It's hard to know how to even begin to tell his story.  How do I begin to put into words what is in my heart?  It was really one of those, "you had to be there" times.  But I want to share his story.  Because part of being a mother is knowing your child is wonderful and perfect and wanting the entire world to know how wonderful and perfect he is too.  Before the details start to fade and blur.  I want to introduce you to my 36 hour miracle.  I want you to meet my precious Matthew.

I guess I will start at the beginning.

Friday September 21st was the Princess's 4th birthday.  We took her to Legoland.  Afterwards we took her to the toy store to spend some birthday money she had been given.  She proved her natural shopping abilities by scoring a few deals and walking out of the store with over $70 worth of toys for $30.  It was a happy day.

That weekend was a relaxing lazy weekend.  Not much productivity.  I wanted to write a couple of blog posts telling you about the day we sat our kids down and explained to them that their baby brother might not get the chance to come home.  I wanted to tell you about the name we had chosen for our son.  Matthew meaning Gift of God.  I wanted to tell you about the Care Conference we had just that week discussing all our plans for Matthew's birth.  How the doctors had all acted very positive about Matthew's chances for coming home with us.  I wanted to tell you about making preparations and writing a birth plan and packing a bag.  I wanted to publish the post I had written about two of my friends who have gone so above and beyond the call of friendship duty.  To whom I owe a life debt.  But my computer had gone from making a strange noise, to fan going out and overheating.

5 weeks until my due date.  4 weeks until my scheduled c-section.  Plenty of time.

Little did I know that there would be no more preparations.  No written birth plan.  A half packed bag.  And when all was said and done the list of people I owe a life debt to has increased significantly.

On Sunday September 23rd we went to church.  After Mass we walked around the church festival a bit.  Then we headed home.  I had a few contractions throughout the day.  Just tightening, no real pain.  All the same they had me a bit worried.  See, I never had Braxton Hicks contractions with my other pregnancies.  About a month ago I had contractions.  They were upper abdominal and clearly different than anything I had ever had before so I didn't worry about those.  These however seemed more like "normal" contractions.  So I did my best to relax and kind of hung out in bed all day drinking water and playing a lot of Spider Solitaire.

As the day went on they became more frequent.  I tried to tell my husband not to worry.  This was totally normal.  Inwardly I was starting to panic a bit.

Bedtime and I tried to get some sleep.  But the contractions were becoming more frequent.  And more painful.  I would start to doze off only to be awakened by a contraction.  I started to time them.  They were coming every 15 minutes or so.  I decided to take a shower.  Maybe that would relax me and they would stop.  Me stressing about them was probably not helping matters any.

I took an hour long shower.  Only had one contraction the whole time.

Good.  Now maybe I can relax and sleep.  By morning time they will have stopped.

I went back to bed.  It was 3am.

20 min

12 min

8 min

10 min

I moved to the recliner.

6 min

1 min

6 min

14 min

9 min

At this point I was timing contractions by how many Hail Mary's I would say during one.

7 min (two and a half Hail Mary's long)

11 min (two Hail Mary's)

5 min (three Hail Mary's)

I was panicking.  It was too soon.  My son would have enough problems without being premature too.  I was only 35 weeks.  I just needed at least two more weeks for him to be full term.

I thought of Mary on that road to Bethlehem.  Was she afraid?  Was she in labor as they searched for a place to stay?  Did she fear having no place to give birth.  That her child would be endangered by exposure to the elements?

Was my son about to lose any tiny chance he had at even a few hours of life?

This was not the plan!!  God and I had a bit of a chat.

"I'm not the only one whose plans will be affected!  There are lots of people who have made plans to be here.  Days off work have been taken.  Hotels have been booked.  They want the chance to meet him.  This is not the plan!"

And God answered, "It's not YOUR plan."

These contractions were exactly the same as the contractions I had right before my water broke with the Princess.  Fluctuating between 5 and 10 minutes.  Same pain level.  I knew.  This was real labor.

At 7:30 am my husband woke up.  We decided to call the doctor and head to the hospital.

Last week we had our first appointment at the new hospital.  Special thanks to our emergency last minute babysitter who met us at the hospital after a midnight text from me.  Because I have the bestest friends in the whole wild world!

We met with a nurse and a doctor who explained the program we will be part of.

Um.  Amazing!

Let's just pretend they sat me down and hooked me up to a mind reading machine.  Then they custom designed a program around me.

That's pretty much how it felt.  I'm sure it's how it feels to every woman going through it.  Because that is really what it is.  Let's figure out exactly what kind of care and treatment a woman carrying a high risk baby would want and then provide exactly that!  What a novel concept!!

First of all they are a referral center only.  They only provide care for women with babies who have some kind of high risk diagnosis.  Which means they are entirely equipped to handle care of high risk babies.  They also have actual experience with Trisomy 13 babies.

They are experienced and therefore know exactly how to react.  They know how to speak to us without saying the wrong things or avoiding the subject.  They are kind and compassionate but at the same time they are able to share information without watering down the facts.

At one point my husband asked what the doctor's experience was with the babies they had delivered who had Trisomy 13.  How long they had lived.  Because as he said, it's one thing to look at a bunch of statistics. It's another to talk to someone with actual experience.  The doctor immediately responded, "Oh, you really don't want to ask that question."  Then he stopped himself.  "Of course what I mean is, you do need to ask that question.  It's just not the answer you would want to hear."  He said that in his experience they usually make it anywhere from an hour or two to a few days.  It is pretty much unheard of for them to leave the hospital.

This is something we knew.  But again, it's one thing to see the statistics and another to talk to someone with actual experience.

But he went on to say that nothing is impossible and that is why they have to be prepared for anything.  (Thank you, this is what I have been saying.)  They have to be equipped to meet the baby's needs whatever they might be.  If that means going home, however statistically unlikely that might be, they are prepared for that.  He said they recently had a baby born with such a severe diagnosis, statistically he had almost a 0% chance of survival, even for a few minutes.  He said that baby went home.  As of our conversation, on day 20, that baby was still living.  The fact is that each baby has to be treated individually.  He went on to say they treat the babies the exact same way they would treat an adult.  (Wait, like real people?!)

Now wait just a minute.  You aren't getting excited yet are you?  Because there is so much more!

Today we had an appointment with a Neonatologist.  I have been looking forward to this appointment for weeks with a mixture of excitement, nervousness, anxiety and various other emotions.  To me this was one of our most important meetings.  A what to really expect kind of meeting.  I went in with a long list of questions swirling in my head.

What kind of equipment would he be hooked up to?  How would that affect holding him?  How would that affect my children holding him?  How would that affect his Baptism which we want to have at birth?  When/if he came home what should we expect/plan for regarding his care.  Etc. Etc. Etc.

Those questions evaporated within about the first thirty seconds.

Our meeting started with the doctor asking me what I knew about our son's diagnosis.

I told him that I know he has Trisomy 13.  I know he has a bilateral cleft lip and pallet.  I know he has 2 holes in his heart. (VSD)  I know he has brain "abnormalities" typical of a Trisomy 13 baby.  I know that babies born with Trisomy 13 typically (and when I say typically I mean pretty much always) have breathing difficulties due to Apnea.  I also know that there is a very low survival rate.

He asked me what I was expecting.

I told him that while I am very aware that the survival rate is low and the chances of being able even do anything to save or extend his life were slim, I wanted to do everything in our power if the opportunity presented itself.

I was met with a blank stare.

Then he basically told us that they don't really do any kind of intervention with a Trisomy 13 baby.

I'll be honest, I was a bit fearful of that response.  I did worry that I would be presented with arguments on why intervention was a bad idea.  At that point I figured we would engage in some kind of dialogue about the different types of interventions, pros and cons and in the end we would have to make specific decisions on what types of interventions we wanted to insist on.

Instead I heard this.

"We aren't equipped for any kind of interventions.  If you wanted to do that you would have to deliver at a different hospital."

He basically said that they are equipped to handle premature babies but that is about the extent.

My husband asked for some clarification regarding what they were not equipped to do with a Trisomy 13 baby.

He started listing examples of things they wouldn't be able to do.  Like surgeries.  For example if the baby needed heart surgery they wouldn't be able to perform it at that hospital.

I pointed out that we had already met with a fetal cardiologist who told us that heart surgery wouldn't be performed at birth for a VSD on any infant.  She also pointed out that Trisomy 13 babies don't die of heart failure they die of respiratory failure because of the Apnea.  The brain simply does not send the signal to breath.  She also specifically stated that the hospital we have been planning on delivering at is "more than equipped to handle the needs of a Trisomy 13 baby."  (My husband at the time told me he got the vibe of "since there isn't anything we can do anyway" but I didn't pick up on that at time time.  Now I fear he might have been right.)

The response to that was basically, yes that's correct but if the baby did have to be put on any kind of breathing assistance we aren't really equipped to do that and then send them home.  For example if the baby needed to go home with a c-pap machine we wouldn't be able to provide one.

He also brought up feeding tubes and said again that wouldn't be something they could provide for at home care.

A pretty much exact quote.

"If you were planning on actually taking the baby home, we wouldn't be equipped for that."

In other words, we are only equipped if the baby doesn't survive.

Way back in the day, when the Peanut was potty training, he actually was night time trained before he was daytime trained.  He is the soundest sleeper ever and at night he would half wake up screaming.  For awhile we thought it was night terrors.  He would scream and cry but never even open his eyes.  Because he wouldn't fully wake up he could never respond to our questions and let us know what was wrong.  Eventually he would calm down and go back to sleep.  The next morning he wouldn't remember.  I'm not sure how we eventually figured out to take him to the potty.  I guess we noticed that he was also wiggling around and decided to give it a try.  He was wearing a diaper at night so he would half wake up having to pee.  He would scream and cry then pee and go back to sleep.  Once we figured it out we just took him to the potty and he would pee and then go happily back to bed.  He would never fully wake up through it all.  We were then able to put him in underwear at night and he never had a nighttime accident unless for some reason we were too slow getting him to the bathroom.

Eventually he grew out of this phase and would wake up on his own and go to the bathroom in the middle of the night without assistance.  Every once in a while when extra tired he would have a repeat and wake up screaming.  These occurrences were pretty rare so, many times, they threw us off.  We would forget and would waste time trying to figure out what was wrong.  Lesson learned.  If he wakes up screaming, potty first, questions second.

Recently he has been experiencing a relapse.  I have kind of wondered if it had something to do with my being pregnant.  More specifically, since I already wake up twice a night having to pee myself and the Princess sometimes wakes up having to pee and still needs assistance, why not add a forth nightly bathroom trip.  You know, to help prepare me for the all nighters once the baby is born.

Now he seems to have outgrown the screaming and instead rocks back and forth whimpering.  Again, his eyes don't open.  The Princess will wake up to the whimpering and drag herself out of bed, make her way to my room, wake me up and tell me that the Peanut needs to go potty.  She then slumps back into bed and happily drifts back to dreamland while I wake him up and get him to the bathroom.

This was happening every night and I was really starting to wonder what had caused this sudden relapse.

Then he dropped the bombshell on me.

Now, before I embark on my little pity party I just want to express a few things.

First is that it is really hard for me to share at times like these.  Don't get me wrong.  I can complain with the best of them.  About all the little annoyances and inconveniences.  I don't like to clean.  I can't cook.  My kids keep making messes.  Wah!  But when something major happens?  I fold inward.  I cave.  Just hide away from the world until it all goes away.  I have a really hard time sharing the difficult times.  I feel bad calling out for everyone to feel sorry for poor little me.  Then I feel totally overwhelmed when everyone steps forward with offers of help or support.  How will I ever begin to repay them?

This time I am pushing myself out.  I know hiding away won't change anything.  I would have to say something eventually.  Unless I just quit blogging all together and I'm not really ready to do that.  It will only get harder the longer I wait.  And if I really am going to be open and honest then I need to be able to share the lows as well as the highs.

So I will start by sharing some of the highs.  That way you will know that there is some brightness in our world right now.  When I talk about my busy schedule, it's not all doctors appointments.

It's also...

Today I wait.  I wait for the results of a test.  I wait to hear the results that, to be honest, won't change anything.

The fact is that if the results come back positive we will have a name for what we face.  If the results are negative it doesn't really change anything.  It doesn't make the problems go away.

What I know now is that we are going to be challenged.  Our baby will have needs I can't even begin to imagine.

20 Weeks

When we went in for our 20 week ultrasound, I had a bad feeling.  It was June 13th.  I won't lie.  The date made me uneasy.  June.   My unlucky month .  The 13th.  That just couldn't be good.  

Waiting room before the ultrasound

The ultrasound technician was pretty quiet the whole time.  A few times she mentioned that the baby was moving around and making it hard to see things.

When we finished she told me, "the doctor will follow up with you with the results."

Those words kept playing over and over in my mind.  The doctor will follow up with me?  Why does the doctor need to follow up with me?

I tried to dismiss my fears.  Maybe she just always says that.  Maybe it didn't mean anything.  Maybe.

The next morning I got the call.

What I heard the doctor say was that the baby had a cracked rib and that the technician couldn't find a stomach.

What she had actually said was that the baby had a cleft lip and the technician couldn't find a stomach.

In tears, I ran frantically up the stairs to tell my husband I had to go in to a specialist right away for a more detailed ultrasound.  Thankfully he was working from home and we dropped off the kids with my sister-in-law and went straight to the doctor's office.

Then we sat and waited.  My husband spent our time looking things up on his phone.  At one point I picked mine up.  I couldn't take it anymore and I had to know.  He practically snapped at me.  "What are you doing?"  "What do you think?"  "Don't."  My stomach churned.  All I could think about was that cracked rib.  How could that happen?  Was there no stomach and the ribs were imploding?!

Finally we were called back for the ultrasound.

This technician was more vocal.  She described everything she was looking at.  All I could do was look for a stomach.  She kept focusing on the heart.  I figured she was really looking for the stomach but didn't want to freak us out so she was pretending to look at the heart.  Still, she kept measuring the heart.  I wanted to shout out, "THE STOMACH!  FIND THE STOMACH!!"  Finally she moved down a bit and I saw a little black spot.  Could that be it?  Casually she mentioned it as she continued on.  "There's the stomach and those are the kidneys."  We breathed a sigh of relief.  "Thank you God!  Everything's ok."

Then the doctor came in.

"You guys are here about a cleft lip."

"Cleft lip?"

He stopped and looked at us.  "What do you know?"

"Nothing really.  Something about a missing stomach."

"The stomach is fine."

Then he delivered the news that turned our world upside down.

The baby has a bilateral cleft lip.  It extends all the way up on both sides to the nose.  It's possible that there may be also a cleft palate but we can't see inside the mouth.

Ok.  Not the best news but that's fixable.  Certainly not as bad as the missing stomach we had been fearing.

But.

The baby also has some other "abnormalities."

The #1 search term leading visitors to my blog is "how to dress like a mom."  Everyday women all over the world look to me for fashion advice.  As you can imagine I don't consider myself fashionable in the least.

Imagine my surprise when I read this post by Cari @ Clan Donaldson.  She is participating in a fashion linkup and the inspiration is this picture.

Source

Wait!  I own this outfit!!!  I wear it all the time!  More or less.  Are you telling me I can be fashionable?  Well I certainly have to try.

Let's start with the skirt.  Long neon colored knit skirt.  Check!
Now for the t-shirt.  So many to choose from.

Do I go with Star Wars?

Too cartoony.

Purple Batman?
This one has an added bonus of matching the blue in the skirt perfectly.  In fact it is a usual favorite of mine to wear together.
Too bright?

Pepsi?
Too blue.

Finally I found the perfect option.

I am terrible at planning things.  Truly terrible.

My husband is a planner.  He always needs to know what the plan is.  Whenever his sister and I take a trip to the mall to hang out and browse, he asks us our plan.  We always answer the same way.  We "plan" to hang out and browse.  It drives him crazy!

I should clarify something.  I am terrible at making active plans.  When I do plan something I usually leave some really important part out or go way overboard on tiny unimportant details.  It all falls apart.  Which is of course why I don't like to plan anything.  And I am lazy.

I am really good at making passive plans.  By that I mean that I simply expect things to go a certain way without any direction or interference from me.  It should just happen.  You know?

Drives my husband crazy!

Perfect example.

Tomorrow I will have my 20 week ultrasound.  Long before I even got pregnant, I came across the idea for a "gender reveal party" on Pinterest.  Complete with a cake revealing the gender when cut.  Genius!  It seemed so perfect.

This weekend is the 34th Annual Superman Celebration in Metropolis Illinois.  In honor of this event the kids and are are all wearing Superman shirts today.  It's the next best thing to actually being there.  At least that's what I tell them...

Super Cowgirl

Red K Superboy

This is what my lucky hubby gets to come home to everyday!

Whenever an image of a baby pops up anywhere in the house, a state of national emergency is declared.  Two children begin screaming and running around the house frantically.  I am located and strongly urged to "COME SEE THE CUTE BABY!"  It doesn't matter where I am or what I am doing, bathroom included, I must drop everything and run to see the cute baby or order (or at least a lack of screeching) will never be restored in this house.  "Will our baby be that cute?"  "I sure hope so!"


The cute baby spotting phenomena is also extended to my computer.  As it so happens, more than a few of the blogs I read have lately been showing off adorable pictures of brand new babies.  Therefore, anytime I am on the computer, two children are in my lap exclaiming "awe!"  "Scroll down, scroll up, awe!"  I should actually count three children in my lap because the one in my tummy has been growing and is taking up a bit of lap space him/herself.  As much as I love the cuddles, I also treasure my space.  Especially when attempting to type.


Unfortunately, the cute baby spotting has also been occurring frequently in Mass.  If you are the mom of a little baby and happen to be in Mass one Sunday, you might find yourself being pointed at across the church by a Peanut.  This Peanut will be frantically climbing across the pew, over his dad, around his sister, all while pointing obviously, to reach his mother and exclaim, "Do you see that cute baby?!  Will our baby be that cute?"


We had a very nutritional breakfast this morning.  The Peanut ate a lemon and the Princess had a jelly sandwich.  It was that kind of morning.

The boy loves lemons.

He ate the whole thing and went back for more.

You thought I was going to actually stick with a theme there didn't you?  Well, except for the Superman part.  But that was of vital importance.  Much like baby spotting.


Yesterday, I posted my first ever giveaway.  Don't forget to enter!!!  Go, now.  You know you want to!!!

The Peanut.
He is the king of fit pitchers.  When he really gets going he will screech louder than any horror movie victim.  He can go for hours and never tire.  When he was still a tiny lil guy he would sometimes fight bedtime so hard that he would still be screaming 4 hours after he was put in bed.  I would think, surely he will pass out from sheer exhaustion at any moment.  No.  Never.  It was enough to drive me over the edge.  I would literally have to force myself to stay away from him because I was seeing red and there was no telling what I might do.  Somehow we both lived to tell the tale.  He has outgrown his fits for the most part.  Sometimes we still see glimpses of the little Hulk but they are pretty rare now.  And they never last longer than about twenty minutes or so!

The Princess.
She tries to throw little tantrums sometimes.  Something upsets her and she drops down to the floor crying.  She always does the little, peer out to see if anyone is watching her, maneuver.  Unfortunately for her, her older brother ruined me.  When she lets out her tiny squeals, that normally last for all of two and a half minutes, I can't help myself.  I laugh.  I try not to let her see it.  But it's so darn funny.  Like that little display is going to budge me!  I have lived through WAY worse.  When I send her to her room to cry it out she is usually done before she makes it to the room.

All this has me wondering.

Me.
When I pitch my fits, does God see red?  Does He throw His hands up in exasperation that I never learn?  Or does He laugh at me?

I like to think he laughs at me.  After all, He is infinitely more patient that I could ever be.  And I sure do need that patience.

Hopefully, as I have gotten older and wiser, my fits are less like my son's and more like my daughter's.  Because, in all honesty, I know better.

When something doesn't go according to MY plans, I know that I should put my trust in Him.  He knows what's going on.  He has a better plan than mine ever could be.  Like I said, I KNOW all that.  I'm just not always happy about it.

Recently, when things didn't go according to my plans, I managed not to throw a monster fit.  I refrained from shaking my fists at the heavens.  I even admitted that God probably knew what he was doing.  Didn't mean I liked it.  Oh, I pouted.  I whined.  "This better be good!"  I sulkily warned Him.

The Peanut has been pampering me today.  I'm not sure where he got the idea.  Perhaps all the Mother's Day commercials?  He started off by doing my hair.  He pretty much used all his sister's hair dealies.  

Don't be jealous.  We can't all be this beautiful!

That pink thing on top is a tiara.

Possibly he was just tired of my hair looking like this. 

Later he gave me a back massage.  Not even sure where he ever even heard of back massages.  He had to ask me how to do it.  It pretty much consisted of him softly rubbing my back.  I will be sure to encourage this type of behavior!

--- 1 ---

Yesterday I did housework.

I know!

Not sure what is wrong with me. I would claim to be nesting but I don't think that happens until the third trimester. Can't really say for sure because even pregnancy has never prompted me to clean like a crazy woman. So, maybe it's a virus? Like some kind of clean freak parasite taking over my body?

I actually unloaded 
and
 reloaded the dishwasher. Washed the Crockpot. Got dinner in and cooking with plenty of time to spare. All before 10am! Dinner finished cooking at exactly 5pm on the dot.

Which is exactly when my husband declared it was time to take the kids swimming in the still too cold pool. So, we kept dinner on warm and I watched my crazy shivering family splash around for an hour. They had a blast!

This morning I realized that somehow, during the course of the day yesterday, half the dining room table was mysteriously cleaned off. I have no memory of these events. This leads me to conclude that the parasite theory is indeed valid.

--- 2 ---

You will be happy to know that today I am fully recovered and back to my usual housecleaning avoidance at all costs ways.  

Though I really do need to do a load of laundry. We have a busy weekend ahead of us full of going places that require suitable attire and not superhero feety pajamas.  

Where can I find that parasite?

--- 3 ---

See this rocking chair?

It was mine when I was a wee one. Then my 
naive
 generous parents thought they would give it to my children so they could enjoy it and someday pass it down to their own children.  

Unfortunately, I was a much better behaved child than my own children are. I chalk that up to the good parenting I received.  

My kids?  

Might as well have been raised in a barn.  

They have yet to grasp the concept of 
sitting
 in chairs. Rather, they seem to believe that all furniture was created to be their own personal jungle gym. Every day I hear the creak of my favorite little rocker, threatening to give out and crumble into sawdust. I turn to see my son standing in it while attempting to rock hard enough to launch into orbit. I begin to have convulsions.  

It also doesn't help that the chair has become the favorite item to use in a "friendly" game of tug of war. See, now both kids love the chair. Even though they have several other child sized chairs and adult sized couch, loveseat, recliner at their disposal, only the rocker will do.  

Finally a compromise is reached.  

If you are still reading this after that title you may consider yourself warned.  Read at your own risk!

You guys know those pregnant women who tell stories about their easy pregnancies and painless childbirths?  The ones who gain approximately 10 whole pounds their entire pregnancy and it is all in a cute little basketball shape on the front of their tummies.  They talk about "almost" having to resort to buying maternity clothes.  Labor lasted about 20 minutes and in one tiny push their perfect baby, who was born sleeping through the night by the way, came into the world.  Despite the fact that they were entirely un-medicated they amazingly felt no pain whatsoever.  The second the baby was born they sprang from their bed fully recovered and already back to their pre-baby size and shape.

You know.  The women that make you want to vomit and scream liar right in their faces.

Speaking of vomiting...