Day 73 - 34 and 2 days gestation

It's been an eventful week! A lot of hard things, but then also some really great things. And through it all we can see God's hand, carrying us into and through each new day🙏🏼

Grace's feeds have been slowly going up as she shows the doctors that she is tolerating the volumes and not just dumping it straight out of her stoma. She is currently at 11ml every 2 hours, with the rest of her liquids and nutrients coming through her piccline. They supplement with a yellow liquid called TPN which has all her minerals and vitamins, as well as another line that gives her lipids. For her current weight of 1.6kg she should be at 20ml Q2. Because she has been eating so little, and I pump alot, SickKids has just informed me that I have reached their capacity of 50 liters in their freezer, so I have started the process of donating it to the Milk Bank, run out of Mount Sinai Hospital, which will go to other preemie babies! I will start by donating 20 liters to make more room, and then as needed moving forward. While it makes me sad Grace has not been able to eat as much as we would hope, or take it directly from me, I am thankful the Lord has given me the opportunity to help out other babies and their momma's ❤️

Grace will go up on feeds when her stoma output is good and shows she is absorbing what they are giving her. In order to help with this she is recieved Loperamide (Imodium) orally every 8 hrs, which removes the liquid, and does what the large intestines normally do. If they didn't do this she would become dehydrated.

This weekend Sam and I learned and helped change Grace's colostomy bag, which was interesting to say the least 😂 The hope is that 8 to 12 weeks after her stoma surgery (March 22) and once she weighs at least 2kg she can have reattachment surgery.

Grace had another tap on Wednesday after her ultrasound and they withheld it on Thursday as they don't want to risk overtapping. She then had an ultrasound on Friday, and it was decided she would need another one to remove the excess Cerebrospinal Fluid (CSF). They had hoped she could go the weekend without but on Sunday she started showing clinical signs of being full so they tapped again. And then today after her ultrasound they tapped again. This will most likely be the normal routine for the next while, either until her brain learns to reabsorb the CSF or she gets a permanent shunt. The rough plan is that she would get the shunt after a successful stoma reversal surgery and once she weighs at least 3kg.

After Grace received her tap on Friday afternoon we suddenly got moved to a different room in the NICU as they needed room our spot in room 11 for a two new admissions. We got shifted to room 3 unexpectedly and we're tucked in a very dark and small corner at first which was upsetting (it's crazy how quickly you take comfort in routine, familiarity, and your space, when so much of the rest of your life feels out of control and chaotic). But God provided and within a day of moving there we were shifted to a spot by the window and the outside world. It has been lovely for sunlight and people watching 😆

First spot in room 3 (that's our entire square, with no room on the other side of the incubator).

Our new spot by the window and room on both sides of the incubator!

Sam and I finally wrapped up moving out of our apartment this past Saturday with the help of a few family members. It was a bittersweet day, as this is not what we envisioned for our life and thought we would be in Caledon for at least a year or two. However, it felt good to get it over with and check if off our list of things to do. As hard as it has been to let some dreams go, we trust that they will be replaced by new dreams. Through it all we know God remains faithful, and all these goodbyes and changes will be used for our good 🙏🏼

We purged about 1/2 of our belongings before putting it into storage.

A beloved painting left behind for the next tenants

Saying goodbye to the super comfy couch that my first roommate Samantha and I recieved from our coworker Patti Post. It then went on to have 2 more roommates and a husband also find comfort on it 🥰😂

When we returned to the hospital Saturday night we discovered that the RT team had decided to try Grace in the Ram (tube oxygen in the nose) and get rid of her CPAP mask! We were quite surprised, but also excited to see it. It has also been decided that because she is over 34 weeks gestation and can now regulate her own body temperature, handle more light and noise, that her incubator top will now be lifted. It's makes me a bit nervous though as it feels like we just removed her little protective bubble, but they assure me it is more developmental friendly!

Unfortunately Grace had a rough Sunday and was having a number of Bratties and Destats despite having her on higher oxygen settings then normal. So after receiving her tap and not stabilizing to much Sam and I pushed for them to test her hemoglobin. It came back at 95 and it was decided that she needed her 8th blood transfusion. They also decided to switch Grace back to the mask and off the Ram as they thought she seemed to be working to hard to keep her oxygen up with it. We want her to put her energy into growing, not huffing and puffing, so we will revisit trying it again at a later date when she is more ready. After her transfusion she perked right up and got her colour back. As of today she was back to her feisty self and let the world know she was there with her ever growing flailing and strong cries. Such a blessing for us to see, although I am sure it's something often taken for granted with newborns!

Finger to finger as she recieved her blood transfusion

Mask on and pink colour back!

Prayer Requests:

• For Grace's eye inflammation to go down (it seems to irritate her).

• Her lungs to grow strong

• Continue to tolerate and increase her milk

• No infections that hinder her progress

• Sam and I as we celebrate our 2 year anniversary tomorrow!