gastroschisis

kayte, who works for avery's angels, is in spain for a medical conference. she's speaking about gastroschisis, and apparently it's going very well. the doctors at the conference are very interested in gastroschisis and a lot of research is being done. this excerpt comes from postings on the avery's angels facebook wall, by meg (the founder of avery's angels):

"We are so very grateful to the doctors in Spain, representing 19 countries worldwide, who all showed so much interest in AAGF & so much faith in the gastroschisis community that it brought us to tears...

like all medical research it [their research] is available but copywrote and protected, available within the field but still protected for liability and so forth reasons. However they have put feelers and are interested in possible ways of sharing what they can. Kayte called me and spoke to me for almost an hour on the 12 hour conference they had today. Yes, 12 hours of gastroschisis medical research and innovations by ranking doctors world wide! She was the last to speak. But apparently, they're much more progressive and proactive with research so far as causes and best practices on treatment and have developed miraculous ways of repairing the disease. They can reproduce the disease in rats and are close to finding reasons and sources for the disease. As you will remember, Omegaven was developed in France. They apparently are as overwhelmed as Kayte was about their research about our organization and what we're trying to do and have pledged to help get us all over to mothers and fathers and babies globally. They have pledge support so far as helping compile some information and making some research available to us but are very excited about getting the support and info about us distributed world wide.

In several countries represented, namely Brazil and Mexico, doctors operate on these babies for free and come up with programs to access their patients. The tragedy to us was that the US wasn't present while being invited and many surgeons had close ties and training with and in the US. Kayte was surprised as was I about the innovations, education and research they have done. And the passion and energy they have for our babies where it often feels like here everyone underplays it with "this isn't the worst birth defect you can get" and all of our studies are spin offs of some larger product based study or bi product of another study. I don't think either of us were prepared to hear just how enthused they are about the disease and finding the cause and best treatment. It was a true light in the tunnel for us as many of the places we have searched and approached don't seem as interested. Put it this way, I got off the phone with Kayte and pulled over to the side of the road I was sobbing; for the first time in over a year felt like my son hadn't passed in vain. I'm very much impressed and very touched!! I can't wait for her to return to share more."

another baby update

so, our perinatology nurse (nurse Candy, no joke) emailed me an itinerary for our 32 week ultrasound yesterday. at 11:45am on wednesday, december 22nd we will be at the kaiser SF medical offices (2238 geary) for our growth sonogram (the hour long ultrasound we've had a few times already). after that we will meet with Dr. Wu (my perinatologist) to discuss the ultrasound, birth plan, etc. after that (or before, depending on when they schedule it) we will head on over to the hospital (in a different building, 2425 geary) and tour the ICN (intensive care nursery, some hospitals call it the NICU- neonatal intensive care unit, but this one calls it the ICN). the ICN social worker should be contacting me soon to schedule the tour and discuss how it goes during that tour. scott & i are excited for that, because we'll be in the place where our baby will be born. i'm kind of hoping there's another gastroschisis baby there while we tour.

i'll update you more as we get closer, but i'm excited for this appointment. it's kind of the beginning of the end for us. i'm not ready to have the baby in terms of having a room set up or anything, but i'm ready for the pregnancy to be over so i can get to the point where we start finding things out about the baby and his situation. i'm ready to get to the ICN and wait and wait and wait. i want to get to that point.

avery's angels

i love avery's angels. this foundation (non profit organization) has been my lifesaver. if you have a facebook then you should check them out here. because of this foundation i have gotten to speak to a few veteran mommies in california and talk to them about what they went through. they check in with me and i check in with them, asking questions about their experiences. once we get to the nicu stage of this they'll be super helpful. i'm sure i'll be emailing them daily, or at least every time we get updates on the baby. one of the veteran moms lives in the san francisco area and she wants to come visit me once we get settled in the hospital. i'm so thankful for that. it'd be so nice to have someone there who went through it already (and has a beautiful little girl to show for it). the facebook page is wonderful because you get to read what other pregnant moms are going through (or nicu mommies), and hear from veteran moms about what they already went through. people post photos of their babies on the page, too. and i'd really like it if my friends/family would check out those photos in order to prepare themselves for what we're going to be dealing with. it's a lot to take in when you look at the photos, but it's nice to prepare. oh, and if you feel like donating to a good cause, then you can donate to avery's angels on behalf of myself & scott & our little boy.

a is for atticus

naming your baby is hard. really really hard. every time we think we're sure of a name, i change my mind. scott says he doesn't care, but i bet he just wants me to pick a name and stick to it. we were set on jackson. totally set. we even had settled on a middle name. scott was calling him jackson every time he talked to him. i love the name jackson, but i don't want my child to be called jack. so, unfortunately, jackson is out. because jack would definitely be a nick name. and i can't control that. i ended up buying a baby name book the other day called "a is for atticus". it features a bunch of baby names based on literature. we found a bunch of names we like, and now we just need to decide.

here's our list so far (in no particular order):

jackson

griffin

nash

tristan

owen

wyatt

finn

jude

asher

beckett

blake

dash

miles

ryder

giant whale

being pregnant is strange. it feels like someone stuck a balloon inside of you and is slowly inflating it (that is literally the best way i can describe it) and when you think it can't get bigger - it does. the worst part is that i still have a few months to go so i'm going to just get a whole lot bigger. most of the time i feel like a giant whale (literally i tell scott that at least three times a week). we read this book called "your pregnancy week by week" and there are lots of "dad tips" in the book. one of them was all about how your partner is probably feeling very unattractive now (yup!) and how you should take her on a date. so, the other night we went out to dinner. i wore a black long sleeve t-shirt, black leggings and boots and you couldn't tell i was pregnant from straight on! it was amazing. i didn't feel like a giant whale. the waitress even told me that i look "adorable". which was really nice to hear.

everyone talks to you when you're pregnant. how far along are you? when are you due? do you know what you're having? i understand that it's nice because these people care and just want to know and talk to you. but it makes you feel like the only thing you're good for is growing this baby. that no one cares about you as a person... it's just all about the baby. we went to the store on our way home last night and 4 different people talked to us/me about the baby and the pregnancy. scott was so weirded out by it, but i told him it's like that all the time. it's a super weird thing to go through.

i'm registered on thebump.com and it's fun because every week they email you a "what's going on with baby this week" newsletter and you get to see what fruit or vegetable your baby is as big as. for about 23 weeks the size changes every week, but eventually it just starts to change in months. 25 weeks (what i'm at now) is technically the first week of your 6th month of pregnancy and baby is the size of an eggplant (image via the bump).

he feels like he's the size of an eggplant. i can see him roll around in my stomach now. the kicks are harder and more frequent. he's developing a schedule, and i've been told that whatever their schedule is like in the womb it's fairly similar when they come out. according to thebump, the baby is developing a sense of equilibrium and learning to distinguish upside down from right side up. isn't that so weird?

little tiny baby clothes

gymboree has clothes for "up to 7lbs" (which is preemie sized), then they go from 0-3 months (which is 7+ pounds), etc. i was at the mall today and stopped by and got a few of the dinosaur onesies, but everything there was so cute! i was so happy to find some teeny, tiny clothes for our little guy.

i love this little tiny dinosaur hat. they also have it in elephant pattern. so cute.

cute little elephant bodysuit. they have adorable little elephant pants, too. and onesies. love.

adorable little baby sweats in size "up to 7 pounds"

i'm so happy i found this store today. it was nice to buy little things that jackson will be able to wear early on (when we bring him home).

baby boy

on friday scott & i went to our 24 week ultrasound (even though i was 23 weeks 5 days). it was in santa rosa, and it was a normal fetal ultrasound. that was weird for us. it wasn't an hour long... we didn't need to meet with doctors afterwards... it was just the tech, it took about 10 minutes, and then we were done. crazy. it's strange how much has changed in the last few weeks since the gastroschisis diagnosis. it's weird how a normal ultrasound is weird for me. it's weird that i have a high risk pregnancy. it's weird that instead of talking to other moms about the nursery or fussing over small stuff i spend my days talking to other moms about how long their babies were in the hospital, when they got to hold them for the first time, when the baby pooped for the first time, how many surgeries he/she had to have. today we talked about whether or not to have pacifiers in the NICU for the baby (it helps gastroschisis babies immensely to further develop their suckling when they are finally able to be bottle fed), and if i'll be able to breast feed. i want to breast feed, and there's a good possibility i won't be able to because we need to regulate how much food the baby is taking in at each feeding. we might even have to supplement the breast milk i pump with formula to make sure the baby is getting enough calories to gain weight.

it's just that this whole pregnancy isn't "normal", so to have a normal ultrasound appointment was so weird. i felt like something was wrong. like they weren't doing their job well enough. i can't explain it, really. my dad came to the appointment, and that was really nice. i think it brought him some comfort that he needed. the ultrasound tech said something about how it looks like there's not very much bowel on the outside. my dad got excited about that. but i know what we're facing, and i know that i can't listen to the tech's diagnosis of the baby's gastroschisis. i am 100% aware that you cannot tell the state of the bowels (except for bowel death, distention, and if the bowel has looped at all) before birth. so as nice as it was for her to say that, and i'm sure it was nice for my dad to hear it, i can't buy into that. because we just don't know what we're dealing with yet.