God Did It!

When life feels crippling, chaotic, and crushing… it’s easy to believe the lie that we are the ones who hold the responsibility to come up with the answers and solutions that are needed.

We try to fix the distance in that relationship.

We go back and forth on whether we should quit or stay in our job.

We fill our calendars attempting to juggle everything in the schedule.

We try to make peace and resolve all the family drama.

(We try to make the best healthcare decisions for our medically complex child…)

 We strategize and plan. We make appointments, attempt conversations, and get out our calendars, but in all our attempts we still feel anxious it might not be the best solution or maybe we have not done enough. (Proverbs31ministries)

Reading Isaiah 26:3 it reminds us, “You keep him in perfect peace whose mind is stayed on you, because he trusts in you.”

So, while we felt like we were in deep waters the last couple of weeks with Veya and were asked to consider making some very difficult decisions for her life because her team didn’t think she would pull through the night on March 14^th… we clung to God’s promises that He has perfect peace for us when we keep our mind on him and trust he has a way for us as we seek Him.  Veya’s life is not in our hands, it’s entirely in God’s hands and has been from the very beginning and the past two weeks have proven that yet again!  

There are big praises to celebrate below!

On Friday, March 15^th, Veya was taken back to the heart cath lab where the team went in to close off her PDA (patent ductus arteriosus) 

Normally this closes on its own in all newborns shortly after they are born, however Veya’s did not. Sometimes it helps to have this remain open in babies that have cardiac defects like Veya because it helps with high pressures that the heart and lungs experience from the defect. For Veya it was better to close it off because it was affecting the way her blood flowed to her lungs.  The cardiologist told us that they really underestimated the size of her PDA opening, and that it was rather large which explains why she was receiving over one third of her body’s blood over circulating into her lungs! The medication she was on to treat the pulmonary hypertension helps dilute the blood vessels which in turn caused so much blood to move faster through this PDA opening.  Essentially what was happening to Veya, was that she was drowning in her own blood in her lungs her team said. 

With Veya it’s very tricky because she has her unrepaired cardiac defect (AVSD), the pulmonary hypertension, and she has the hemorrhaging in her lungs… but it turns into a vicious cycle for the team when they try to treat one of these it makes the other two issues angry and then it gets out of control.  Thankfully once they were able to close off the PDA, the team was able to take better control of the situation Veya was in. 

After the closure, the team continued to wean Veya fully off one of her pulmonary hypertension medications – Flolan.  They reassessed things a few days later once the hemorrhaging subsided, and began to wean down her nitric oxide support.  We are so happy to share that after being on it for 63 days, with 13 unsuccessful attempts, Veya is now free from her Nitric Oxide support!  A real pinch me moment!  We still can’t believe it and praise our Heavenly Father for this incredible step! Her team is so thrilled as are we!

In the words of her cardiologist “Veya continues to make fantastic progress and is responding in the ways we would expect her too now” This was so wonderful to hear!

While her lungs are quite damaged from being intubated for the past three months, having pneumonia and then the hemorrhaging, the team has decided to hold off for now on her full heart repair and allow her lungs to heal and grow stronger.  The loose plans are to potentially bring her back to the heart cath lab and perform another procedure that will help restrict the blood flow better and continue to support her heart until the big day.

In the meantime, the team will continue to provide physiotherapy for her lungs while weaning down her oxygen support so that one day she can be extubated.  They will also continue to chip away lowering her pain and sedation medications because she is still on very high doses with three of them and it will take some time to diminish them. 

They have also consulted with the GI team (Gastroenterologists) because it was discovered on a recent ultrasound that Veya has kidney stones and gallstones and that her liver enzymes are struggling a little bit.  Thankfully they don’t seem to be “in the way” of anything and they are not negatively affecting her urine output and things like that.  It sounds like this all may have occurred because of the medications she has been on for so long and the high dosing amounts.  Her kidneys remain functioning well and there has been no need to consider putting her back on dialysis. Praise the Lord! 

While we aren’t necessarily through the hardest part yet as we wait for her open-heart surgery, we are learning to feel true joy in the seasons of waiting. Life is fragile and such a gift.  We will continue to enjoy every moment we are given with Veya and acknowledge her miracle continues to be in motion. We are so grateful to God and the amazing staff surrounding her 24/7. For your prayers. People we don’t even know, people in our churches, children in their classrooms, families at home.  It’s so powerful and such a testament of what can happen when God’s people unite. We just needed to say thank you again.  A huge, humble, honored thank you!