Heart Warrior

“The LORD is good, a stronghold in the day of trouble; he knows those who take refuge in him.”

Nahum 1:7

Heart Warriors

 

They are born fighters because from the moment they enter this world, they are thrown into the heart of the storm.  Their first breath filling their lungs and asking their hearts to do something they might not be capable of.  Asking their body to fight to survive at only seconds old. 

They don’t know any different.  They don’t know what it is like to not have to fight to live. 

 

They fight for each retracted breath.

They fight for each raspy cry.

They fight for every ounce they consume.

They fight for each milestone achieved.

They fight through withdrawal.

They fight through pain. So much pain.

They fight through medication weans.

They fight through therapies.

They fight through surgeries where their hearts are stopped.

They fight for each day, hour and minute they are here with us.

 

They fight.  Harder than anyone you will ever meet.  As parents of our own little fighter….our own heart warrior…she has been teaching us so much more than we will teach her in this fight for her life. But she isn’t in this fight alone.  God is right there with her, keeping her heart beating, filling her lungs with his breath, giving her the strength and stamina to keep going.  Though she may be in the heart of this storm…she’s in the shelter of her Savior.

Last week Friday, we met with Veya’s team of doctors to discuss the next steps in her care…what their small and long-term goals look like from here on out. 

They told us that they have been pleased with how Veya has been responding to their supportive measures from the last two weeks and the plan now is to slowly begin weaning her

from some of them. (Let me emphasize – VERY SLOWLY wean because this silly little girl is not one for surprises and likes to do things at her own pace, if she notices any sort of change, she will yell it from the roof tops)

The first thing they would like to begin weaning is her nitric oxide which helps with her pulmonary hypertension.  As I’m writing this, they have already started and hope to have her off it by tomorrow.  They have also started with a new medication called sildenafil which will continue to help her with the hypertension and can be used over a longer period of time verses the nitric oxide. 

They have also begun cutting back on her sedation medication called hydromorphe.  This may take some time to get her completely off of it because they use it to help keep her from being irritable. They need her to remain calm so she doesn’t damage her heart further.  She’s also on this sedative because she would be uncomfortable with feeling her PIC line, breathing tube, and pd catheter for her dialysis.

They will continue to run dialysis for her this week and will consider scaling back on it at the beginning of next week to see what her kidneys are able to do on their own. 

The team reassured us that if she has to stay on dialysis permanently, she will still be able to undergo her open heart surgery.  We were very thankful to hear this. 

We learned a little bit more about her pulmonary hypertension from her cardiologist.  Veya has some primary hypertension due to what they suspect to be fetal physiology causes and her lungs.  She also has secondary hypertension which is due to her heart defect.  The team is looking for the primary hypertension to go down and the secondary to go up.  They are optimistic that the primary will decrease and hope to see that happen over the next three to four weeks.  However there is a possibility for chronic hypertension.  If she has a lung problem, like lung disease….she will not be able to have heart surgery at all.  They are watching very closely and will have a very different conversation with us should it be discovered that she has chronic pulmonary hypertension.  We ask for prayers over Veya’s pulmonary hypertension. Please pray with us that the primary resolves and that it does not turn into chronic hypertension so that she may be healthy and strong enough to have her heart repaired if it is the Lord’s will.

We also talked about her heart having troubles with pumping.  The genetic tests have not yet come back from Europe, however the cardiology team now feel like the pumping issue is more so related to her pulmonary hypertension and her poor kidney function.  They feel that if and once the hypertension can resolve….so will the pumping of the heart.  They are not expecting for the genetics test to come back with any answers for them.  They noticed an improvement in the pumping as well once dialysis was started because it removed all fluid retention Veya was having, thus causing stress on her heart.

In four weeks time, cardiology will look at all of this again and consult with Sick Kids about surgery and timing.  Timing is everything.  They need her to be strong enough, healthy enough and big enough to handle the surgery.  Especially because of the one valve repair they need to do which requires them to split it in half and make her two working valves.  Right now she is too young and that valve is very narrow and thin.  If they were to fix the valve early, a second repair will be needed again in six months time. 

Though Veya continues living out the toughest part of her life, fighting constant battles; she never loses her smile and is always touching the hearts of others, especially those that are caring for her.  They just adore her! God has a greater purpose in her life than just healing her & moving on – we know everything she’s going through is leading her to where she is meant to be. Praise be to God!