Post-Op 4pm

We received a call a few minutes after my previous post letting us know Matthew was still in the OR being closed up.  I was hoping I hadn't posted before the other shoe dropped and thankfully it has not. 

We received a call from post-op with good news.  They were able to extubate Matthew and he was breathing easily on his own.  We saw him for about 30 minutes in post-op before they moved him to the pediatric ICU.  Now we are in the waiting room awaiting him to be settled.

A few notes from our quick visit with Mattie:
-He's got a HUGE bandage on his head.
-He seems to be in a bit of pain...crying or whimpering unless he is eating or sleeping. 
-He took 4 oz of pedialyte in no time flat.
-He is flushed throughout his face, neck and arms.
-The swelling in his face became more and more pronounced within the 30 minutes.
-He's hooked up to more tubes and monitors than the space shuttle. 

I hope that we can get Matthew's pain under control and he can have some restful sleep this evening.  A part of me is waiting for the other shoe to drop, but I am still cautiously optimistic.  Again, thank you for the prayers and well wishes as Matthew recovers. 

Cranialfacial Surgery = Success

We just received a visit from our cranialfacial surgeon (Dr T).  Matthew's surgery was successful.  My elation is somewhat tempered by our roller coaster experience after the heart cath, but this is very good news! 

Some of Dr. T's key points:
-"Nothing is ever easy" meaning it was slower than they expected.
-"But it went perfectly."
-They had to do a central line for blood.  (Matthew is a notoriously difficult stick.)
-Matthew did need a blood transfusion. (Thank you Peter and Dad!!)
-Dr T expects that Matthew will remain intubated until tomorrow, possibly Wednesday. (This is longer than originally projected and will mean extra time in ICU.)
-Swelling on the 2nd day is the worst.  (We are preparing ourselves.)
-Matthew is heading to the ICU and we'll get to see him once they have him settled.

We are cautiously optimistic and pray that Matthew's recovery goes as well as his surgery did.  Thank you for the continued prayers and well-wishes for our sweet baby Matthew.  The notes, the posts, the texts, the prayers, and the warm thoughts all give us comfort.  Thank you!!

Cranialfacial Surgery 11am

So far, so good.  Surgery got started a bit later than expected (cutting began at 9:30) because they had a hard time inserting Matthew's IV.  Thankfully no issues with the urine catheter.  The cranialfacial surgeon is there throughout the surgery and the neurosurgeon comes in just for his piece.  At the last update, the neurosurgeon was scrubbing in.  His part takes about an hour and he'll come out to speak with us when he is done.  Then the cranialfacial surgeon will continue on until it is done.  Thank you for the continued prayers for Matthew and his talented surgeons. 

Cranialfacial Surgery 7am

After a very short night, Matthew and I journeyed in the darkness to Memorial Hermann Children's Hospital this early morning for his craniosynostosis surgery to correct his prematurely fused metopic suture (on his forehead).

After meeting with Matthew's surgical team (I'm a huge fan of his cranialfacial surgeon-- Dr T rocks!) & giving them a few reminders (i.e. Matthew has donated blood in the blood bank, he doesn't tolerate morphine well, and they nicked his urethra inserting his catheter last time), they took sweet baby Matthew back to the operating room.  Mattie shot me his signature ear to ear grin as the OR nurse took him away. 

The surgery should be 4-4.5 hours and we will receive periodic updates throughout.  As we know more we will update the blog.  Thank you for the prayers and positive thoughts for our sweet baby Matthew and his surgical team! 



Matthew arriving for surgery



The Little Things

I've been thinking about struggles lately.  There is some truth that through struggles you learn to really appreciate things that might have gone unnoticed otherwise. 

I look back at the pictures of Alyssa and Jackson when they were Matthew's age and feel a little sad for two reasons.  1. Matthew has to really work at those things that came so naturally to them.  It hurts my heart to see Matthew struggle to do the most natural of things (sitting up, for example).  2.  Because they came so easily to Jackson and Alyssa, I didn't celebrate those milestones.  I took it completely for granted.  I wish I had known better.

Now, I don't take it for granted.  I notice and celebrate the littlest of things.  Those little things give us hope for the future. Yesterday, Matthew was rolling around on the floor and for a few seconds he rocked back and forth on his knees and elbows.  I did a happy dance in the living room. It is the pre-crawl and someday, he may crawl!  It was only a few seconds but it is forward progress. Very exciting!

We are within 36 hours of Matthew's head surgery and I think my anxiety level is actually leveling off.  I'm not sure it could have gotten higher in all truthfulness. My nervousness is primarily because Matthew has had the unexpected after surgery (both times).  But now I joke that the unexpected would be if this was a textbook surgery.  I'd be thrilled and I'm hopeful that will be the reality! 

We are planning to cross some of our to-dos off our list and enjoy our family time tomorrow.  We will update the blog on Monday as we get news to share.  Thank you for the continued prayers and positive thoughts!

My Perfect Partner

Darren and I are alike in many ways, but in a few we are complete opposites.  As it relates to our fears for Matthew, we are opposite and compliment each other well.  I'm afraid of the short term...what does the next week hold?  what will be the unexpected surprise after surgery?  will they pull us into one of the family rooms to give us the ultimate bad news?  As my foil, Darren is completely calm about the short term.  He knows in his heart that all will be okay.  I wish I had his optimism! 

Now, long term is different story.  Darren worries about what life will be like for Matthew, either being developmentally delayed or disabled.  Matthew is already delayed, missing many current developmental milestones.  I see how nervous this makes Darren.  As Darren's foil, I typically do not fear the future. I know we will address every need Matthew may have, and we'll find a way to cope with every unexpected.  Though I do freak out about his development on occasion, I mostly just pray we get a future with Matthew!

Neither of us are perfect (far from it), but Darren is my perfect partner.  I feel unbelievably fortunate to have the right partner to navigate Matthew's journey.   I'm thankful he is Daddy to my kids.  This past 9 months have tested us in many ways.  We have had to tag-team parent more than we would like.  We sometimes fight about stupid stuff when we are overstressed.  But I feel very fortunate to have him at my side, to serve as my foil and me his. For my perfect partner, I am very thankful!

Happy December!

I know that it is not possible to 'jinx' oneself, but I feel like I did.  Matthew's eating took a nose dive the next bottle after I posted yesterday.  It is most likely not from the jinx of me saying it in the blog, but from the ear infection he has yet again. 

Yesterday we went for our typical pre-op health check with our pediatrician.  Matthew's ear is infected again as is his eye so he's back on antibotics.  Looks like the ENT and possible tubes will be next on the surgical list after the head surgery. 

T-5 days till the surgery.  We need to get and keep him well!  Thank you for the continued prayers for Matthew!!