Ommaya Reservoir

It's been a good week so far! Sam and I have gotten to spend a lot of time with Grace, and we have slowly started to learn more things as we get to handle her more. Here are all the things we can now do; clean her eyes and mouth, give sponge bath, check her temperature, massage her face and ears, empty her colostomy bag, adjust her oxygen saturation probe, help with wound care/bandage changes, and changer her diaper. I am sure this list will grow as she gets bigger and stronger! It's hard to believe that she is 32 weeks gestation, 8 weeks old, today. We are officially at the half way point from when she was born to her due date!

Our door at RMCH

Grace had been low on hemoglobin (hovering around 103) and as of Monday needed another transfusion, however, it was being pushed because her team wanted to coordinate it with her surgery and it wasn't necessarily an emergency. However, the surgery did not happen this week as we had hoped so we pushed her nurse practitioner to test her levels again to make sure she was still okay to wait. We had been noticing her becoming more pale all week, sleepy, not very responsive, and rarely opening her eyes. Sure enough when they checked it again she was at 87. So, she got her 7th blood transfusion on Thursday morning! The nurses commented that they didn't realize how pale she was, in comparison to the colour she got back after the transfusion, because she had matched my skin tone 😂

Sam did skin to skin this week! Notice how pale she is? She got her transfusion shortly after...

Based off of Graces head ultrasound this past Thursday, the Neuro team doesn't think she needs a tap. Unless she starts to have deep and extended Bratties and Destats (drops in heard rate and oxygen saturation) they won't tap this weekend. The plan is then to have the procedure for the "Ommaya Reservoir" on Monday of this coming week! Our prayer is that she doesn't end up needing a tap before then. We don't know when the surgery will take place on Monday, but it has been confirmed that she is going into the OR on that day. Now we are just waiting for the Neuro doctor to come by to explain the procedure, it's risks, and then we can sign the consent forms.

Mask change!

Sam and I spent a majority of our day on Friday packing and purging at our apartment in preparation for the slow move (family is helping a little at a time to get stuff donated, tossed, or moved). It was more of an emotional day then I thought it would be, as it was only 8 months ago that we moved to Caledon, and at that time I thought we would stay put for a bit. It's crazy how quickly life can change, and end up being nothing like we expect! But I have faith that God is writing a far better story then I could have ever imagined ❤️ We also moved the cats to live in the basement apartment of his parents house in Brampton. We hope they will be less lonely there and become acquainted with his family quickly!

Packing up the apartment

Exploring the new area

We are so thankful for all God is doing in our lives, and while it hasn't been easy I know he is good and his plan is for our good. Even if it doesn't feel good as we live through the mess, we trust that if it isn't good yet then He isn't finished. This week we remember Jesus' sacrifice on the cross for our sins. He conquered sin and death for us, granting us the free gift of grace. Every day we are called to surrender our lives to Him, laying our burdens down and trusting that he will give us strength for today and new hope for tomorrow. To celebrate this Sam and I will be attending a chapel service at SickKids tomorrow and then my entire family will be joining us for lunch at RMCH! I am very excited 😊

Sam held Grace today

Thanksgivings:

• Booked surgery! Happening much sooner then the projected 6 week wait.

• Living so close to the hospital.

• Getting to hold Grace more as she has been very stable.

• Sunshine and warmer days.

• Family and friends showing up and helping us.

  
  

Prayer Requests:

• Grace's Ommaya procedure goes well and is successful.

• Continued trust in God no matter whatever comes our way.

• That nerves may subside and be replaced by peace and confidence, know that God has Grace in the palm of His hand.

• Patience with hospital nurses and doctors

• Grace for eachother as Sam and I do long days at the hospital while also trying to 'adult' still and get tasks outside of hospital life done.

• Perseverance with the move.