God is Sustaining Us

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 

2 Corinthians 12:9-10

 Let’s do a little fast forwarding…. it’s now December 27^th and I’m sitting here just trying to wrap my head around the fact that our baby girl has been in the NICU for the past 24 days!  Hospital time, what a mystery: it literally passes in the blink of an eye but sits at a standstill, all at the same time and I’m sure anyone who has had to spend any significant time in a hospital would agree with us. 

 The first week in NICU was the best week Veya has had.  She had graduated from level 3 down to level 2 in the NICU which surprised all of us and felt like a huge relief! Unfortunately, she didn’t get to spend too much time in level 2 before having to move back into the more critical/intensive care side. 

 In order to get a clear image of Veya’s heart and how it was functioning for her, the neonatal team needed to wait for two things to happen.  One being a certain valve needed to close in her heart and two being the high pressure in her lungs needed to come down. Once this happened, we started to see the symptoms from her AVSD.  She began to struggle with her breathing, she was becoming very fatigued from having to work so hard with her breathing, and her lungs were beginning to fill with fluid becoming wetter with each passing day.  Since they had taken her off the CPAP machine, they decided to put her on low flow oxygen to assist her with her breathing.  After a few days on low flow, they had to move her up onto high flow oxygen.  When that was still not helping, she was moved back onto CPAP and continues to receive respiratory support from that as of today.  She does not love her CPAP, and often you’ll find her hands grabbing at it. Since she is back on CPAP this also means that she can no longer practice oral feeding (no more nursing and no bottle feeding, strictly tube feeding) This was disappointing because she has been the easiest one for me to nurse (our other three kids had some serious tongue + lip tie issues) Veya will now work with an Occupational Therapist to encourage her to keep practicing by using a pacifier to suck on and small syringes to coat the inside of her cheeks with breastmilk.  The hope is to keep feeding a pleasurable experience for her, so she doesn’t develop an aversion to oral feeding. 

She was also started on a diuretic called Lassix which works by acting on Veya’s kidneys to increase the flow of urine to remove excessive fluid accumulation (which is in and around her lungs). After a few days on it, cardiology decided to add two additional diuretics called

Hydrochlorothiazide and Spironolactone.  Having these three seems to be helping a bit better than when she was just on Lassix.  Though their goal is to be able to stop giving Lassix and just keep her on the other two. From our understanding Lassix is not a diuretic that is great for long term use. 

The Neonatal team also informed us that on one of her scans they found a clot in her abdomen area.  They will keep monitoring this clot as it can be quite common for babies in general to have these types of clots and can pass them on their own.  If this clot doesn’t pass for Veya then the team will intervene and help remove it.  At this point in time, they do not seem overly concerned about it and we have been reassured that it’s not something that is causing her any pain. 

This past Friday (December 22^nd) we would say was the hardest day for Veya. It really concerned the team.  An echo was performed and showed them that both the left and right ventricles were pumping very slowly.  Not only has Veya been in moderate respiratory distress the last number of days but now she was really struggling with a weak heart.  We could really see this because her colour was completely gone.  She was very pale and clammy.  Which again are all signs of her heart defect.  Speaking to the doctor that was on in the evening, he explained that over the next 48 hours they were going to continue to observe her and put together a preliminary report to send off to the Cardiology Team over at Toronto Sick Kids (this is where Veya will have her open surgery when it is time)

Many people have been asking us when Veya will have her surgery, but it is still very much up in the air.  There are many variables at play here.  They need to measure the size of the hole in the bottom of her heart.  If it’s too large it would prompt them to do surgery sooner than later.  If the valves in the middle of her heart start leaking too much then we would be looking at surgery again sooner than later.  However then there are all the surprises that could come up along the way as we await a surgery date such as her ventricles not pumping strong.  If they continue this way then they will plan accordingly because they don’t want it to cause any heart damage.  Lastly, if they are not able to ween her off CPAP in the next while or if she grows dependent on any sort of respiratory support, then they will again perform the surgery earlier. 

Each day that they can get from her before having to intervene is crucial.  There is a big difference when working on a baby’s heart as a newborn vs when they are six months old.  If she has this surgery before she is six months old, we have been told to expect her to spend a couple of months recovering in the cardiac ICU. A lot of times when a young baby is put on a heart bypass machine their blood vessels also stop pumping.  So when they come off the bypass after surgery their blood vessels need help to “get going” because they “forget” to start pumping again which adds to their recovery time.  As it sits right now, Veya should only need one surgery for her AVSD… but if her surgery before she is six months, we might be looking at multiple surgeries if she can’t handle the one full repair.

While this has been a lot to process, by God’s grace the good days are far more frequent that the bad days for Jer + I (even though we do have days in the valley.)  We were just saying the other day that we feel like we have been in a state of fight or flight. It’s like we are always on high alert for a change in Veya’s condition.  But you know what?  God is good! God is sustaining us! And He has been so faithful to us! We continue to be amazed and thankful for the medical team and all the equipment which God has allowed and provided to take care of her. Our trust is completely in God and we pray that He will continue to help us take things one day at a time with our sweet baby girl.