September 24th, Matthew was born.
September 25th, Matthew lived.
September 26th, Matthew went home.

Imagine the roller coaster of emotion we were on.  We had gone from finding out our son had Trisomy 13 and learning he wouldn't have much time with us, if any at all.  To hearing the positive news at our Care Conference that, for a baby with Trisomy 13, Matthew had relatively few life threatening issues and he had every chance of going home with us.  To going into labor a month early and not knowing if having him early would put him at higher risk.  To giving birth to a rolly polly, 6lb 3oz, rosy pink, healthy little guy.  Healthy except for the occasional failure to remember to breathe.

This is the part of the story that is hardest for me to share.  Not because it's sad.  It has it's sad moments.  But more than that it is precious.  It's the part of the story I treasure the most.  Because it's the story of our private moments with Matthew.  It's the part of the story that only we know.  And as hard as those moments were, they were also my favorite moments with him.  Because it was in those moments that I felt closest to him.  And in those moments I was surrounded by saints and angels.  Those were the moments when all the prayers, the hundreds if not thousands of people praying for our Matthew, those prayers surrounded us and held us.  They carried us through.

But if I really want to tell his story, I have to share these moments with you.  Because the story is not complete without them.  I want you to know my son as I knew him.  And without the chance to introduce him to you in person, this is the next best thing.

 And he was beautiful!

Once I got back to the recovery room I was able to hold him.
 We started bringing family and friends into the room and everyone had a chance to hold him and love on him.  His brother and sister got the chance to meet him.
The Peanut helped to change his first diaper.

 And he got to hold Matthew's hand which is something he had told me he wanted to do.

Cousins

Everyone of his visitors got to spend time with him and hold him and love him.  He was passed around and around.

Let me tell you about my little "Matt-man."  (Feel free to hum the Batman theme song whenever you say his nickname!)

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.

"A miracle is something that seems impossible but happens anyway." MIB3

Weeks ago, when we were freshly reeling from the difficult news we had received about our baby, we sat in Mass and listened to the Gospel.  It was about miracles.  We listened to stories about how Jesus had healed a woman and brought a little girl back to life.  I'll be honest.  At that moment it kind of felt like a bit of a slap in the face.

I am sure I felt a bit like some of the people in the crowd might have felt.  Pressing around Jesus.  Looking for miracles. Then one woman who touches the hem of His garment is healed.  Her faith healed her.  It makes me wonder if any of the people in the crowd asked the question.  "What about my miracle?  Why her?  I have faith too.  I wouldn't be here if I didn't believe.  Why not me too?"

It was a question I found myself asking.  "Where is my miracle?"

Because in that moment all I wanted was a miracle.  Not just any miracle of course.  My very own custom made to order miracle.  I wanted to be able to ask God for exactly what I wanted exactly the way I wanted it.

My vision is very short sighted.  I can't see the whole picture and because of that it is sometimes easy to forget that there is something beyond my field of vision.

It's all too easy to call out that challenge to God.  God you are all powerful.  I know you can do this.  So why don't you?

Sound familiar?

It's pretty much the same challenge the first thief called out to Jesus on the cross.  "Are you not the Christ?  Save yourself and us!" Luke 23:39

Of course the second thief had one simple request.  "Jesus remember me when you come in your kingly power." Luke 23:42  And we all know what Jesus responded to him.  He said, "get down off the cross.  Your faith has healed you."  Right?

No?

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."