Mother's Day

My first Mother's Day. It's been an equally beautiful and hard day. Mostly because I never expected to get to spend Mother's Day with my daughter earth side. First because I didn't think she would have been born yet and secondly because even though she did come early she almost didn't survive. So every day with her is a miracle!

We had a very busy day. It started with visiting Grace in the morning and then heading to our church, New Life Community Church, in Brampton. There we were able to connect with some lovely older women that have welcomed us so warmly in the church community and share some pictures of Grace with them. They had been wondering where Sam and I had been, and after sharing with them about Grace, they realized it was our daughter that they had been praying for all these months 😂 They were so excited for us and promised to keep praying for all three of us faithfully! Next we went and had lunch at Sam's parents house, followed by a surprise visit to my parents house in Burlington. My mom was pretty shocked as I had made her believe we were spending the day at the hospital. We then finished the day off by going back to the hospital to spend some time with Grace. I then held her for an hour and then we walked back to RMH around 1:30am.

Grace in the morning. She's definitely a soother girl!

Dad teaching Sam how his e-bike works

Dad watching Sam speed off into the distance. 😂

I will say that it was an emotional day at times, as it felt strange to be celebrating mother's day apart from the very child that made me a mother. And I kept just picturing her all alone in the hospital waiting for us to come back. I know that she has lovely nurse there with her too, it's more that my heart just ached to have her with me (and to show her off in person, rather then through pictures). Seems so arbitrary now as I write it down, but it's what I felt 🤷🏼‍♀️ Sometimes it's hard to put it into words that make sense; sometimes I don't even know what I am truly feeling and just feel like a mess! Thank God for His grace, especially in those moments 🙏🏼

This past week my parents came to babysit Grace while Sam and I took the afternoon to celebrate our 2nd year wedding anniversary. During this day my mom actually held her for the first time due to her becoming more alert and therefore more fussy and harder to sooth. Up until now only Sam and I have held her due to her size/fragility, all her infections, surgeries, and preemie compromised immune system. However, she has grown a lot, has been very stable, and is healing well from infections and surgeries; so, we decided it was time for the Grandmas to hold her! Sam's mom held Grace the next day when she visited 🥰

My mom getting to hold Grace for the first time when she babysat for us!

Grace wearing the dress Nana bought

Ammama holding Grace

Grace continues to grow, which has been so amazing to see! Especially when looking back at old pictures and seeing how far she has come. She currently is weighing in at 1956 grams and has more then tripled her birth weight! She is now getting 13mls of breast milk every 2 hours and will continue to increase as long as her Stoma output remains at around 17 ml per kilo. Unfortunately she is dealing with some reflux at the end of her feeds due to her sphincter at the top of her stomach being immature and allowing bile to come up a bit when she is full. I have asked them to extend her feeds over the pump to 45 minutes to give her more time to digest and that seems to be helping some. However she is on a oral medication called Loperamide to help lower her stoma output, but can unfortunately cause worse reflux. Many solutions in the NICU often have a positive and negative effect.

My cousin made her an adorable octopus. Along with 8 more for me to give to other babies in the NICU

She sleeps like me 😆

This week Grace also switched to the Ram CPAP instead of the mask. This is much more comfortable for her and she seems to be tolerating it well! Our hope is that her eye discharge decreases now that there is less air being blown into them constantly. However, she does have her routine eye exam tomorrow which will irritate them and most likely keep the discharge coming 😒 As of now her eyes aren't a concern, as long as they don't regress and the veins don't grow out more then they are already. Currently the eye doctor comes weekly as her eyes are considered "Zone 2 - level 1"

They continue to tap her almost daily, however they don't do the full amount as she is at risk of overtapping. Every 3 days they test the CSF for different things; protein, glucose, bacteria, white blood count, etc. Unfortunately the most recent one grew a culture, which means she could possibly have another brain infection. There is a chance it is just a surface contaminate, but it will take some time to rule that out. I was pretty devastated at first, but God reminded me that just because it doesn't make sense to me, or seems unfair, doesn't mean He isn't still working. What seems messy and heartbreaking to me, is Him working things for my good and His glory. He is working on my heart one trial at a time, to show me how much he loves me, Sam, and Grace. He is showing me that He is the one in control, the one I can trust. And He continues to remain faithfully by our side, one day at a time, on the rollercoaster ride of the NICU (and life). While my flesh cries out, and I lament to Him that I would rather not go through this, that it's too hard and painful, that I can't take it anymore, He whispers quietly that maybe I have put my trust in earthly comforts. That while it's beautiful to love my daughter as much I do, she cannot be placed above Him. He has given Grace to me to care for as best as I can, but beyond that she is His and her life and purpose here on earth is outside of my control. I'm slowly learning to be okay with that. It's a continual surrendering of her and my heart to Him. My prayer is that if nothing else, that this journey would bring all the praise and honour that He deserves. To God be the glory, forever!

Prayer Requests:

• The the CSF culture that grew would be a false one and just a surface contaminate.

• That Graces eyes would progress in the right direction and her eye discharge would decrease.

• That her reflux would improve.

• That her stomach output would decrease, so that they can lower the loperamide dose (which might be causing her reflux.

• For Sam and I as we reach the end of our third month on this journey.

• Our marriage as we navigate the trials of having a sick child and spending every day in a hospital room.

• That we would continue to trust God and His plan, even when we don't understand it from a human perspective.