Somehow ten days have passed since we left the hospital. Time truly does pass differently at home as opposed to the hospital!
Luca continues to amaze us as he seems to be rolling right back to where he was with his physical milestones, both literally and figuratively! Although he remains on sternal precautions meaning he cannot be lifted by his arms or chest/waist, he is showing us that he must be in very little pain since he is loving to roll and play just like he was before his surgery! We are so grateful that he seems to have lost very little ground in this regard!
Feeding wise, we are adjusting to the learning curve that is thickened feeds by bottle and also using the feeding tube. He started out consistently taking two-three ounces of thickened milk by bottle. He normally seemed content after his bottles, but was being given four ounces through his feeding tube at the hospital so we were giving him is final ounce via the tube and planned to keep him on that regime until his follow up appointment, but over the last few days he has started taking his entire four ounces by bottle and hasn't needed to use the tube for feeds at all!
We were also able to switch him back to the European formula that is so much more gentle on his tummy and change out the rice for oatmeal and he is having no more constipation or gas trouble since doing so! The ingredients in the food we eat/feed our children truly make a difference!
It continues to challenge my heart to not be able to nurse him and to shift so many of the ways I have always cared for my babies, but I am reminding myself that it is a small price to pay for his heart to be functioning as it should. I miss our nursing snuggles and the ease of nursing him in the middle of the night, but I am striving to use the nightime feeds as a time of prayer for others as so many have faithfully prayed for us over the last 5 weeks.
He seems to be doing well heart wise with no concerning symptoms, but we will know for sure on tomorrow after his EKG, echocardiogram and cardiologist appointments. Please pray with us for progress in heart function, specifically the level of depression in his left ventricle.
Tomorrow he will also have a weight check, but according to our baby scale which we have been using to track his weight, he is up from 14 pounds 7 ounces when we left the hospital to 15 pounds 1 ounce as of this morning. That amount of gain is consistent with what is expected for his age and we praise the Lord for his growth!
We will also see the speech therapist tomorrow and discuss the removal of the feeding tube and the possibility of another swallow study in the near future.
Please pray that he will be able to nap well and good spirits during such a busy day of back to back appointments. I also need to time his bottles just right so that he isn't hungry during his 45 minute echocardiogram, but ready to eat for his speech appointment following it.
My heart is anxious about returning to the hospital. I think I am beginning to process the traumatic events of October 18-20 and returning there for what is expected to be a day of outpatient services is a bit overwhelming considering we went to the hospital that night thinking we'd only be there a few hours and that turned into 31 days.
Being home has been so sweet, but also an adjustment for everyone after such a long time away from our rhythm and routine. We are slowly settling back in and pray that tomorrow passed quickly, we receive a good report and that we will be home tomorrow evening with no complications!
We are so very grateful for our smiley baby boy who is truly such a light in our home. We can't help but smother him in kisses and continue to praise the Lord for his goodness in sparing Luca's life and giving us the opportunity to see him learn and grow.
Thank you all again for walking this road with us.
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