Friday, July 30, 2010

always & a little random

My wedding rings haven't fit for a while. On the first day of school at the new job I got them on but my finger was immediately purple. After wrestling it off I decided to think about an alternative. Some people go for cubic zirconia but I quickly remembered reading something about an adjustable wedding band for expecting mommas.

I got my ring last Friday. We were able to choose from a variety of phrases.

Sammy will *always* be:
~my first pregnancy (first morning sickness, first kicks to the ribs and bladder etc)
~our first baby
~our son who changed our lives and made us "mom and dad"
~held tightly in our hearts
~the baby we want to talk about, all the time

And this Friday we received all the love Nanna Shelly made for Sammy in the mail. His blanket is pictured above, his name is embroidered on opposite sides. The hats are so soft. I know we chose the yarn based on softness but I forgot until I was holding them today.

I don't have much else to say today. I got out his little clothes to put next to the blankets and then I kinda lost it. The clothes are so cute and small...I should have a dresser full of them. *sigh*

I also wanted to mention, for the record, that Sammy is quite active. I don't know what normal is but a couple people have told me babies like Sammy generally move less. If this is less, I don't know how women get any rest or accomplish anything during a "normal" pregnancy. I swear he kicks to let me know he's hungry (every couple hours I get a reminder to eat). And while I don't wake up from the kicks, on my frequent trips to the bathroom at night I often fall back asleep feeling rolls and kicks. Other people have blogged and written about the timing of some kicks...just the other evening as I was sinking into a pity party about how I will spend a majority of my life holding Sammy's ashes instead of holding him I swear he Chuck Noris-style round house kicked me in the ribs. Even as I typed that he got a good jab in. *smile* It definitely brought me out of my pity party and into appreciating each and every moment I have with him.

I would like to ask you all to pray for my friend J and her family. Tuesday afternoon they laid their 4 month old baby girl down for a nap and she did not wake up. Another high school classmate and his wife gave birth to their baby boy at 28 weeks. Baby and mama are doing great but they are still on a road of recovery for a while.

All this along with Sammy's gets a bit heavy at times so thanks for keeping us all in your prayers.

Wednesday, July 28, 2010

twinkle, twinkle

Last Friday I arrived home to find two large, thin boxes inside our gate. Dave's new hobby involves some sending and sometimes receiving mail so I grabbed up the boxes and headed inside. I then noticed that they the boxes were addressed to both of us. So I opened them. :-)

My future sister-in-law's mother had a star named for Sammy. It was the first time I saw the name "Samuel Lucido" in print, on a framed certificate about the star and on a small wallet sized card for us to carry. It's so permanent. I teared up and soaked up the sight of his name.

It could not have been a more perfect gift. I told Dave there was a surprise waiting for him at home and he had the same reaction. As we stood looking at it, I noticed that the framed certificate was dated July 21. Our anniversary. I haven't asked if Joanne planned that when she requested a star be named for Sammy. Either way I think it's amazing.

I just love how intentional God is. Sometimes I think we're too busy to see it or just not trusting that the Lord would care about the details...I'm still working through why I chose to stress and run in a big circle to find this great doctor right under my nose but I think that can be part of missing God's intentionality. I mean, I started this pregnancy with Dr. M, switched to Dr. W when I wasn't comfortable with Dr. M, and then forced to "find" another doctor when Dr. W quit delivering babies. Would I have ended up with Dr. v if I had stuck with Dr. M?

At the point I decided on Dr. v I was praying for direction and had asked all of you to pray with me for clarity and direction. Getting in touch with the 3rd or 4th doctor since starting the search, I was finally given some solid advice and trusted that it was an answer to prayer so Dr. v we chose. I was still uneasy heading into the appointment but it obviously turned great.

I guess what I'm taking from all this today is that when I pray and am seeking an answer, I will be given one. Deep? Not so much. But a reminder that I needed.

I do think having the certificate dated July 21 is just one of those bonus "I love you's" from the Lord. Whether or not Joanne planned it.

Amelia Grace Lorang

Please keep this family in your prayers. Amelia was diagnosed with anencephaly at their 20 week ultrasound and today (@39 weeks) was her birthday.

Amelia Grace Lorang: Amelia Grace Lorang

Saturday, July 24, 2010

exhale *ahhhhhhhhh*

It's been a busy few days. I'm finally sitting in our big brown chair for the first time since Wednesday and it feels great. Thursday morning I was hoping I could title this post 'exhale'. I guess I've been waiting to do that for a while. For at least the last 8 weeks we've known we needed a new doctor I guess it's like we've been holding our breath.

So. Dr. v - not Dr. B. was right under our nose the whole time. Thanks for all your prayers!

Thursday morning we waited for quite a while and then got escorted to the new dr's exam room. He started by measuring my belly, after a quick glance, he questioned if I was even pregnant - ha ha - and went on to measure me and we are right on track for 30 weeks. I was nervous that I had grown a bit much in the last week and had been reading a lot about other mama's like me who have ended up with excess amniotic fluid and need it I was paranoid but turns out this is how big I am supposed to be and apparently how uncomfortable I am supposed to start feeling.

Dr v found a quick heartbeat, felt around for Sammy's head, let me ask a few questions, and invited us to his office to finish the visit. He started by getting an idea of what kind of birth we have in mind and offering us basically the birth of our choice (vaginal or c-section). We talked that out a bit and Dave and I have a few more decisions to make in the next couple weeks.

He then prefaced what he had to say next with "I don't want this to sound cold or calculating, and I don't want you to feel like an oddity" to which I responded "But I am, I understand that." He kind of nodded in agreement and went on to mention that there are a lot of medical students and residents at the hospital. He said they wouldn't be making any of the decisions and kinda trailed off because Dave and I were already nodding our heads. Dave spoke first and assured him we would be ok with residents or medical students observing Sammy's birth. Dr. v said something to the effect of "they will learn a lot, knowing the difficult decision you have made and experiencing it along with you". Only he said it much better than that. I was very impressed with the way the doctor said everything really. There was never any pressure to make a decision, he very subtly offered choices straight up.

I am soooo happy to be able to offer this opportunity to the doctor's in training at the hospital! I will be praying even harder for a peaceful, God filled delivery.

I asked if the hospital has a comfort care plan for situations like this and they do not. Dr v assured me the nurses will be made aware of the situation and I countered that I have been researching and making a comfort care birth plan. He said bring it in and he would make sure it got to the nurse educator and nurse coordinators. *awesome* I will be praying that somehow this can encourage the nursing staff to keep a comfort care plan around in case someone else needs to use it.

The last thing I asked, which of course made me cry, was about a referral to a funeral home. I asked about talking to a hospital social worker or if he could refer us. Again he answered in his subtle way about having buried a child and parents that he could recommend a funeral home to us.

So all in one appointment our biggest and hardest answerable questions were answered.

As we got up to leave, Dr. v apologized for the technical nature of our visit and said the following visits wouldn't be so rough. I assured him it had not been a rough visit, that I was ok with crying in front of people if it happens...explained to him that my mom is a hospice nurse that routinely tells me to feel what I'm feeling and just be. :-) I said it's other people who get uncomfortable when I cry, not me.

So yeah, wonderful visit. Dave mentioned Thursday afternoon he felt like a weight had been lifted. And I truly felt like I could exhale for the first time in a couple months.

Thursday, July 22, 2010


Quick update - detailed post coming later...

Our doctor's appointment went very well this morning! The new doctor (Dr. v) is definitely an answer to all our prayers. Thanks to everyone who prayed!


Tuesday, July 20, 2010

the first of many...

Tomorrow is our 3rd anniversary. Our wedding was fantastic and we've done a good job celebrating each year. Dave just made a plan tonight for us to celebrate tonight and this weekend - I'm really looking forward to our plans.

buuuuut. If I'm completely honest, it's also one of the first *big dates* we'll pass. I've had our anniversary marked on my calendar all year and after I got pregnant I went through my phone and added the big week markers (14 weeks - end of first trimester! 27 weeks - end of second trimester! 30 weeks - 30 weeks!). After the ultrasound I went back through and deleted many of the was my first reaction, get rid of the *normal* reminders for a *normal* pregnancy.

I can't erase this reminder though. It was supposed to be our last anniversary as just the two of us. After this one we were supposed to look forward to them as one of the few yearly "mandatory" date nights...just having time away to talk during a grown up meal out...

It feels a little self indulgent to be sad a year in advance but that's where I am today.

Please keep our appointment on Thursday in your prayers. I am trying to be optimistic about meeting the new doctor but I'm ready to fight at the same time. Please pray that it will be a peaceful appointment for all of us.

Monday, July 19, 2010

"are the clothes for you?"

A couple weeks ago I found myself thinking about what kind of little boy Sammy could be. Although I basically grew up on a farm, I am not a bug, spider, or small creature lover. Unless that small creature is a dog or cat. Turns out, my city boy husband is quite the bug, spider, and small creature lover. On more than one occasion I have been presented with a specimen in a jar "Look! It's so ______!" (huge, green, spotted, etc). There will forever be the infamous 'gecko' story of August '07...Thankfully, he's beginning to understand that for a non-lover like myself, a phone picture is good enough for me to appreciate which ever amazing trait the latest creature has.

As I was thinking about Sammy and his dad, I came to the conclusion that Sammy would have probably been right there along with his daddy, admiring the critters and creatures of the great outdoors. I hardly want to imagine what kind of pets we would have collected to satisfy both Sammy and daddy's curiosity.

These thoughts came in handy when it was time to shop for Sammy's clothes. Wanting to feel prepared before heading back to work, I decided to head into one of my favorite local baby boutiques and look for some clothes. I don't even think I bothered with make up that day. I had done some looking online for newborn or premie* clothes but I'm a hands on, bring it home with me now girl, so I had to check out at least one shop.

*anencephalic babies are often on the smaller at birth even when carried to term, at least that's what I've been told, plus, he could come at anytime*

There are a few reasons that we hadn't already started buying baby stuff but I think it was the Lord's protection too. Ya'll, I don't know what I would have done if we'd had any kind of nursery set up. I mean, we had purchased a couple packs of diapers and we had been given some baby carriers. Trust me, they were the first things to be tucked out of sight the week of the ultrasound. I, of course, had a spreadsheet of things that I thought I would want...I had tried to get Dave to pick out an outfit with me but he really wanted to wait until we found out the sex of the baby. I just don't know how people handle taking apart a crib...I did order a unisex blanket online and some cute little girly booties (I couldn't resist and everyone thought I was having a girl) for Christmas when we had plans to be in Minnesota but turns out the company I ordered from had a warehouse fire and they had to refund my money.

All that to say, we needed clothes for Sammy. I knew this particular shop would have a brand that carried "Itsy Bitsy" premie clothes so I headed in. There were 3-5 workers just hanging out talking about the shows on Bravo while I looked for some small clothes. At one point a worker dude asked if I needed help and I asked about premie clothes, he directed me to a couple different places they might be stacked around the store.

My brand had a few little sleepers in different bright colors, one specifically with alligators...then on another table I found a sleep sack type thingy (official term, I'm pretty sure) that was all white with a little green 'gator on it (that just so happened to be reeeeaaalll close to the color of the greens in the hats). I was feeling ok, but not sure if I needed to purchase both, but I love bright colors but I love matchy matchy clothes and hats...I was conflicted. And then worker dude tried to help me again. This time asking a question he'll probably think twice about asking anyone else.

Worker Dude: "So, are the clothes for you?"

Me: eyes widening ('cause you know, if you open your eyes real wide, the tears won't spill out) *nod my head, can't talk*

W.D.: "ooh, he's still in the hospital?"

Me: *shaking head, trying not to crytalk* "No, it's just, he's not going to live long after he's born." *look up to the ceiling with wide eyes, wipe tears* ('cause if you look up, the tears spill slower)

W.D.: "I'm so sorry, I'm so sorry. You don't have to talk about it if you don't want to, or you can..."

Me: "I'm just gonna get both." *head to register hoping for a smooth getaway*

It's just not the way it's supposed to go.
Picking out clothes for your baby is supposed to be fun.

I'm glad I did it. Dave even approved of the choices...alligators for the animal lovers, and cause wherever we are it will remind us of New Orleans.

Friday, July 16, 2010

hats and a blanket

*edited to add pictures*

So I knew when I went back to work my motivation to do things in the evening would decline and I tried to get as much done as I could to prepare for Sammy's birth. I can get through much of the planning that any birth would require...or at least I can convince myself 'we would do this anyway' so it makes parts of the planning seem easier. Hat's were a pretty safe place to start.

Before we knew boy or girl I had visited one of my favorite websites, Etsy, and fallen in love with the little crocheted hats. It's something my Grandma Scrabeck would have done, in fact, I'm pretty sure I stashed some booties and a crocheted yellow cardigan somewhere as we sorted through her finished products back in 2001 after she passed away. But in Grandma's absence, I commissioned my mom to make a couple hats. Turns out those hats will be pretty great to have for pictures. While we were in Minnesota, Dave, my mom, and I spent some time at the craft store picking out yarn. It had to be the softest and absolute perfect shade of each blue, brown, green and white. We found patterns on line, Dave had a fav, I had a fav and my mom had a couple fav's so I think there are 4 little hats now finished and hanging out in Minnesota.
Sammy's hats - can you guess who liked which hat?

Some of the first advice we got in preparing for a limited time with our Sammy was to sleep with a blanket that we picked out for him so he could be surrounded by us from his first moments after birth. I loved that idea and my mom offered to make a blanket. We picked out that material the same day as the yarn. I think we did a super job, pouring over quilt magazines at the store to find a perfectly simple pattern. The front side is minky soft material in brown, blue, and white and the back is a modern pattern in blue, white, and a great green.

The blanket is already special for 3 big reasons:
1. Nanna Shelly made it (that's what my fur babies call my mom)

2. Secretly - I will always remember the super sweet and tender moments when we picked out the material it became obvious once again how much Sammy is loved by his daddy (misty eyes and all)

3. It's also rumored that when my little bro visited my mom in MN he spent some time lovin' on the blanket as well. I love that it will be so loved before it's wrapped around our baby.

front of the blanket
back & front of blanket

Yeah...this was kinda backhanded planning. Dave and I picked out the raw material but the real prep was done by someone else. Hmmm.

I'm struck by how "the real prep" for this whole situation was done for us before we could have planned for it. From the amazing husband the Lord blessed me with, to the blogs I have read over the years with stories similar to ours, and even down to the music the Lord led me to right before I found out I was pregnant that has helped me through some of this...that's some orchestrated prep.

I bet this is another growth point where time will provide more evidence of God's preparing us before we even knew.

Wednesday, July 14, 2010

rough day #...

...I don't know. Don't wanna count.

I used to be able to pinpoint why I was feeling a certain way. Or really I guess I had a norm and if I was not acting the norm I blamed my monthly cycle of hormones or stress for the craziness. Pregnancy threw a wrench in that, you know, crying about Lady Gaga songs on the radio or Intel commercials on TV. Add to that the crazy that is grief? And starting a new job (even though I love my new job it's an added layer of stress)? I can no longer pinpoint or blame any one thing for my extreme emotions. I am, for the sake of those around me, trying to verbalize when I know I am acting extreme.

Anyway, as my coworkers were sharing their "life maps" I found myself holding back tears as they shared the important events that led them to New Orleans and our school. I *do* come from a family of cryers, mostly on my dad's side, but I could tell it was just an emotional day. Because of pregnancy, busy at work exhaustion (expounded by pregnancy?), or weakened emotional state because of grief??? Doesn't matter I guess but it was an interesting day to get a thread of emails in my inbox dedicated to another mom's anxiety about her anencephalic baby's due date approaching.

**side note - my fantastic mom found an online support group for mom's carrying anencephalic babies to term, which is where I got these emails and where I get lots of information from families who have gone through it or are going through it.**

I feel that pressure too. Tomorrow will mark 29 weeks that I have been carrying Sammy! I swear this turn over to 30 will feel equally important as when I myself turn 30 *years* old. For Sammy it will be the start of a count down. We will meet with our new doctor next Thursday (July 22nd) and hopefully make at least a loose plan for Sammy's birthday. This is where the planner in me can fights the hoarder in me that wants to keep Sammy kickin' in there forever.

If you think of us, keep us in your prayers. As we wade closer to Sammy's due date that we are able to find that peace...if it means crying every night until he's born, I would do it so that I can enjoy those moments we are hoping to get with him.


Tuesday, July 13, 2010

another kind of peace

I recently wrote about a deeper feeling of peace when I was in the middle of a deep ugly cry. A couple Sunday's ago the Lord showed me another side of peace and the power of prayer.

There is another pregnant woman at church who just happened to sit down next to me. Last I knew, she was due at the end of September, just like me. So there in the middle of praise and worship I found myself fixated on the fact that this woman will get to take her baby home with her and I won't. I finally decided that I just needed to step out of service and deal with the emotions instead of wiping away the tears that I couldn't completely bottle up.

I stepped out to the restroom and just cried. I ended up in the sitting room before the bathroom trying to get a hold of myself. I felt bad for being distracted during worship. A wonderful woman from the church came into the restroom, following the Spirit's leading to come and pray with me. She began praying for me, mostly for peace and comfort. I did not explain what the struggle was, just sat and agreed with her prayers. Honestly I didn't believe that the prayers would be answered but within minutes I felt that inner calm and was able to return to the worship service and sit in my same seat.

I had another opportunity to use that experience last Thursday. I made a phone call to Wendy and felt courageous enough to finally ask for a funeral home suggestion. I know her husband is a pastor and has some experience with funeral homes in the area. It's one of the last details and makes me cry every time I think about it. Well, I made it through the conversation but as I returned to our training session at work, I again felt fixated on how unfair it is that I have to plan a funeral for my baby. The training session was on parent involvement...the presenter kept saying things like "parents do what they think is best for their children" and "parents want the best for their children" and it felt like a twisting knife that I can't do anything to fix this for Sammy.

I finally stepped out of the room and headed to find some tissues. Thanks to the answered prayer on Sunday I was able to talk myself away from hysteria. I focused on how planning a funeral is taking care of my baby in this instance and prayed for that complete peace that passes all still hurt but it was enough to calm me down and let me return to the meeting.

Today I am in awe of the depths that the Lord will take me to in my understanding of His presence and provisions. Does that make sense? I'll be expounding on this as time goes by since it seems to be a theme...I mean, trust me, it's a weird co-mingling of toddler like tantrums and this "depth".

I don't even know if depth is the right word but I think I use it because I'm listening a lot to "How He Loves" by the David Crowder Band - "if His grace is an ocean we're all sinking" - I love the picture that paints, completely surrounded by grace, or whatever I need from the Lord, whenever I ask. Whether or not I feel it, whatever the it is (grace, love, peace), the Lord provides. I tend to believe that as I trust and hope for those things to become reality, I will feel them as well.

ahhh - tangents. Need to get some supper, Sammy is quick to let me know when it is time to eat.

Monday, July 12, 2010

Just wanted to send a quick update before I head to work today.

Looks like I will be sticking with the first hospital. *shrug* I talked with the midwife Friday and she was able to give me some information about the two different hospital systems that seemed to make it clear in my mind if I was gonna have to fight someone for what I want the 1st hospital would be that someone/something to fight. She felt I needed to stick with an OB/GYN because there is *some risk* and said that the doctor my current OB is referring me to is great.

So today I will NOT be meeting with a new doctor at the new hospital. I will be trying to get an appointment with Dr. B at my current OB's office. We will most likely be working with Wendy on some one-on-one birthing classes and possibly using her as a doula (natural birth coach, although we both agree natural isn't the top priority in this type of situation).

I can't wait to look back on all this and have figured out why I had to go in this enormous circle. SMH (shaking my head)

Prayer praise! We got our bill from the second opinion ultrasound in MN and it was covered by insurance!

Prayer request - please keep Dave in your prayers, he had a bunch of dental work done on Friday (bone graft, cutting, stitches, blood, ew). He is healing nicely but it hurts and he is still in a funk of sorts.

Wednesday, July 7, 2010

back to work...

I started work yesterday! Crazy. I know I can't really fuss or complain when most people have to work year round, but for teachers, July 6th is reaaalllly early. We had to start this early because we are a brand new school (not the building though) with brand new staff and administration. We are spending lots of time getting aligned to our leaders mission and ideals and eventually planning out what we expect our school to look like. So far it's been great. We have shorter days this week and are easing into the full day schedule.

It looks like I might have another option for a midwife. Wendy called me back today and left a message that her midwife friend was willing to take us but she wanted to check first with her back up doctor. So could you all pray with me for discernment on who to choose? If I can feel good about one or the other, I would hope it to be before Monday's appointment where we will be having another potentially-expensive-to-us ultrasound...I just don't know if insurance will pay for 3 expensive u/s in 8 weeks. I understand why the dr wants one, but I don't know if the insurance company will understand (or care).

I really wish there was a "doctor game" game know, like the dating game? Based on their answers I could choose my doctor from a panel of qualified doctors. *sigh*

Sunday, July 4, 2010

where to begin...

Tomorrow I start a new job, 27 weeks and 4 days pregnant with a baby boy who has been diagnosed with severe anencephaly (much of his brain and skull did not develop). Anencephaly is a fatal open neural tube defect (ONTD).

I am super thankful for this new job. I am a teacher and although it will be awkward to start the year 6+ months pregnant knowing my baby won't live long after he's born, my new administration has been amazing and I am not even nervous or stressed about tomorrow. We'll see how I feel in the morning though...

My husband, D baby as he is known in my phone, and I decided to name our baby Samuel David "Sammy". We talk to him daily, read him books nightly, and strive to enjoy every moment we can with him.

Seven weeks into this journey I have found help in all corners of the United States. Old friends, new friends, and family with experiences similar to ours have been a tremendous help and encouragement. But here in New Orleans, I struggle to find these people or resources to help us through this. So I am starting this blog. Hoping that should someone else in New Orleans area walk the path we have chosen, we can be a resource and source of encouragement.

It's also a blog for me. I have found solace reading baby loss blogs and blogs of mother's carrying a baby with a fatal diagnosis to term. I have also thought of starting a journal or letters for's to some cheap therapy.

I'm going to back date and post the emails I have sent out over the last couple of months. I send them to my prayer and support team, prayer is the best support we can get from everyone around the country.

Thursday, July 1, 2010

P&S #11

Tuesday ended much better than it started. Thanks for keeping us surrounded with prayers!

Old hospital system - I've always liked one of the nurses in my doctors office and she really pulled through once again. I gotta figure out a meaningful way to thank her. She called me a couple times Monday and then again Tuesday to reassure me there is in fact a doctor in their office that will take over my and Sammy's care. This was after she asked why I was having records sent to the *other* hospital system and I think I responded rationally, obviously a bit emotionally too though, with my overall frustrations about my experiences.

I feel like there was some miscommunication between the staff that resulted in miscommunication with me and led to all this craziness. I don't know why it had to go like this. But it was good to know someone would take care of me and Sammy.

New hospital system - As I sat in the middle of a pedicure yesterday I found myself explaining my understanding of the situation to a nurse at the new doctor's office. "I will mostly likely carry to term, but my baby will...die...soon after birth. Or he won't make it to term." Unreal. I guess there was confusion about why I was sending records (interoffice miscommunication at the new office) and what I was expecting to gain from meeting with a new doctor. So I tried to nicely explain why I had a second opinion in Minnesota and why I was trying to switch doctors at this point. I guess I didn't sound too crazy so we have an appointment on July 12th with a new doctor.

This office has 4 doctors and 2 nurses. Nurse Connie said I would probably see all 4 doctors at some point so that I would be familiar with whomever was working when I go into labor. Sounds good to me if they can all handle this situation. We're going to this appointment with a list of questions that should give us a good idea if they will be any better prepared for us.

Specific prayer requests:

- always for a miracle healing for Sammy

- that the new doctors will be prepared for and sensitive to us and our baby

- I really do want a vaginal birth if at all possible (it'll depend on Sammy's position at that time) so let's start praying that he's breech - the best position for anencephalic babies.

- let's pray that if the new doctors don't have a system set in place for birth's like ours, that they will be open to our *demands* :-) I have a birth plan in the works, which seems high maintenance to me (I don't like feeling high maintenance), but also feels needed.

- I often thank the Lord for His help this far, let's make sure to bless and praise His name for His caring and attention to all the details

Thank you, thank you, thank you