Friday, December 31, 2010

Happy Birthday to the Hoy House

Six years ago the Hoy House was born!  A few years ago we decided to forgo the traditional couple anniversary celebration in favor of a birthday celebration for our family.  Knowing that New Years Eve (our wedding anniversary) is a big celebration day and in time our kids would likely not want to spend that evening with us, we celebrate on the 29th (the anniversary of the day we married in the church).  So, we celebrated our family's birthday at Rainforest Cafe on Wednesday.  We sat next to the monkeys, ate some yummy food and had a fun time.  It was a great way to celebrate the anniversary of the start of our family!  

Thursday, December 30, 2010

ENT Update

Not a surprise, Matthew needs tubes for his ears. He continually has fluid in his ears and has been averaging an ear infection every 3-4 weeks. 

The one (somewhat) surprise is that our ENT would like to coordinate that surgery with Matthew's upcoming urological surgery.  The one fly in the ointment being that our current urologist doesn't share any surgery days with our ENT.  Since we've seen more than 1 urologist, and although we like our current one, we're going to consult with the urologist that does share surgery days in hopes we can get both simple surgeries done with one dose of anesthesia.

Now the fun task of trying to get in to the other urologist and surgeries scheduled.  The sooner the better.  We understand that there is risk with any procedure, but we're glad to have the big surgeries behind us and to only foresee smaller, simpler surgeries in Matthew's future.

Wednesday, December 29, 2010

Holiday Moments

"We only have this moment, sparkling like a star in our hand and melting like a snowflake."  -Paula Best

This holiday season has been filled with some of my favorite moments of all time. 

*Jackson puts his arm around Alyssa while they watch tv and proclaims "Alyssa, I love you and you're my best friend."

*Matthew rolling around on the floor, holding his feet, blowing raspberries and then sticking out his tongue, intermittently letting out a joyous noise.

*Passing on my most favorite holiday tradition to my kids by having Alyssa and Jackson decorate cookies with their friends.

*Going to a very kid friendly church service and Jackson sleeping in my lap for almost the entire thing.

*Opening gifts with the kids and Alyssa emphatically saying "this is EXACTLY what I wanted."

*Watching the cute Disney special, Prep & Landing (about 2 reconnaissance elves), at least 10 times.

*Alyssa and Jackson laughing like crazy as they played with the 'wooshie cooten' (whoopee cushion).

*Jackson laying on the floor playing with his cars for hours on end while Alyssa sings and dances on the Wii. 

From that first night after his birth, one of the greatest gifts Matthew's given us has been the realization of the importance of moments.  I'm so thankful for these and all sparkly, beautiful moments.  

Monday, December 27, 2010

Happy 10 Months

Happy 10th month to our sweet baby Matthew! 

His head continues to heal from the Dec 6 surgery and the stitches have begun to dissolve.  He's pretty much back to his old self-- rolling all around, grabbing his feet, making joyful (loud) noises, and shooting us his ear to ear grin.  His sleep is improving, usually only waking once during the night.  He's eating baby food like a pro (carrots are a favorite), but does not like to take liquids (what's new).  Since he's able to stick his tongue out of his mouth for the first time in his life, he's been doing it at every chance.  I think it is too cute! 

Matthew 10 months

In some ways it feels much longer than 10 months and in others it feels like his birth was just yesterday. Thank you for following Matthew's journey and for thinking and praying for him! 

Friday, December 24, 2010

Merry Christmas

A month ago I was scared out of my mind that Matthew might not be with us for Christmas.  Thankfully, our tough little guy came through surgery and recovery like a champ and this Christmas I have everything I could ever want!  Merry Christmas!!
Hoy Kids Xmas 2010

Wednesday, December 22, 2010

Post Op Scan

Matthew had his orthopedist appointment today for his post-op scan in preparation to receive his helmet.  His head shape has changed.  Before surgery it was asymmetric, that was fixed and now it is just not proportionally correct (back/front vs side/side).  The helmet will protect his head and help correct the proportions. 

I am completely in awe of the tool they use to map the head.  They put a cap on him with a sensor on the top and use a wand to scan his 3D image onto the computer.  All of the measurements are done from the scan.  So cool.  No castings, just a 5 minute scan with a wand.  I completely dorked out is awesome! 

Matthew in his cap (hair interferes w/the scan)

The almost complete scan on the computer screen
The orthopedist scanning Matthew head
We got to pick the helmet color/pattern (I'll leave that for a later surprise), and they're making it over the holidays.  The fitting is scheduled for January 6 (1 month to the date of the surgery). 

More Little Things

2 reasons we celebrate today--

1.  Matthew is bearing weight on his legs.  Yippee!  I know he's 6 months late, but he's finally doing it! 

2.  He is sticking out his tongue.  Another yippee!  His chin was so recessed at birth that he couldn't put his tongue to the front of his mouth, which caused issues with eating.  Now he can stick it out of his mouth.  I love seeing his tongue! 

I know these are little things, and things we likely didn't even notice with Alyssa or Jackson.  But Matthew does things on his own time table and we rejoice for all the matter how small! 

Tuesday, December 21, 2010

No More Sugar

As I've mentioned before, Alyssa and Jackson have a serious case of holiday fever which is creating more chaos in our otherwise plenty chaotic house.  The holidays have brought an influx of sugary treats into their lives and although science has supposedly proven that sugar doesn't cause hyperactivity, I think it causes my kids to lose their minds.  So, they went cold turkey off sugar on Sunday.  We don't want to deprive our kids of occasional treats. We are just making sure it is occasional instead of every day right now. It is better for all of us!

The kids were better on Sunday and Monday was even better than that. My 2 happy moments from Monday evening: 1. Alyssa saying "He's my favorite snowman" as we watched Frosty. (I was remiss in asking if there were other snowmen.) and 2. Jackson saying "Matthew, I wuv you" and Matthew grinning from ear to ear at him. It was a good evening at the Hoy House.

Matthew started showing a little improvement after his first dose of meds and last night was better than the night before.  We still have a long way to go to get to pre-surgery sleep, but it was better.  I am not expecting an overnight fix, I'm just hopeful for a positive trajectory! 

Monday, December 20, 2010

Miserable Night and Day

As I posted Matthew's buzz cut pictures last night, I noticed he didn't look well.  His right eye looked swollen and his coloring looked a little off. I brushed it off thinking it was just me imagining things.  I wasn't.  Last night was miserable for all of us.  So, off to the pediatricians today.  Matthew has an eye infection in his right eye, and ear infection in his left ear and is working on 4 new teeth. That and he's 14 days post-op from skull surgery. Enough to make anyone miserable, including our little tough guy.  And he looks and acts like he is quite miserable.  Hopefully the meds will knock out the infection and thankfully we have an ENT appointment next week. 

Our primary physician is on holiday, so we had to see someone new in a different office. It is the office we went to when Matthew was hours old. Just driving up I got tears in my eyes thinking about that first day,and the shock of our lives.  I can still remember vividly the doctor showing us Matthew's hands.  I remember saying I needed to sit down.  I'll never forget that drive home, seeing Darren trying to drive without using his thumbs.  Just seeing the building sends all of those memories back to the surface and brings tears to my eyes.  Oh how many more suprises we've had since then....and many more worries.  How I wish that all we ever had to contend with was the lack of thumbs.  But looking back, that was still the biggest shock, and the day our lives were forever changed. 

Sunday, December 19, 2010

Buzz Cut

One of the surprises after Matthew's skull surgery was the fact they didn't shave his head.  They only shaved a wide strip of hair for the incision. If we had known, we likely would have shaved his head before the surgery, so that when the hair grows back it'd be even. 

Now that his incision is healing, we decided to give Mattie his first and probably last buzz cut.  We'd never seen Matthew's scalp since he was born with a head full of hair.  Notable features include his wicked incision and a gigantic bruise near his soft spot, topped off with his ear to ear grin. 


Matthew can say he sports "Daddy's Do". We laughed tonight remembering that with the buzz cut, Matthew now has the same amount of hair Alyssa did at that age.

Saturday, December 18, 2010

Recovery Day 12

Matthew is continuing to heal.  His swelling is almost completely diminished and he's looking like himself again.  His sleeping and eating aren't 100% but are improved.  His activity level is increased and he even rolled over yesterday.  It was the first time since the surgery!  I guess he knows his head is getting better. 

I've noticed Matthew favoring his right side again (his torticollis).  I'll be more willing to push him with his OT exercises when he gets the helmet.  To add insult to injury, Matthew is teething.  Tooth #5 is out and tooth #6 is on its way.  Poor if he doesn't have enough going on in his head.  Thankfully though his mood has improved in the last 48 hours.  He'll at least let me put him down without screaming, as long as I stay in view. 

I'm still surprised how well his recovery has gone.  It has been a great blessing and the best Christmas gift I could have wished for!

Friday, December 17, 2010


Before Matthew was born, we read Alyssa and Jackson books about being a big sister/brother and babies. I worried a bit because in some of the books, the sibling was resentful of the baby. I'd heard countless stories about older siblings asking when the baby was going back.

We didn't experience resentment issues when Jackson was born, but we attributed it to the fact that Alyssa was still so little (19 months).  When Matthew arrived, Alyssa was 4 and Jackson was over 2 1/2.  We were a little concerned because they were old enough to resent this new being creating havoc in our lives.  But Alyssa was over the moon for her baby brother before he was born.  Each night before bed she would kiss my belly.  The moment she saw him just hours after he was born, she was beyond in love.  And though Jackson wasn't as affectionate at first, he never showed resentment for Matthew.  Just the opposite....when Alyssa or Jackson get mad at us, their typical statement is "I don't like anyone, except for Matthew."  Matthew is lucky to always have Alyssa and Jackson on his side.

The last almost 10 months Alyssa and Jackson have had to endure the normal baby annoyances like "Shhhh.  The baby is sleeping", "No, we can't go yet because Matthew needs to eat (or I need to pump)."  And they've endured changes to their schedule (Matthew and I have spent 20 nights in the hospital) and seen their little brother look scary (102 stitches across his head). Through it all, they have never shown resentment or asked to return our sweet baby boy.  I'm so thankful! 

In my heart I know Alyssa and Jackson will be better people because Matthew is their brother, but I fear it may challenge them at times.  I pray that they are always his biggest supporters! 

Thursday, December 16, 2010

Happy Angels Day

Today would have been our cousin and friend Jenn's birthday.  We lost her last year after her 14 month courageous battle against ovarian cancer.  Jenn is greatly missed by all of her family. 

Some stars are so bright, they continue to shed light on the world long after they are gone.  As such, Jenn is often the topic of conversation here at the Hoy House.  A month ago, when Alyssa was asked who her favorite person in the world was....she simply answered "Aunt Jenn".  Understandably so, Jenn was fun-loving with a caring heart, optimistic spirit, and loving hands (perfect for walking hand in hand with the niece that adores her).

Jenn & Alyssa August 2006
20,000 women in the US are diagnosed with ovarian cancer every year.  Ovarian cancer is hard to detect and because the symptoms are vague (or whisper) few (less than 20%) are diagnosed in the early stages when the chance of survival is the greatest. 

Symptoms include:  Bloating, Pelvic or abdominal pain, Trouble eating or feeling full quickly, Feeling the need to urinate urgently or often, Fatigue, Upset stomach or heartburn, Back pain, Pain during sex, and Constipation or menstrual changes.  If you have any of these symptoms for 2 weeks, do not ignore them!  Please contact your doctor or ob/gyn and ask for an examination and a vaginal ultrasound.  
Jenn & Alyssa June 2009
Jenn loved parties, and in honor of Jenn's birthday, tonight we will celebrate all those that have gone to Heaven. Tonight we celebrate Jenn, Tom, Aunt Ann, Granny Matthews, Grandpa Stach, Mamma Gristy, Grandma & Grandpa Hoy, Aunt Bonnie, Dot, Lenore, Conner, et al.  All are loved and missed!   

Wednesday, December 15, 2010

Matthew's Follow Up

Matthew's follow up with Dr. T was uneventful.  Matthew is healing well, and his swelling is greatly diminished. We've noticed the swelling going down day by day though it will probably be noticeable for another week.  Matthew's head will be scanned next week for his helmet, which will probably be fitted the first week of January.  He'll likely wear the helmet 23 hours a day for 2 months.

Matthew 8 days post surgery
Dr. T indicated that kids are usually out of sorts (clingy, not sleeping, poor eating, very fussy, etc) for often a month after surgery.  I was actually comforted by this... what we are experiencing isn't out of the ordinary and it is expected to pass in a few weeks.  We just have to power through a few more weeks.  It is like having a newborn (with separation anxiety) feel unbelievably blessed and so very tired, and just like that, that time has passed. 

I wish every doctor was like Dr T.  He's the smartest guy in the room, nice, perceptive, understanding, respectful, and unbelievably skilled.  I received 3 recommendations for him, only him, when we found about the craniosynostosis.  One from our pediatrician, one from a random mom who overheard me telling the occupational therapist about it, and finally the anesthesiology nurse from Matthew's heart cath at Texas Childrens.  Dr T is the THE guy...and I understand why!   I am so thankful for good doctors!!

Tuesday, December 14, 2010

Alyssa Turns 5

Our big girl Alyssa turned 5 today! 

She has a wonderful day at school, celebrating with her friends and then came home to her requested dinner (mac & cheese w/broccoli), Granny, Granddad, Grandma, and cupcakes in ice cream cones.  Her Grandma even surprised her with matching outfits for her and her doll. 
The Hoy House tradition is giving 'experiences' for birthdays instead of gifts (aka stuff)*. For Alyssa's experience this year, we treated her to lunch at the American Girl Place in Chicago with her cousins and aunts and her American Girl doll (Julie).  It was a very girly good time with Aunt Susie, Aunt Carol, Grammy Karen, Rachel and Myranda!
*Note- Grandparents are exempt from this tradition, under the grandparents code 248, aka the grandparent's perogative.  That is why we have 2 Barbie's in our house!

Monday, December 13, 2010

1 Week Post Surgery

Matthew is doing remarkably well considering a week ago they were cutting out part of his skull!  The swelling on his scalp is gradually going down each day and he's quite active. 

The lasting negatives from the procedure are (1) his eating is even worse than before and (2) he isn't sleeping.  We had thought that the 2nd was due to the caffeine in the codine, but Matthew was weaned off of it yesterday and his sleep was still awful last night.  Maybe 1 and 2 are related.  Or it may be that he's just not comfortable laying down.  Whatever it is...something has to give-- soon. No sleep is starting to weigh on all of us. 

To add to the craziness in the house, Alyssa and Jackson have a serious case of holiday fever.  At least we hope that is it, because they are acting like they have lost their minds.  Maybe it is caused by the increased sugar from the holiday treats, or the anticipation of opening the gifts under the tree, who knows!  It is such the parental paradox that kids need you to be the most patient and consistent when you feel like being it the least. 

Today we are going to try a regimented feeding and pain management schedule for Matthew.  Hopefully that will help! 

Saturday, December 11, 2010

Recovery Day 5

I'm awed by how quickly Matthew is healing!  His head is still swollen from his eyes to the top of his head and his stitches are now bright red but other than that, you wouldn't be able to guess he had skull surgery just 5 days ago.  He's looking and acting more and more like himself moment by moment.  I'm just giddy! 
Matthew day 5 post-surgery
Matthew's post-op visit with Dr T is scheduled for Tuesday and the post-op scan of his head to fit his helmet is on Dec 22.  We guess that the swelling isn't projected to completely subside until around the 22nd but we'll get more info from Dr T on Tuesday.

As I'm writing this post, Matthew is laying on the bed, kicking his legs and making a joyous noise.  I can't describe the joy I have in my heart to watch him and the thankfulness I feel to see my sweet baby Matthew being my sweet baby Matthew.  I just cannot believe how fortunate we are--to have our family, our friends, each other, Alyssa, Jackson, and Matthew.  We are so very blessed.  Thanks be to God! 

Friday, December 10, 2010

Recovery Day 4

Yesterday at 4pm, I buckled Matthew into his car seat and got behind the wheel to take him home.  I sat there and shook for 5 minutes.  I just couldn't believe it. Before surgery, I had thought that Matthew had about a 50/50 chance of not making it through surgery and recovery.  The mortality rate for the surgery is not near that high, but knowing Matthew's history and the invasiveness of the surgery, I was quite scared.  And rightfully so, as I learned from the anesthesiologist yesterday, there were some rocky moments in the OR. But here it was, 3 days after surgery and I was taking my sweet baby home!  If I had to guess the likelihood Matthew would be going home on the early end of the hospital stay estimate, I would have guessed less than 1%.  But here we are...home! 

Matthew still has a lot of healing to do.  His forehead and scalp are quite swollen and he still looks like he lost a fight with Mike Tyson.  He doesn't yet look like himself and he's not out of the woods completely, but we can see the clearing.  Last night, he slept 8 hours straight and didnt need pain meds for almost 12 hours.  He's been talkative, smiling and acting like our sweet baby Matthew.  I couldn't feel more thankful, luckier or more blessed!
Matthew 4 days post surgery
We are so thankful for the notes of encouragement, the food, the company, the texts and messages during Matthew's hospital stay.  We never felt alone and are so very grateful--Thank you!  Also, thank you for the continued prayers and positive thoughts for Matthew's continued healing! 

Thursday, December 9, 2010

Recovery 3p

Ready for the unexpected for this surgery?  We are going home tonight!  Matthew is doing so very well! A big thank you to our care team, and most especially to Dr T. 

Matthew day 3 post surgery

Recovery 8a

What a beautiful day!  Matthew's pain was well managed last night and he slept mostly through the night.  At 7a, as I fed him, I saw his eyeballs!  He can see out of slits, meaning his swelling is diminishing (somewhat quicker than I expected).  I also think I saw him try to crack a smile.  Yippee!

I'm hopeful today Matthew will be able to tolerate being held.  They recommend holding him to reduce head swelling and that is usually the best way comfort him, but since the surgery holding him seems to cause him greater pain.  Sad for both of us.  I miss holding my sweet baby. 

Again, we are humbled by the love and support we receive daily during Matthew's journey. 'Thank you' does not seem like enough, but thank you!!

Wednesday, December 8, 2010


Happy swelling solstice!  I think the swelling has peaked!  Matthew's head still looks like a cartoon character and it still sloshes when he shakes it back and forth, but Matthew's legs are starting to look more like legs and less like sausages.  His eyes are still swollen shut, but the shiny black is turning dull and supposedly that means the swelling is going down. 

I've been encouraged today.  Matthew's been weaned off of morphine and onto a tylenol w/codine and his pain still seems to be well managed.  I'm seeing activity from this baby that I'm used to seeing in my sweet baby Matthew-- he's playing with my hair, clasping his fingers together, and trying to grab at his feet (he can't connect hand to foot because of the leg swelling).  Very encouraging!  But mostly he's been asleep and hopefully healing. 

Dr T hasn't projected when we'll go home, but my guess is earliest on Friday.  I'll have to ask tomorrow.  I look forward to having us all home! 

IMCU 10a

Last night was considerably better than Monday night.  Matthew slept for a 5 hour stretch, then a 2 hour stretch, then cat naps of 30 mins to an hour.  I hope it was healing for him.  I know I feel a lot better with the sleep!

Today is the peak swelling day, and Matthew is swollen beyond belief.  Even the picture cannot do it justice, though you'll see his eyes swollen shut. 

Matthew post surgery 48 hours

He was sleeping in my arms this morning and shook his head back and forth...and he sloshed.  Very disconcerting!  The nurse called Dr T, who came right up to tell me that Matthew's look and the sloshing are completely normal.  Whew!  Dr T noted that he'll warn parents about the sloshing going forward. 

I just keep reminding myself it is darkest before the dawn and he'll act and look like our sweet baby Matthew as soon as he can.  I'm hopeful he'll sleep the majority of today, as I can't even imagine how frustrating it would be to not be able to open my eyes and have no idea why. 

There is a spot on the dry erase board for 'today's goal'.  We have written no pain and optimal healing.  Thank you for the continued prayers and well-wishes for our sweet baby Matthew and his medical team.

Tuesday, December 7, 2010

IMCU 11p

As I alluded to in my last post, I wasn't too happy when we first got transferred to the IMCU. First let me preface by saying I'm a bit sleep deprived at the moment, so my emotions are heightened and I'm probably more sensitive than I normally would be. But within that lens, here's what's transpired today:    I had mentioned to the nurse that I thought Matthew's breathing sounded strained.  She came in to listen and dismissed me saying that his lungs sounded clear.  Having heard this same sound at 3am and knowing that Matthew really started to struggle at 8am (requiring the breathing treatment), I went back out and told her I'd like to have him looked at again. She had the respiratory therapist come in and paged the Dr. T's resident.  The RT came by and dismissed me as well.  Finally the resident came in...and dismissed my concern as well. 

I had other concerns that I brought up to the resident.  Would the 2 anti-inflammatory meds be okay with Matthew's one kidney? Our nephrologist typically doesn't want Matthew taking Motrin, much less Motrin and another med in the same class.  That concern was dismissed.  Matthew's heart rate has been irregular, is that of concern?  Nope, only if his blood pressure is low (though they only take it once every 4 hours).  I just felt completely dismissed.  I know I probably sound paranoid, but Matthew's history makes me feel like I need to be vigilant.  I don't want anything overlooked but I was made to feel a little like a crazy mom.

After voicing all of this to Darren, he picked up the phone and called our nephrologist (Dr F) to get his opinion on the meds. I'm so glad he thought of that!  Dr F approved the meds and just knowing that, I started to feel calmer. 

Then Dr T (Matthew's cranialfacial surgeon) came by.   I didnt have to say a word to him about the situation.  He said he had heard I was concerned about Matthew's breathing so he came over to make sure he was okay and was on the pulse oxygen monitor.  He also talked with the charge nurse to make sure they understood Matthew was not a typical cranialfacial patient, he was unique and my concerns should always be addressed. He apologized to me that my concerns weren't addressed properly.  He set up Matthew with the pediatric team (to handle any of my concerns tonight) and the pain management team (who came up with a medication plan to make sure we don't have a repeat of last night).  Before today, I was a huge fan of Dr Ts and his actions today made me president of his fan club! 

Dr T is still encouraged by Matthew's progress today.  Matthew has been asleep since his last morphine dose at 7pm but has been making sure we don't become too complacent.  His heart rate is still irregular at times, and a bit low (between 70-90 instead of 120s yesterday). His pulse oxygen level is down (as it was this morning before the breathing treatment).  And a recent development is that Matthew's temperature has now swung the other way...instead of running a fever, he is too cool (95.7 degrees).  The nurses bring in warm blankets and his temperature is very slowly rising.  Reminds me of the few hours immediately after his birth when we fought the same thing.  I'm hopeful that his sleep will continue to be restful and healing. 

We cannot thank our friends and family enough for the support you have given us during Matthew's entire journey and especially this latest episode.  Every note, text, phone call, post, prayer, well-wish, and positive thought bring our hearts comfort and propel us forward.  We are very blessed.  Thank you! 


We've moved out of ICU and down to the immediate care unit where Matthew is resting comfortably.  I think lack of sleep, combined with less attentive nurses, is making me a bit anxious and emotional. 

Matthew's blood pressure was still high when we left the ICU and his heart rate has been periodically irregular and low since we've been here in the IMCU. History has taught me to be leery of anything atypical, but it doesn't seem to concern the nurses or resident.  Matthew is still swollen but actually looks a bit better since they removed his bandages.  He's going to have one wicked scar!  It goes from behind one ear to the other in a zig-zag pattern over his head.  The resident indicated tomorrow will be the peak swelling day.  I was hopeful that it was today because Matthew can still crack one eye open to see.  If there is more swelling, I doubt he'll be able to do that. 

Matthew 24 hours post-surgery
I'm hopeful we'll continue on this positive trajectory. I'm thinking if everyday is as good as this one, maybe we'll be home before the end of the week. That would be the unexpected for this hospital visit! We'd love it! 

Disclaimer:  Although I'm sharing pictures of Matthew's recovery, which are not all together beautiful but say more than words, please remember this is our sweet baby Matthew...and he'll look like this again very soon. 

PICU 8am

Last night was not the quiet, healing night I had hoped it would be.  Matthew was up every 20-30 minutes throughout the night.  He isn't calming with touch or song.  He's had several doses of morphine and tylenol, but neither has worked to calm him for longer than 30 minutes.  Because feeding him does seem to quiet him at least while he's eating, he's had an amazing amount of liquids (especially compared to his typical eating pattern).  His blood pressure alarm goes off frequently, and we aren't sure if its because he's in pain (possibly) or an effect of his swelling/fluid retention.  He's still running a fever (which was expected).  Matthew's eyes are swollen shut and he's beginning to look like a raccoon with his bruised eyes. 

We were warned this recovery would be rough...and it is.  Poor baby Matthew.  I've run out of tricks in my bag...I've tried swaddling him, patting him, background noise, more blankets, less blankets, singing, holding his hand, etc.  I just can't take away his pain and I hate that!

As I was drafting this post, Matthew began whistling as he took in breaths and shook off his head dressing.  So the respiratory therapist came to give him a breathing treatment and the nurse just rewrapped his head. I chuckled yesterday remembering how I used to freak out changing Jackson's diapers after his circumcision.  I hated seeing him in pain.  Oh goodness, how much more I can stomach now.  I can change a diaper with an arterial line coming out of Matthew's groin.  I can hold Matthew's head, which is cut from ear to ear, while the nurse changes the bandage.  I can watch them take vial after vial of blood. I still really, really hate seeing my baby in pain but I can soldier through it now.  It's only made me a bit lightheaded a few times. 

Dr T just visited and he's encouraged.  To get out of ICU we need to get Matthew's blood pressure under control and we'll be visited by the pain management team.  Then we'll be in a regular recovery room until we can manage the pain at home.  Please pray or say a well wish for Matthew's comfort today.  Thank you!   

Monday, December 6, 2010


Matthew is snug in his bed in the PICU tonight.  Overall, he's doing amazing given they cut out part of his skull this morning.  Matthew's vitals are good but he's swollen to the point that his skin is taut and he has a slight fever (not unexpected).  We are watching the left side of his body, as it is more taut and flush than the right side.  He cries out every 20-30 minutes but is calmed by either pedialyte (goodness, not sure he can handle much more liquid) or by touch and song.  Words cannot accurately describe exactly what we here's the visual. 

Matthew 8 hours post surgery
All I want to do is crawl up in his bed with him and hug him close.  I'm thankful that they have a couch/bed in the room, so I can be near and hopefully catch a nap or two throughout tonight.  I'm praying for a calm night, full of healing sleep for my sweet baby Matthew.  If all goes well tonight, he'll be moved to a regular room tomorrow. 

The hospital does have a Ronald McDonald House onsite, and we did get a room tonight, but I just couldn't take it.  I need to be with Mattie.  I'll grab a room midday tomorrow for a quick shower. As with our stay in the NICU, I just can't say enough wonderful things about the RMH.  The volunteers are amazing and the rooms are clean and comforting.  They provide a bed when you are tired, a shower when you are dirty, and often a meal when you are hungry-- all in a time and place that you need it most.  What a great thing!

Well, hopefully I'll have good news to share tomorrow morning.  Until then, thank you again and again for the prayers and positive thoughts for our sweet baby Matthew! 

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

Saturday, December 4, 2010

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!

Thursday, December 2, 2010

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!

Wednesday, December 1, 2010

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!!