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!)
He snuggled down into my arms and drifted off into his first little nap.  The sounds of his sweet little snore were just like the purr of a kitten.  I was so thankful for that little raspy purr.

He was given his first bath and he cried through the entire thing.  I don't think I have ever enjoyed hearing a baby cry so much.  Then when he was having his hair washed he stopped crying.  He loved having his hair stroked!
 And he had the most beautiful hair.  It was so soft!  Golden blonde with the beginnings of a curl.  Just like his brother.
 He loved to hold his hand up against his mouth.  It looked like he was sucking his thumb but his hand was really curled up in a little fist.


This is the view of him I saw the most.  Cuddled into my arms with one hand around my finger and the other pressed to the side of his mouth.  Purring away.

One month premature and that boy had rolls!  He was a healthy boy.

And those precious tiny feet!  They were so ticklish!  He would pull his feet away at the slightest touch.  He was not a fan of being tickled.  Gets that from his mama!
After my husband's family had spent time with Matthew they said their goodnights and left for home.  My husband decided to make a quick run home to grab his things, since he hadn't had a chance to pack anything for the hospital, and get clothes for our kids and drop them off with his sister.

A few of my friends were still with me at the hospital.  It was around 9pm.  I was holding Matthew when his little purr stopped.  I looked at him and he was not breathing.  In an instant his whole body went from being a rosy pink to a dark purple.

We called the nurse.

She came in and immediately started to rub his little back.  She was trying to stimulate him to start breathing again.  I started to tickle his little feet.

I was terrified.

The nurse asked, "Is Dad close?  You might want to let him know to head this way."

My friend immediately called him.  I worried about the panic he must be feeling not knowing what was going on and his safety as he drove back to the hospital.

Finally Matthew let out a little cry and his breathing started back up.  His color went back to normal and his heart rate came back up.  As quickly it started his little apneic spell was over.  You would never know it had happened.

My breathing also resumed at that moment.

My husband had already been on his way back so he arrived soon after.  We were told that the apnea episodes were not only common for Trisomy 13 babies (A fact we had been aware of and we knew ahead of time that most babies with Trisomy 13 die of respiratory failure due to the apnea.  Their brain simply forgets to send the signal to breath.) but premature infants can have that problem as well.
The good news was that Matthew did not seem any worse off after his episode.

Around 11pm Matthew was given his first meal.  We had been given the option to feed him or not.  We did not consider withholding nutrition an option at all.  We could have tried to feed him by mouth but because of his cleft palate (his mouth and nose were one opening) there was a danger of the milk or formula getting into his airway and causing further breathing difficulties.

We opted for a feeding tube.
He was given formula and a breast pump was ordered for me so we could give him breast milk through his feeding tube as well.
A syringe was attached to the end of the tube and filled with formula.  It was then allowed to drip down the tube into his stomach.  He tolerated the feeding well.  Never seemed to be bothered by the tiny feeding tube.  We were told some babies kind of tongue the tube out so it has to be continually reinserted.  Because it didn't seem to bother him we opted to leave it in.  It seemed like reinserting it would be more irritating to him than leaving it.

My family arrived along with my father in law.

They spent some time with Matthew and my family headed to their hotel.

My father in law was just leaving when Matthew had his second apneic episode.

Again his little snore stopped.  His chest stopped moving and his body immediately went dark.

Again we called the nurse and we started rubbing his little back and tickling his feet.  Anything we could do to stimulate him.  Basically we were doing our best to piss him off!  If he would cry he would breathe.

After a minute or two that seemed like an eternity he finally began to let out a few little crys.  Then he started breathing again.

Again his color returned to normal, breathing back to normal, heart rate back to normal.  You would never know a minute ago he had looked so bad.


Everyone had come and gone and we found ourselves alone with Matthew.  I had been fighting sleep the whole evening as he had been passed around from family member to family member.  My eyes kept rolling back into my head and my eyelids refused to stay open.  I had actually dozed off during my c-section because I was so tired!  Between the lack of sleep the night before and all the stress of the day I was totally worn out.  Thankfully I had been left on the epidural for pain medication so I didn't have the added grogginess of pain meds.

My husband was exhausted as well.

Let me tell you a little something about our nurses.  Every single nurse we had was a saint.  Saint I tell you!  I have never encountered such an amazing group of people.  I could go on and on all day about each and every one of them and it would never be enough.  Amazing.  Labor and delivery nurses and NICU nurses.  The doctors too.  All incredible.  Also we had our own nurse.  I was her only patient.  And Matthew was the only patient assigned to his NICU nurse.  We had their undivided attention any time we needed it.  A press of a button and they were in our room instantly.  As my mother later noted, it isn't often that you have a nurse brush and braid your hair!

That evening (I guess it was actually morning by that point) our Labor and Delivery nurse offered to watch Matthew at the nurses station while we took a quick rest.  We were both too exhausted to stay awake and too afraid to fall asleep.  What if he stopped breathing while we were sleeping?  We decided to accept her offer.  We knew that eventually we would not be able to fight off the sleep and we didn't want to take the chance of dozing off and not noticing if his breathing stopped.  She promised to notify us if there was the slightest sign of a change.

It was a hard decision to make.  I didn't want to miss out on even a few minutes of his life.  What if he stopped breathing while he was away and didn't recover this time?  I also knew I couldn't function enough to fully appreciate him if I didn't get a tiny bit of rest.  But like I said, I couldn't keep my eyes open.  And I felt he was safer with the nurses watchful eyes.  Plus he was literally right outside our door in the hallway.

We rested.  I slept and my husband dozed in and out.  Matthew spent the time at the nurses station being passed around and loved on.  Our nurse told us that at one point one of the doctors stopped by and held him.  When a nurse commented that it was her turn the doctor refused to give him up!  What can I say?  He was just too precious!

After a bit of rest we called our nurse and had him brought back in.

Right about 2am Matthew started to cry.  He hadn't really cried other than that one cry right at birth, during his bath, and a few little cries when he had gone apneic.  We checked his diaper, clean.  Looked to see if anything was hurting him.  Tried to change his position and soothe him.  He remained fussy.

Then the nurse came in for his second feeding.

The minute that formula was in his tummy he settled right down.  He had just been hungry!

From then on every three hours right on cue he would start to get fussy.  He knew when it was feeding time! Other than that he remained a very content little guy.
Sometime around 9 am I was taken off the epidural and given pain medication that made me sleepy.  That and the fact that I had still had a very small amount of sleep in the last 48 hours left me fighting sleep again.  My husband was still exhausted since he never really slept on that recliner.

This time our NICU nurse offered (when I say offered, I mean she and our other nurse kindly and firmly recommended to us that we really should get some rest) to take Matthew to the NICU.  He would remain with her at her desk the entire time and she would watch him.  Again we didn't have much of a choice since we were fighting sleep and didn't want to take the risk of dozing off and not watching Matthew.

So we sent him to the NICU until 12 and notified our families to come over at noon.  My husband headed home for a very short nap.

Right after he left the Neonatologist came in to talk to me.  Matthew was doing really well.  His color was good.  With the exception of the apnea, he was breathing well.  He was tolerating his feedings well and was passing the food through as evidenced by several diaper changes.  Plans were made for Hospice care to meet with us in the next few days to teach us to care for Matthew at home.  (It looked like he would be going home!)  The Neonatologist recommended a sonogram of his heart just to make sure there were no problems that had not shown up previously since that could create complications with his feeding.  I agreed.

Around noon Matthew was brought back in.  He had done well but had one apneic episode.  He had paled out and stopped breathing for a short time.  But it hadn't lasted long and his breathing had gone back to normal.

Family and friends arrived and my husband returned.  It was a bittersweet day.  Filled with caring for and loving on Matthew while listening for the sounds of his breathing.  He was given many gifts.  A beautiful handmade blanket, tiny booties, a new hat, teddy bears and a mum that was hung up on the door to our room, flowers, lots of little treasures.

He had several more apneic episodes throughout the day.  We were still hopeful that he would be coming home.  I had fought so hard against getting my hopes up but I was finally starting to believe he just might get to come home.  The Peanut made a comment at one point that day that he really wanted Matthew to come home and be with us for Halloween and Christmas.  My husband and I really hoped we would get that chance.
Family Life Counselors stopped by and scheduled time the following day to meet with the Princess and the Peanut to see how well they were understanding and coping with everything that was going on.

"Unkey Monkey" and Aunt Jamie took over babysitting duties.
My husband started to learn how to insert Matthew's feeding tube.

The kids got the chance to help "my nurse" and the NICU nurse make little keepsakes of Matthew's footprints and handprint.
It seemed like I was always holding Matthew whenever he went apneic.  I started to worry that it had something to do with how I was holding him even though I really knew better.  I'm sure it had more to do with the fact that I had a bit of an unfair share of time holding him.  I did my best to share him but he did seem to end up back in my arms quite frequently.  I did so love to hold him.
Throughout the day my blood pressure was still being monitored closely.  It seemed that every time Matthew had an apneic spell the cuff would go off and an alarm would sound letting everyone know my blood pressure was too high.  I wonder why?!

A little before 6 pm Matthew went apneic.  My mother in law was holding him at the time.  This time he stiffened up before he stopped breathing.  We started to stimulate him and called the nurses.  Our nurse was away at the moment but another nurse came right in.  He wasn't responding to the stimulation.  The nurse pressed a call button and in an instant Matthew was surrounded.  I think every nurse on the floor was in our room trying to get our little Matthew to breath again.  He was given "blow by oxygen" and when that didn't work they suctioned him.  The NICU nurse arrived.  She took over and handed Matthew back to us.

It wasn't looking good.  He still wasn't breathing and his heart rate had dropped very low.  Our nurse arrived.  We held him and talked to him and continued to softly rub his back.

Finally a tiny cry.  But his breathing did not resume.  We waited some more.  Heart rate was still low.

Another little cry.  Slowly but surely he took tiny gasps.  And then he started breathing again.
But his breathing was more labored.  And he was more raspy.  He had fluid on his lungs.

Matthew Part III: Going Home