Tuesday, October 27, 2015

A Very Happy Asher Update

Dear Family and Friends,

Greetings on this fantastic Fall day!  The colors in Virginia are in full swing and we are taking it in as much as we can.  

On Friday, we had an appointment with Asher's heart and lung doctors - the first since July.  They were amazed again at his progress, and his sweet smiles and spunk through the exams.  They were also able to get a very thorough echocardiogram (ultrasound) of his heart, as he zoned out watching Elmo on the big screen in front of him.  This echo was able to show us something that previous ones had not, and made it much easier for our cardiologist to advise us against Asher's need for heart surgery!  That may not sound like great news, but let me explain.  The ultrasound was able to show us, by measuring pressures and seeing the blood flow through the pulmonary valve in the heart, that the two holes in Asher's heart are actually releasing pressure on his underdeveloped lungs, and allowing him to stay alive and grow!  In a way, those holes are the reason he is still with us! 

This brings us great joy because it means the decision has (for now) been made for us and we do not need to risk using general anesthesia for surgery!  We are, however, considering a procedure under conscious sedation and local anesthesia or epidural whereby a g-tube could be placed in his stomach.  This would give him the ability to take in real (blenderized) foods instead of formula and the like, which are hard on his system.  He wouldn't need his NG feeding tube (through his nose) any more, which might help his oral feeding skills, and the new tube wouldn't come out as easily as the current one does.  There would still be risk, but not nearly as much as there was with the heart catheterization or repair that we thought we would need before. More to come on this issue, just wanted to let you know how you can be praying.

Asher's Baptism, October 25, 2014

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At his appointment this week
One year ago, today, we celebrated Asher's baptism and welcomed him into God's family.  It was amid much uncertainty that many of you joined us for that event, both in body and in spirit.  An unforgettably glorious fall day - filled with both joy and deep longing for his very life to be sustained.  One year later, this little miracle is happy, growing, and amazing us daily with his sweet personality!  God has sustained him and us at every step, and will sustain us still, by His grace.

Tuesday, July 28, 2015

CT Scan Update

Dear Friends and Family,

We have been so blessed by all of your prayers, texts, e-mails.  Thank you for your love and concern for our family and our boy.

Asher was a great little patient through his CT scan.  He didn't even need an IV line, so he was happy to avoid another poke. 

The initial feedback that we received from the radiologist was that the images of the lungs had not changed much since his previous scan last October.  We still wait official word from his pulmonologist, once she has been able to compare them closely, which may demonstrate some growth (since he has grown, and his oxygen needs haven't changed).  We will also wait to hear from the cardiologist and hopefully an anesthesiologist to further discuss the risks of sedation should we decide to attempt a heart catheterization.  
The long and the short of it:  at first glance it doesn't look like the best we had hoped for - substantially improved lung tissue, we may not be any closer to knowing Asher's tolerance for invasive surgery, but we wait with hope for more detailed results from pulmonology.

We will update further if there are any changes or big decisions to make.

He did so well during the scan, though, and I even got to ride with him through the machine, holding his little arms above his head as we sang, "Had a Little Rooster."  
After our long day of appointments, play dates for Noah and Ethan, and dinner with friends, I found the Bible verse for today on my kitchen counter:

"The steadfast love of the Lord never ceases,
his mercies never come to an end;
they are new every morning;
great is your faithfulness."
Lamentations 3:22-23

This verse comforted our family last Fall as we first faced all the unknowns, and it comforts us still.

With much love,
Laura and Michael

Thursday, July 09, 2015

Asher Summer Update

Dear Friends and Family,

We realize it has been too long since our last update.  Indeed, we have been very busy with moving into our new home, settling in, and enjoying the new summer schedule with everyone at home.

The new house has been a tremendous blessing - allowing everyone a little more space.  We did a lot of construction on the front end, our families and friends all helped to turn it into a beautiful home. There will always be projects, but most of the big ones are done and we feel so welcomed into our new neighborhood.  Asher in particular likes the back deck, where he can look out into the woods and hear the birds! 

Through it all, our little champ has been growing well (now 14 lbs 13 oz!) and he has had very few of his hypoxic spells (when he goes blue and unresponsive for a brief period of time - terrifying).  While those will always remain a concern, we're grateful that they are more rare now.  He is sitting up, babbling a ton, smiling occasionally, taking oral feedings of cow's milk, yogurt, and water, and using a sippy cup!  At his most recent speech therapist appointment, he did so well that he will now start getting part of his nutritional feeding orally, and reduce the amount through his NG tube. These are all sweet answers to prayer. 

His last clinic visit in May was generally good, but his cardiologist is leading us to ask when and if we might want to explore Asher's need for heart surgery.  The first step in determining whether or not he can handle surgery will be repeating the CT scan of his heart and lungs to see if his lungs have grown at all since the last one he had in October - the one that revealed the underdevelopment of lung tissue.  If they have grown, that is very good, although not necessarily a direct indication of his ability to withstand sedation (being intubated).  If he is intubated (for any number of needed surgeries - heart catheterization, eye alignment, repair of the holes in his heart), there is a high chance that his lungs would not be strong enough to take over again after being extubated.  So while he is doing extremely well, better than anyone expected, this has reminded us that there could be some very difficult decisions in the future. 

Inline image 1At this point, we are prepared to schedule the CT scan, perhaps in August once he is a year old. (!)  Beyond that, we covet your prayers.  There may be some sense of urgency, as some children with heart disorders require surgery before two years of age.  Over time, the high pressures in the vessels cause damage.  With Asher, we don't know what that window is. We have an appointment on Friday, where we will discuss a lot of these concerns, and maybe leave with a better timeline. 

Here are some ways you can pray:

Praises:
- For all the ways he has grown and developed!  We are eager to celebrate his first birthday on August 12th!
- For all the support that we are receiving at home - Physical Therapy, Occupational Therapy, Speech (Oral) Therapy, and personal helpers 4 days a week for 6 hours a day!
- For his new portable oxygen concentrator that allows us the ability to travel longer distances in the car without needing all those tanks.
- For his new leg/foot braces that he wears for 6 hrs a day - they prevent his from developing muscle contractures in his feet and will give him the best chance at walking one day
- That all of these supports are covered by insurance!

Please Pray:
 - For stamina in parenting and finding time to rejuvenate both personally and as a couple.
 - For opportunities to make memories as a family this summer - it's really hard not being able to travel as we usually like to do, but it also means that Asher is still with us - and in that we rejoice.  We are spending one week away at a family camp (Shrinemont) with Michael's family, where we are renting a home that is handicap accessible.  Please pray that this vacation will be as restorative as it can be and that he will remain stable throughout our time there.
 - For wisdom and peace - as these big decisions in his care loom.

Also, just before we moved, a new friend gave us the gift of creating a short video to give folks a better picture of who Asher is and what his special needs are.  He is starting a non-profit called Help Healing Productions that is designed to create videos at no cost to the families, telling each child's story and bringing awareness and support for the child's and family's needs.  Asher's is linked below, and it is beautiful.  At the end, there is a link to the gofundme account that was created by a dear friend of ours back in October.  We want to be entirely forthright in saying that Asher's current financial needs have been met, much of it covered by our primary insurance or Medicaid, and so much generously given by many of you.  Any funds raised at this point are being put aside for future potential needs (equipment not covered by insurance, etc.)  Again, thank you for your great kindness to us.  So much love has been poured out.

Here is the link:

"For you, O God, have tested us;
you have tried us as silver is tried;
you have brought us into the net; 
you have laid a crushing burden on our backs;
you let men ride over our heads; 
we went through fire and through water;
yet you have brought us out to a place of abundance."
Psalm 66:10-12

We are seeing God's abundance as He provides daily for our needs, and our daily needs are all we can handle.  When people ask us how we are doing, we often answer "one day at a time."  We try not to worry about the future (though I do, even as I write this), because it might very well crush us.  We will never understand why this has all happened in our family, but we can trust that through it all God is good.  While it may not make sense, we see His goodness more clearly because of Asher.

With love and gratitude,
Michael, Laura, Noah, Ethan, and Asher


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Saturday, March 28, 2015

This Week

March 26, 2015


Dear Friends,

This week has been extremely full.  We were discharged yesterday from UVA Hospital after two days there, specifically monitoring Asher for 24 hours to rule out seizures.  It had been suggested by one of his doctors that the recent episodes he had been having sounded slightly like seizures.  This past weekend he had five episodes, so we decided to monitor him just in case there was new information that could help us know how to best treat him.

The video/EEG monitoring came back almost completely negative for seizures.  While we can't be 100% certain because he didn't have one while in the hospital, his tracings didn't appear prone for seizure activity and for a little guy with so much going on, they actually looked "quite good" for a baby his age.  That was a relief and an encouragement.  The episodes are, then, most likely caused by that change in pulmonary blood pressures, as we had thought before.  We can do some things to help him avoid having them, but it sounds like they may not go away, given his anatomy.

We are all happy to have him (and Mommy) back at home with us.  He was back to his cooing, happy little self by the evening.

To add to the fun, we may or may not have treated someone in our home for lice (for the 3rd time in a month and a half), and Michael's school chorus performed at the Paramount on Tuesday.  
We also closed on our new home yesterday!  Our Dads are here to help with lots of house projects before we move in on April 25th.  Meal help was graciously started back up to help us in these nutty weeks - just let us know if you are interested in helping in this way or any other practical moving way and we will happily find you something to do. (c:

Thank you for your persistent prayer!  Asher's sweet little life is joy amidst the chaos. 

Much love,

Michael, Laura, Noah, Ethan and Asher

Thursday, March 19, 2015

7 Months

Dear Family and Friends,


Greetings as the hope of Spring beckons us outside again.  We are happy to have made it through the cold, dark days of winter with Asher, now 7 months old!  The rest of us have suffered colds and viruses, but this little guy has avoided all of them with the help of his vaccines and breast milk. 

video
Overall, there has been little change in his status.  He has continued to grow (almost 12 lbs), but has slowed down slightly, so we are adjusting for that nutritionally to help him keep the pace.  He has improved his ability to track visually and is really quite interactive, which we all love!  His smiles and mimicking coos bring us deep joy.  He is making very slow progress, orally, but is learning to allow a pacifier into his mouth without gagging.  We have been experimenting with whole foods like apples in his mouth, just for tasting - very entertaining.  The presence of the NG tube remains irritating, but he tolerates it far better than anyone of us would.  At this point, there is still no timeline regarding placement of a "G tube" (one that would go directly into his belly, instead of through his nose).  Any surgeries are still a ways off, unless his lung tissue demonstrates maturation, indicating his ability to handle sedation.

We are thankful to have all the hired helpers that we need at this time. Each one is a friend whom we already knew and who loves Asher and our family!  We are so grateful to each of them and to so many who also volunteer their time to help me run errands, work, attend church, give us date nights, or help me during Michael's rehearsal nights with all the boys.

In the last couple weeks, Asher has had a handful of episodes where he turned quite pale or blue.  It coincides with bowel movements and indicates that the blood flow through the holes in his heart has briefly reversed, due to the increased intrathoracic pressure as he bears down.  The only things we can do in these moments are to increase his oxygen level and comfort him until he can recover.  The episode lasts only a few minutes, though it feels like an eternity, and the recovery, 15 minutes or so.  It is in these moments, that we hold him extra close and are reminded of his and all of our fragility.  Each breath is labored for him and seemingly, so close to a downward spiral where we could lose him.  We haven't felt this worried in a while, and it's a tough wake-up call.  

Tonight, Ethan, Asher, and I were reading a book about baby Moses.  When we read about his mother placing him in a basket in the river, I mentioned that she must have been scared for her baby son.  Ethan then said, "Yeah, because he could've died.  Mommy, could Asher die?"  I had to respond honestly.  He covered his face with his hand, but I could still see his out-turned bottom lip.  This is a reality that none of us want to face.  Truly, none of us know when our last breath will be, but we have hope in a God who does.  He has sustained us thus far and will sustain us still as we continually face uncertainty.  
The coming six weeks hold a lot of change for our family.  We are under contract on a new home, still in town, that will better meet our needs.  As crazy as it sounds to move at a time like this, we have seen God's kindness in the whole process. Our current home sold in no time, and so many details have worked out in extraordinary ways. We are very excited about this new place, but we will dearly miss our neighbors on Chisholm Place.  They have been like family to us. I'm pretty sure we will witness a miracle as we again need to rely on our family, our church, and our community during this transition.  If you are local and want to help with the move, just let us know.  We close on our new home on March 25th and have until the end of April to move in (end goal is April 25).  

Let us know if you would like our new address.

Again, we are so grateful to be coming into this season of Easter with eternal hope in the Risen Lord, who sustains our every breath!

With Love and Gratitude,

Michael, Laura, Noah, Ethan, and Asher

Asher's First Nap in his new bedroom! (We were just walking through)
Discovering his feeding tube

Saturday, January 10, 2015

A New Year's Post and Update

Dear Friends,

2015.  Wow.  Two months ago we doubted that we would even have Asher with us for Thanksgiving, and now we are rejoicing that we could celebrate Christmas and the New Year with him too.  As we stare down the foggy road ahead, all we know is that our feet are grounded and a path has been laid before us.  Many of you are the sign posts giving us hope and encouraging us as we travel, slowly.

The Advent and Christmas season was a blessing to all of us.  We made special efforts to bring Asher with us to our church's "Lessons in Carols" and Christmas Eve services.  Both were a rich encouragement to us and so many were happy to see this little boy who they have been praying for.  Holding Asher (by the wall with his oxygen tank, away from all the little flaming candles!) we sang "Hark the Herald Angels Sing" and the third verse had never sounded more hopeful: 

Hail the heav'n-born Prince of Peace!
Hail the Sun of Righteousness!
Light and life to all he brings
Ris'n with healing in His wings
Mild He lays His glory by
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth
Hark! The herald angels sing,
"Glory to the newborn King!"

I found myself unable to sing, and instead weeping as I considered the beauty of these words.

The week of Christmas we had a fun visit from my sister and nieces and then went to Arlington the day after Christmas to be with Michael's family.  It was so good to be with cousins and the rest of the family there.  Like Thanksgiving, it was stressful to travel, but completely worth it for the memories and the traditions.

Ice Skating with the cousins on Christmas Eve
















How is Asher?
Asher gets time with Aunt Cindy
Honestly, he's doing as well as he possibly can be.  He will be five months old this monday and weighs about 10 1/2 pounds.  That's 50% more than he weighed when we left the hospital! His recent clinic visits have been helpful as they continue to monitor his status, adjusting medications as needed to keep up with his weight gain.  His last visits were with his cardiologist, a speech therapist, and two friends here who are a developmental pediatrician and nutritionist.  We also have a speech therapist and occupational therapist who are coming to the house regularly.  You might wonder why he needs a speech therapist.  Asher hasn't taken any food orally since the beginning of November and he's essentially lost his reflex to suck.  A speech therapist will help us with regaining and building his oral skills.  Since his visit last week, he has already shown improvement as we practice with him at home now.  Yesterday, while his speech therapist was with us at home, he smiled SEVEN times!  It was such a gift, since he does that so rarely. All milestones will be reached late, but we celebrate every one. Lately he has been reaching out to grab things with his hands, and he always loves music.  Next week we will see a pediatric ophthalmologist to see if he has any insight into his vision needs.  His lovely nurse still visits us twice a week or so. Lots of doctors, lots of appointments, but we never thought we'd get to this point, so we're thankful. He is one tough kid.

We are currently seeking out a better, longer-term system for Asher's caregivers and are beginning a search for the right team of folks who will be with us at home so that we can continue with our normal jobs and family life.  He qualifies for the Virginia Medicaid waiver for the disabled, so we are able to actually hire these helpers.  Please pray for this process, as it feels pretty daunting right now. After four months of receiving amazing meals from you all, we're back to cooking, something we really enjoy when we have the time. 

This is still a few months away, but eventually if he keeps growing, we will talk about taking another CT scan of his lungs, and discuss possibilities for future procedures.   For now, we'll keep taking it a day at a time, trying to find a new rhythm in this new year.

Your prayers are still appreciated and deeply felt. God is good. Pray for rest, which is pretty hard to come by, and for patience with each other and the boys. Pray for Asher to grow and be able to take food by mouth again. 

Thanks for reading this long update, and we pray that your 2015 is full of grace and peace. 

With much love,

Laura and Michael

Asher's First Christmas Party

 

video


"Quick, Maggie!  Pull the tubes while their not looking!"

Sunday, December 07, 2014

Family Time, Clinic Visit


Since our last update, we have had some wonderful time with both sides of our family.  My parents came up for a great weekend of celebrating Mom's birthday, and we had a big Thanksgiving in Arlington with Michael's family.  It was good realize that we CAN leave town (Asher's first trip!), though it's certainly not easy.  There is no running from all of the extra work and gear that goes into caring for our precious boy.  We just bring it along.  He did great in the car, and we made some beautiful memories all together. That, we are learning, is most important right now.  His NG tube fell out soon after our arrival, but we were thankfully able to put it back in ourselves.


On Friday  Asher had an appointment with his cardiologist and pulmonologist.  He also got another echocardiogram (an ultrasound of the his heart) which was about the same as his last one.  His doctors were pleased with his growth and progress.  He weighs 9 lbs 5.6 ozs!  He is not on the typical growth curve, but he has his own little growth curve, on which he's moving along just fine.  We will be starting a new medication to see if it can reduce his pulmonary hypertension at all.  He is scheduled for another follow-up visit with his doctors in two weeks.

Meanwhile, we are all preparing our hearts for the coming of Christ during this time of Advent.  Honestly, it's a challenge to be hopeful these days as we long for our boy to be healed, but we do  trust that God is doing amazing things in all of this - even if we cannot understand it at all right now.

Ollie, our Christmas mouse (see below) has made his return to our home.  He loves to help the boys count down the days by giving them little tasks or creating some fun activities for them to do.  This year we are seeing more clearly how important all these seasonal traditions are.  And it would be so much more challenging if we did not have all the help we do - grocery and errand runners, meal providers, and babysitters.  Thank you again for all our your prayers and support - for being Jesus' very hands and feet to us!!