Fantastically Ordinary

So, to catch everyone up…We left messages for the GI (on Monday and Tuesday) but haven’t gotten a call back.  We’ve got an appointment Friday and hopefully the GI will have some wisdom to impart since Matthew’s eating is still not going well. 

On Monday, Matthew had a renal ultrasound in advance of our urology and nephrology appointments this month.  I got a sinking feeling in my stomach when the technician wrote in his notebook and made notes on the screen with 3 question marks.  Then the technician asked me “does he leak out of his belly button?” I haven’t been surprised by a question from a medical professional in a while and this particular one struck me as quite humorous.  “What?!?!  Leak what out of his belly button?”  In utero the bladder is connected to the umbilical cord that comes out the ‘belly button’ and that connection typically disappears before birth.  If it doesn’t, it is called a “urachal anomaly” and urine can leak out of the belly button.  Matthew doesn’t leak but they suspect he might have a urachal anomaly.  We’ll get more details at our urology appointment on Thursday but if he does have this, it doesn’t sound too bad from the brief research we’ve done.

Though, goodness, Matthew can’t seem to catch a break.  We’ve had a string of rough news…the possible craniosynostosis, the new heart murmur, the resurgence of the feeding issues, and now this possible urachal anomaly.  Through all of this, we are rejoicing in the ordinary.  My heart soared today when Matthew grabbed my hair and wouldn’t let go.  How fantastically ordinary! We continue to hope for fewer surprises and more of the ordinary! 

Eating Update

“I just don’t get it.”  I’m guessing those words have been uttered in our house upwards of 400 times since Matthew was born… with most likely 90% of them said about his eating.  We had 2 glorious weeks of perfect eating post-surgical recovery.  In the last week plus we’ve gone downhill, sliding back to the pre-surgery days of screaming and refusing to eat.  It is surprising how Matthew’s eating so greatly affects our stress levels and the level of optimism in our house.  It is a noticeable difference. 

I keep saying “something has to be wrong” (usually right after I say “I just don’t get it”), but really I think the wording should be “something is wrong”.  Watching Matthew eat (or not eat), feeling him writhe and hearing him scream tells me something is wrong.  This isn’t just a little irritation.  This is not okay. 

So, tomorrow, first thing in the morning I’ll be putting a call into our GI.  We need to keep digging.  We have to figure this out and fix it.  We need to fix it for Matthew and for us.  We have other pressing matters to take on!  Continued prayers and good wishes are always appreciated!! 

Fleeting Moments

As I was holding Matthew a few nights ago, watching Alyssa and Jackson play nearby, I was saddened by the realization that I cannot remember Alyssa when she was Jackson’s age or Jackson at Matthew’s age. Which means that I’m probably not going to remember this moment in time either.  Very sad.  I wish my memory was an unlimited flash card…where all these amazing images, words, and feelings would forever be imprinted.   

Darren reminded me that was the original purpose of this blog…to write down those little things that someday we’d miss.   So, please allow me to intermittently add the little events, the non-updates, to our blog.  We’ll continue to update the big things too, but I need a reminder of how good the every day is and a place to look back on it all.

We took the family out to eat last night…to a sit-down restaurant…and it surprisingly went really well.  Alyssa was the big girl, placing her order, and saying please and thank you to the waiter.  Jackson was cracking us up by buttering his bread with a cracker since I took away his knife.  We also laughed when he tried to bring home the ketchup and butter in our doggie bag.  And Matthew was the compliant baby by taking his bottle and promptly falling asleep.  It was a delightful meal.  We came home where Aly and Jax went to sleep without a fight, and Matthew took his bottle (yes, again) and promptly fell asleep (yes, again).  All in all it was a perfect evening for the Hoy House.

Happy 6 Months!

Happy 6 Months to Matthew!

Alyssa making Matthew smile

We cannot believe it has already been 6 months since our sweet baby Matthew joined the world!  Wow, it has been a steep and dramatic learning curve!  Darren, Alyssa, Jackson and I love Matthew more and more every day.  He’s a calm & happy baby.  We love seeing Aly and Jax interacting with him.  It's just too sweet!

Jackson reading to Matthew

Matthew’s 6 month check up was today.  We are happy with our new pediatrician.  One of my concerns has been Matthew’s excessive sweating (especially while eating) and our pediatrician recommended we do a stress test during our visit today to see if it is a cardio or a brain regulatory issue.  Matthew passed the stress test, so it is probably not a cardio issue, but Matthew has developed a new heart murmur we are going to have looked at by a cardiologist.  Other than that new finding, Matthew is in good health with his known uniquenesses. 

Matthew’s going to be busy this next month—a renal ultrasound, urologist appt, craniofacial/neurology appt, cardiology appt, nephrology appt, in addition to occupational therapy, speech therapy and a visit with ECI…whew!  We pray for good results from all of these upcoming consultations!!  Thank you for the continued prayers for baby Matthew!

Pieces of the Puzzle

I’m having a Forrest Gump kind of day. But instead of life being like a box of chocolates, I’ve decided that life is a puzzle still in the box.  I don’t know what the picture is supposed to be when the puzzle is all assembled, but I see this:

-Some pieces are beautiful in their own right
-I notice some pieces that fit together immediately
-Other pieces are so unusual, I’m not sure they even belong to this puzzle
-A few pieces are hideous.

The events in the last few months have connected some pieces I had previously thought didn’t belong.  I'm still clueless as to what the picture will be.  The puzzle isn’t even close to being finished, but I’ve been promised all of these pieces do belong to my puzzle.  

Gift of Today

Since Friday, I’ve been reeling from the news of the latest Matthew surprise (possible craniosynostosis ) .  This isn’t the first surprise uniqueness we’ve uncovered… the intestinal malrotation was quite a shock.    So why has this latest news hit me so hard when it doesn’t seem too dire? I think it is because this is the first uniqueness that has seemingly developed since birth. All the others were there when Matthew was born, whether we knew about it or not.  It makes me nervous for what is yet to come.  But when that worry creeps up, I’m reminded of the quote “Yesterday’s the past, tomorrow’s the future, but today is a gift. That is why it is called the present.”  Today is the only day we’ve been promised and we will celebrate the gift of today! 

And today Matthew has given us a big reason to celebrate.  This morning, Matthew rolled over for the first time!!  Both Darren and I were here to see it, and for the hour after, Matthew practiced his new trick.  Hooray!  

Matthew mid-turn

In addition to this great news, we had our post-surgical follow up with Matthew’s talented surgeon.  Matthew has fully healed from his intestinal surgery.  Yippee!

On Our Toes

We’ve had a string of good news lately…Matthew’s improved eating post-surgery and the improved hearing.  We’ve been on a high! 

But Matthew is making sure we don’t become complacent.  His appetite has decreased lately and we have suspected that he had an ear infection.  At the doctor’s office this morning (our new pediatrician), we were given news we expected … yep, double ear infection, and news we didn’t expect.  The doctor thinks Matthew has “metopic synostosis” which is a type of craniosynostosis. 
               

“Craniosynostosis is a term that refers to the early closing of one or more of the sutures of an infant's head. The skull is normally composed of bones which are separated by sutures.

As an infant's brain grows, open sutures allow the skull to expand and develop a relatively normal head shape. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain.” (source:  http://www.kidsplastsurg.com/skull.cfm)  

From what we’ve read, it sounds like this can be fixed via surgery (and maybe a cute little helmet).  Click here for a nice overview.  (Thanks, Bonnie!)  

We’ve been referred to a craniofacial surgeon and have an appointment for a formal diagnosis and discussion about treatment options early September. We are thankful there is a fix for this uniqueness and pray for the best outcome for our sweet baby Matthew.  Thank you for the continued prayers for Matthew and for us as we deal with this latest surprise.

Hearing Test Results

Matthew’s hearing isn’t something we’ve been greatly concerned about.  We know several people who have degraded hearing in at least one ear, and they are all successful adults.  But, we have prayed that Matthew’s hearing either gets better or remains the same because degraded hearing does create challenges, especially in the school atmosphere. If you have a hard time focusing when there is background noise, which is often the case when you have hearing loss in one ear, learning in a classroom (especially an open concept classroom) can be a challenge. 

At 8 days old, Matthew was diagnosed with moderate to severe hearing loss in his left ear, his right was ‘normal’.  At 3 months, Matthew’s hearing had improved in his left ear to mild to moderate hearing loss, still ‘normal’ in the right.  Matthew had his 3rd ABR (diagnostic hearing test) yesterday. So at 5.5 months old, Matthew’s hearing has improved again.  In a surprise to his audiologist and us, Matthew now has “normal hearing sensitivity” in both ears.  The Dr indicated she’s only seen this kind of improvement in severe preemies, never in a full term infant.  Again, Matthew is in a class of his own!

This is very good news!! Matthew will have an ample number of challenges throughout his development but thankfully at this time, it doesn’t look like his hearing will be one of them!    Thanks be to God!!

Bits of News

Bits of today’s news from the Hoy House:

Matthew broke his first tooth!  We had suspected it was in the works given all of his drooling and chewing on his hands but now a little glimmer of white has appeared! 

Matthew’s eating is still dramatically better.  He’s taking about 135% of his pre-surgery volume and his eating time has been cut in half. 

In the last week, Matthew gained back all of the weight he lost after surgery.  He’s up to almost 13.5 pounds.   Pretty hefty for a Hoy baby!

We started Matthew on rice cereal. It is slow going but I’m hopeful that he’ll get the hang of it soon. 

Tomorrow is Matthew’s 3^rd ABR (diagnostic hearing test).  We are saying prayers that his hearing improved again (or at least remained the same).  I'll post when we know more.

Gift From Heaven

I’m sure having 3 kids and 2 full time jobs in and of itself can be a little overwhelming at times.  But life is just crazy with Matthew’s 12 specialists, 2 medicines taken 7 times a day, 7 feedings a day, pumping milk 5 times a day, daily OT exercises and so on plus the 2 preschoolers and two full time jobs .  What we are doing now is not sustainable.  Something has to give. 

In an amazing stroke of fate, a gift fell from heaven.  My company is offering a voluntary separation package.  Tentatively October 6 will be the last day (at least for now) of my 9.5 year career w/Accenture.  I had a little pity party the day I applied for the package.  I wish the decision wasn’t as easy as it was.  I know we now have to dream new dreams, but it is hard to let go of the old dreams.  I have to imagine my life in a new way, define myself differently.  I’m going to miss ‘work Katie’ and the wonderful co-workers I've been privileged to work with.  

We have no idea what the future holds, but me taking time off to concentrate on our family is the right decision, at the perfect time.  This will make life less complicated, less stressful.  Plus right after I submitted my application and was feeling sorry for myself that life is so different than I expected, I saw this face looking up at me and was reminded of the most important job I've ever been entrusted to do.

Matthew making it all worthwhile, Aug 2010

 The only thing constant in life is change.  Even though it may be hard, this is going to be a good change! 

His Own Story

I was looking through old pictures on my computer the other day and found this gem.  

Alyssa 7 months

 After enjoying the memory, I had to look at the date the picture was taken and compare Alyssa’s age/development to Matthew’s.  I did it before I even realized I was doing it.  Just like the doctor, I can’t help but compare Matthew to the typical kid. 

The reason we track development is to see if anything is amiss, and get early intervention.  We know Matthew is unique and we have him tied into every early intervention available.  No need to track.  One of my friends keeps reminding me…Matthew writes his own book, his own story.  He needs to be treated like he’s the only kid in the world.  So, time to throw out the book and stop making the comparisons. Matthew will do his own thing, in his own time.

Matthew 5 months

2 Weeks Post-Surgery

Considering that 2 weeks ago today was Matthew’s surgery, he is doing remarkable.  He’s surpassed his pre-surgery eating volume and his eating time has been cut in half.   The doctor’s were skeptical that the surgery would improve his eating, but Matthew is proving again that he’s writing his own story. 

Since we returned from the hospital a little over a week ago, we’ve been concerned we traded one problem for another.  His eating has vastly improved, but Matthew stopped sleeping through the night.  Not fun for Mommy and Daddy.  We keep hoping it is just because he got used to the late night visitors (taking vitals) but out of the 7 nights he’s been home, he’s only slept through the night once.   Now I’m blaming his midnight waking on his head cold.  Poor kid can’t catch a break as he started fighting a cold yesterday.  Hopefully this will soon pass and he’ll sleep through the night once again.

As a little aside, I know that Matthew spoiled us by sleeping through the night early.  Alyssa didn’t until she was 6 months and Jackson was almost 8 months.  But now I am spoiled, and I adore sleep. I love sleep so much, I’d pay money to be in the fan club for sleep. It is by far one of my favorite things.  So, I would be very happy if Matthew figured out how to do that again. Though if I had to choose eating issues or sleep issues, I guess … hmm… I’d prefer to not choose.  I’d be happy with a baby that both eats AND sleeps.  I know I’m asking for a lot.

The older kids are doing great in their new rooms.  They love playing upstairs in their playroom and they have slept well in their separate rooms.  Darren remarked this evening how much quieter it is now that Alyssa and Jackson can’t talk and play with one another after bedtime.  Hopefully that translates into more sleep for them and fewer times we have to go in to shut down the jocularity.  All in all, the Hoy kids are doing really well.  For that, we are very grateful! 

Cautiously Optimistic

Matthew has been in good spirits since we got home.  He’s been grinning ear to ear… as have we!  We are cautiously optimistic that Matthew’s surgery improved his eating.  He still gets a bit fussy when he eats, but nothing like before and now he takes an entire bottle (3.5 oz) in 10 minutes instead of the 30 minutes it was taking prior to surgery.  This is very good news!  Shorter, less stressful feeds are good for all of us.  Another unintended benefit of surgery is Matthew now shows signs of being hungry, which he never did before surgery.  We had a follow up with our GI on Friday and he’s pleased with the results of the surgery.  We continue to be thankful for Matthew’s skilled surgeon and Matthew’s recovery!

In addition to this good news, we are having a great weekend.  Darren’s Aunt Jeannie is in town visiting as is his brother Bryan.  They, along with Joy and Larry (his folks) helped us reorganize the house today.  Instead of a kids’ sleeping room and a kids’ playroom, we now have the boys’ bedroom, Alyssa’s room and the playroom has moved upstairs.  We still have work to do to organize the rest of the upstairs, but it’s a vast improvement.  Alyssa is very excited about her big girl bed and room.  Now that the main move is done, we look forward to relaxing and visiting with the family for the remainder of the weekend. 

This next week looks to be a slow week for Matthew.  He’s got the usual OT appointment and an appointment with the speech therapist that he adores but no other appointments.  We’ll take the time to work on his OT exercises, as he’s had a little backslide with his strength due to the surgery.  I’m sure he’ll overcome it in no time.   

We are so grateful for our fabulous friends and family who have been so supportive during Matthew’s recovery.  Thank you!

No Place Like Home

We are thrilled to be home, all under the same roof with a recovering baby.  Matthew is now taking almost the same volume of milk that he was taking before the surgery.  His output is looking about the way it did before surgery. (Was that coded correctly to not be too much information?)  We plan to fortify his milk in the next few days so that he’ll get ample calories, as we did before surgery.  His digestive tract is looking good!

Now Matthew just needs to remember how to sleep through the night again.  I keep telling him sleep does the body good, but he got used to the late night visitors while he was in the hospital and now thinks it is party time in his crib at 1am, 3am and 5am. 

We are grateful for the successful surgery, our skilled surgeon, our healing boy, and the prayers and well wishes of so many.  Thank  you!

Recovery Update- Afternoon 8/2

And we are home!  Let’s review the stats: 

1 malrotated intestine fixed
6 days/nights at TCH
3 small holes for laparoscope and instruments
1 larger incision
9 holes from IV sticks
2 tired but relieved parents
2 siblings happy to have their brother home
1 talented surgeon and countless others on his team
All for 1 sweet baby boy

Matthew still has healing to do, but we are thankful we can do it at home.  As always, thank you for the prayers and well wishes for baby Matthew!

Recovery Update- Mid-Morning 8/2

Our surgeon came by to tell us… ‘go home’!   He gave the orders to his minions to get us out of here.  Everything we are doing now, we can do at home .  Knowing that it is never a quick process to get released, I’m hopeful we’ll be out of here before rush hour starts this afternoon.  Thank you for the prayers and well wishes for Matthew’s recovery!

Recovery Update- Morning 8/2

Things are starting to normalize for Matthew.  Just like before the surgery, he’s now getting fussy when he eats.  I was hoping the surgery would magically fix our feeding problems, but it doesn’t appear that way.  The good news is that he’s increasing his intake and he’s about 2/3 of the way to his typical amounts and his system is still working.  We are awaiting our surgeon’s opinion of what needs to happen now for us to be released.  I’m crossing my fingers that it will be later today. 

Urology came by this morning to double check all is well, and it is.  Plastics came by this morning too.  The hand surgeon believes that Matthew may be a good candidate for moving the index finger to a thumb position, but he likes to do the surgery at 4 years (instead of the 6-18 months that we had read).  We were advised to make a follow up appointment with him in a year to discuss further.  In the meantime, we’ll probably seek out a 2nd opinion about that.

I’m not sure what I expected from Matthew’s recovery, but whatever my initial thoughts were, this wasn’t it.  As with everything about Matthew, he’s not following the typical path and it is on his own timeframe.  I’m thankful he has continued to heal and he’s been taking his baby steps to full recovery. 

Recovery Update- Evening 8/1

Today has been pretty uneventful. Matthew’s been taking increasing amounts of breastmilk today. No throwing up, but no dirty diapers yet either.  He’s also been incredibly fussy today.  Not sure if he’s finally hungry (and we aren’t able to give him enough quite yet) or if his belly hurts moving the liquid through.  Either way, I hope he feels a bit better tomorrow and we are able to continue giving him greater and greater volumes.  I’m looking forward to Matthew’s antenna coming out (his head IV) and then The Hoy House being under one roof! 

Recovery Update- Morning 8/1

Matthew is taking his baby steps to home.  He was on clear liquids yesterday and did well, so today he gets breast milk in small amounts first then increasing amounts throughout today.  If all goes well, we’ll be able to take out the IV and then maybe head home (dare I hope-- tomorrow)!  Though he’s had a few periods of fussiness, Matthew hasn’t needed pain meds in almost 24 hours.   I worry about jinxing it by typing it, but I feel like Matthew has turned the corner.  *deep exhale*  Thanks for the continued prayers and well wishes for our sweet baby Matthew.