Tuesday, June 29, 2010

P&S #10

An answer to our prayers...but not in the way that I expected.

I got a call back this morning from Dr. R's office and she is not taking any more high risk patients this year (felt like an excuse)...Dr. W (current OB) never mentioned that I would need to find a specialist or that this is considered high risk. The nurse on the phone said "Didn't Dr. W give you a list of doctors to try? You should call her nurses and get a list." Done. I am done with this hospital system.

I had only been awake 10 minutes or so and I gotta say this could have ruined my day. I have not ugly cried like I did after that call - ever in life. I hung up and feeling like no one wants me or my baby. I don't know why the hurt is so deep but it really is.

And yet I knew that everything is going to be ok. I wanna say it was a peace that passes any understanding, as loud and ugly as my crying was, my heart had peace. I will find a doctor, no matter how ridiculous the road to getting there may be.

I'm learning a lot about the Lord through all of this. His ways are definitely not my ways - and while I thought I understood so many stories and verses in the Bible going through this has given me a whole new appreciation for many of them.

I wanted to crawl in a hole after that call, but I have too much to do today so I went about my chores. I thought of Mary - the woman who was an outcast to society yet she worshipped the Lord anyway, with people watching and judging. I feel overly dramatic feeling a connection to her story, this is only 5 months of my life - not an entire lifetime of being cast aside, misunderstood, or hard to relate with. But I immediately downloaded the song Alabaster Box by Cece Winans and understood to a new depth how we should never judge someone's praise because ya'll, we just don't know what people have been through, or are going through. I've always loved the song, tear up every time I hear it. It brought me a piece of healing of today. I know the Lord is with me, I felt His peace as I cried and fussed at Him, I will praise Him - no one knows how it feels it when He wraps His arms around ME. As much as anyone wants to help, there are some things only Jesus can do and I will praise Him for it.

Cece Winans - Alabaster Box - http://wwwyoutube.com/watch?v=Uq8VP9osGrg

One of Dave's coworkers mentioned a Maternal Fetal Medicine (high risk) doctor at another other hospital system who was great for them, so I called the MFM office and they told me to get my records faxed to them and they'll look 'em over, and get an appointment set up. It was an easy call to make, I hope this will be the beginning of the end of my search for a new doctor.

Thanks for your prayers - I had to share how they were answered today.

Monday, June 28, 2010

P&S #9

The weeks are really flying by! I was just looking at when to plan my first appointment with my new OB and it would be the end of July the week I turn 30 weeks. Jeez...it's going fast I'm gearing up to start work next week, feeling the heat of finding a new doctor (none yet), and feeling the general heat of New Orleans. I finally broke down and bought a maternity swim suit last week so I could get in a pool with out scaring the other swimmers and it was totally worth it.

Hmm. I don't feel like I have a ton of news. I haven't heard back from Wendy, tomorrow it will be a week so I may try her tomorrow. A member of a support group (more on that later) I joined online suggested a website to me that led me to a pro-life doctor who I found it is no longer delivering babies, but through my new principal (more on that later) I was referred to *another* doctor in that same office who is supposed to be amazing. I worked up the courage to call Dr. R's office this afternoon and leave a message with her nurse explaining my situation and that I was looking for a doctor that would be comfortable with it. Either the doctor or the nurse will call me back tomorrow. I've kind of unofficially called this my current hospital systems' last chance, all the doctors I've been in touch with or tried to work with have been within this hospital system. If Dr. R chooses to pass on me and Sammy I am going to try the other big hospital system in town and see if they will step up.

The group I joined is an anencephaly support group and it's been great. I introduced us at just the right time to get a picture of Sammy's name drawn in the sand by one of the parents from the group. I didn't know she had offered to do it and was pleasantly surprised when I found his name in the pictures. The people in the group are wonderful - lotsa recent stories but also a few parents who lost their babies in the 70's and 80's. One family got to spend 6 days with their little girl before she passed. I'm not super active with comments but I read a lot of other people's stories.

I finally caught up with my principal today and she was wonderful! I was happy to get through the explanation with only a hint of tears in my voice. She seems to be understanding and laid out a plan with an associate teacher that should I need any days off before Sammy's born "just because", it will be covered by this teacher. The associate teacher will also be the one taking over when I have maternity leave. The principal even offered to send out an email to the entire staff ahead of time so that next week I don't get too many "Oh - how exciting! When are you due?" comments. I hadn't even thought of a pre-emtpive email. I think I'll be thanking God a lot for this job even if it seems to have come at an awkward time...

I remember a time (kindergarten) when I didn't like reading. And I don't know how, or when, but the rest of my elementary years and going forward I know I have loved reading. I have a style that I like, but will read anything if it will occupy my mind or is the least bit entertaining. All that to say, I love blogs. I don't know when I discovered them, but somehow I did and often refer to a story from "this blog I read". There are 2 recent finds that I want to share with you before I get back on track about reading...

1. Dear Stevie: http://dearbabycook.blogspot.com/ - this blog started as letters to her baby, who was stillborn at 26 weeks...I can relate to much (not all) of her grief and she writes really well. I can't read her blog without ending up a crying mess.

2. Molly Piper: http://mollypiper.com/2008/03/how-to-help-your-grieving-friend/ - she lost her baby at 8 months..went in for a check up and there was no heartbeat. Through this experience she wrote some short blogs about how to help a grieving friend. Read it - I promise they are good.

Ok-back to reading...I shouldn't have been surprised when early one morning I woke up, startled, because I realized at some point in my sleep that we have not read to Sammy. I have bought so many books over the years, knowing they could be used in my class and at some point with my children. I'm not sure why it took so long for me to think of it and then I received an email from someone encouraging me to enjoy all the small things with Sammy, including reading him a book. So we did. I had Dave choose the books and they were books I would not have chosen but we have plenty of time to read others, so I didn't sweat it.

I read a book that I bought for my Rainbow's (church) class a few years ago. It's called "A Heart for Jesus" and explains what it means to give Jesus your heart. I was choking back tears as I read the words of a mother describing to her daughter what it means to give Jesus your heart.

"I didn't give Him the heart that beats in my chest. I gave Jesus my feelings, my thoughts, my ideas, and my wishes...He never runs out of joy, courage, patience, or strength...You give Him your feelings - He feels with you. You give Him your thoughts - He thinks with you. You give Him your ideas and wishes - He helps you make those wishes come true."

We read Sammy his first book and it could not have been a more perfect reminder for me. Whether I know it or accept it, Jesus is always there feeling with me, holding the answers and solutions out for me. I think the answers right now are peace, strength, and humility. At least that's what I feel he's offered, I'm sure there are a few more if I slow down and listen. I think the next morning I woke up knowing we had to go to the fireworks on the 4th - I love fireworks and Sammy needs to experience it. :-)

Whew. Guess I found some stuff to write about after all. Please continue praying with us as I search for a doctor. The task often feels overwhelming and unfair...Of course keep praying for a miracle and that we will be prepared no matter what the outcome. I figure sometime soon we will need to figure out how to find a funeral home to use...that's a to-do list check off I never wanna make though.

Please feel free to email us or ask any questions...I promise Sammy is never far from my mind, I'd be surprised if you could ask something I haven't already thought about.

Thank you for all the prayers! I can't say it enough.

Tuesday, June 22, 2010

P&S #8

We're finally back. It was a sad last day in Minnesota as last Thursday night tornado's ripped through the my hometown, destroying hundreds of farms and the livelihoods of the people there. With everything that is going on with us and personally knowing the people who built, worked, and lived on these farms their entire lives only to see it all reduced to rubble in a matter of minutes, I continue to be humbled. I'm quick to think "I can't believe he/she said/looked/did that to me! They don't know what I'm going through right now!" and I am quickly reminded that I don't know what is going on inside people's minds and hearts either. It feels natural to go through life focusing on our own problems and thinking only about how to solve them but at the same time it's like opening this wound in my life has made me see that anyone can be walking around with wounds.

Wounds can be different, depending on how they were acquired, some more debilitating or deeper than others but a wound is a wound. Sure a paper cut hurts less and for a shorter time than say stubbing a toe, but in the moment of pain it doesn't seem to matter that some other pain is worse...I hope that through all this, I can become more sensitive to the fact that we all lead complex lives with complex issues. In even the most mundane interactions I hope to be gracious and thoughtful about how I respond and react.

*end tangent* :-)

Yesterday we had another routine appointment with my OB here in town. I made it through with no tears this time! And it was bring-your-new-baby-to-your-six-week-postpartum-appointment day. Lotsa cuteness in that waiting room. Thankfully I had something more important to focus on, my chipping fingernail polish. It had occurred to me the day before it could be a good distraction from looking around the waiting room but I really did mean to take it off...I'm happy to say I've only gained 3 pounds so far! And sad to say it's because Sammy picks and chooses the days he wants me to keep food down. Last night he had the audacity to kick me *while* I was curled up in the bathroom. Is it ok to admit I wish I could remind him forever how sick he made me?

Anyway - appointment went fine, and I was supposed to start searching for a new doctor yesterday but awesome AT&T was having service issues in our area so no phone. I took a nap instead. Sunday night I was reminded of a phone number I was given a few weeks ago of a woman who is a doula or midwife and decided I would call her first. Turns out she is the Pastor's wife at one of the many churches we tried out before we found our current church. So I felt she would understand and hopefully be able to refer us to a good doctor.

We had a chance to talk this morning and I am VERY encouraged. Wendy is going check with a midwife friend of hers (don't know her name, I'll call her MW for now) about her qualifications to deliver in situations like this. MW practices in the hospital system my current OB is in so that would hopefully make transferring care easier? We'll see. Wendy is not a certified doula but could play that roll if we need it

Another concern we have had is what to do about birthing classes? Wendy seemed to know quite a bit about how it could play out for us, reiterating information we got in Minnesota, and is willing to look up more information. I told her we would be interested in some alternative birthing class type information since we'd rather avoid the typical birthing class and she seemed willing to meet with us. So, yeah, encouraged.

Thank you for all the emails and prayers! I am encouraged each time I read about another prayer lifted up for Sammy and rest of us.

Tuesday, June 15, 2010

P&S #7

Sorry this has taken me so long to write. My mama is doing a good job of spoiling us and the days are just flying by. We had a great time in Michigan and have had a chance to see almost everyone here in Minnesota The pups are enjoying their time too, an almost endless amount of playing fetch and lots of cuddling time.

Last Wednesday. We started off the morning at Children's Hospital in Minneapolis seeing their perinatal hospice nurse coordinator, Jody and a social worker from her office. This was the hardest part for me, going in to see people and talk about the day our baby is born and will most likely also die. Jody was phenomenal. She was a midwife at some point before she took this job so she really understood the birth process and also had experience with mama's and their anencephalic babies. Between Jody and the social worker they offered to help me find a doctor in New Orleans (through their hospice network) that will be willing to work with me as Sammy grows and the pregnancy progresses. They even offered to coach the doctor or midwife and whatever hospice group they can find! They will do this without charging us or our insurance - amazing. Before we left they gave us a little quilt that volunteers made for people utilizing the hospice services and a baby book designed by a mom who found commercial baby books didn't fit situations like ours.

We grabbed a quick lunch and headed to our second opinion appointment. The sonographer was great in a different way this time. She knew it was a second opinion appointment so she was able to talk us through the whole ultrasound explaining what she was doing...I have no frame of reference for situations different than ours, but for us spending that time watching Sammy wiggle and move was priceless. I get to feel him moving every day but to see him was just great. She took lots of pictures!

The doctor (Dr. E we'll call him) that we saw after the ultrasound was great. He had to be in his 70's somewhere, started delivering babies in the 1960's and had experience with delivering anencephalic babies. Dr. B explained that when the "good" ultrasound machines started being used around 1975 anencephaly was one of the first diagnoses doctors could confirm and Sammy is a pretty clear case of this. We then got to spend the rest of our time with the doctor asking about his experience with pregnancies and deliveries of other babies like Sammy.

Next we went to see a genetic counselor. According to the doctors report from our first ultrasound in New Orleans, we had received genetic counseling. At some point during the doctors' explanation he mentioned it was not really genetically influenced and that was *apparently* the counseling. *thumbs down* So it was great to talk to a true genetic counselor about some of our concerns that the other doctors we had talked to could not or did not address.

Again I'll use bullet points to share the new information that we learned:

  • Sammy is measuring right on track - 24 weeks at the time of the ultrasound, still growing (as is obvious by my growing belly) and everything except his brain is functioning normally.
  • Sammy is camera shy! We couldn't get a good profile or face shot because he kept his hands and arms over his face. I was rolling all over on that table trying to get him to put his hands down or take his head out of my hip but nothing worked.
  • Both Jody and the doctor agreed that in their experience organ donation just doesn't happen with anencephalic babies.
  • Dr E has delivered anencephalic babies throughout his career. Mostly because back when he started they had little way of knowing anything was wrong with the baby until he/she was born. He said the pregnancy will mostly likely carry to term, Sammy may be smaller (5-6lbs) at birth, and he'll continue moving and kicking like any other baby before he's born.
  • It seems there is no genetic testing needed? Unless we want extra piece of mind for future babies, they could do some testing after he's born...I'm still confused about this, it's not genetic but it could be? Genetics, poor diet, or siblings procreating will increase chances of anencephely...and chances of reoccurrence are 1% with a folic acid supplement (4-5g as opposed to the 800mg's that are in most prenatal vitamins) for 3-6 months before conception of future babies.

What's next? Return to New Orleans sometime this week. When we get back I'll start searching for a doctor or midwife in New Orleans and then a hospice group that can help us. Hopefully all that can be set up before I start back at school July 6th.

Personally, we're doing ok. I haven't looked up the stages of grief, I know there are around 5? Maybe? And from what I can tell they are not pyramid-like but rather more cyclical...at least I seem to be moving between sad and mad intermittently. I feel like in spite of all this we are able to enjoy introducing Sammy to family and feeling his movement. It's such an unreal experience

I heard this song today, for the first time in forever. I think I went to one of her concerts 8 or 9 years ago (makes me feel old to say that) and used to love this song. Of course it now takes on a whole new meaning and today it helped me get past some anger.

Ginny Owens - If you want me to - http://www.youtube.com/watch?v=QtNzOpKvPfw&feature=related

Thank you for walking with us through this, whether through prayers, emails, or phone calls, it means a lot to us.

Friday, June 11, 2010

P&S #6

And he shall be called....

Samuel David Lucido - "Sammy"

When we started talking about baby names it mostly a question of which girl name we were going to choose, I mentioned a couple boy names, Samuel David being one of them, but everyone thought we would be having a girl so we didn't think too much about boy names. We unofficially decided Samuel David was the boy name we wanted to go with.

"Sam" is an important name in both of our families. Dave's dad is called Sam (his given name is Salvatore) and my Dad's dad was nicknamed Sam growing up and his amazing life has inspired countless Sam's to be found in our extended family. We hope that our baby boy will have the qualities of both of these two great men. His middle name was my choice - I would also like Sammy to have the wonderful qualities of his daddy.

A couple weeks ago a wonderful friend from Detroit sent a forwarded devotional about Hannah and her journey toward motherhood. The article is best summarized in the final paragraph.

That which we strive to hold can be kept only by surrendering it to God. This biblical principle applies to our hopes as well as to our very life (Luke 9:24). Learn from Hannah's example of faith, and pour out your heart to God. Lay your hopes before Him—the only One who can fulfill your desires or change them to match His will.

(the rest of devotional is found here: https://mail.google.com/mail/?shva=1#inbox/128f3b35e9f4e6ec )

I prayed for this baby for months before he began growing in my womb and I'm sure at some point in my prayers I prayed something crazy like "I know whatever baby you give us will always be yours first Lord, and ours second." I'm confident I "surrendered" Sammy to God never imagining this path for us, not knowing the depth of what that could mean...at times I tell God "this is not what I meant by surrendering my baby to you!!" But when is surrender ever something we expect it be? The devotional got me thinking about all this and also made me google "Hannah's baby" because I had an idea that it could have been...and yes it was...the baby she prayed for and surrendered to the Lord was the prophet Samuel. Huh.

A couple days later I woke up at 5:30am wondering what the name Samuel David means anyway...we chose it for our baby boy based on familial importance and because we liked the name, but every name has a meaning. Turns out Samuel means "God heard" and David means "beloved". *tears* Couldn't be a more fitting name.

Wednesday, June 9, 2010

P&S #5

We had a good day today meeting with a perinatal hospice nurse, getting another ultrasound (with pictures for us to take home!), and meeting with a genetic counselor. Well, as good a day as one can have while beginning to plan for a baby's birth and death...

Nothing has changed, baby boy is healthy as can be except for the anencephaly. It was great to talk to people who really respect our decision and support it. When I called to make the appointments I asked to see and speak to someone with this specific experience - they definitely delivered on that request! The perinatologist started talking about how "when the really good ultrasound machines came out in 1975" - LOL - and I knew he would have the depth of experience that would make me (us) comfortable.

We have been using baby boy's name for quite a while but wanted to wait to tell family in person before we announce it...tomorrow we will be meeting with the last group of immediate family so I will send out a more detailed email about today's visits and his name - maybe a picture if I can figure out how to make that work without a scanner.

Thanks again for all the prayers today, it was tough at times for each of us to keep composed and I'm sure it was your prayers that held us up.

Tuesday, June 8, 2010

P&S #4

*written by Dave*

So, I told Melissa that she should send out a post-Detroit email update, and of course since it was my idea, she thought it best that I do the update. At some point I'll learn to keep my suggestions to myself :-)

Last Tuesday night we flew in from Denver after having a great time with Melissa's brothers and sister in law. It's amazing how seeing snow-capped mountains in the distance can change one's perspective on things. What a big and mighty God we serve.

After being back in New Orleans for about 24 hours, we hit the open road with dogs in tow headed for Detroit to catch up with some friends and family. It was great to see the city, and no matter how tough things may be in Michigan right now, it will still always feel like home to me. We spent a few days with my sister and her husband and my niece and nephew - It had only been about 6 weeks since they were down in New Orleans to visit us, but they agreed that Melissa's belly had definitely gotten rounder with our baby boy! I think that my sister was the only one who's reflexes were quick enough to feel him move - and we've determined that based on his communication through little kicks and punches that he loves Doritos (just like his Daddy!! haha)

Sunday, we went to our home-church in the city where Melissa and I met and got married. It's was great to see our friends and so many of the people who supported us from the time we were both single and unattached, through the time we were dating, engaged, and married. It just seemed appropriate and necessary that we share this stage of our journey with them as well. Not everybody knew our situation, and after just seeing that Melissa is obviously pregnant offered up a cheery "congratulations" - but there were also the few, that knew us a little better, that knew that there was more to the story. And it just felt so good to be taken in, and lifted up in their prayers. There's something about praying with those who know you, and love you, and have helped you become the people that you are - It just felt so confirming and assuring that as intimate as we feel among our beloved friends and family, just how much more intimate does God feel towards us? What we're going through isn't because we've been overlooked or forgotten about. God has been revealing Himself every day as we share our time and hearts with others, and I believe He will continue to do so.

Our time went by pretty quickly in Detroit, and before we knew it, it was Sunday night and we were back in the car (dogs in tow) headed for Melissa's mom's house in Minnesota.

Today we went to pick out some fabrics for the blanket and hat that Melissa's mom is going to make for baby boy... It was definitely the most emotional I've been while shopping for fabric. Ok, it may have been my first time ever shopping for fabric. But it was difficult, and exciting, and sad, and beautiful, to pick out what we're going to wrap him in on the day of his birth. I found it a little overwhelming, and was again, just amazed and in awe at the strength and grace of my amazing wife.

Tomorrow, we have an appointment with a perinatal specialist and will get another ultrasound from a doctor near the cities. Please say an extra prayer for us tomorrow. I know that Melissa will send out an update with the results of that appointment, so for now, I'll just ask you to please pray for our strength, and that we have a doctor that can help us answer some of our questions.

I've attached a few of the pictures that we took in Detroit with my sister, husband, nieces and nephew. We wanted to make sure that the kids were able to take a picture with their cousin :-)

Tuesday, June 1, 2010

P&S #3

We've started our travel adventures in the gorgeous mountains of Colorado and arrived just in time for the some of the most perfect weather. It's fun to drive around a city and see the mountains in the distance. It has been great seeing family over the last week, Dave's parents and my bro's and their significant others with Mom and Duane here in Colorado.

I am excited this week that I can finally feel baby boy's kicks on the outside! Dave and my brother John were both lucky enough to get a hand on my belly fast enough to feel for themselves too. I have nothing to compare it to but it he feels pretty active to me. Late morning until I go to bed I feel random kicks and punches throughout the day...night owl baby :-) just like his mama. Unfortunately it seems like the more active he gets the less food I can keep down. Every day is an adventure.

I was able to get a copy of my records for all the traveling we are doing. As we've been talking about the initial ultrasound it seemed Dave and I remembered things differently and didn't get reassuring answers from our doctors appointment last week so I read the perinatologist report. According to what he wrote, the only abnormality with our baby is his brain. His spine, heart, and facial features were normal at that time. We are encouraged by this as we are interested in donating his organs, if it can be done. So - we are anxious for our next appointment to hopefully get some answers to questions like that.

At lunch today I received a call from Minnesota Perinatal Physicians and set up my appointment for June 9th! That was a great stress relief, I was giving both my New Orleans doctor and this office until tomorrow (holiday weekend and all) to get connected before I made a second round of calls. We'll have another ultrasound, meet with the perinatologist and a genetics counselor if we need to. I think we are also going to set up a meeting with the perinatal hospice service that is provided through Children's Hospital for any further questions that we might have.

So that's the business news. It seems we continue to have good or sad days with no warning when it will be a good or sad day.