40 Days & 40 Nights

It's hard to believe that we have been on this journey and with Grace in the hospital for 40 days and 40 nights. Jesus spent this long in the desert fasting and praying, oh how long that time must have felt. This period of fasting and temptation is seen as a time of spiritual preparation for Jesus's future ministry, where he would face similar challenges and temptations. This makes me think of our current journey, and the correlation between the two, not that I have done it at all like Jesus did (perfectly) as he is God, but the LORD was/is with both of us. And this time I have been given is for my good and will be used prepare me, if I am willing to lean on him and listen to his purpose for my life. Although it is very uncomfortable and painful, God is allowing me to grow in ways I never imagined. Sam and I both. It's both humbling and encouraging!

A quick update on our lives this past week. Sam and I have gotten off the wait-list from the Ronald McDonald House and have now moved it! It's amazing being only an 8 minute walk from Grace. Although we miss our home and cats it's nice having a bit more of a permanent home base. We are so thankful that God answered our prayers in this way and continues to provide for our physical needs. We have also officially given our notice at our apartment in Caledon and will be moved out of there by the end of April, and have our things stored away until we can take Grace home from Sick Kids!

Grace getting fitted with her new hat that will help hold the CPAP in place.

It's been another busy few days at Sick Kids for Grace! As you can see in the picture Grace has been extubated and is now back on the CPAP and is doing great with it! It's definitely an adjustment for her little lungs as she now has to do all the work, but it's much better for her lung development. We had started a steroid protocol at Sunnybrook which is meant to reduce inflammation and help the lungs heal better over time, however, Sick Kids does not practice this and Grace is no longer able to have the steroid administered to her, which is disappointing. We are thankful to be at Sick Kids because they do life saving surgeries and have the best surgeons, but some days we miss Sunnybrook as they are world renowned for their NICU and care of Micro-preemies.

Grace right after coming back from her MRI with her protective ear gear on.

She has also finished her round of antibiotics for the NEC infection she had in her stomach. Unfortunately, however, she needs to continue the antibiotics for her CoNs Meningitis as it doesn't seem to be clearing. The results from the blood work and echogram came back clear, but the MRI showed that there appears to be a cluster of bacteria in her brain. Around the same place that her clot is that caused her brain to be unable to drain in the first place. This has caused more damage to her brain, but we continue to hold onto hope that the Lord will work miracles on/in her life as she grows.

The Neuro team came this morning Wednesday) to do another brain tap as she was having repeated 'Bratties' (drops in heart rate) overnight, which is caused by the fluid putting pressure on her brain. They removed access CSF from her left ventricle, which will now also be tested to see if a bacterial culture will grow (we have to wait 48 hours for the results). If it does then the Infectious Disease team has recommended a secondary antibiotic they can introduce on top of the current one to try and kill the bacteria. We try not to do what ifs over here and get to far ahead of ourselves; at this point we just pray that either the bacteria is gone or the secondary antibiotic works. Please pray for a miracle and healing from this Meningitis, and that the doctors can figure out a plan of action to help our girl.

On a positive note Grace received her fifth blood transfusion two days ago and is looking much better. A bit more spunky and is definitely looking more like herself with her darker pink colour coming back. Unfortunately micro preemie babies often need multiple transfusion as the doctors are constantly taking blood from them to test their levels and such. It's a vicious cycle!

I also got to hold Grace on Sunday swaddled in my arms which was amazing as I got to stare into her sweet face. And then today I was able to do a modified skin to skin with her, which is the first time since we left Sunnybrook over two weeks ago! What a blessing that was 💕

It's also been such a blessing having visitors, and loved ones who come just to support Sam and I, pray with us, and show Christ's love in whatever way they can. God has been showing us that he will take care of us, through them, living as the hands and feet of Jesus!

Please pray that Grace can heal from the Meningitis and continues to gain weight. Please pray for me that I can focus on today and worry less about what the future holds. Please pray for Sam that he can continue to trust God's hand in all this, no matter what God's will is. For both of us we ask for strength to keep showing up in obedience and doing what the Lord has set before is each new day to do.