Asher Update: It's been 4 weeks since we left the hospital

Dear Family and Friends,

We are well overdue for an update on Asher and our family, but to some extent it is a case of "no news is good news".  You all have been so incredibly kind in caring for us through this storm.  The waves keep coming, but through you we remain afloat.

We are slowly and timidly working out a new normal, but friends, it is hard. Medically, there is good news, in that Asher remains stable at home.  Last Friday he had a follow-up appointment with his cardiologist and pulmonologist who were both pleased with his continued stability.  He really is a little fighter, and has surprised everyone. He's learning to use his hands more, and lifting up his head when on his tummy, but still doesn't smile or hold a gaze very often. This week he has had a cold, with a cough and congestion, but he seems to be weathering it well. His nights are a little more restless with his cough, and we pray he can fight it off.  He continues to put on weight  - up to 8lb 10oz - a good sign that he is using his calories to grow and not just to breathe.  He is still on oxygen and receives all of his feedings through his nasogastric (ng) tube. That tube is of constant concern, as he has managed to pull it out several times, and it is decidedly NOT fun when it goes back in.   

A rare moment without tubes after he pulled out his
feeding tube last Sunday

As far as what life looks like for us right now, we are getting used to navigating the house with cords and tubes and noisy machines (his oxygen concentrator sounds like a snoring dishwasher, but it has become our white noise machine!) following him wherever he goes.  It certainly makes us thankful for our small one-floor home. He doesn't leave the house much, especially not in this cold weather, but we had been trying to get outside for walks using one of the smaller oxygen tanks.  He's still getting Laura's milk through his ng tube every three hours, but it is fortified in order to give him the extra calories he needs to grow.  A wonderful nurse comes to see him two or three times a week.  Laura is getting out of the house for errands, bible study, school events, etc, with the army of helpers that have come to our aid.  She has even been able to go in to work a handful of hours a week.  Michael has been back teaching for a few weeks, and while he loves his job, it is tiring, especially with the extra emotional weight we are carrying.  

We continue to receive meals four times a week or more and are SO grateful!  Grocery shopping, childcare, holding Asher, and errand running, among many other thoughtful acts of service, have absolutely sustained us.  If you are interested in helping in these or other ways, please contact Tim Jones at tim.jones@trinitycville.com or email us directly at thesalvatierras@gmail.com.  We do love visitors, just text or call beforehand to make sure we're there. 

It is still incredibly difficult not knowing how long we will be on this most-challenging road, and we are grateful for a Steadfast God who is loving us through so many dear family, friends and even strangers.  Our plan remains - to enjoy each day that we have with him.  He has given us and so many others an aching reminder of the preciousness of life and the hope that we can bear in it.  But it is exhausting. Some days we feel we are closer to normal, others we are still overwhelmed and fragile. We have talked to Noah and Ethan more about the possibilities and uncertainty of Asher's condition and they always pray that he would get better.  We're glad that they have grown more accustomed to all of his gear and remain devoted and affectionate big brothers. 

Please feel free to share this as needed. Please pray for Asher to keep growing as much as he can. Pray for much grace and patience with each other and with our boys. Pray for blessing upon those who have served our family. Pray that we would find rest and hope in Christ.

With much love,

Michael, Laura, Noah, Ethan, and Asher

Our Asher - Past E-mail updates

November 2, 2014

Dear Friends,

We have been home for a week.  Asher is thankfully doing about as well as he was when we left the hospital. He has been stable here, comfortable, growing, and finding his way into the rhythms of our life at home. He was baptized last Saturday in a beautiful service put together by our church, Trinity Presbyterian, and our friends. We now have a home nurse coming three days a week, house calls from some of our doctors, and a host of generous friends and family visiting.

The big news is that the latest round of genetic tests found the almost certain overall cause of Asher's many problems. They discovered a particular microdeletion in one of his chromosomes, called 15q26 (it's rare enough to not be named after anyone yet).  There are very few identified cases of this deletion, but those in the medical literature match his symptoms well. His situation seems to be particularly severe, as not all children with this condition have such underdeveloped lungs. For those less severe cases, there are varied outcomes, a wide range of physical and cognitive delays that can be expected.  But Asher's lungs are still the primary concern. This does not change anything about his prognosis or our immediate plan for his care; there is no "cure" for a syndrome like this. Yet somehow there is a bit of comfort in understanding what is behind everything, and potentially being able to connect with others in the same situation.

The most difficult thing is learning to tread the line between going back to normal and being ready for the worst. How does so much uncertainty fit into routine?  Michael has tentatively gone back to work, and the boys have kept up their schedules, but of course it is not the same. Our emotions seem to roll in waves, from grief to gratitude.  When other distractions fade away, we are still left scared and weary. We will never be able to say all the thank you's that are deserved. You all are amazing - you remind us that God is still good, and that He has not abandoned us. 

With much love,

Michael, Laura, Noah, Ethan, and Asher

 

October 24, 2014

Friends,

Short update with two items:

1. We arrived home this afternoon. All the care and equipment needed to replicate a hospital room at our house is pretty overwhelming, but it is so good to be back here, with the boys and our whole family. 

2  For those of you who are local, we are having a special baptism service for Asher tomorrow, Saturday October 25, at 2pm.  It will be at Meade Park behind our house, and all are welcome. 

Thanks,

Michael

October 23, 2014

Dear Friends,

So much has happened in the last five days, and I will try to summarize.  In the last update, we were on the way to the PICU, trying to watch closely and understand why Asher was having such labored breathing. He returned to the regular pediatric floor a day later, and has undergone test after test. We have learned a lot, but still have no true answers. While we initially thought that the heart was his great problem, it turns out that the real issue is underdeveloped lungs. A CT scan showed images unlike anything that any of the doctors here have seen. There are so many brilliant people here talking together and trying to figure out what's going on with our boy. They are contacting experts from around the country to get further opinions, but there are no definitive answers - Asher is just unique.
In the meantime, he is stable, getting nourishment and medicine through a feeding tube, and additional oxygen.  We don't know what has caused this abnormal lung development, and the doctors don't have a way to treat it.  What we can do is manage his current condition, help him to grow, pray and hope for the best - for the lung tissue to grow as he does, and surround him with love.
We can do all of that from home, so we are planning to leave the hospital tomorrow. He will still have oxygen, an oxygen monitor and feeding tube at home.  We truly do not know how many days, weeks, months, or more that we have with our son, but God does, and he holds Asher in his hands. We want to make the most of every day, and try to find a new kind of normal at home.
We have not talked to the boys yet about all the possible outcomes for Asher, but they know that he is very sick, and not getting better. I know they will be happy to have him and us home.
Our days here have been filled with so many sweet visitors, prayers, songs, and tears. The amount of love that has surrounded us here has been beyond words.
We'll try to give more updates as we see how things go.
Thank you for everything.
Love,
Michael, Laura, Noah, Ethan and Asher

October 18, 2014

 Friends,
 Thank you for all your prayers and support. We wish we could give some happy news, but we're reeling once again. We brought Asher in to the cardiologist yesterday , because his breathing had been more labored. They did several tests and determined that there was much more going on than we initially thought. There's a lot that we don't know yet, but he was admitted to the hospital last night, and they are keeping a close eye on him for the weekend. We have a great team of doctors and nurses at UVA caring for him, and they are working together to figure out what is causing his breathing difficulty, and what is best for our sweet boy at this point. All the unknown is pretty scary, but we're trying to hope and trust and lean on the Lord and each other. Even as I write this, they're preparing to move him to the Pediatric ICU for more support and monitoring.

Prayers, friends.

 Michael and Laura

Asher's Last Picture before being admitted to the hospital and having tubes on his sweet cheeks

 September 29, 2014

 Dear Family and Friends, 
Thank you so much for all your prayers and love over these last 12 days. We had been waiting until today's appointment to send out an update, and thankfully there is good news! The cardiologist was amazed at Asher's growth and progress in every way. He has gained 10oz in that time, tipping the scales at 5 lb 13 oz, and everything, from his pulse rate to respiration to oxygen saturation, has dramatically improved. We know so many of you have been praying for this, and we can say that God has been gracious, and our boy is growing. What this means is that, incredibly, we are not talking about a timeline for surgery yet. It is still nearly sure that this will need to happen, but every ounce that Asher gains makes him better prepared for it. The doctor told us that if things had stayed as they were at the initial visit, it would be a matter of weeks before the surgery, and now we are talking in months. Incredibly, there is still even the slight chance that he could develop so well that we avoid surgery and wait on the holes in his heart to close on their own. But that is unlikely, and we will wait and see. It all depends on his growth. Everything depends on his continued weight gain and physical development. To this end, we will continue with the rigorous feeding plan that has helped him grow thus far.
 We are honestly pretty exhausted from the time it takes, and all of the meals, visitors, and child care have been and will continue to be a huge help. As long as he continues to gain weight, our next appointment will not be for another month. We cannot thank you enough for all the ways that you have come to immediately and creatively care for us these last couple weeks. Really, you all are incredible. These days have been some of the hardest we have known, and still we have felt such a sense of the Lord's presence, through all of your kindness and generosity. Everything, every word of encouragement and act of love has been meaningful, and often brought us to tears. Please continue to pray for Asher's development, and pray that he would avoid any sickness, even a cold, that could take precious energy away from growing.
 Grace and peace, Michael, Laura, Noah, Ethan, and Asher



 September 19, 2014 

 Dear Family and Friends,
 Please pray with us for our baby boy, Asher. After his one month check-up on Monday when he had not gained much weight, his doctor discovered a heart murmur and sent us to the UVA pediatric cardiology specialists. At our appointment Wednesday, they discovered that Asher has two holes in his heart; one in the wall between the two atrial chambers and one between the two ventricular chambers ("ASD" and "VSD"). This is making his heart work a lot harder to pump oxygenated blood to the rest of his body in an efficient way, thus he is not gaining the weight that he should. The only way for those holes to be fixed is with open-heart surgery. Once his weight is to an appropriate (for him) level, we'll discuss surgery further, but it is likely to happen sooner rather than later since it is inhibiting his ability to grow. To get to that point, Laura is working extra hard at getting him the calories he needs. We are beyond overwhelmed with this news. We are grateful to be here in Charlottesville with such an incredible pediatric medical team, who are so perfectly trained and gifted by God to deal with Asher's condition. Our Savior is beautifully reminding us of His love for us and our family as we receive so much love, care, and support from our family and local community in this scary time and in the weeks ahead. Still, we ache for the healing of our sweet son. There is so much that we don't know. We know that the surgery is considered pretty straight forward, but even that being true - it is open-heart, with all the potential complications that could entail, and it is OUR baby. We are in total shock. Please know that if you respond to this e-mail or reach out to us in some way - it is so welcome and deeply appreciated, but we may not reply at all, or maybe not right away. We are incredibly grateful for all the ways you have already helped us welcome Asher to our family. He is a most treasured gift to us and such a poignant reminder of how deeply God loves us, just because we're His. Please feel free to pass this along to anyone that you think would want to know and pray for us. It's easier to not have to explain everything over and over again, but just be allowed to cry and grieve the loss of the ideal situation that all parents desire - a perfectly healthy child. In this we still hope, because God is present, and in control of every detail of Asher's and our lives. He is already at work in this situation and we have every hope that a year and a half from now, Asher will be running after his big brothers and getting into all their lego creations. We will try to keep updates coming as best we can. We don't even know what we need at this moment, besides prayer, meals, and help with Noah and Ethan. Michael's mother is here with us this weekend. Thank you for your love and care!

Warmly,

Michael, Laura, Noah, Ethan, and Asher


 August 12, 2014

 Dear family and friends,
It is with great rejoicing that we announce the birth of Asher George Salvatierra! He arrived by the grace of God at 12:02am, weighing in at a small but mighty 4 lbs 10 oz. Both he and Laura are healthy and feeling great. Noah and Ethan are completely crazy about their new brother! We are eager for you all to meet Asher (means "happy"), and visitors are welcome at Martha Jefferson hospital tomorrow in the later afternoon. We can't thank you enough for your prayers and support as we gear up for life as a family of five!