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 watching...technology 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 victories...no 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. 

Before:
After:


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 baby...as 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

Siblings

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)...you 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

IMCU 5p

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! 

IMCU 3p

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

PICU 9p

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 see...so 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!!

Tuesday, November 30, 2010

T-6 Days

Matthew and I are home safe and sound after our amazing trip to Chicago.  Matthew and I flew to/from Chicago while Darren drove with Alyssa and Jackson.  I'll get the full report on the drive later tonight, but as for flying, Matthew was a great baby on the plane, fussing for about 20 minutes and then falling asleep for the majority of the flight (both ways). 

A good development while we were away--Matthew began eating again.  Sunday he woke up and just decided he'd eat.  He took all of his bottles and ate a little of his solids.  Monday, same thing.  Today, he's taken even more.  Very good news!  Not sure what changed, but hopefully this will get him stronger for his upcoming surgery. 

Speaking of surgery, we are 6 days away from the big day and my anxiety level continues to rise day by day.  Logically I know that this surgery is somewhat common and not extremely risky, but I just can't shake the fear.  They are going to cut him ear to ear, cut out all of the bone from his forehead, leave some out and reshape the rest and put it back in with synthetic plates.  He'll likely need a blood tranfusion. And if Matthew's history has taught us anything, it is that the unexpected can always occur.  I just can't be calm about that.   I have no idea what to expect after 5:30a next Monday.

But I'm going to try to concentrate my nervous energy in getting ready for the holidays in the next 6 days.  I hope to finish my shopping, put up the decorations, and get ready for Alyssa's birthday dinner. All of that and spend a good amount of time loving on my sweet baby and enjoying our family time! 

Saturday, November 27, 2010

Happy 9 Months

Happy 9 months!  I'm totally in love with Matthew's calm disposition, his playful hands, his ear to ear grin, his piercing eyes...well, just about everything about him!  He's our totally unique, sweet baby Matthew!


Matthew 9 months
Thank you for your continuing love, support and prayers as we navigate Matthew's journey!

Wednesday, November 24, 2010

Pre-Op Appts

Today Matthew had his pre-op pictures taken, met with his cranialfacial surgeon, met with his neurosurgeon, and had a lengthy discussion with anesthesia in preparation for his Dec 6 surgery.  Now we just need to keep him (and everyone in our house) well for the next 12 days. 

As I was feeding Matthew in the waiting room, frustrated that he wouldn't finish his bottle, I looked over at a cute little 4 year old and watched his dad fill up a syringe to put into his feeding tube.  I needed that daily dose of perspective.  Instead of being perpetually frustrated with his eating, I should be thankful that Matthew is taking a bottle. It wasn't always easy for him, and it is sometimes still a battle, but he can and for that I am grateful.  Sitting in these waiting rooms, with so many families experiencing the unexpected, is a humbling reminder that we are very lucky!  We have a lot to be thankful for this year. 

Have a beautiful Thanksgiving! 

Tuesday, November 23, 2010

A Non-Update

Matthew has been playing with his feet a lot lately.  I'd say they are his favorite playthings at the moment (with fingers/hands a close second).  The other day, I caught him sleeping in his swing...holding his foot.  It doesn't look comfortable to me, but he slept that way for over an hour.  If I did that for 10 minutes, I wouldn't be able to walk for a week!   

Monday, November 22, 2010

Blood Donation

The next surgery...the craniosynostosis cranialfacial/neurosurgery...is confirmed. Dec 6.  They will be cutting Matthew's scalp, pulling down the skin on his forehead, cutting out the bone that has formed over his metopic suture (middle of forehead) and inserting a synthetic protective plate there that will dissolve in time.  This will allow his brain to grow without restriction. 

Recovery is rough.  He will spend at least one night in ICU and a few more days in recovery.  (Since it is Matthew, we are planning to double that time.)  On the second day, his eyes will swell shut.  We imagine that will be quite disturbing to him.  I'm really dreading this surgery, but it is not optional.  The risks of pressure to his brain are too great.

In preparation, we have a full day of pre-op appointments on Wednesday where we will have our final meeting with our surgeons and what I imagine will be a lengthy visit with anesthesia. 

One of our to-dos before surgery is to line up blood donors for Matthew.  Head wounds bleed a lot, and Mattie will likely need a blood transfusion during this surgery.  Thankfully I have two matches lined up for directed donation (thanks to Dad and Peter!), but ask that everyone else who reads our blog and is able to donate consider donating blood this holiday season.  Although Matthew is lucky and will be covered, there will be countless others who's lives will depend on blood donated by strangers.  Please consider donating.  If you live in the Houston area, you can find a blood donation center at http://www.giveblood.org/

Thank you for the continued prayers for our sweet baby Matthew.  We constantly say prayers of thanksgiving for the gift of our family and friends!  We cannot imagine how different (and difficult) this journey would be without the love, support and prayers.  Thank you!!

Friday, November 19, 2010

Well Baby Visit

Today was Matthew's 9 month well-baby visit (he'll be 9 months on the 27th).  The staff cheered when I said it was a well-baby visit (instead of our frequent 'what in the world is going on with Matthew' visits), and then laughed when I said I think he's got a cold to celebrate. 

Matthew is now officially off the charts in weight and head size (and has been the last few visits), and is holding on the very low end of height.  As our pediatrician keeps saying, its not where he is on the chart compared to others, but it is how the Matthew curve looks...and for that, he's right on target.  He's a bit delayed developmentally, but that is no surprise to us as we've been addressing it with our occupational therapist weekly. 

Mattie has been fighting an ailment since Wednesday (and making sure we are all aware how uncomfortable he is), and sure enough...he has yet another double ear infection.  He's averaging an ear infection every 4 weeks right now.  We have bigger fish to fry (head surgery in a few weeks), and then we'll follow up with our ENT. 

Our pediatrician didn't have much to say about the eating issues.  I think every doctor is taking a 'wait and see' approach hoping that it will resolve itself. We hope it will! 

As miserable as Matthew has seemed and as needy as he has been (crying unless he's being held), it is actually a relief to deal with the common childhood ailments.  Hopefully the antibiotic will kick the infection and he'll be good to go!  I miss his smiling face and look forward to its return. 

Wednesday, November 17, 2010

Good News

Today was Matthew's appointment with his original cardologist.  After reviewing the xray & doing a quick echo, he gave us the good news.

-Matthew's heart is 2/3 the size it was before the PDA fix, meaning that it is healing.
-The PDA has completely been blocked off, no residual shunting.
-The Left Ventricle Hypertrophy is likely caused by the months Matthew's heart was over worked, not a seperate issue (not cardiomyopothy).
-It may take a few months for Matthew's heart to fully recover & get to full strength.
-Matthew is okayed for his next surgery & is approved for air travel.

This is all very good news!  We'll follow up with him in 3 months.  Happy as we are, now we are left asking-- if not his heart, what is causing Matthew's eating issues?  enlarged spleen?  discoloring of his legs? Where is the real life Dr. House when we need him?

Tuesday, November 16, 2010

Ordinary

The last few days have been pretty good.  Matthew's eating is still variable at best, but we are struggling through.  I guess after 8+ months of eating struggles, it has become our new 'normal'.  Surprising what you can get used to in time. 


Other than that, life is good.  Last night was beautifully ordinary.  I held Matthew as he played with my hands, while Darren and Alyssa played Uno a few feet away and Jackson rode his plasma car around us time and time again.  It probably looks crazy from the outside, but it was my perfect evening.  I am so thankful for the ordinary!

Saturday, November 13, 2010

Call From Cardiologist

We received a call back from our original cardiologist on Friday at lunch (after he left a message at Darren's office on Thursday evening).  I gave him the run down since the PDA fix, and he agreed it does sound like Matthew is having symptoms like last time.  He recommended that we put Matthew back on the diuretic and heart meds until we see him Wednesday.  

The doctor also said he had seen the left ventricle hypertrophy (LVH) on the echo that diagnosed the PDA but he didn't call it out as something of concern because he assumes it is related to the PDA.  As we have been suspecting, you work a muscle hard for a very long time, it will become thicker and bigger!  I am so happy to hear our cardiologist say that!  

As well, our cardiologist gave us his cell phone number to call anytime if we have questions or concerns.  What a nice contrast to the frustrating experiences at TCH.  

The last few feeds with Matthew have been good, so we are holding off on the meds until his feeding goes south again, as the diuretic is rough on his one kidney. We are happy to have a back up plan just in case! 

I feel much more relaxed after the call w/Dr L.  The last week we've been waiting for the other shoe to drop (as it has every time Matthew's had feeding issues) but the call today eased my mind a bit.  Now we just wait for the Wednesday appointment and pray for good news! 

Thursday, November 11, 2010

Back home....again

After a very frustrating 17 hours in the ER, Matthew and I came home.  I'm not sure which is more bothersome-- knowing something is wrong but being told there isn't anything (like today) or not having a clue something is wrong and being kicked in the gut with the bad news (like the many shocks we've experienced w/Matthew).  

Why do we think something is wrong?  Matthew is not tolerating feeds, his legs are turning different shades, and his spleen is enlarged.  This is all too familiar, we saw it (save the leg coloring) right before he was diagnosed w/the PDA.  

Today I was told "we've ruled out the scary, so you can go home now."  My response to that "um, no, you ruled out SOME of the scary. Without an echo, there is still some that looms."  I'd have been perplexed, but happy, if we had an echo that had told us it wasn't heart related.  Instead, we came home without one.  I think I could have pushed, but I was fed up and thought I'd rather go see our original cardiologist or even gone over to another children's hospital than deal w/this cardio team further.

We need a different set of eyes.  I'm certain part of the trouble is that Matthew doesn't exhibit typical symptoms for common ailments.  It took months for anyone to diagnose the PDA, because Matthew looked "too healthy", "too chunky", "not like a cardio baby".  But he was, and it was a huge issue.  And now we have similar symptoms as before and are being told the same line "he looks too good for it to be x".  Yes, he does right now. I'd like to figure out what is wrong before it becomes a huge issue and he doesn't look good.  

At about 5:00 this morning, I was wishing I had thought about the fact we'd need to be seen by cardio on this visit to the ER.  If I had thought about that, I would have gone to the other children's hospital a few blocks from where we were.  4 out of 5 of our experiences w/TCH cardiology have not been good. Today made it 5 out of 6.  I really wish I had remembered that and done something different.  

Oh well, now to dust off and figure out what to do next.  We have a call in w/our original cardiologist who was out of the office today.  If he agrees it is not urgent, we'll just wait patiently for our Wednesday appointment.  

A huge thank you to Kirsten, who kept me company last night until the wee hours this morning.  Your company kept me from being scared and angry.  Thank you!!  And thank you to everyone who continues to pray for our sweet baby Matthew!

Back at Texas Children's ... again

As we've posted previously, Matthew's eating has been getting worse over the last couple of weeks, and his spleen is enlarged again. We've been concerned (and frustrated by the eating issues), but decided that we'd talk it over with the cardiologist at the previously-scheduled appointment next week.

Tuesday evening, I noticed that Matt's feet were a little more tan than usual, but chalked it up to the contrast between his flesh tone and the white pants he was wearing. On Wednesday, a couple of friends convinced us that we weren't overreacting, we were being Matthew's parents; take him to the doctor. After a late afternoon pediatrician appointment, Katie and Matt were off to Texas Children's for tests.

After-hours arrival at the hospital means being admitted through the emergency room, which means waiting hours to see a doctor. Matthew was finally seen around 2 a.m., seven hours after arriving. Which is good and bad. Good because that means the triage folks didn't think Matthew was that bad off; bad because it meant waiting seven hours while more critical folks were seen. Matthew was admitted after the ER doc agreed with the pediatrician that Matthew is retaining fluid and he appears jaundiced. Off to cardiology.

Katie has thoroughly documented our beefs with the cardiology department at Texas Children's and this interaction has not been any different. Cardiology doesn't think that his current issues have anything to do with his heart or circulation, despite the pediatrician and the emergency room being concerned enough to send Matt to the hospital and admit him. Now Katie is dealing with the same people who thought we could wait months to get an appointment before an outside cardiologist (Dr. Penn Laird, Jr) told them that Matt had a huge PDA that needed to be fixed quickly. This morning the cardio doc sent Matt for an abdominal ultrasound to rule out a blood clot. The technician asked Katie for the symptoms; she listed them. He digested the information, and Katie then asked if he thought they'd find anything. "Nope." The tech didn't think that they symptoms could be caused by an abdominal blood clot! Shockingly, there is no blood clot. Katie waits for the doctor's next guess, and her frustration grows.


Apparently, this is a lesson Katie and I have had to learn time and time again: the cardiology department at Texas Children's is worthless. They are overbooked. The administration staff and nurses are rude. The doctors are idiots. Or they think parents have no information, and they know everything. Or both.

On the other hand, our experience with cardiac surgery was great. I don't know if they are one department or separate, but we have complete confidence in the surgeons, and none in the medical doctors. Fun dichotomy, don't you think?

Meanwhile, I have contacted Dr. Laird's office, hoping that he can intervene and correctly diagnose Matthew given his symptoms. For future reference, we need to find out where Dr. Laird has privileges so if we have to cross this bridge again, we'll be better prepared ... to go somewhere other than Texas Children's Hospital Cardiology Department.

Tuesday, November 9, 2010

My Absence

I can't go to church right now.  All the things I used to love about church (the quiet reflection, the time of prayer, the moving music, the beautiful memories) are all too much for me now.  The last time I went to mass, I was a crazy mess.  I have never cried as hard or as loud in public as I did during that mass. Thankfully it was a weekday mass and I only broke down in front of 50 people instead of 100s of people. 

I feel guilty because I know church should give me comfort but instead it makes me hysterical.  I just can't force myself to go, to confront those powerful emotions that I normally don't have time for.  I've been embarrassed to say this outloud, hoping that no one notices my absence, but one of my dear friends has given me the courage to admit it.  Her words of encouragement, combined with her own story, are helping me to not only admit that I just can't go right now but also to begin to let go of the guilt.  Thank you, my dear friend. 

A quick update on Matthew:  Though he's still fussing when fed, he doesn't seem as sweaty.  That seems like a positive sign!  We are looking forward to our next cardio appointment (next week) and pray that there is still no change (or improvement).  Other than the continuing frustrating feeds, he's in good spirits and sleeping well, especially now that we've found a bigger swaddle wrap.  

Sunday, November 7, 2010

Alyssa's Art Commentary

Alyssa and I were reading the "Olivia" book the other day and Alyssa says very emphatically "Jackson did that! See, look, it has his name and it looks just like his scribble-scrabble."  This is what she was looking at--

And she was right...it is by a Jackson (Jackson Pollock) and it does sort of look like our Jackson's scribble-scrabble.

Additionally, last month I went to a paint place where they give you step by step instructions on making your own version of a masterpiece.  When I was telling Alyssa where I was going and what I would be painting (Starry Night), she looked at me with her serious face and asked "Can't you paint a sunny day instead?"  umm...no.  But that day I learned having a pre-schooler can be a boost to your ego, as she loved my interpretation of Starry Night!  Even yesterday she asked "Mommy, can I touch your beautiful painting?"  So sweet, but Alyssa has a lot to learn about art!

Friday, November 5, 2010

My Fear

One of my favorite rides at DisneyWorld is the Rockin' Roller Coaster.  I love the twists and turns, unexpected in the dark as Aerosmith blasts in your ears.  As one of my friends has said, "I like roller coasters, but there is a reason they are only 2 minutes long."  I am totally understanding that sentiment.  There are highs and lows with raising any child, but those highs and lows are seriously dramatic (and often in the dark) with Matthew.  I'm ready for less Rockin' Roller Coaster and for more Goofy's Barnstormer Roller Coaster (which has to be less dramatic, it is in Toontown!). 

This week's high-- The cardiologist called Wednesday with the results of the halter from 2 weeks ago.  Matthew's heart rate has gone up, now averaging 119 (compared to 70 before) with a low of 69 (compared to 38 before).  I thought this was good news, but the doctor stopped short of saying that.  He did say there was nothing of concern.  I'll take that as good news.  As well, Matthew has gained almost 2 pounds since the PDA fix 4 weeks ago.

This week's low-- Matthew's eating issues have returned full force within the last few days.  He sweats when he eats, he takes about 1/2 of the amount he took 2 weeks ago, and he's fussy at feeds.  We were hoping it was an ear infection, but it is not.  Our pediatrician suspects it might be his heart, which is our fear.  Like before the PDA fix, Matthew's spleen is enlarged again.  We had a chest x-ray today and thankfully there was no substantial change in his heart in the last 2 weeks.  So, now we'll just wait the next 12 days until our next cardiology appointment and hope that the feeding issues resolve themselves before then.  We can hope!

I have been told that my posts may be painting a rosy picture of Matthew's journey, that they are more 'technical' and less 'emotional'.  I doubt that will be said of this particular post.  I'm tired of having this pit at the bottom of my stomach, but I'm afraid of saying I want it to go away.  I'm afraid of saying I'd like the roller coaster to slow down or stop.  I'm afraid of asking for life to become easier because I'm most afraid that would mean losing my sweet baby Matthew.  I know everyone who knows us, who reads between the lines of my posts, knows what I don't typically post.  You can read the laundry list of Matthew's uniquenesses and imagine what is in our hearts and minds.  I often allude to it. We hope that Matthew can overcome all and grow into an amazing adult but we also fear losing our precious gift that is Matthew and know that is a possibility.  I wish I had unshakable faith but my faith is shaken almost daily.  I know and have seen all around us that life isn't always beautiful.  That is my fear. 

I'm reminded of those early hours the night after Matthew was born, after we noticed his missing thumbs and before we knew any of the other issues.  I sat there holding my squishy little day old baby, scared beyond comprehension.  I was reminded then that no one is promised a tomorrow.  The only moment we are promised is the moment we have now.  I know this and I am trying to relish today and be thankful for it.  But I'm selfish, I want today AND another 25,000 tomorrows with Matthew.  I want to see him grow into that amazing adult but live in fear that I may not.  

Wednesday, November 3, 2010

Reframe

Today I had one of those reminders that Matthew is developmentally behind.  It happens with every evaluation, with every 'developmental checklist', but today it just seemed stark.  With all of the medical issues, and the fact he hasn't been to occupational therapy in almost a month, I almost forgot that he was behind.  We've just been trucking along in the everyday, living and enjoying life moment by moment.  So, today I've been reminded, and it freaked me out a bit and made me a little sad. 

But now I remind myself that Matthew is my unique miracle baby.  25% of all pregnancies end in miscarriage with 60% of those because of chromosomal abnormalities.  Matthew is one of two known people in the world with his particular duplication.  The fact that he made it out of the womb is against the odds!  Thinking about that fact helps put the slight developmental delays in perspective.

Thinking about Matthew's health issues (heart and head in particular) also puts those delays into perspective.  For example, the fact that Matthew doesn't sit on his own yet seems a lot less important when we think about the upcoming surgery, where they will cut out a part of his skull. So, we'll continue to work on his development, giving him the exposure and opportunities to develop but we'll also work to keep it all in perspective. 

Speaking of the health issues, we are scared, worried, and plainly freaked out about them, but even our perspective about those important things is continually reframed by sitting in the doctors' waiting rooms with so many other families, going through similar or worse (sometimes much worse).  Everywhere we look, there are so many people dealing with the unknown and the unexpected...we are not alone. 

It's all about perspective! 

Tuesday, November 2, 2010

Through Matthew

I was walking through a store yesterday and came upon a group of special needs adults.  The sight of them immediately brought tears to my eyes.  Months ago, I might have cried for the unknown in our lives, but not now.  As I looked at this group, I passionately prayed that we'll get to see Matthew as an adult.  And as I walked away, I was struck by how differently I see these individuals since Matthew.  I know through him how hard they have had to work for things that typical people take for granted.  I know through Matthew that they are beautiful, unique people, not to be looked at with pity but with compassion. Our lives have forever been changed since Matthew joined our family, and thankfully my perspective is changing as well.  

Monday, November 1, 2010

Happy November!

I can't believe it is already November.  Today was the originally scheduled but later canceled skull surgery.  They are still working on rescheduling, likely in 5-6 weeks. Meanwhile, I'm continuing to work through the red tape to get information from hospital to hospital. 

The positive about having the surgery rescheduled is that we got to enjoy Halloween last night.  The kids had a blast both trick-or-treating and passing out treats with their friends. 

My Super Heroes

Alyssa and Jackson with their friends

Superman must have gotten kryptonite in his bucket
So far, it looks like November will be a quiet month.  Our occupational therapist quit, so our weekly OT appointments are on hold until we can find a new therapist.  The only big day of appointments will be our pre-op appointments for the craniosynostois surgery right before Thanksgiving.  Hopefully we can keep Matthew (and all of us) well and out of doctors' offices this month!