Rollercoaster

How did we get here?

We went from so many unknowns and what-ifs and possibilities and options TO "its just an omphalocele."

I am truly amazed at what God does.  Just when I start to doubt Him and doubt myself --- He shows Himself.  He performs miracles.  He answers prayers.  And if I ever doubt Him or His faithfulness -- I will remind myself of days like today.  There is no luck involved, or coincidence, or irony, or insanely weird timing ------  there is only God and His son, Jesus Christ.

We had our echo appointment today to check out baby Merritt's heart with Dr. S.  She found NO heart defects at all.  And the icing on the cake (to me) was the fact that it won't change... she can't develop a heart defect later.  Every other appointment's good news always coincided with the possibility of her developing something else or something changing from week to week.  So I was very pleased to hear "that won't change."  I needed to hear something concrete.  I will have an MRI next to see if they are missing anything, but as of now I will no longer see Dr. P - because -- get this -- "it's just an omphalocele."  Dr. S said I would have more problems over the next 2 years with feeding Merritt, than the omphalocele.  These babies don't/can't/won't eat because of their messed up intestines therefore they don't gain wait therefore they stay in the hospital longer with prolonged complications.  (possibly.)  And given my kids' history with feeding - we don't have a good track record.  lol!   I got more upset over not seeing Dr. P anymore! I looooove Dr. P! And I might go into withdrawal if I don't get my ultrasound every other week.  ;)  He made me laugh when all I wanted to do was cry. And I won't see Dr. S again until after baby is born.  They are transferring me to  ______?????______

Matt texted my mom while I was driving home and we thought it was weird that she didn't respond over news like that.  We got home and she called to tell me that my Papaw had passed away in his sleep today.  My grandmother was suppose to have her heart surgery today, but they had to reschedule for next week.  Keep her in your prayers also.  Even though you see things like this coming in the future, it's always still a shock when it actually happens.  I am thankful that he appears to have gone peacefully and he was definitely ready to go home.  It has been an emotional day to say the least.  While his heart was fading, Merritt's was getting stronger.  My other grandfather died when I was 9, so Papaw was really the only grandfather I ever had.  He will be missed.

Thank you for the continuous prayers.  I am blown away by all the cards, emails, phone calls, and texts from people telling me they are praying for my family.  It means so much to us - and God has definitely heard them!  He is the Almighty.  He gives me strength when I don't think I have anything left in me.

My fellow pregnant friend (whom I love dearly and has listened to me complain over the last 5 months)  said she could see Miss Merritt decked out in the NICU in a stylin' hat and booties singing to herself "I Will Survive."  Well, she's got the wave down.  Thanks for that laugh, C!!!



..............."Hey Hey"!!!!!...............

On the Road Again

What should have been one of the best weeks ever, has turned out to be one of the worst since we found out about the omphalocele.  I had put so much pressure on the amnio results.   And they were/are a BIG deal, but 2 seconds after I received them (and still on the phone with the nurse), I realized it was just another step in this journey.  It wasn't a cure.  It wasn't a fix.  She still has an omphalocele.

I'm not trying to get a pity party.  I don't need to hear the 'i'm sorry for what you're going through' speech. I just need to vent.  I need someone to sit there and listen...  and doesn't feel pressed to say anything back.

The blog takes it well. lol!  I write alot of sad things - and I never post them.  I TRY SO HARD to be happy and optimistic and only look at the bright side.  But I won't lie... I definitely have my bad days.  I need someone who truly knows - which there is no one on this planet who can - to tell me everything's gonna be alright.

People said "oh she's fine now."  um... no.  And I know what they meant.  I should be a little more happy about it too.  No, she still has a high risk of all the complications involved with O's.  I feel like we are just beginning.  But yes, she has a much better chance at survival now.  Don't get me wrong - I am thrilled with the results - but it was made clear she still has a long road ahead.  I have to laugh now: it really is a bump in the road.  

I have found so many more O blogs lately.  And I started crying and getting depressed again.  My advice to other O moms: do not read them all the time!  Even the really good successful stories will still make you cry. You find yourself jealous and envious because you hope your story can be that lucky.  It's good to read about other situations, but it.is.not.YOUR.baby.  Every baby is different.  I have found 2 mom's that make me LAUGH.  I may have to stick with just reading those.  I can not wait until I can crack jokes about Merritt's situation.   I haven't reached that point yet - but I'm definitely getting there.  Everytime I sit down to type - all I really want to do is cry.  

I remember the day after we got the news about the O.  I told Matt I wanted to plan a trip to the beach.  Then I read Angie Smith's book.  She went to DisneyWorld.  Granted, my situation is not even close to hers, but very similar in other respects.  I just want to escape.  I want to escape this whole deal.  I want it to go away or be over so bad.  I want to go somewhere that I don't have to think about it.  That I don't have to deal with it.  No, I'm not being a coward --- I am just exhausted.  I am so tired of crying.  I am tired of being angry at no one.  I am tired of dealing with it.  And don't take that out of context.  I am mentally stressed out.  I feel like God may start charging me if I pray one more time ;)  I feel like someone has tossed me into the air and I am free-falling.  Would someone please wake me up from this nightmare?

Baby Merritt has really increased her activity this week.  And I am loving every minute of it.  She reminds me that she has not given up on me yet.  She literally kicks some sense into me.  And I can't give up on her if she hasn't.  I read somewhere that O babies make you slow down and really appreciate every single day of being pregnant with them.  I agree, this is the longest pregnancy ever.  I think we counted 8 ultrasounds in less than 18 weeks and 11 doctor appointments in 20 weeks so far.  And I am only 21 weeks.  Holy smokes I can't imagine what the second half of this journey will hold.

And p.s.  I made my appointment for a prenatal massage and a haircut to de-stress before the next doctor's appointment  :)  I feel like Chevy Chase:  "[after rant]...Hallelujah!... where's the Tylenol?" 

"He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40:29-31.  

Amnio Results

Merritt Chandley Miley has NO chromosomal problems and also tested negative for fetal cholinesterase, which tests for spinal problems.  And she is still 100% girl! :)  We have our next appointment next week for the echo with a new doctor that I am very excited to meet (they call her "the machine").  And my next personal goal is just to get baby here full term.  I've started having alot of Braxton-Hicks contractions, which make me nervous.  I'm trying to take it easy.

I must say it again:  God is so good! He has answered so many prayers and He is wonderful.  Thank you for all the prayers.

"As for me, I will always have hope; I will praise you more and more.  My mouth will tell of your righteous deeds, of your saving acts all day long - though I know not how to relate them all.  I will come and proclaim your mighty acts, Sovereign LORD; I will proclaim your righteous deeds, yours alone."
- Psalm 71:14-16

Party Pics

I will give Mattox the spotlight one more time here and then I'm sure I will be posting amnio results next week for you.

A friend told me today that God answers the little prayers too.  Absolutely.  Earlier this week there was an 80% chance of rain today.  I called the train rental people and they told me to "wait it out".  I am not one for rescheduling things... mainly because I'm doing good to get them done the first time.  So I just prayed all week - that Mattox's party would be great.  I personally needed a good fun day too.  Then by Thursday, the chance of rain went down to 20 and 10% and then sunshine and a high of 70 degrees.  Hallelujah!  So the train came.  And I was not feeling well Thursday and Friday, so thank you Gigi for everything you did while I rested!!!!!

Thank you to everyone who came! He has opened every single gift and played with them all after his nap!  I think the kids loved the train - but oh my - Mattox really LOVED the train.  He cried when it left.  He surprised us by blowing out the candles - we really didn't think he knew how yet.  I'll let the pictures do the talking.  Happy 2nd Birthday sweetie pie!  I ordered a DIY kit from Etsy and printed everything myself = super easy and cheap!

Cookies by Dream Cakes in Flowood

Loved these.  

Animal car and food train built by Gigi

Produce car and Log car

Hay Car

The train was behind the camera = the only reason Mattox is looking in this direction

                 

A little free advertising 

Sweet cakes

Cake and cookies by Dream Cakes in Flowood = yummy!

Make a wish!

Crying after the train left :(

 

I did not post any of his friends because I never know if their moms are ok with their child's picture being on the internet.  so i try to leave those out.  AND I could not get Mattox to stand still for 1 second to take a decent picture of him smiling... he only had eyes for the choo choo!  Thank you again everyone for making his day so special!

Mattox is 2!

When I think back to the day I had Mattox, I was expecting a male-version of Mati Claire = dark hair, dark eyes, and round 2 of the troubles with breastfeeding.  And boy oh boy did he prove me wrong! He still surprises me every single day! I looked around the operating room because I was sure they showed me the wrong baby.  I thought they were performing 2 sections in the same room and they had swapped babies.  Even Matt asked me who the real daddy was ;)  We were expecting a tiny baby around 5 lbs (he was always measuring small in 10th percentile on sonograms) and he came out surprising us at 7 lbs and 7 oz!  I remember asking Dr. T if she was sure he was mine.... and she replied (laughing) "yep - that's the only baby I pulled out a few seconds ago!"  Mattox didn't look like anyone we knew = light hair, blue eyes, and I learned within a few seconds that boys take their food very seriously.  He didn't sleep, he cried all the time, he never smiled, and he was just a very fussy baby! Something I was not used to! Just fyi, his eyes eventually turned light brown around 6 months old, he was a superb breastfeeder and never gave me a second of trouble, and is a great sleeper now! He sleeps around 12 hours at night in his own bed and a 2 hour nap everyday.  I don't want to scare any first time mothers out there! lol

Wow. My baby is now 2! I know most people think he acts very shy, quiet, and well behaved... but let me tell you - that boy is anything but! I joke that he is "bad" but he is really just ALL BOY! 2 years later, and I am still not used to it yet.  I can give him a bath before bedtime and by 8:00 the next morning his fingernails are dirty, he is covered in heaven-knows what, tee-tee'ing on something, and handing me a "boey" = booger.  That's his latest word by the way.  He is not much on words but he will let you know exactly what he is trying to say somehow or another.

I can't tell you how much I love this sweet little boy.  The bigger he gets the sweeter he gets.  He loves to rough-house with Daddy, but also loves to rock and snuggle with Mommy.  He loves to pass out sugar -- and pass gas.  ;)  I have to joke about that because he.can.not.stand.a.dirty.diaper.  Mattox just moved up to a size 6 diaper - puhleaze hurry up and get potty trained!!  He is extremely interested in the potty lately but no success yet.   But seriously, I am still getting used to the roughness, toughness, and just plain dirtiness of boys.

He dearly loves to read.  If I fall behind in the bath/bedtime ritual, he will climb in his chair and start reading to himself.  *swoon*   He is getting SO tall.  Its hard for me to rock or hold him (especially with my growing belly) so I have learned to really appreciate the time we do get to be close.  And I know I won't be holding him much longer because he only wants to PLAY.  He loves his trains "choo choo's" and his cars.  I think its hilarious that he can't say the name of any animal but only what they say if that makes sense.   A dog is a "ruff ruff"  and a cow is a "moooo"  but he can't say dog or cow.  Or won't.
And he FINALLY just started calling MC's name = "klar".  Once he said "adda klar" but he's back to just "klar".

He tries so hard to play with her, and she usually won't give him the time of day.  But she likes to steal his toys.  Sometimes I think she could be the little sister and it would be more fitting.   I find her pestering him more than the other way around.  They do get along for the most part though.  He does his own thing.  He's very adventurous and not scared of much.  And very stubborn.  Hm.. wonder who he gets that from? ;)  And he is an awesome helper!  He is a total goofball.  Yet, for the most part he is a very serious little man, but I melt when I see him smile.  He is constantly running on all cylinders so I think he doesn't have time to stop and smile because he is thinking so hard!

His hair is so light that people ask me if he belongs to us.  It appears he takes after my sister and my dad although I think he is identical to my baby pics.  He has got a TON of hair.  Birthmark is still underneath it all and I love it.  A man at church asked me one day if Mattox had gray hair.  I just replied, "gray, blonde, red, white, brown, light brown, and every color in between!"

After what seemed like a "train" Christmas and train big boy bedroom, I really resisted a train theme party but in the end I could not deny the boy his "choo choo."  He LOOOOVES trains.  So I will post pics of the "Choo Choo Mattox is 2!" party later.

I wish time would just stop with him.  He can go to the local community college nearby and live at home as long as he wants.  I don't care if he's 50 and still living here with us!  I'm sure he would still be keeping us entertained!  I love him to the moon and back!

   

O Blogs

I am sure most of you might be tired of hearing about omphaloceles.  I have added a blog list of other omphalocele and gastrochisis moms and babies.  They have really helped me through this process.  There is a video HERE that is just amazing to sum up one child's story.  I warn you that it is graphic but really shows what we're dealing with.  I pray that my baby girl can overcome this.  I don't think I'm as technical savvy as Karsie's dad, so I doubt we will have a video like that to share... but I am working on upgrading the blog to make it easier to navigate her story.  I have also come across blogs where the child does not survive.  I added one in the list, but they don't update it for obvious reasons (and I mean that in the most sincere way - please don't take that wrong).  But these that I listed have really helped motivate me and keep me positive.  Just thought I'd share for those of you interested.

Amnio Appt

I had written a post the night before my amnio, but it was very sad and depressing ... so I decided not to post it.  Lets just say I have cried alot on the days leading up to my appointment.  Was beginning to get down and had an overall negative feeling about it.  The procedure has really been out of mind the last 2 weeks so I honestly did not think about the results or any of the possibilities.  She doesn't move as much as my other 2 babies did, and I remind myself that every baby is different and that does not mean anything.

I have learned that I deal with issues by ignoring them, pushing them out of mind or on the back burner.   But eventually it will catch up with you and you are forced to deal with it.

March 1st crept quickly.  The amnio really decides ours and her future.  It can be the greatest or worst day ever.  Babies with omphaloceles have UP to a 60% chance of having a chromosomal abnormality among other defects.   In the middle of one of my cry-sessions, I started praying (I tend to do that when I feel out of control).  I was telling God that we/doctors can fix an omphalocele.... but I can't fix a chromosomal problem... I can't fix trisomy... I can't fix this.  Now I am beginning to think that I am going a little insane. My thoughts range from one extreme to the other.  Then I feel guilty for even thinking some things.  But I heard God whisper in my ear "[No YOU can't fix it] ............. but I can."   The I WAS, the I AM, and the I WILL BE.  He has been reminding me that even if she does have a chromosomal problem and doesn't survive here on earth, she will be okay.  still.  She will be with HIM! And that's SO much better than life here.  No, it doesn't make it any easier but it does give me the peace and understanding that I so desperately need.  So I went to the appointment very frazzled and pessimistic.  I thought that overall we were due some more bad news soon.  Matt kept my mind at ease while we played Family Feud on his iPhone.  Waiting in the waiting room for 1 hour didn't help.  

We did the ultrasound first and then the amnio.  I was floored with emotions. And quite the opposite of what I was expecting.  Baby girl looks GREAT (minus the omphalocele)!!! Dr. P couldn't find anything that had developed since our last appointment.  AND she has a fully functioning umbilical cord now!  (She had the second artery last time but there was not adequate blood flow or it appeared to be 'cut off' somehow) but that second artery was working fine! Wow.  Praise God!  He looked at her heart for at least 30 minutes, and could not see anything abnormal at this stage.  I still have to get a fetal echo at my next appointment, but he was optimistic.  Her stomach was still where it should be, and no other organs had protruded into the O sac.  He reminded me that it is still very possible that organs can move into the sac (besides the intestines and liver).  She loves to wave at us and was completely stretched out.  She tried to hide a few times so Dr. P called her "secretive."  I thought that was funny = she is such a girl!

The umbilical cord is not inserted in the placenta correctly (should be on top of it but its in the side) but he was not worried about it.  Dr. P is so level-headed.  As optimistic as he could get, he also reminds us that she could still not make it for numerous reasons.  Even though she appears to be 'fine' now, there are so many things that could develop as she gets bigger.  Scoliosis, heart defects, more organs protruding, diaphragm issues, O sac rupturing, obviously amnio could show chromosomal abnormalities, stillborn, SIDS, and the list goes on.

But for the FIRST time ---- I.WAS.EXCITED. to see her!!! I know Dr. P tries to bring me back to a realistic level but I couldn't help myself.  For the first time in 18 weeks, I thought to myself.. "she's going to be ok."

Dr. P kept my mind on other things and kept me laughing the whole time.  Um, while he's pulling out needles the length of my arm.  The lidocaine shot to numb my stomach hurt the worst.  Like a really big bee sting.  Reminded me of my spinal block for my C-sections.  Then he went with the actual amnio needle.  Didn't hurt until he had to go through my uterus.  Yep... that was bound to leave a mark.  I didn't DARE look down at my stomach, but I could see the needle on the ultrasound screen.  Very weird.  It was in a pocket of fluid down by her feet.  He pulled 3 vials of fluid out (approximately 15 ml's) and it looked like urine! Not sure what I expected amniotic fluid to look like, but I was surprised at yellow water.  My water has never broken with my previous pregnancies - so maybe its the same as that?  The amnio went well.  He rechecked baby's heartbeat and said she didn't even know we were there! lol.  Um, is this a clone of Mati Claire?  She reminds me SO much of MC already.  I got down from table and went to the bathroom to get dressed.  The nurse had told me all the things to expect after a procedure like this.  As I was getting dressed, I thought to myself "man, i must be one of the lucky ones - i feel fine."  THEN I took about 5 steps out of the bathroom.  And they.are.not.lying.  Contractions and cramping! Whoa! Okay, so maybe I'm not one of the lucky ones.  lol ;)  The contractions have stopped but I am extremely sore.  Feel like I've run about 5 miles and I have a cramp in my side.  Feel like a truck hit me.  Feel like I got a giant flu shot in my stomach.  lol  But the best part is I am not going to spend the next 10 days crying over it.  Baby girl has given me hope.  And I left the office with a smile on my face!!!

The countdown is on.  Results come back in 9-10 days.  We are looking for all chromosomal abnormalities but primarily trisomy 13, 18, 21 (Down's), and a few others.  I would greatly appreciate the continuing of prayers.  Matt was holding my hand during the procedure and God had the other.  And I think baby girl would have given me her hand too if she could have (see pic below).  ;)

T minus 1 day...

First picture was almost a month ago:  waving to us.  I just want to reach out and touch it!  
Second picture is her sweet profile yesterday. ~19 wks
Third picture is her omphalocele.  ~19 wks.
Isn't she beautiful? :)

God is GOOD!  Thank you for all the prayers and well wishes.