Baby Wyatt

My sweet nephew Wyatt passed away in his sleep from SIDS on the night before Christmas Eve.  He was almost five months old.  (Link to obituary) 



He was the fifth grandson in our family and was truly the sweetest, happiest baby. The only time he showed his temper was when he was hungry!  We had so many hopes and dreams for baby Wyatt.  I knew he and Duncan would be best buddies, just like Roper and Robert are.



I have often found myself speechless in the past twelve days.  I can find no words of comfort for Rob and Kelli.  It has been heart-wrenching to watch my sweet brother and sister-in-law go through this.  I feel so helpless.  There are times when I haven't even found the words to pray.  Verses, hymns, and words of songs bounce around in my head, my thoughts are scrambled and my emotions are completely mixed up.





We can't make sense of it now, we just have to move forward in faith and take comfort knowing that he is in a place where sickness, sorrow, pain and death are felt and feared no more.  He is with all the saints that have gone before us and I know there were many waiting to greet him at the gates.


Healing does not seem possible at this point, but I know that God will supply the peace and comfort we all need in time. I am reminded of Brian Habig's sermon last October.  We live in a broken, fallen world.  If it weren't, then we wouldn't need God and wouldn't long for something better.  In the words of my Daddy, "Our God is an awesome God, and our savior Jesus Christ is Lord of Lords and King of Kings.  We are leaning on the everlasting arms."



Romans 8:18-30
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
 

Lights at the Zoo

Last week my cousin Kate suggested that we take the boys to see the lights at the zoo...she is so sweet...how many college students choose to spend a Friday night with their little cousins?  Then she offered to watch them Saturday morning while I got some Christmas shopping done and Graem hunted.  Yeah, she is pretty great.  (Thanks, Kate!)


Two monkeys + a goat:






Happy stinker...






They had a snow machine at the zoo entrance...M&R were pretty fascinated with the snow...


Happiness:

Back to Blogging

I'm really trying to get back in the mindset of blogging regularly.  It is HARD because I have so many unwritten posts floating around in my head...and so many pictures in my Flickr account that I need to post!! 

I've decided to just start fresh and not worry about the fact that I have six months worth of pictures & stories & adventures to share!  I might not ever get around to posting them, but at least I won't get farther behind.

Here's to a fresh start!!  See you soon.

Test Results & Ramblings

An update before I forget the details...  :)

In my last post I mentioned that Duncan's neurologist can tell from the MRI that the stroke was caused by a blood clot...so the next steps were to test his blood for clotting disorders and also scan his heart to make sure it was working properly (he was born with a heart arrhythmia, so the neuro thought the clot could have originated in his heart).

The blood work came back normal.  We had a little scare with his heart, which was mostly due to a phone call from a nurse that lacked full information on the results of the echocardiogram.   Turns out he has a small hole in the top of his heart called a PFO which is normal for babies in utero but should close on its own after birth.  It is not something that requires surgery to close; our ped is hopeful that as Duncan grows it will close on its own.  He will have another echo in 6 months to monitor it. 

So...the hole probably caused the arrhythmia...but based on the location of the hole, it did not likely cause the clot.  Which makes the stroke more of a mystery.  A mystery which we will probably never solve.  As much as I would like to know exactly when and why it happened, I have accepted that I probably never will know and it wouldn't change anything going forward, so I'm doing my best to let it go.

We are going to see a different neurologist, although we aren't sure who or where.  We really would like to find a ped neurologist that specializes in infant stroke.  In the meantime, Duncan is continuing weekly PT & OT (and of course we are modeling the exercises at home).  He loves it!  The OT made a hard splint that he sleeps in at night and a soft splint that he wears for part of the day.  The main purpose of the splints is to open his right hand and stretch out his fingers, particularly his thumb. 

We can see some improvement from the therapy.  He has been getting up on hands & knees and rocking like he wants to crawl.  I think it will be a while before he takes off because he has to figure out how to make his right hand/knee move forward, but we are happy that he is trying and the therapists like the symmetry of his "crawling stance."  When he first got up on hands & knees, his right arm was bowed out to the side but now he pulls it right underneath him so that the left and right arms are both straight. 

So...we see improvement, but at the same time the weakness in his right side has become more pronounced.  His left side seems to be getting stronger by the minute and it is just happening much more slowly on the right.  He can now feed himself Puffs or Cheerios with his left hand, as for his right hand, we are just happy if we see him attempt to use it at all.

We are still working on starting Speech Therapy (SLP).  Why would a 7-month-old need speech?  For one thing, he is not really babbling at all.  Although he is not entirely quiet, he is not making syllable sounds (baba, dada, etc).  Sometimes SLPs can help with feeding issues, which thankfully he does not have (as of Thursday he is almost 21 lbs!!).  The most important thing an SLP can help Duncan with at this point is cognitive development.  It is easy to focus on the way the stroke affected his right side because thats what we see, but the brain is a muscle which needs exercise, and SLP can help with that through cognitive exercises.  I'm really curious to see what types of things they will do with him!

Lots of people ask me how I'm doing or how I'm handling all of this...and I have to say I really have a peace about everything.  I don't want Duncan's stroke to define him.  I know we will have bumps in the road...but isn't that part of parenting?  I know Duncan will struggle at certain things...but we all have struggles.  I have my moments of sadness and fear but I'm hoping and praying and doing my best to get past that!  Above all, I know that God has a plan and I know that it is the best plan. He blessed us with Duncan which tells me He knows we can handle this! 

Earlier this year our pastor preached through the book of Ephesians.  I don't think Duncan had even been born when he taught Chapter 3, but several of the verses stuck with me.  I saved them in my iPhone, this is my prayer for all of my children and we used these verses on Duncan's baptism invitations:

"And I pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God."

Those verses are a reality check for me!  They bring me back to what's important -- teaching my children the love of Christ.  Not to make light of Duncan's condition, but his life will be bigger than what we are going through now.  I'm thankful to be part of it!

Update on Duncan

It's been a while since I've posted anything on my blog...and now I'm here to write a post that I can't believe I'm writing.  We have just recently found out that sweet Duncan had a stroke around the time he was born. 

A few months ago we started noticing that Duncan prefers to use his left hand.  In his swing, he always reaches for the orange fish to his left.  In his high chair, he will completely twist around to reach for something with his left hand.  In his exersaucer, his right hand will often fall down into the seat while he reaches and plays with his left hand.

Once we noticed it, we couldn't ignore it.  It's not just that he prefers his left hand, he rarely uses his right hand and when he does he has to work at it -- you can tell.  Also, he almost always rolls to his left, because if he rolls to the right his hand gets stuck underneath him.  When we put him on his stomach, he pushes up with both arms but his right hand stays in a fist.  For that matter, his right hand is almost always in a fist, and he usually holds it close to his chest.

I mentioned all of this to his pediatrician at his 6-month check-up, he saw what I meant, but thought we should wait and see if he started using his right hand more by his 9-month check-up.  I just couldn't shake it.  I knew something was not right.

I called back and asked for a referral to a pediatric physical therapist, which our pediatrician was on board with.  We saw the PT the following week, which at this point was just a short 2.5 weeks ago.  She did a very thorough observation/evaluation and said that she thought his leg and foot might also be affected.  She said that therapy would help Duncan, but that to find out WHY he wasn't using his right side we would need to have an MRI done.

Our pediatrician ordered the MRI and it was scheduled for later that week.  Duncan woke up on the morning of the MRI with his first cold and ear infection, so it was delayed for 5 days so he could get a round of antibiotics. 

It was re-scheduled for last Wednesday. The sedation for the MRI was a disaster.  Apparently it is really hard to sedate a chunky baby because there is a layer of fat covering their veins!  After being stuck 6 or 7 times by 4 or 5 different nurses, we gave up on the sedation.  They re-scheduled us to come back the following week to have the MRI done with full anesthesia.  As a last-ditch effort, they suggested I try to feed him and get him in a good, deep sleep & they would try to do the MRI while he was asleep.  Believe it or not, it worked!  He was so sleepy, hungry & tired of being stuck with needles that he zonked out.  The MRI was so loud, I still can't believe he slept through it!!

That was last Wednesday.  On Thursday morning I left for NYC on a trip that had been planned months ago with some good friends.  The timing was awful for sure...but I knew that me going to NYC would not change the results of the test, so I went.  It was really hard to be away, especially when I got the call from Graem with the results.  He never used the word "stroke," but opted for a gentler "spot on the brain."  We were scheduled to meet with a pediatric neurologist on Monday (this week).  I tried my hardest not to obsess over being away and I did enjoy the trip, but I've never been happier to be home, see the big smile of sweet Duncan and hug all of my boys very tightly!

The neurologist appointment was really hard and took most of the afternoon on Monday.  He explained to us that the stroke was caused by a blood clot that traveled through Duncan's neck to his brain around the time he was born.  It is located in the left parietal lobe.  The neurologist describes it as small, but in the pictures Graem and I were surprised at the size of it (definitely more than just a "spot"). Duncan was born with a heart arrythmia that corrected itself by his 2-week check-up, and the neurologist said it is reasonable to think that the arrythmia could have produced the clot, so he is sending us to a cardiologist for more testing.  We also will have blood work done to check for any clotting disorders (next Monday).

Although the neurologist was mostly encouraging, he also presented us with some realities/expectations that were hard to swallow.  I can't even go into them because I refuse to dwell on what the doctor has said Duncan "can't" do -- only time will tell. 

He started OT on Wednesday, which will continue weekly in addition to PT.  He will likely also start speech therapy soon.  We can already see some improved use of his right hand after just the past few weeks of therapy.  Our PT has commented several times that he is very motivated...he is trying to crawl and will work hard to use his right hand when he is challenged!  You will notice in the picture above, which I snapped with my phone earlier tonight, his right hand is open.  He normally has it clenched/fisted, especially when he is asleep.

We have learned that most infant strokes happen randomly and without cause, and that 40% of infant strokes are fatal.  We are so very thankful that the Lord brought Duncan through the stroke.  I can't bear the thought of what my sweet baby went through but I am so grateful for him and that he is otherwise a very healthy and happy baby!  We are encouraged that he is so young and that the brain is an amazing organ that can re-circuit itself to compensate for damage. We are praying for the best and taking comfort in knowing that in all things God works for the good of those who love Him!

Silly

Mason and Roper saw me taking Duncan's 4-month pictures and wanted in on the action...here they are pretending to be baby D.

Four Months Old

Three of the last four blog posts that I've done have been of Duncan & his monthly pictures!  I've taken lots of pictures I just haven't made the time to update my blog.  Now I've let so much time go by that I can hardly remember our trip to Vancouver back in May!!  Hopefully I can go through the pictures soon, which will certainly jog my memory, then I can post them on here because I definitely want to share them!

Little D-Mac is now 4 months old and last weekend he finally started sleeping through the night (cue the "Hallelujah" chorus)!  I'm not sure what he was waiting for.  Mason and Roper slept through the night at 2 months old.  He is also rolling all over the place.  If I swaddle him and put him down on his back he will squirm and wiggle until he's out of the swaddle and then he flips right over.  So, I've given up the swaddle and have started letting him sleep on his tummy (maybe that has helped with the night-time sleep?). 

Now that we're home from the beach I'm making a big effort to get him on a good daytime schedule, with a morning and afternoon nap instead of lots of catnaps throughout the day.  I'm also trying to extend his feedings to closer to 4 hours.  This makes him really mad and usually I give in, after all I don't want to do anything to make him start waking up at 4:00 AM again!  :)

He goes to the pediatrician for his 4-month check-up next week, so I'll post stats then!  For now...

What happened to all that hair he was born with?