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! 

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!

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! 

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!   

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!!

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. 

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?

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!

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! 

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.

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.  

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!

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.  

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! 

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.  

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!