Facing Yet Another Cross

The time has come in this pregnancy to face yet another cross. I've been dreading this one ever since the first day of finding out our sweet baby's terminal diagnosis- the time of pregnancy when everyone asks you all about it!  Now that I'm 28 weeks, and clearly showing, it seems that pretty much everyone feels inspired to discuss it with me.  At church, in the grocery store, in the library, at the chiropractor's- you name it, if I'm there, people are ready to talk about it.

Due to the fact that I have a 16 month old as well, she usually helps to start the conversation rolling, and it pretty much goes like this..."Oh what a cute daughter you have!  How old is she?  Is she your first?  And I see you're expecting again!  Do you know what you're having?  When are you due?

That part I can handle.  If it ends there, it's easy enough to just smile and go on.  The hard part is that people typically throw in a final blanket statement before they walk away, like... "Oh, you're going to have your hands full!"  Or, "My daughter had two that were only 16 months apart and it was awful!! Wish you luck!" Or, "So close? Oh, they're going to be the best of friends!"

Truth is, every blanket statement just makes it hurt more.  The fact is, not only am I not going to have my hands full; I'm going to have painfully empty arms come Dec/Jan.  Or, how I wish I had better luck than the mother with 2 healthy children, only 16 months apart.  And yes, thanks for reminding how much Elisa, who loves babies and kids, is going to miss out on having a sibling and playmate close in age.

Sigh. Yet another cross to offer up, and then cry about when I get home.  This whole experience of suffering with our Baby Joey had caused me to reflect on Jesus' road to Calvary so much.  I feel like I've gotten past my own little "Agony in the Garden," (as in... Pleeease, take this cup away from me), and gotten to the point of at least accepting this cross as God will for me.  Each day is hard, though, like today when I ran into yet another pregnancy commentator at the grocery store.  It makes me think of Jesus' suffering, and His prayer, "Father forgive them; they know not what they do/(say)."                          

Gifts of Love

This week has been characterized by the sweetest gifts of love arriving for Baby Joey.  No words can describe how touching each one is to us.  We've received so many cards, little packages in the mail, as well as items dropped off at our house.  Each item was made or picked out with so much love, and each one brings tears to our eyes, (in a good way).  

Baby things are positively adorably anyways, but when they're coming to us in teeny-tiny sizes, and for our baby whose life is destined to be so short, each item feels incredibly special.  Thank you so much to everyone for your wonderful gifts of love for our Baby Joey. We feel so loved and honored by your beautiful and thoughtful gifts!! =)        

More Letting Go and Letting God

I had my monthly OB checkup today.  Matt came with me while my mom watched Elisa.

Well, during my checkup, as is routine, the doctor brought the fetal monitor over me, in order to hear Baby Joey's heartbeat.  When it picked up a sound, however, both Matt and I looked at each other, thinking that what we heard didn't sound good at all!  The doctor moved it to another spot on my abdomen, and it sounded a little better, but still "not right."  I didn't know exactly what was wrong as I couldn't see the monitor, but Matt was able to see the numbers: between 85-95 beats per minute. (During previous visits, Joey's heartbeat had been reading more like 160 or so, which is normal.)  Matt asked about it, but our doctor was optimistic, saying, "Oh, it's ok; these monitors aren't always accurate."  That being said, however, we are definitely wondering what it all means, and whether Joey's heart will actually make it to a live birth or not.  

Secondly, my abdomen also measured bigger than normal this time, by about 3cm.  What that means is that I could be getting polyhydramnios, which is an abundance of amniotic fluid building up (because the baby's lungs aren't working well enough to swallow it, as a healthy baby would).  This condition can cause a number of complications, including early labor and even stillbirth.  

What all this means to me is that, despite my own plans for Baby Joey- my birth plan, my plan for meeting and spending time with him in this world, my plan for having him baptized alive-- may or may not be God's plans for Baby Joey and myself.  Whatever happens, we definitely believe that Joey is in God's hands; however, we're also realizing that plenty of details might not work out according to our wishes.  Seems that in every step of this walk we've been having to let go, more and more.  It's so hard, but kind of freeing too-- (as in, if it doesn't work out perfectly, well, it's in God's hands!) It makes me think of Mary and all the challenges of her journey through life with Jesus.  Her response to God always is, "Le it be it done unto me, according to Your will."                

An Emotional Week

Last Monday, Sept 10th, was my birthday. It was also the day that another baby boy with anencephaly was born- Amalya Nathaniel.  We and Amalya's parents have the same doctor, and we got to know the family a bit through our shared situation.  Little Amalya lived for about 80 minutes, and lovingly passed away in his parents' arms.  I was full of emotions that day, watching Facebook closely for updates and pictures.  The beautiful family felt their little Amalya was an absolute blessing, a "Work of the Lord," despite his short life here on Earth.  I was so happy watching this beautiful family celebrate Amalya's life, but had a very heavy heart at the same time, knowing that my own dear baby's time was soon to come.

Skip ahead to Thursday and Friday...  watching the scene unfold with little Amalya made me feel like it was time to take care of some business.  I bit the bullet, and decided to find out what I could about local funeral services, cemeteries, etc.  I knew it was going to be difficult, but didn't know how difficult until I started making phone calls and relating our situation, over and over.  Basically, I sobbed the whole day away.

On Sunday, we went to the funeral service for little Amalya.  As we were walking up to the church where it was being held, I felt at peace and pretty much in control.  I thought it was going to be ok.  Once we stepped into the receiving line, however, my head began to spin and I felt like I might pass out.  All at once, this scene was me- my baby, my guests. I was the mom who just gave birth.  I felt like it was a prequel- a deja vu in reverse.

I choked back a loud sob, and almost ran back to the car.  Instead, I ran to the bathroom.  I wanted to stay and join in celebrating this baby's life.  After calming down a bit, I made it through the line and the rest of the service without making too much of a scene.  The funeral service was definitely beautiful.  It was such a witness of faith and belief in God's plan for each one of our lives.  It was truly a beautiful experience and we felt very blessed to be there, despite the deep emotions it evoked.

On Monday, I decided to go and check out the cemetery recommended by our local Church and funeral homes.  It was a lovely cool day, and that made me happy.  I drove around and around the cemetery looking for the "baby garden," section, as they called it.  I thought it would just stand out as obvious, but I drove around and around and I couldn't locate it.  Finally, I pulled over and cheerfully asked one of the workers for directions to the baby garden.  He said, "Well, there are a couple of different ones.  Do you know which one the baby you're looking for is buried in?"  I shook my head no.  Then he said, "Hmm.. do you know how long ago the baby was buried?"  The second question took me completely by surprise.  I couldn't answer; I just automatically burst into tears.  Finally I shook my head and pointed to my bulging abdomen.  The man felt terrible, and was so sorry for asking.  He tried to explain where to go, but I was such a mess by that point, he practically walked me to the area so I could get there.  Finally, at the baby garden, I felt at peace again.  I was sad to see so many little plaques, but it made me happy for my faith and the hope that we will be able to meet our loved ones again some day.  I started to read the names and birth dates of some of the little babies buried there.  I felt like it would be a fitting place for our little Joey, surrounded by so many welcoming little friends.               

Downsizing the Bucket List...

When I wrote in an earlier post about taking Baby Joey on adventures in utero... I was in the midst of 2nd trimester and feeling great!  I was having a somewhat-fiendish delight in thinking about all the things I would like to do with him- (As in, all the things that you're NOT supposed to do while pregnant!) Like... riding roller coasters, water slides, horseback riding, downhill skiing, drinking beer, eating blue cheese and lunchmeat, skydiving.. (LOL- not really going that far!)  But, you get the drift.  I could just imagine the look on an operator's face when I was stopped for being pregnant-- "It's ok!" I'd say,cheerfully.  "My baby only has 3 months to live, and we're making memories!"  

My thought was not intending to be reckless, just adventurous.  As many of my friends know, "adventure" is one of my favorite things in life!  And so, sharing adventures is one thing I feel I'm really going to miss experiencing with my firstborn son.

[We have managed to complete a few adventures in Baby Joey's lifetime so far- (but not nearly as crazy as the ideas above!)-- camping a few times, hiking, walked a 1/2 marathon, square danced in a world-record attempting event, cheered on Daddy at the Mudstash (5K Obstacle Course) etc., to name a few.  We do still have a trip to Chicago and the Willis Tower hopefully on our Bucket List, in addition to several weddings, and a few small other things.]  

That being said, however, now that I'm rapidly approaching third trimester, I've popped out (tremendously) and am starting to feel like a beached whale.  Adventures still sound enticing... but pretty much seem physically impossible.  We went camping last weekend and I could barely get around to chase my toddler, let alone try to get some sleep at night!  I was having a lot of Braxton-Hicks contractions all weekend, and I was just uncomfortable in general, for many reasons.  

I was starting to feel pretty down about being at the point of the third trimester aches and pains already.  On the one hand, I couldn't believe I felt this way already, and still have 3 months to go.  On the other hand, I couldn't believe I only have 3 months to go, and feel like I can't get around to do much anymore!

I was thinking about this problem a lot last night.  I was exhausted, but I couldn't sleep; meanwhile Baby Joey was doing gymnastic floor exercises right across my abdomen!  I started to imagine what Joey was thinking, and what he'd say about all of this.  I imagine he'd say something like, "Silly Mommy!  I just want you to sit here and hold me.  I don't want to run all around everywhere- I'm a baby remember?!  If you just lie still, I'll wiggle for you...  And, maybe tomorrow we can play with Elisa too!"

The thought was very sweet and made me tear up.  I remember many days after Elisa was born, just staying home, holding and snuggling with her.  It was some of the most wonderful time I've ever spent in my life.  I can't imagine regretting a second of it!  

So, I got to thinking... maybe Baby Joey is a cuddler too! Maybe he doesn't even really like adventures that much...  (Hard to believe, I know. LOL)  Maybe he just wants to spend time playing with his sister, and being held by his mommy.  Maybe he wants to show off his gymnastics, and I have to sit still so I can feel how impressive his movements are.

Maybe he's glad that I'm slowing down...  Maybe he just wants to spend the last three months with me?                             

Friday- 7 Quick Takes

1. Fulton Sheen's Miracle Baby

So, via the blogosphere, I was recently introduced to little James Fulton- the baby whose miracle cure has been officially submitted for the Beatification of Fulton Sheen.  How awesome is that? You can read the story firsthand at this link-   http://learningtobeanewlywed.blogspot.com/p/sheen.html

2. Resting Up for the Kick-Boxing Tournament

Wed night was a sad night. I laid awake for a long time, realizing that I had not felt Baby Joey's kicks that day.  (He normally has been kicking me 100+ times/day, so this was unusual.)  I feared we might have lost him already and I cried myself to sleep.  

On Thursday morning, however, I awoke to what felt like a kick-boxing tournament inside my abdomen- "Well, well.. Good morning Joey!"  Seems he was fine all along--just resting up for his tournament! =)

3. Fireworks

On Sunday, Matt, Elisa, Joey and I headed downtown for the annual Labor Day Fireworks display.  (Apparently it's one of the best fireworks in the country!) It was pouring down rain all evening, so we got a spot further away than usual, near our car.  Elisa oooh'd and aaah'd over the fireworks, but I think Joey slept through them all!  http://www.webn.com/pages/FWX.html

4. How Are We Doing?

Well, it's been a good week and busy week.  We went to the fireworks on Sunday, threw a big Labor Day party on Mon, rested on Tues, visited with a good friend of mine on Wed, played at the Children's Museum on Thursday, and are currently blogging on Friday! It's getting easier to talk about Baby Joey without bursting into tears, and we've been feeling so much love and support from everyone around us. (I'm 25 weeks this week-- the past month has absolutely flown by!) By the way, if you're new to our story... you can read about it in my first post here.. http://beforeiformedyou.blogspot.com/2012/08/the-sad-news.html   

5. Saints-in-the-Making

One thing that has been such a beautiful and powerful  experience through all of this is running into so many people who have stories of carrying their own babies to term, and loving them no matter the diagnosis.  (I have just been realizing how many saints-in-the-making are all over the world-- babies and adults! Wow.)  Here are a few of the websites I've come across-- (Oh.. btw.. might want to get some tissues handy) 

Prenatal Partners for Life- tear-jerking video on the homepage, and side tab with beautiful stories of babies with about every prenatal disgnosis out there  http://www.prenatalpartnersforlife.org/

99 Balloons- beautiful video about a baby who lived just 99 days, and how his parents celebrated every day as a birthday http://www.youtube.com/watch?v=Kde1c3JYS44  http://www.youtube.com/watch?v=RUd6kZ2uDNA

Baby Dominic- has encephalocele, and the most beautiful and loving family ever. Please pray for Baby Dominic... http://www.caringbridge.org/visit/dominicgundrum  

6. Bittersweet Birthday- Sept. 10th

This coming Monday is my birthday-- (We'll just pretend I'm turning 26 this year, ok?!)  It's bitter to be turning more than a quarter of a century old (LOL...), but sweet to be sharing the day with my family and Baby Joey. =)  We'll also be going out to a nice dinner, thanks to Matt's boss.. yayyy!  Thanks Bill! =) 

Bittersweet Birthday Cont'd-- Amalya Nathaniel

On a more serious note, I found out that another baby diagnosed with anencephaly is scheduled to be born on Monday--  via C-Section.  The parents go to my same doctor, and have been beautiful in sharing their resources and love with us.  Please pray for their family and baby boy, Amalya Nathaniel.  (Amalya is a Hebrew word which means "work of the Lord," and Nathaniel means "given by God.")  Please pray for courage and strength for their family, and that they may have a beautiful time spent with their little boy, however long it may be.  The baby's grandmother started a blog about Amalya here- http://mariaelkins.com/index.php/quilts/surrender/ and made a quilt to capture the experience.  It is heartwrenchingly beautiful... what an artist.  Brings tears to my eyes every time I look at it.      

7. Correspondence Overload

Finally, we are so awed and amazed at the outpouring of love from family, friends, and even so many people we don't know!  I regret to say, however, that I'm about 20 phone calls and probably 50 e-mails behind in responding to all of you! Thanks for your patience.. =) and thank you all, for your love and prayers for our family. 

  

Something Old, New, Borrowed, or Blue?

To my Artsy, Crafty, Gift-giving, and/or Pinterest-Inclined Friends...

I have started compiling a list of a few small items we would be so thankful to acquire before Baby Joey's arrival- only 3 months away (or sooner)!  Because of my recent scare that I had already lost him, I feel more pressure to get on the ball in this department.  I think it would be so incredibly special if people we know would be interested in making any of these for us, but I would also be willing to buy them... if you can help me find where!

1. Little Hats, and/or Miniature Baby Blankets- sounds like we'll need a few- for hospital, photos, (home-maybe?), and funeral.  I think the homemade crocheted hats are so much more beautiful than the hospital ones.  I especially think little Mary's hat is so perfect here.. http://www.prenatalpartnersforlife.org/Stories/AnencephalyStoriesIndex.htm. Anybody want to make me some, and/or matching miniature baby blankets?  That would be sooo sweet.  The hats would need to be very little (like preemie or doll-size) and if they have some thickness to the top, they seem to look really nice in pictures. The blankets can be teeny-tiny, like doll blankets also.

2. Clothing- So, we'll most likely need only a couple of outfits as well.  We're looking for the type of outfit that would look beautiful in pictures after birth, and/or funeral services, and I can't find anything special enough to purchase.  I think a fuzzy Carter's-type sleeper, with a Bible verse sewn in calligraphy would be very special. (white on blue; or blue on white)  Anybody want to find or sew something like this for us...?  I can give you our favorite Bible verses if you would be interested in doing this.  I think an outfit like the following, with a med-light blue hat, and tiny matching blanket would be so beautiful. (This picture is Dominic Gundrum, who has encephalocele. I wrote about him in my previous post.)  http://www.caringbridge.org/visit/dominicgundrum/photos/entry/num/8

3. Memory Box-  So, other folks suggested putting a few keepsakes (a few pictures, an outfit Joey wore, a blanket, stuffed animal, etc) in a memory box afterwards, that is pretty enough to put on display.  Some people get a small cedar chest, or a larger jewelry box, etc. Any suggestions?

4. Three Plaster Mold Kits- For taking a mold of baby's Joey's hands and feet, and an extra for messing up!  (I'm not sure, but I hear it can be bought at craft stores?)

5. Haberman Feeder-? Supposedly effective in helping babies with neural tube disorders and/or cleft palate nurse.  Don't know if we will be able to use it at all, but it might be worth trying.  Anybody have one we can borrow?    

6. Stethoscope/Heartbeat Monitor of some kind?  Silly question, maybe.. but does anyone have a stethoscope and/or heartbeat monitor lying around that we could borrow for a while?  We've heard it's so comforting to hear the baby's heartbeat during the continuing pregnancy.  

7. Big Sister Shirt/Outfit for Elisa- She's a peanut, but let's suppose she'll be in 18-month clothes by then.  If you have one or two we could borrow, that would be awesome.

8. Large Maternity Dress- So... I've also gotten advice that I should have a dress lined up for the funeral.  I'm a pretty pitiful shopper anyhow, and won't be in any state of mind to shop then.  Soon after giving birth, it'll still need to be a maternity dress.  Anybody have one that I could possibly borrow?

If you have any other suggestions about little essentials we'll need, just let me know. Thanks!
PS- I think we're in good shape with everything on this list now!  Thank you everyone for your generosity! =) 9/20/12