Home Sweet Home

I left Pittsburgh today around 11:30 am after Matt and I had a nice brunch together at a café across from the hospital. Typically leaving for home is the worst. Today I was excited. I was not driving home wondering if we would get the call this week, or worrying that Nolan would experience problems due to the VAD. We are on our way to getting our son back. He is going to feel better than he ever has in his life. I am starting to be able to envision him HOME. I have so much to do - it's like bring a baby home for the first time! Matt and I have not really cared for a baby in 4 months! I am nervous!

Nolan had a great night and looked wonderful this morning. I swear every hour he looks better. After I left, Nolan had his draining tubes removed. The only lines he now has is his PICC line and NG tube. He is now on full feeds, so they are going to talk with the transplant doctors and speech about his diet. Currently he is on continuous feeds where he gets 45 ml. an hour (1.5 oz.). What he will transition to next, I believe, is to receive bolus feeds. Bolus feeds is basically a larger amount of feeds and certain times of the day (like feeding a bottle) They will start this in really slow amounts to get his belly used to it. I was thinking about not even starting back on bottles, however, if he is able to use bottles I would rather do that then go home with an NG tube. Nevertheless, something we will be figuring out soon!

After Nolan had his draining tubes removed, he had a visit with physical therapy. Matt said he did amazing sitting and grabbing for his toys. We overall are so pleased when the progress he has made within the last two days. I can't wait to hear how the rest of his week is. I will head back to Pittsburgh on Friday, and my parent will be coming as well. Already looking forward to it!

ALL of this is so unreal. What has happened to us these past 4 months is really too much for me to think about right now. We have a lot to do and prepare for before Nolan gets home. We really do not know what care he will need after he is discharged, so Matt and I are trying to take everything day by day. I have flash backs to the day we stepped into the CICU and not knowing what the future held for Nolan, for Matt or myself. Fast forward 4 months later, I am so grateful - but at the same time still have a lot of sadness and worry. I still those moments of, "is this really our life? How did this happen?" But I am comforted knowing that Nolan has more support and believers than I could ever, EVER imagine. Nolan still has a LONG road ahead of him. We really can't thank everyone enough for all the donations, prayers, letters, notes, gifts...ALL of that has helped get Nolan to where he is today, and will continue to help him throughout his recovery process and life.

I hope to send pictures of Nolan tomorrow with that amazing smile! GOOD NIGHT!

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HAPPY HEART AWARENESS MONTH!