• Liz Pappas

Home at Last

Updated: Jul 11, 2019

Charly comes home for the first time.

So many of you have been praying nonstop for a miracle, and we got it this week. For the first 6 weeks of Charly’s life, our only options were to take her off of breathing support or to give her a trach. Andy and I truly felt that neither of those options were what was right for Charly. I was terrified that after she got the g-tube her breathing still wouldn’t improve enough for her to come home. Our only goal was to get Charly out of the hospital without a trach.

“It’s a thin line between depression and grief, and we’re both trying to balance the need to process our emotions without falling into a negative spiral.”

On Tuesday Andy and I were finally able to bring our baby girl home on 1/2 liter per minute of oxygen! One doctor that hadn’t seen her since November said she kept checking the patient name in her file because she couldn’t believe it was Charly! Discharge came so fast we couldn’t even believe it was really happening. After 63 days in the NICU, it felt as though this would never occur. It seems strange to start a new routine that doesn’t involve trekking into downtown Baltimore everyday!

Home Life Bringing her home has brought on a new set of emotions. While it was never easy to leave Charly each night, we could almost pretend she wasn’t sick when we weren’t there. Now, with oxygen tanks, air compressors, feeding pumps, a suction machine, and an ever-alarming pulse oximeter, it’s impossible to forget that our baby is medically needy. The other day I emptied out her dresser and put items aside to donate. Bottles out of which she will never drink, pacifiers she can never suck, clothes that make it difficult to access her g-tube, and cloth diapers that we will be too exhausted to even think about using have been replaced with medical supplies I didn’t even know existed. All the books, toys, and stuffed animals I thought she would love someday suddenly sadden me because it’s uncertain whether those items will ever bring her joy. We find ourselves setting alarms to check her diapers throughout the night since she can’t cry to tell us she’s uncomfortable.  Andy and I cared for Charly as much as we were allowed in the hospital, but it’s still jarring to realize that you’re solely in charge of keeping her airway clear and ensuring that the hole to her stomach doesn’t get infected. Even though we’re so thankful to have her home, we’re still grieving the loss of the joyful newborn experience. Instead of imagining all of the wonderful things that will fill her future, I find myself worried about all the ways she could get sick and when the inevitable will happen. It’s a thin line between depression and grief, and we’re both trying to balance the need to process our emotions without falling into a negative spiral.   Despite the challenges, we’re thankful of every moment we have with Charly. There was a time when bringing her home wasn’t even possible. Now I have an entire month to be with her before going back to work! 

Please keep us in your prayers as we navigate our new lifestyle. Nothing about the past 10 weeks has been easy, and life will likely only get more difficult from here on out. Pray that Andy and I can weather the uncertain future while keeping a positive outlook. We’re trusting that God will continue to guide our decision making. 

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