Friday, April 22

So, all of the progress with Walker’s feeding and clamping has brought us to the point where Walker is almost ready to go HOME! Can you even believe it!? As of today, the plan is for Walker to be discharged from SickKids on Tuesday, April 26.

Since telling the big kids that Walker is coming home, Jordynn has been randomly coming up to Andrew or I to give us hugs and tell us how happy she is. Yesterday she was in the middle of playing quietly by herself when she stopped, went up to Andrew, and said, “I can’t wait until Walker comes home, and it’s not so far away! Only 5 more sleeps! I am so proud of you guys for telling the nurses to make Walker better. Thank you! Thank you! Thank you!” And then she gave Andrew the hugest hug. Last night when I put her to bed she said, “After this sleep when I wake up there is only 4 more sleeps until Walker is coming to our house with us. I am so excited! I love you, Mommy!”

It’s been hard to try to build a bond between Walker and his older siblings in our situation, and I have felt so much sadness over the fact that it has been half a year and they’ve spent so little time with him. I have worried that they don’t feel connected to him and grieved that they’ve missed out on so much of his “baby stage.” I have worried over the huge adjustments they have had to make living away from home and being carted from one sleepover to the next, over the toll all of this has taken on them emotionally, over how hard their lives have been for the past 6 months, too. So, hearing Jordynn’s pure joy and excitement about her baby brother coming home just makes my heart burst. I am so proud of Jordynn and Easton and how they have faced all the challenges of the past 6 months. They are going to be okay. We are going to be okay. We are all ready to go home and have our whole family together.

After all this time and all that Walker has been through, it’s truly hard to believe we have finally made it to this point. It’s honestly hard to process that we are here. There are so many emotions. I am thrilled and excited and beyond thankful that we have made it, but there is also fear surrounding this very big step. My stomach turns in knots when I think about Tuesday, to be honest, and I have been on edge all week that something is going to happen before then and they are going to tell us Walker can’t go home after all.

I fully trust that this is God’s plan and it has happened in His timing. God’s hands have been working in every single moment of this journey so far and we know He will continue to be faithful. The nurses and doctors have cared for Walker so diligently and know him so well, and I know they would not be sending us home if they didn’t feel Walker was ready and that he would be safe at home. Knowing all of this, though, does not take away the fear that comes with having to take on all of Walker’s care ourselves.

As well as Walker is doing, he is still a sick little boy. Since being clamped he has started gaining weight much better, but despite how sweet and chubby he looks, he is only in the 10th percentile for weight compared to other 4-month-old (his “corrected age”) babies. He requires tube feeding and venting, various medications to be administered multiple times a day, help with his retching and reflux, and he still has a serious cardiac defect that could cause him to go into heart failure. As hard as living in the hospital has been, there has been comfort in knowing that if anything happens to Walker, the nurses and doctors will step in and help. As long as we are here, it is their responsibility to keep him safe. When Walker comes home, that responsibility shifts completely to Andrew and I, and that feels a little bit scary. We have been here with Walker and have seen for ourselves that he is stable, but the thought of having him home and caring for him completely on our own is a bit intimidating. We trust that God will continue to protect Walker and that He will guide us as we care for him. The first little while will be a huge transition and learning curve for us.

Today, as I sit here and write this blog, Andrew and I are at the hospital together doing “care by parent” for a full 24 hours. Before sending patients like Walker home, the hospital wants to be sure that parents are able to do everything to care for their baby at home on their own. So, we have been here all day with Walker and will be sleeping overnight at the hospital with him. This will be the first time in 6 months that we have been with him through the night. We have been doing everything for Walker ourselves today-- administering his medications, warming his milk, running his feeds, flushing his tubes, scheduling and timing everything, plus all the regular baby stuff. To be honest it feels pretty great to finally feel like we are the ones taking care of our own baby. It has also been really helpful to get a feel for what a day at home will be like for us. I definitely needed to today to help ease some of my worries about going home. I’m not going to lie, we are exhausted after just today, and it’s hard to imagine how we will do this everyday while also taking care of two other little ones. We know, though, that God will make a way. We feel capable and ready to take on this next challenge.

Thank you all for continuing to walk alongside us on this journey. Your prayers and support have made a huge difference in our lives. We covet your prayers for our family over the next while.

Please pray that the next few days at the hospital go smoothly. Pray that all the pieces fall into place and we are able to go home as scheduled on Tuesday.

Pray that Walker gets accepted to the Complex Care Team at South Lake so that we can feel confident that he will have excellent care closer to home when needed. So far, we have not been able to find a pediatrician close to home for him. His amazing nurse practitioner is working hard to pull some strings and get us into the program at South Lake.

Pray that Walker will stay healthy and continue to do well, especially as we go home. Pray for God’s protection over his life.

Pray that he adjusts to being clamped all the time and his reflux settles down again. He’s been “throwing up” more the past couple of days and it’s hard on him.

Pray that Walker’s heart stays strong as he waits for his major cardiac surgery. We are not sure how long we will be home before we have to come back to the hospital for his surgery, but we trust that it will all happen in God’s perfect timing.

Pray that he passes his car seat test tomorrow. Before we can go home, Walker’s heart rate, breathing, and oxygen levels need to remain stable for 90 minutes while he is in his car seat.

Pray for our family as we transition to life at home together. Pray that we find a routine that works for us as we care for Walker, Jordynn, and Easton.

Pray for wisdom and confidence for Andrew and I as we take over Walker’s care. Pray for strength and energy on days that are difficult and tiring.