo anesthesia with a fever b to call in the morning. Kids can change on a dime. So, I emailed Emery's doctor explaining the fever, how we really wanted Emery to get scanned because of some nagging things we'd noticed, and that I was going to have some lab values sent to him in case the appointments got cancelled. Well, apparently I didn't explain myself well. He instructed the staff to cancel the appointments. The nurse called me back to reschedule and I was completely confused, said we were coming there anyway for another appointment and I'd call them in the morning and she agreed.

Emery's temperature stayed down all day with no medicine, but when we woke up the next morning he was lethargic, obviously not feeling well. He was refusing to eat and saying his neck hurt. When I asked him to point to his owie he pointed inside his mouth. Just not feeling right about it all, I called and cancelled his scans. My sister came over and we drove to Iowa City to see pulmonology.

When we arrived at 10:50 (our check-in time) I was glad it wasn't going to take a lot of time. I'd called the night before to pre-register and knew I just had to let them know we were here. I'd scheduled an appointment with his pediatrician for 2 p.m. just because Emery kept complaining about his neck hurting (his throat) and the fever and lethargy. By this point Emery was acting completely normal and he'd not had a fever in over 24 hours. I checked in the desk and told them we were there, and the receptionist said "Wow, you guys have a lot going on today. Let's get you started." NO ONE CANCELLED THE DAMN APPOINTMENTS. Mind you, I was told the day before they'd been cancelled, because his physician had asked that they be cancelled, and I called in the morning before we left to cancel them. If I would have kept my big fat mouth shut, he would have been scanned and all would be fine.

At 12:30 when we were finally seen by a doctor, I was livid. I had to call and cancel with his pediatrician because there was no way we were going to see a doctor with the hour it to takes to drive back.

I truly like all of Emery's doctors, but this makes me angry. The run-around, waste of my time, forgetting the fact that I'm often made to feel guilty for taking time off of work because of Emery's needs and so I rarely do, often going through a serious day of hell of several appointments plus travel with Emery who is difficult on his best days and then come home and work a full 8-hour shift. It's exhausting, and I'm tired of it.

I know they see thousands of patients and that no one gets special treatment and I'm not expecting any, but already at the university I have to relay information to a medical student first, then a resident, then possibly a fellow at least one nurse and then the attending physician. I go through this sh** each time I go up there and I'm tired of relaying this information to people who have no personal information about my kid, so forgive me if I'm angry when I'm repeatedly brushed off. I don't want to waste any more time telling this story to 8 different health care providers for each appointment only to find that it never matters. Emery is stable and no one seems to care that he hasn't gained any weight in over a year because he's stable.

Okay, vent over. Maybe there was some sort of divine reason that none of this went down. I know, surrender to win and live and let live and first things first and blah blah blah - I'm not sure how many times I can misquote St. Francis, but you get the point.

Spare

2011-06-10T18:14:00.000-07:00

We picked up a spare kid this week. Well over a year after our first failure, we decided to give foster parenting a try. We did switch our home over from a long-term placement to respite only, and to be honest had this been our first child we would have done this a million times over. He is THAT easy. He's also about as round as he is tall. It is utterly bizarre having a child who eats with reckless abandon around here.

Emery has yet to perfect smiling for the camera.

He's getting better, though.

This is the first picture Emery has ever taken. I'm very impressed that he somehow found the one pimple that exists on my entire body and managed to capture it on film.

But it's more than that.

2011-06-07T22:03:00.000-07:00

They wore their pajamas to the NICU on a daily basis. I'm no stranger to comfortable clothing. I work at home and have not required work clothes in over 7 years. The work clothes I do own are outdated or no longer fit. But this was something different. They wore the kind of clothes that looked like what you would throw on after a night of heavy drinking, and maybe some heavy vomiting. They were also very young, barely out of their teens.

He usually had a pick in his hair and they were always arguing, but not negatively. It was more good-natured ribbing and loud, mostly like they were performing for an audience. I mostly remember them from the very earliest days when Emery was in the NICU, which is to say my memory of them is vague. Once, when I was walking over to the NICU to deliver some breast milk and because my surgeon had informed me that I needed to be up and walking, I rounded the corner and saw the doctor on rounds. She and I had not met yet. Emery was perhaps 3 days old. The young woman came bounding in behind me and yelled down the hall "Are you busy?" The doctor stopped rounds and came and talked with her. I remember thinking that their baby must be very sick for the doctor to stop rounds and come and talk with her. It never occurred to me how sick my baby was when the doctor made a point to break rounds and come and talk to me the next day. But then again, that's just the way she was. Actually, that's the way all of the doctors were there; what do you expect when your child is in a university NICU?

Eventually I went back home and to work and just never ran into them again, but they were impressionable. Back home a coworker sent me an email wishing Emery well. We ended up talking on the phone and it turned out that those two I remembered? It was her granddaughter, and it was her great-grandson in the NICU. What are the odds? I asked her why she never came around the corner to say hi, and she said she was sometimes embarrassed by their behavior and didn't want me to know they were related. She was joking. It's not like you can roam around the NICU looking for people you might now. The university sports a private room for all of their NICU patients.

Anyway, we talked regularly of our NICU babies. That baby had gastroschisis and had a very poor prognosis but survived. The baby also required multiple transplants about a year later and that couldn't be done at the university. That baby also died less than a year post transplant.

He had a fever. The mother called the university and they had no available bed so they told her to keep an eye on him. She went in to kiss him goodnight, and he smiled with his fever. A few hours later she went in to check on him and he was dead.

It's my understanding that any post transplant fever warrants a check-up and monitoring, and this baby didn't get that. And logically I understand that a fever post transplant is something serious.

I also know that for the average toddler a fever is nothing serious and means that the child's immune system is alive and well, working fine. Fevers are nothing to be concerned about in healthy children. And Emery is healthy.

But for some stupid reason whenever he has a fever, like he has tonight - 101.6, I think of that baby who died because he wasn't checked and monitored. This is one freak incident that has NOTHING to do with my child but that's the quirky part of my brain that I hate, or maybe it's PTSD (a lot of preemie moms have PTSD.) That's where my mind goes whenever Emery is sick - it goes to that one freak story that is unrelated to my child in any way, shape or form and then I worry. I feel like I need to lie by his side and watch his every move. He's fine by the way. Not sleeping but not uncomfortable. He was playing earlier and is mostly grumpy and stuffy.

I never used to be this way. I could systematically block out unpleasantness and sleep just fine. But not anymore. It's more than that now.

I beg your pardon, I never promised you a rose garden.

2011-06-03T15:45:00.000-07:00

Actually, he did. And delivered it in spades.

He always said he wanted to give me flowers :) The side of our house was kind of an eye sore, so Thfkae actually built that fence and managed to rehabilitate a climbing rose. For the record, I do not have a green thumb. Actually, when it comes to plants I don't think I have a thumb at all. Thfkae's zen is gardening. Much to my benefit.

Getting my head on straight

2011-05-29T07:52:00.000-07:00

My memory isn't what it used to be, so I'm not sure if I've even addressed all of these things. First, I've had a few posts pretty much whining about what to do with Emery's behaviors, what therapies I should seek out, etc. Some of you have offered some help here and there and I'm not sure if I've followed up here with any of it.

First, our situation with getting autistic therapy services covered. I think I've talked about the fact that even though there is a law in place stating that all children with autism receive, by law, $30,000 in autistic treatment, neither of our insurance companies will pay for it because they are technically in other states and don't have to follow Illinois law.

Here is part of the problem. I have a limited amount of time to spend on the phone making these exhausting phone calls, but just from what I've garnered from other parents here locally, our school system here in this district really caters to special needs children. I'm not going to get any service outside of the school that would be any better than what I'm getting in the school, so we haven't fought or desperately tried to get anything for Emery outside of the school. His entire school day is a mix of ABA and Floortime with private OT, SLT, PT. He literally gets the gamut of therapies at school. Other parents of older autistic children had nothing but glowing reports from our school and I can see why. They never follow one set of strict rules for any kid. They pretty much meet regularly and figure out what's best for the kid, they let each other know, and then get to work It really has worked out well. If I haven't contacted you back or gone off half-cocked looking for lawyers to take on my case, that's why. He's really getting something better than what a private service could offer me right now.

A while ago, Bridie was willing to put me in contact with a family member of hers who was doing the Son-Rise program. I did actually get a packet sent to me from the center giving me some background, and honestly we're doing a lot of the things now. Part of this program also involves intensive therapy that starts in a room with one-on-one therapies similar to Floortime and RDI. Now, we wouldn't have to start like that, especially since Emery is in school, but many of the suggestions are things we're already doing so I didn't feel the need to go that approach. One of the things that intrigued me were grown children out of the Son-Rise program and their accounts of how they felt when they were very young, the common term being 'stressed.' This interests me because Emery does seem to be very distracted and stressed. I'm more interested in finding out why he is stressed rather than demanding he change his behavior. Read here for some amazing insight into autism. It's changed the way I look and Emery and deal with him. We now treat him as if he can and does understand everything we say. Since doing this, I've noticed quite a few changes in him.

Thfkae and I are also extremely limited on funds, that's the long and short of it. I don't have hours a day to spend on the phone sorting these things out nor do we have the resources to go out and fight for everything we need.

But the biggest thing I've noticed is that we put Emery in daycare with typically developing children, and I've seen more change in in this short of amount of time he spends there than any exhaustive hours of therapy could have given him. Being around typical kids is best for him. Since he's an only child and spends the bulk of his day with special needs kids, this has been really great for him. My hope in the future is to try to mainstream him as much as possible.

If I come across as passive-aggressive, it's because I am lol. If I haven't answered any questions or if I haven't gotten back to you about something, please let me know - and please know that it's not because I'm blowing you off. I just oftentimes find it very hard to do all of the things that need to be done on top of trying to do things for Emery - a simple phone call to a doctor can often last an hour.

About that mirror....

2011-05-28T07:49:00.000-07:00

Emery had his very first sleepover. Last October, some friends gave Thfkae and me a gift certificate for a local hotel. Well, I promptly placed it somewhere and forgot about it. I was doing my biannual cleaning and found it, noticed that it expired May 21 and set about finding out what we could do about it.

Well, it turns out Emery's grandparents were willing to take Emery overnight for his very first sleepover. Aside from the hospital, we really haven't been away from Emery. Once my sister spent the night here with Emery to take care of him but I can't remember where Thfkae and I went or why. This was different, though. This was a night where Thfkae and I got to go out and have a grown-up meal, no curfew, sleep in and we even went to church without taking Emery.

Emery did great. Grandma and Grandpa were a little nervous, but Emery slept well and had a good time.

Now we just need to convince someone to take him for a week.

I found a full length mirror

2011-05-27T07:48:00.000-07:00

Here I am down 1 pant size and a bout 16-ish pounds. I'm down 17.4 pounds to be exact (just weighed in yesterday.)

EDITED!!! Please forgive me!

2011-05-26T17:56:00.000-07:00

I might be working again - for all two of you who read :) Here's a great PSA - warning - it has offensive language, but then again - I find the 'R' word offensive.

For the record, if you watched the last one I posted - I WHOLEHEARTEDLY apologize! I'm so sorry for putting that crap up. This is the real one!

cant get into my blog

2011-05-25T20:25:00.001-07:00

Okay.. for whatever reason I can no longer access my blog. I am doing this from me phone and don't know if this will work. I guess I'm moving to wordpress afterall. I can't even get in to delete this blog. The address is littlemanbig.wordpress.com.

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And from then on, I was running!

2011-05-20T07:29:00.000-07:00

I started running a few weeks ago. Running is a loose term. It's more like wogging - very slow jogging and walking. Actually, Thfkae and I decided we wanted to participate in Race for the Cure in honor of my mother and his sister. One of the things my mother told me on her deathbed was that she put herself there - she never took care of herself. At the beginning of this year, I put my big girl panties on and started doing if. I know I've been remiss in posting about my Weight Watchers journey, and I apologize for that. It actually stemmed from the fact that Emery broke our full-length mirror and I haven't been able to take pictures.

Anyway, I'm down over 15 pounds and full pant size, but my journey of weight loss isn't even halfway over. I still need to lose about 40ish pounds. Originally I thought it was less until I went to a WW meeting and they showed me my target weight for my height. Turns out, I needed to lose more than I thought. No big deal, it's not like you can lose 50ish pounds overnight anyway.

So, on top of doing some activities, I'm running. I started the C25K program and have had good days and bad days. I've also injured myself already in spite of taking every precaution necessary and hurt myself as a fluke, but I've kept running. I actually really enjoy it.

So I haven't been spending a lot of time at the gym which means I haven't been able to get a full body shot - but soon. I was just looking at the pictures when I started and I can't believe the difference already.

Sarah 1; Spider 1

2011-05-19T07:18:00.000-07:00

This is known as the yellow sac spider.

Sitting here and typing about it with a picture there is giving me the heebie jeebies. I think we all know that I don't like spiders!

It's not a secret. This is well known amongst people who know me in real life. In any event, the yellow sac spider is a common house spider pretty much seen all over the world. So why am I telling you about it?

(ahh, I've typed far enough that I no longer have to see the picture.) The other night I was sound asleep and felt a burning in my elbow. In midst of a dead sleep it felt like my arm was asleep so I rolled over, only the burning didn't go away - it intensified. It became obvious through the haze that I was bit by something. I started rubbing my arm and touching it made it worse, so I stumbled out of bed to the bathroom. I wasn't remotely aware yet, but slowly coming to out of the fog. I turned on the light and squinted fiercely and held my elbow up to the mirror. Sure enough, there was a large welt and increasing redness around the welt. By this time I was feeling sick to my stomach and I had cold sweats. I started getting nauseous and a few seconds later my throat was itchy - I was having a hard time swallowing. I became fully aware in a minute and closely inspected the bite - there were the 2 telltale bite marks common for a spider.

Now, because I was having an adverse reaction I instantly became concerned for a brown recluse bite, which while native to the Midwest really don't tend to migrate this far north; however, my sister was bitten by one and we'd had a presumed one in the house in the past. I went back to the bedroom and told Thfkae who woke up, turned on the light and we saw that little turd from above lying on my pillow. He promptly killed it (for the record, I do not need a man to kill spiders, so long has the battle between spider and Sarah existed that I gird up my loins and dispose of them myself.) I put it in a baggie and struggled with what to do. My heart rate was increasing. Thfkae kept telling me to go back to bed. (How in the heck could I possibly lie in bed knowing they were out there?!)

Finally, I decided to go the ER. Even though the spider didn't look like a brown recluse, all of my Internet searching for the bite symptoms replicated a brown recluse bite. Plus, it was clear I was having a serious reaction. It never occurred to me to take Benadryl.

By the time I got to the ER, all symptoms had abated (of course!), but I was already triaged and stuck paying the bill. They forgot about me for 3 hours in which I fell asleep on the bed and was just about ready to leave when the doctor came in. He looked at the bite and reassured me that it was, in fact, not a brown recluse. A brown recluse bite wouldn't get better, but he did tell me that I am probably allergic to spider bites. An EpiPen wasn't necessary to keep around since I did get better on my own, and then he told me about the yellow sac spider.

It turns out that that pesky common house spider bite mimics the brown recluse bite to a 'T' and people even have necrosis from that bite like they would with a brown recluse bite. The yellow sac spider usually hangs out in little tufts on your ceiling generally not causing harm, so you would think, except that those jerks are nocturnal HUNTERS! They go in search of prey at night. So, I've spent the last few days vacuuming every spider out of the ceiling screaming "ha HA! Victory is mine! It is mine! Die, you commie spider!!!" (for the record, they usually don't respond, but I know they are gathering resources as we speak.)

And I was also informed that a bite from one of these might result in a worse reaction the second time, operative word being might.

For now, the score is even.

For those of you who were interested...

2011-05-17T07:07:00.000-07:00

My brother-in-law Steve had brain surgery last Thursday and came through it with flying colors. The surgery was supposed to take about 6 hours, lasted somewhere over 7 - in fact, they called up to the waiting room to let us know that the tumor was out at exactly 6 hours and then they had to close which took a while longer. He woke up, knew who he was, and by that evening was complaining about the food. Gotta love Steve! Within a day he was generally being ornery so they sent him home - yes, less than 24 hours after brain surgery! If ever there was a poster child for brain surgery, this was it. Anyway, you can follow him here if you want. I'm happy to say that his sense of humor has not in any way been affected by this. If you get a chance, read his list of things to do today and get a giggle - it's all about perspective, people!

Before I forget...

2011-05-16T20:59:00.000-07:00

Last week I was sitting at the table with Emery while he was eating breakfast when he said "all done?" I said "with what?" One of the things they're working on in school is the problem he has actually answering questions. If he has been taught what to say he can answer questions with rapidity, but trying to formulate a thought and the words to go with it are difficult for him. So, when he said "I need help" and we say "with what" he'll just repeat "I need help" over and over. It's frustrating for all of us. So, often we'll say "Oh, you need help with your coat" or "you need help with your drink," etc. Anyway, developmentally typical children can communicate in a variety of ways - with head shakes, pointing, nodding. And, once they start learning some words they can generally easily put their thoughts into words - it's not always pretty, but a 2-year-old can usually say "Mom, thirsty. Want drink." Or something of that general nature. At age 4, Emery is still very much behind. So much has happened with his awareness and language that I keep thinking "I must go blog about that so I don't forget" and then something comes up and I always forget.

I actually rolled this entire blog over into wordpress, excited that I could finally post with a password protect, and then on thinking about it realized that maybe not having the ability to do that was better. Having this open to the general population does keep me accountable. I certainly can't rant here about a variety of things that I might not have the nicest things to say, so here I stay for now.

In any event, Emery said "all done?" I said "with what?" The problem with this is I had no idea with what he was talking about. Breakfast was over and I was giving him a bolus and he was happily playing with his windmill. I couldn't for the life of me think of what he was all done with - usually he starts saying that when he's just started to eat breakfast, not after it. Anyway, a minute went by. I forgot about it and seemingly so did Emery until he said "Want Mommy all done tubing."

Can you believe that? He put an independent thought into words!

Also, this morning he said "Want ball?" I said "Where is the ball?" I really didn't have any idea where it was. Again, time passed, but far less than it did above - and he said "Want football Aunt Lori's house?" He left his football over there!

I am so proud of him. His tantrums are still bad, very frustrating for us and him. He simply can't cope when he doesn't get what he wants, but his communication is so amazing right now and he's pointing at everything. If he asks for something and I don't know what he wants I can so "Will you go point to it?" and he does!!!

I think this is going to be a very fun summer.

A boy and his dog.

2011-05-16T13:38:00.001-07:00

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Back at the University

2011-05-12T05:44:00.000-07:00

But for a much different reason. This is my niece Hanna. Her Dad is having brain surgery today.

If you're interested in a background, this is Erik's sister's second husband's daughter lol. However, Erik's sister demanded that they live as one family so for all intents and purposes she's my niece :) Anyway, she's started a blog for her dad who is having brain surgery today for recurrent brain cancer. and if you're interested in following his progress and sending prayers I'd appreciate it :) If you are wondering, yes it is the sister of Erik who passed away last year from cancer.

The Promise Walk for Preeclampsia

2011-04-25T07:38:00.000-07:00

In 2 short weeks, I'll be sharing my story. Okay, I know you all know it here - but I'll be speaking at the Quad Cities Promise Walk for Preeclampsia.

Clearly by now you all know Emery was premature because I developed preeclampsia.

Here are just a few tiny problems with preeclampsia..

The only known cure for it is delivery. Yes, even at 25 weeks'.
Delivery doesn't guarantee life. Moms and babies can die even after delivery.
There are only early indicators for preeclampsia, no know diagnostic tests.
There is little treatment - pharmaceutical therapy can only possibly delay delivery.
Women even in the United States and developed countries die from preeclampsia every day.
Preeclampsia does not discriminate, it doesn't care about your age, race, socioeconomic status - or even sex - male babies die, too.
We receive very few grants for research because studies are done on pregnant women.

If this sounds scary, it is. I knew I was sick when I was pregnant. I knew something was wrong - but never in my life did I think that I would go through the horror of having a micropreemie, and make no mistake, just because Emery lived doesn't lessen the absolute horror of his birth. I didn't know if I would live, let alone my child - and yet I was perfectly capable of thinking and feeling and knowing what was going on. I had absolutely zero control over any of my circumstances and was at the mercy of my healthcare providers.

I was one of the few who actually got sick again after delivery. Like I said, delivery doesn't mean cure. Many women die sometimes weeks after delivery because they develop preeclampsia after delivery. This is a scary thing.

So what can you do? Aside from what all of you have been doing for years - you can do many things. First, come out to the walk and see me :) It's May 7 and you can find the information from the above link. Second, consider pledging for us. All money we receive goes directly to the Preeclampsia Foundation, to research and to treatment. We do not have a large staff, our executive director only last year took a salary (and it is NOT a 6-figure salary like other charitable organizations,) and third - you can donate directly to the Preeclampsia Foundation .

And remember, every prayer, every dollar, and every ounce of hope goes to helping little boys who like to wear underwear on their head :) Trust me, it's worth it!

"Undoewayoh"

2011-04-20T15:19:00.001-07:00

Perhaps this is why he is not potty-training?

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Can you tell me how to get ON Sesame Street?!

2011-04-18T19:13:00.000-07:00

You can help by clicking here :)

Road Trip

2011-03-28T12:36:00.000-07:00

Last weekend Thfkae and I went to a wedding in Colorado for a dear friend. Funds were tight, so we drove, and in retrospect it was the best decision. Emery did great in the car, but I imagine he would have done quite poorly on a plane.

The drive between Illinois to Colorado is filled with majestic, colorful landscape.

Um, anyway - we brought Emery's bike and let him ride it a few times. This seemed to keep him content for the 4-hour stretches of driving he had to endure.

Actually, I did find the sunset quite pretty on the plains.

We had a whopping 2 hours of spare time in Colorado to enjoy the mountains. It turns out, Emery follows Daddy pretty much everywhere.

Much to Mommy's chagrin.

The bride was stunning.

And Emery was handsome as ever.

The End.

Okay, so not so much the end. We were actually curious (and a tad worried) how Emery's lungs would do at the high elevation, especially given the fact that we brought no oxygen. We needn't have worried. He did better than fine and showed no issues at all with troubled respirations. What we did notice though, was that his perfusion was extremely poor. We had a very hard time keeping his hands and feet warm, and Thfkae randomly remembered that high elevations lead to poor perfusion. Emery did 'complain' a few times about his hands, but other than that he was fine - so for those of you wondering where your severe BPD babies will be in a few years - take heart! He did great!

WW Week 2

2011-03-26T12:36:00.000-07:00

I lost 2 more pounds! And I somehow did it after a whirlwind road trip to Colorado for a wedding, which by the way was catered by Texas Roadhouse, and yes I ate steak.

Too Much

2011-03-25T07:26:00.000-07:00

I'm sitting here anxiously awaiting froyo to finally download onto my phone (I don't know what that means, only that I'm apparently happy about it) when I realized I had time to plunk out a quick update for everyone - and then I realized I haven't eaten breakfast so you're getting a short version today.

Emery has been on break and we have been trying to potty train him. I say try because it's impossible to do with any regularity when you have to be someplace every day, and the fact that Emery screams, hits and kicks with every clothes and underwear change. Sigh.

We also had to go to the university for some allergy testing for him yesterday and he got 'big pinches' in his arms and he hated them. His G-tube sprung a leak in the middle of it. That was fun.

Speaking of big pinches, Emery actually had his first attempt at conversation last week. We were walking to the car and I was having my usual one-sided conversation with him just randomly talking when I said "we're going to go get the car a bath." He said "No!" I didn't think much of it because he pretty much says no to everything now that he's learned it, but a second later he said "No bath!" He hates car washes and everything about them and he actually was telling me he didn't want it. I almost peed. Okay, not really. What kind of lesson would that have been in the midst of potty training?

WW Week 1 weigh-in

2011-03-16T11:04:00.001-07:00

So, I had my first weigh-in and I lost 2.8 lbs! I'm going to a wedding in Colorado this weekend, but when I get back, for those of you who were interested, I've set up a yahoo group. I'll do another post about that later :-)