Goodbyes

It's been a bit emotional of a week for me as we said goodbye to a number of friends we have made on this journey. Two couples moved on to a Level 2 NICU and are going home soon from there and the third couple was from Sunnybrook days and went straight home from there. As you know we also said good bye to the NICU and now 5C as well and it's been a lot to adjust too. We feel like strangers again, don't know these parts of the hospital or the staff and they don't know us. We miss getting to see and talk to our friends and core nurses. And it's been a bit hard for me to see babies that were born at the same time as Grace go home. However, I know we are on a different path and Graces story is uniquely hers and continue to give this sometimes envious and restless spirit to God and trust in His perfect timing!

Some big changes for Grace again! She no longer has an NG tube as she is taking all feeds by bottle and is currently up to 80-100mls every 3 hours orally. Praise God! She also has been completely off of oxygen support for a week now and has done extremely well with this. So well in fact that the doctors decided that they no longer want her oxygen and heartrate monitored 24/7 and turned off her foot probe. This is very scary for me, as she has never not been monitored before, but the nurses check her vitals every 4 hours still. I definitely had an extra hard time leaving her the first night they turned it off!

We try to take her to get some sunshine as much as possible

Currently Grace has been diagnosed with Osteoponia of Prematurity, which means that because she missed her third trimester in utero her bones didn't get the calcium and phosphorus from the placenta that they should have. This causes her bones to be translucent (especially her rib cage) and brittle, and if not addressed can cause stunted growth. So a couple weeks ago when she came off of the TPN (IV nutrients when she reached full feeds) we started high doses of calcium carbonate and sodium phosphate. As well as iron and Vitamin D for her liver. The hope is that in time her body will heal and catch up and she won't need these supplements for life. In the meantime, however, we are being trained on schedule and dosing of giving these meds to Grace several times a day orally. As of now we will be administering them 8 times through the day, spaced out, as some of them interact with eachother or food which can reduce their efficacy and absorption by the body.

Long day. She was toast.

On Monday Grace started a 7 day medication in preparation for her liver test. Originally we tried giving it orally but she hated it she that she actually went into shock a bit, causing her not to breath and heartrate to plummet. Because of this the doctors opted to put an IV into her foot to administer the medication that intravenously. This test medication is called Phenobarbital and is meant to increase bile production so that when they do the HIDA Scan they can see things clearly. It is also used as an anti-seizure medication, but that is not what Grace needs it for thankfully. The reason for this test is because her liver enzyme, AST, ALP, and bilirubin continue to be high and they want to rule out Biliary Atresia, which if caught early can be surgically fixed. The prayer is that she won't require another surgery, but only God knows and we will wait and see 🙏🏼

Bonnet made and gifted to Grace by my aunt Titia

Kait came to visit! "You and me and our friend Steve!"

Abigail and Sophia came for a visit! 🥰 They are technically one birth month apart 😆

Prayer Requests:

• That infection continues to stay away and that Grace's body accepts the Shunt implant.

• For the Liver Test to go well, and that her levels continue to go down.

• That Grace starts to gain weight.

• That we get to go home soon!

• Praises for getting off of oxygen and doing full oral feeds 🙏🏼