today

one year ago today i got a phone call from a genetic counselor. she was calling to discuss the results of my AFP test and to schedule an in-depth ultrasound with a perinatologist to find out what was wrong with the fetus. this phone call changed our lives. it's just so incredible to think about how much has happened in our lives in the last year.

PPD & PTSD part 2

dana, a veteran gastroschisis mom, shared this link on avery's angels facebook page. it's an article about PTSD in parents that have had children in the NICU. i think you should definitely check it out, please, it'll help you to understand what us NICU parents go through: NY Times PTSD article.

post-traumatic stress disorder is a mental health condition that is triggered by a terrifying event. in order to talk about my PTSD i need to stress that my terrifying event wasn't just the NICU. getting pregnant, the gastroschisis diagnosis, and the NICU were all separate traumatic events in my life. though i knew that i'd spend the rest of my life with scott after meeting him that hot summer day in July 2009, i never imagined i'd get pregnant the minute we started dating. and once i came to terms with my pregnancy i never dreamed i'd be dealing with a birth defect. it's been a long, stressful, and terrifying year. it's also been the most amazing, wonderful, fulfilling year of my life.

PTSD symptoms are generally grouped into three types: intrusive memories, avoidance & numbing, and increased anxiety or hyperarousal. i have several PTSD symptoms: upsetting dreams about the traumatic event (intrusive memories), trying to avoid thinking or talking about the traumatic event (avoidance & numbing), difficulty maintaining close relationships (avoidance & numbing), trouble concentrating (avoidance & numbing), irritability and/or anger (increased anxiety), overwhelming guilt (increased anxiety), self-destructive behavior (increased anxiety), trouble sleeping (increased anxiety), and hearing things that aren't there (increased anxiety). i think it's safe to say that the bulk of my PTSD is manifested in anxiety.

if i look at pictures of griffin in the NICU i absolutely fall apart. i can't handle to see him like that, and i like the fact that when i see him each day i can't picture him with all those tubes and wires. i break down and cry when i think about the NICU and what life was like for us in there. i can't handle the memory of it, and i am extremely anxious about the possibility of future children needing to spend time in the NICU. the thought of going back there frightens me beyond explanation. i've pushed a good amount of friends away, unintentionally of course, but i have. i keep thinking it's because our lives are in different places, but really it's just hard for me to maintain my friendships. i have little interest in spending time with people, and actually have to force myself to meet up with friends (i always have fun, it's just hard to make the plans). i have so much overwhelming guilt about griffin making it out of the NICU, but i think i touched on that in my last post. i constantly hear things that aren't there, mainly griffin crying or the sounds the monitor used to make when they'd go off. the first time i ever heard griffin cry was when he was 7 days old, and scott & i spent the night at the NICU (there were parent rooms to stay in overnight). over all the other babies and monitors i heard a cry and instantly knew that was my baby. i went out into the main room in the NICU and sure enough, there he was- crying. i loved that i knew his cry immediately. but now, at night, i hear that cry. that tiny newborn cry. that cry of hunger and pain. i hear that cry when griffin is asleep, but when i check on him he's fine (and i know that's not what his cry sounds like anymore). i hate using our microwave because the beeps sound like the monitors that griffy was hooked up to. i'm very anxious about having more children (even though i know that statistically my chance of having another gastroschisis baby is the same as it was with griffin) and wonder what i'd do if another future unborn child had gastroschisis - what are the odds of having such a good recovery again? i'm a wreck. the NICU, while a wonderful place with great nurses and doctors who loved and cared for my son, completely ruined me. i'll never be the same. when i see my friends having babies, or read other blog posts by mothers, all of whom have healthy babies i lose it. when they talk about what it was like when the doctor handed them their healthy baby right after birth i'm completely jealous and angry. why did they get that experience and i didn't? no mother should know what it's like to watch their baby leave their body and get escorted out of the room. but that was my reality, and i'm dealing with it the best way i can. PTSD will probably always be a part of my life. i know it will get better, and worse, and better again. i'm sure a slew of symptoms will creep back up with a future pregnancy. but at least i know what is going on in my mind; i understand it, and because of meghan hall and her son avery i have my avery's angels veteran moms to share these thoughts and emotions with.

PPD & PTSD part 1

i wanted to dedicate a blog entry to postpartum depression and post traumatic stress disorder. this might be long, so i apologize in advance, but it's important for me to share this experience. i've made this a two part post. here's part 1:

let's start from the beginning, shall we? scott & i met in July of 2009 and even though we were head over heels for each other way before we started dating, we've only been together 11 months. 11 months. for those of you doing the math that means that our son, who was born 1 month early, was conceived the same week scott & i started dating. we found out on father's day (when i was 6 weeks along) and it's been quite the ride ever since (we moved into the house we bought 11 days after finding out about the baby's birth defect). after deciding to keep the baby, coming to terms with the pregnancy, and starting to tell family and friends (i showed really early, so we had to share the news much sooner than anticipated), we got bad news. my AFP levels were high and at 18 weeks we got the diagnosis: gastroschisis. all of a sudden my extremely unplanned pregnancy became high risk. words that you never want to hear were being thrown around: "defect", "terminate", "surgery", "NICU", "life-threatening", "unknown outcome". it was terrifying. we were told that we had until 24 weeks to decide if we wanted to keep the baby, and that while it wasn't recommended that we terminate it was still our decision. we chose not to terminate because we'd already gone through that decision 12 weeks earlier. the 18 weeks that followed seem like a blur now, but it was just a lot of doctors appointments, blood tests, and one therapy session. after meeting with the therapist she said "in less than one year you've started dating your boyfriend, moved in together, gotten pregnant, bought a house, gotten engaged, and found out your baby has a life threatening birth defect and you don't know how he'll do until he's born... i'm surprised by how well you're dealing with all of this". she told me i was doing remarkably well, but i don't think so... i just think i was doing what needed to be done for my unborn baby. he needed me to be strong, so i was. i was expecting to have some kind of baby blues happen after the pregnancy, but i never expected how intense PPD could be.

the NICU was an even bigger blur than my pregnancy was. 27 days of noise, monitors, bright lights, doctors, nurses, IVs, blood tests, and constant round the clock care. i drove down to San Francisco every day that griffin was there. i'd wake up in the morning, get ready, drive down to be with griff, stay until about 4pm, go home, and start the whole thing over again. it was like groundhog day... every day was the same, over and over and over again. i was surprised at how well i handled it. how i could handle seeing my baby puffy from IV fluids and surgery, how i could handle seeing his bowels in a silo, how i could handle not holding him, and having to leave him every day. he needed me to be strong for him and, just like during the pregnancy, i was. i handled it so well. yes there were many tears, but overall i did great. i never anticipated how my PPD would kick in after griffin came home. once griff came home i was a wreck. i was scared that something would happen to him. i hated that the nurses and monitors weren't there to tell me if he was okay. the 3 hour feedings, not sleeping, and being a complete wreck over each and every noise he made was rough. i started to feel like it was a joke, that he would be sent back to the hospital and that he would never come home again. it was too easy. our recovery was too easy. i was waiting for the hard part to kick in. i also noticed that i was pulling away from griffin. i felt so attached to him in the hospital, but once he came home it was almost like he wasn't my baby. i didn't feel as close to him. it's so hard for me to even write these words. i started skipping feeds and having scott bottle feed him in the middle of the night from our breast milk supply in the freezer. i didn't want to change him, bathe him, or clothe him. i didn't want to be around him. i didn't want to console him when he cried. scott stepped up to the plate and completely took care of our little guy. he was great. and i'd breast feed griffin during this, but only because i was supposed to. i didn't feel like it was bringing me closer to my son. scott's parents came to visit when griffin came home and i remember being in the living room with scott, his parents, and my dad and saying "i love griffin but i don't want anything to do with him". it was the strangest feeling ever. this little being that i felt so much love for the minute he came out of me was finally home, and instead of celebrating it i wanted nothing to do with him. i didn't want to leave the house. i didn't want to get ready in the morning. i didn't feel good enough as a mom, as a person, or as a partner. scott and i talked a lot about it, i saw a therapist (again), and talked to my doctor as well. i knew i could manage it, and i definitely have. it's been a slow process, and i'm still not 100% over it, but it is so much better and i finally feel like i'm a good mom. it was so weird to finally have griffin home. i felt relieved, scared, sad and guilty. i felt guilty for having the recovery that gastroschisis moms dream of. i still feel guilty about that. i feel bad for moms who have babies still in the hospital, babies who have needed multiple surgeries, babies who need or have had transplants. i feel bad for being the best case scenario, and i think that contributed to my PPD.

to be continued...

care path summary

i wrote this summary of our care path (during pregnancy and griffin's NICU stay) for the avery's angles gastroschisis website and wanted to share it on my blog. i kept a draft of a blog post that i'd write down everything i was feeling and thinking, and everything that griffin was going through during the NICU. i haven't published it yet, and i started to read through it today and it is very, very emotional. the NICU was rough on me, but i'll dedicate another post to that later. for now, i think this is a good depiction of what my pregnancy was like, and most importantly, what the NICU was like:

I was 18 weeks pregnant when we received the gastroschisis diagnosis. My AFP levels from my 14 week blood test came back high, and this 18 week ultrasound diagnosed two things: the gastroschisis, and that we were having a boy. After the diagnosis our perinatologist, Dr. Wu (from Kaiser SF) sent us to UCSF to have another ultrasound and meet with the surgeons who would be handling our case. At 20 weeks I was seen by the UCSF pediatric/fetal surgery team. Led by Dr. Hirose, the team answered all my questions and explained the recovery process as best they could (emphasizing that you don't know anything until the baby is here). They also told me that they don't let their gastroschisis patients go past 36 weeks. After those appointments I had a very normal care-path. I was seen for ultrasounds at 24 and 28 weeks at my normal hospital (not by specialists) for regular growth scans. I saw my regular OBGYN and then started my Non-Stress Tests at 30 weeks (2x a week). At 32 weeks I had another ultrasound and appointment with my specialists and again at 34 weeks (right before they decided to induce). I had an amnio at 36 weeks 1 day to test lung maturity (we had two possibilities at that point: if the lungs weren't mature I'd get two steroid shots and be induced two days later, and if the lungs were mature then I'd be induced the next day). We got a phone call the next morning at 6:15am to say that there was a bed ready for me at the hospital in San Francisco. After two days of induction, Griffin Reed Westerman was born on January 20, 2011 at 6:42am.

I delivered vaginally, which was great, but being induced wasn't the best. Right after Griffin was born he was cleaned up, bowels wrapped, and assessed by the intensive care nursery team (my fiance, Scott, said that he counted 17 people in the room with us when I delivered). His immediate APGAR score was 2, his 5 minute score a 6, and his 10 minute score a 9. Scott went with Griffin and the team and took pictures, and then they brought him to me. After I met him he was taken to the ICN, and the surgeons came and put Griffin in a silo. All of his small intestine, and most of his large had been on the outside, but it was in perfect shape; pink and bowel shaped. That was great news to me. Later that afternoon Dr. Hirose stopped by and got more of his bowel back inside. Griffin's closure was the next day. When he was 3 days he was taken off the ventilator, and we got to hold him for the first time! When he was 7 days old he pooped! Not much happened for about a week after that. There were no set backs, and we were just waiting for his replogle to be able to come out. His replogle was set to gravity at 9 days, but then we had to put it back to suction. At 13 days Griffin started to pull out his replogle and hadn't pooped since that first poop almost a week before. At 15 days old we got to take the replogle out and start feeds! We started Griffin at 5ccs every 3 hours for the first day (by bottle), to be increased by 5ccs each day if he did well the day before. At 17 days they gave Griffin a glycerin suppository because he hadn't pooped and then he started pooping like clockwork. He received a glycerin suppository every 24 hours for about 3 days before he was pooping regularly on his own. Griffin did great with his feeds and 19 days he got to feed on demand instead of every 3 hours. At 22 days they started talking about taking out his PICC line. They said they'd wait until Monday (which would be day 25) because it's dangerous to have to remove the PICC line and then reinsert it if he still needed it. At 24 days they decided to take out the PICC line and I was told by my nurse that being in the ICN more than 7 days after the PICC line was out would be surprising. At 25 days we started talking discharge. At 26 days we were told that Griffin gained weight and if he continued to gain the next day we could take him home! I called at 5am on day 27 to see if he'd gained weight. He hadn't. We still brought a change of clothes and his car seat just in case. Scott & I got to the ICN and I just cried. I wanted him home so badly. During rounds that morning at 9am the doctors told us that they were discharging Griffin. He came home after 27 days in the ICN.

2 month old Griffin

weighs 9lbs 12oz (which seems teeny but considering he was 5lbs 14oz at birth it's pretty good) and 21 1/2 inches long. he had some vaccinations so he's been sleeping all day and he's pretty much the most amazing thing ever. he coos and smiles and will sometimes mimic a sound you make. he loves to stare at you and play and loves his swing. according to our doctor he's "medically perfect" which is a huge relief to me since he's our precious gastro baby. we've been through so much for him to be here and now look at him. he's the yummiest little baby ever!

photobooth

he's smiling in the last picture! he started smiling for me about a week ago, and it's amazing. i haven't been fast enough to take a picture of it yet, but there it is!! i LOVE him.

9 weeks old

update

it's been awhile since i've blogged, and i'm sorry about that, but it's been hectic since griffin came home and i just didn't know what to say. griffin came home on 2/16/2011 after 27 days in the NICU. we had an amazing recovery and i feel very lucky, but i also feel a little bit guilty because there are so many gastroschisis moms that don't get this lucky. anyway, it's been a roller coaster having griffin home, but it's been amazing. he's adorable. we just love him. scott is the most amazing dad ever. he is so involved and wants to do everything. it's great. he gets up in the middle of the night, and i never have to ask him to do anything, he just does it. he is so attentive and in love with griff... it's the cutest thing ever. i love seeing the two of them cuddled up on the couch

this was taken the day he came home

daddy kisses

little sleepy monster

my two boys. so so cute.

mommy snuggles

(the day i dyed my hair, yes it's dark now, but not this dark)

big yawn

such an adorable sleeper

more daddy snuggles

we have a follow up with UCSF on weds 3/16. i'm fairly certain griffin has a hernia, which is really common with gastro babes. typically the surgeons won't do anything until after the first year, because sometimes the hernias will fix themselves, but the thought of another surgery just rocks me to my core. we'll find out more on wednesday. and i'm not even 100% sure it is a hernia, but my instinct says hernia so i'm going to go with that.

Griffin

griffin is the best thing that's ever happened to us. scott & i love him so much. he's perfect. it's hard to not have him home, but the hardest part is not knowing when he'll be home. it feels like we're just waiting. this whole process is just waiting. griffin is up to 25ccs of breast milk every 3 hours. he's handling it very well, and pooping on his own. hopefully today he'll be increased up to 30ccs (which is 1 ounce) every three hours. every day they raise it by 5ccs and see how he handles it. so far we've been able to raise it every day since he started eating, which is great. we might get stuck at a certain amount while his intestines figure it out, but we also might be fine with increasing the feeds. it's all up to griff and his body. he's doing very well and we are very lucky with his progress so far. it is rarely this easy for gastroschisis babies, so right now we are doing very well. if it keeps up i'll feel like the luckiest mom in the world. i'm not holding my breath though, this is very rare and a part of me is just waiting for setback. scott & i talked to the doctors about what we have to get to before we get to bring him home... what goals we're looking for. they told us that we have to get griffin up to 60ccs (2 ounces) every 3 hours. once he's there (and pooping regularly) then they'll feed him on demand, meaning that he dictates when he wants to eat and how much he wants. if he wants to wait 4 hours he can, if he wants to eat every 2 hours he can. it'll be on his schedule. once he proves he can gain weight, poop regularly, and properly eat on demand we can take him home. that'll be the best day of my life! i can't wait to get him home with us. scott & i are hoping that he's home by my birthday. he has 20 days until then, and it'd be the best birthday present ever!

birth story

so i feel as if i need to write down everything before i forget it. my labor story is long; it started on tuesday, january 18th at 9am and ended on thursday, january 20th at 6:42am with griffin being born. scott & i went to the hospital for an amnio on monday, january 17th at 7:30am. by the time we got home from SF, the doctor called to say the lungs were mature and we would induce the next day. we got a phone call at 6:30am on tuesday saying that they were ready for us at Kaiser SF. we got situated into my hospital room at 9am on the 18th. at 11am they started me on cytotec, a drug used to help dilate the cervix. you can have up to 6 doses of cytotec and you take it every 4 hours. after 4 doses and 20 hours i was only 1/2cm dilated. so the doctors decided to stop the cytotec and start with plan b. they inserted a foley catheter with a deflated balloon at the end of it. once inserted, the balloon is then inflated with saline. when the balloon falls out you're about 3-4cm. this was inserted at 7am on wednesday 1/19. for a good portion of the day i was still only 1/2cm dilated. the doctors started talking to me about going home and trying again the following week. i was NOT having that. i could not go through it all again a week later. we were having this baby!! i was determined. they decided to start the pitocin to see if it would help me dilate. around 3pm the foley was able to fall out and i could slightly feel my contractions from the pitocin. i was 3cm dilated, and we were on our way to baby! the contractions started getting stronger around 5pm and i decided to start trying the techniques we learned in birthing class. we "danced", lunged, rocked, and i even sat in the shower for awhile (that was amazing!) and let the water hit my back. it helped, for a little while, but the contractions got worse and worse. at around 7:30pm my water broke. it was meconium stained. the contractions got unbearable after my water broke. i could barely breathe. i just held the side of the hospital bed and moaned. scott tried to get me to breathe, but i couldn't do it. so i opted to try fentanyl. it worked for about two contractions, but then the contractions felt so much worse. at that point i knew i was ready for my epidural. i was 5cm dilated (my personal goal to reach before the epidural) and ready for some pain relief. what a great decision! my epidural took immediately and i felt so much better. it was 8:3opm and i needed some sleep. the doctors were checking me every 2 hours. at 2am on thursday the 20th i had a fever, was shaking, and was put on oxygen to help the baby. i was only 6cm. i knew the epidural would make the labor last longer, but i thought i'd be further along. at 4am dr. devoy said that she was hoping to deliver my baby and was sad that it didn't look like she was going to get that chance (her shift ended at 7:30am). she said "well, i guess there's still time" and i said i hoped that she'd be delivering the baby too. by 4:30am i felt immense pressure and knew i needed to be checked. i called for the doctors. i was 8cm. they said they'd be back in two hours to check me again, and decided that they would move me to the OR at 6am where I could finish my labor. they wanted me to deliver in the OR because it was a bigger space for all the doctors that would be at the delivery. at 5:30 i started feeling like i was getting close to pushing. they moved me to the OR. it was just me, scott, our doula and the nurse. i was shaking and puked. it was very glamorous. at 6:15 i wanted to push, but dr. devoy told me to wait until the baby descended further. at 6:30am i couldn't wait anymore. i needed to push. scott and our nurse held my legs so i could push. a few minutes later the nurse was calling the doctors into the room. he said "i can see hair". i couldn't believe i was so close to meeting the baby. i thought i'd be pushing for hours and hours. all of a sudden there were doctors everywhere, but i barely noticed them. i pushed a few more times and then all of a sudden griffin was there at 6:42am after about 15 minutes of pushing. he wasn't crying, he was just stretching in Dr. Devoy's arms. he looked a little dozed, as if we'd woken him up from a nap. he was taken to the next room immediately and scott followed to take pictures. then he was wheeled in to see me. it was so great to meet him. i held his little hand and was so happy. i'd never been so happy. i loved him immediately. he was adorable and i was so relieved that he was finally here.

Griffin Reed Westerman

born Thursday, January 20th at 6:42 am.

taking a little hiatus from the blog while we adjust to life in the NICU and as new parents

january

january is national birth defect awareness month. just thought you all should know.

the birth plan

another baby update. one of the final pre-birth updates, which is kind of exciting! we saw Dr. Wu on thursday, as well as having another NST and ultrasound. we discovered that my blood pressure is only high when i'm in perinatology (shocking!!), so Dr. Wu thinks I have white coat hypertension and just wants me to keep monitoring my blood pressure at home, but isn't too concerned about it. the ultrasound showed us that the baby is growing well (they estimate that he weighs 4lbs 14oz, he has a full head of hair, and a GIANT head!) and his intestines look "fine", so there is no need to induce earlier than we have been planning, which is wonderful. the plan is what we've been expecting since we found out about the gastroschisis. i'll be induced at 36 weeks to prevent any other issues from arising (a lot of times the hole can start to try to heal itself and pinch off the bowel that is outside... which is bad because then you lose bowel, and that's just one of the many issues that can happen as you get closer to full term, in addition to a higher risk of fetal death).

the plan: on monday the 17th i'll go to labor & delivery in SF for an amnio to test lung maturity. the results of that will dictate what occurs during the next few days. plan A: if the lungs are mature then i will come back to L&D on the 18th to be induced. plan B: if the lungs aren't mature i'll be given a round of steroid shots to jump start the lungs. the first shot will be given on the 17th, the second one given in santa rosa on the 18th, and then i'll be induced on the 19th.

the induction: the process isn't as simple as going on pitocin (a synthetic form of oxytocin, the hormone that contracts your uterus) and having the baby a few hours later. since the birth is taking place a month before it should my cervix is "unfavorable" (a horrible term that basically means my cervix is not ready yet). starting pitocin would give me contractions but it won't dilate my cervix, and that would be pointless, so we have to dilate my cervix first. the way Dr. Wu is going to do that is by giving me a synthetic prostaglandin (prostaglandins are produced by the body and help to soften and dilate the cervix), such as cervidil or prepidil, to start the dilation process. Dr. Wu told me that he won't start pitocin until i am 3cm dilated. he also said that it could take up to a few days to get me to 3cm. and yes, i'll be in the hospital the whole time. once i'm 3cm, we will start the pitocin (i'm going to ask to be started on a low dose of pitocin since it'll make the contractions come on hard and strong) and depending on how i'm progressing Dr. Wu might decide to break my water (which can speed up labor). that's the plan. we're not sure exactly which day i'll start the induction process yet, and we don't know how long it'll take, but isn't that the way it's supposed to be? we'd all be waiting and wondering if i was going to term, so why should this be any different? brianna said that other day that she didn't want to be hanging out at the hospital for "10 hours" and i was like, well that's labor! i'm hoping for 10 hours! that'd be fast. it takes a long time to get a baby out, and we have to be patient. our little boy has a lot to deal with when he is born, so he can take all the time he needs.

merry christmas!!

on wednesday we had our 32 week scan, toured the nicu (and labor & delivery), and met with my perinatologist, Dr. Wu and his colleague Dr. Todd. the tour of the nicu was great. i really enjoyed the tour of the nicu. we met with the social worker, Kathy and she made me feel at home there. she knew my case and told me that the nurses and neonatologists were all prepped for me and were just waiting for me to have the baby. it was very comforting. the nicu is a little weird, but it'll be home for awhile for our little guy so we have to get used to it. after the tour we went to my ultrasound and they estimated that he weighs 3lbs 12oz (plus or minus 9oz... i'm hoping it's plus 9oz). i was very happy about that. we want him to be a good size baby, and he'll be great by the time we get to 36 weeks! the tech even showed us the hair on his head! it was so cute.

after our ultrasound we had about an hour to wait and eat lunch and then headed up to the 7th floor to Dr. Wu's office. my blood pressure was very high (i was nervous) and because of that they want to monitor me to make sure it's not preeclampsia (side note: my blood pressure was high off and on before pregnancy, and just skyrocketed when i first found out i was pregnant. i've been on medication for the entire pregnancy). so, now i have to take my blood pressure twice a day (morning and night), keep a log of my readings and check off if i do or don't have other symptoms (swelling, swelling changes, abdominal pain, etc), talk to a nurse on the phone once a week to go over that week's log, and test the protein in my urine every morning. i also had to do a 24 hour urine sample that i finished yesterday afternoon. besides that the appointment was great. Dr. Wu wants me to have bi-weekly NSTs and come back on january 6th for another ultrasound and perinatology appointment. Dr. Wu told me we could do an amnio at 36 weeks or wait and just deliver at 37 weeks. we talked about how the UCSF doctors preferred i do the amnio and deliver at 36 weeks, rather than risk anything going wrong at 37 weeks. so, we're doing the amnio and if baby's lungs are developed then i'll be induced the next day. if they aren't we have two options: 1). do steroid injections to jump start the lungs so i can be induced or 2). wait until 37 weeks to be induced. hopefully we'll have great news about the amnio and our little guy will be ready. there's not a huge risk with an amnio so late into pregnancy. it WILL trigger contractions but most of the time they go away, and worst case scenario they accidentally break my water and have to induce me then anyway. so, now we just wait. they'll schedule the amnio soon and then we'll most likely have a date for induction (since i'm positive his lungs will be developed). it's all happening so fast. we'll have a baby the week of january 17th! i can't wait to meet him!!

baby update

(picture of baby at 28 weeks)

we had our NST (fetal non stress test) today and our little guy passed with flying colors!! auntie brianna got to see her little nephew for the first time when they measured my amniotic fluid. she almost cried when she heard his heart beat. she was also kind of freaked out because his heart rate is about 150 and she thought that was too high (it's a perfectly healthy baby heart rate). but we had fun during the extremely boring NST and i'm happy she was there. i also got to see him take big practice breaths, which was amazing! i'm so glad i got to see him breathing in and out. it's tough when you know you'll have a preemie, because you worry about having preemie issues (including the lungs being underdeveloped) in addition to the gastroschisis, so it was so nice to see him already working on developing those lungs. i felt like such a proud mom. we have our big 32 week scan on weds, and i'm sure i'll have a lot more information then.

sad baby day

i went to therapy this week. i had a session on wednesday, and it was a good, relatively cry free therapy session. i talked to this MFT (marriage & family therapist) for an hour about scott, our relationship, the pregnancy, our new house, this baby, the birth defect, the support group i'm apart of, our birthing class and how being around a bunch of pregnant people with normal pregnancies makes me actually feel like i'm having a baby with a birth defect (which i am), and everything else that's happened in the last 8 months of my life. i didn't feel that i necessarily needed to talk to someone, i'm very vocal with my feelings, thoughts, and emotions, but i thought it wouldn't hurt to go to therapy. and it didn't hurt. i was able to just talk, cry a little, talk about how frustrating this whole thing is for me, and it was nice to have someone tell me how i'm reacting to it exactly as i'm supposed to. we talked about how i get frustrated when people tell me i need to be "more optimistic" about the gastroschisis. i feel that i am optimistic about it all, i don't think my baby is going to die, but i'm very realistic about the situation and am sad for what he (and we) have to go through so soon after birth. she agreed with me, and it was nice to be reaffirmed for that. she told me that she was impressed with how well i'm handling all that life has thrown at me in the past 7 months and to keep up the good work. and that was nice. that said, i have sad baby days. and lately they've been more and more frequent.

let me explain what a sad baby day is. it's the term i've coined for days when i cry about the baby, about the gastroschisis, about the fear of the unknown, and the fear of what i already do know. the days i don't want to answer the phone (sorry people that call), when i don't care about someone's boyfriend/husband/children/school/work drama, when i don't want to fake a regular conversation because i just want to cry or be numb to my situation. i talked to the therapist about it, and she said it's perfectly normal and since it doesn't interfere with my ability to get up and live my life it doesn't signify depression (not that i was worried about that). sad baby days are usually signified by reading posts on the avery's angels facebook page. i love avery's angels and am so happy i found them, but sometimes reading what people are going through is hard for me. it's hard. sometimes i don't think i'm strong enough for this. i get angry and frustrated and upset about the gastroschisis. why do scott & i have to have a baby with a birth defect? why can't i have a normal, healthy pregnancy? why do i have to have a baby that i don't get to hold right away, that won't come home for who knows how long? why can't i just walk into that hospital 2 weeks past my due date and come out a day later with a brand new baby that gets to come home? why isn't my biggest issue worrying about the baby's first cold? sometimes i just don't know if i can handle this. i just don't know how i am handling this. i have no idea how i find the strength to deal with this. i know it's for the baby. but it's so hard. and the NICU is going to be the hardest part. and we're getting closer and closer to that, and i'm scared. and i just hope i'm strong enough for this.

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.

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.