The last month has been a beautiful blur.
Felicity came home on April 10th, after making a truly amazing turn for the better and surprising all of us with how quickly she was able to come off of several of her iv medications, while handling more and more tasks on her own, like breathing, and taking all of her feeds by mouth.
In mid-March, it seemed like the doctors were expecting Felicity to make very slow progress. We were encouraged that their outlook was positive, but knew that my time off from work was being used up as we waited for Felicity to be able to come home, so we decided that I should go back to work.
The weekend before I went back to work, Felicity’s medications were adjusted and she did not respond well. She went into an adrenal crisis and it took a few days for her to get back to her normal self. With that, it only further confirmed what we were expecting... that there would be several more weeks of slow but steady gains.
So you can imagine how stunned we all were (her medical team included) that with each passing day Felicity started to get significantly better and better, leading to the news that was music to our ears, but that we could hardly believe... Felicity would be coming home on the 10th!
We made final preparations at home, got trained on how to give her all of her medications and took the required infant CPR class at the hospital. The day she was set to be discharged, when we walked into the NICU, it was honestly like a scene from a movie. You know, when the hero is having a dream about winning the big game, and how afterwards they walk into a crowd full of people where everyone stops what they’re doing and turns as they enter and just smiles at them, and pats them on the back as the slow clap begins? IT REALLY FELT LIKE THAT. All of the doctors and nurses turned and watched us as we walked to the very last room in the NICU where Felicity was having her morning nap waiting for us to bring her home. Some smiled at us, patted us on the back, or shook our hands. The atmosphere was rich with joyful expectation.
Wow, I wasn’t really thinking of the weight of those words as I typed them, but as soon as I saw them written out in front of me, I remembered an encouraging promise from scripture that I first read around the time that I found out I was pregnant last summer:
That is why waiting does not diminish us, any more than waiting diminishes a pregnant mother. We are enlarged in the waiting. We, of course, don’t see what is enlarging us. But the longer we wait, the larger we become, and the more joyful our expectancy. (Romans 8:24-25 The Message)
I am truly having this full circle “Aha!” moment right now in the midst of typing this blog, so I feel there is more I must share. I had been reading Romans 8, and decided to read a few different versions of it, and that last bit that I made bold above really stood out to me at the time that I read it. After everything we experienced with Lucie, I was understandably both excited to be pregnant again, but also filled with concerns and worries. The last part of this verse kind of became my mantra anytime I worried, helping me to turn my anxieties into feeling assured that after all of this waiting was done, and after all of the unknown had passed, we could expect joy, and even experience joy in the waiting somehow. It carried on and continued to give me peace while I was hospitalized on bedrest, and then again as Felicity faced her own course in the NICU. In small silent moments, I would remember the encouragement and think, Lord, help us in the waiting, help me be joyfully expectant.
I would think about that phrase several times throughout my time in the hospital, when I was going to sleep alone in my hospital room, or experiencing a wave of painful contractions. I would think about that phrase when we were waiting on tests and answers for Felicity as her condition slipped further and further into critical territory. And now, it’s crazy to me to see how quickly I forget. Over the past month that Felicity has been home, in the midst of adjusting to her schedule and needs, and also wrapping up my shorter than expected return to work, (where I decided to remain until the end of April), I really didn’t realize how that prayer and that promise had been fulfilled until I was just now typing out what it felt like the day that we got to bring Felicity home. We truly felt a surge of joyful expectation, and I think all of those around us felt it too. Especially the doctors and nurses who saw us day to day.
Now, as I just went back again to find the verse, I read on...
Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good. (Romans 8:26-30 The Message)
I can’t begin to tell you how many times we felt tired in the waiting. The agony, the tears, the silence, the heaviness. The angrily and desperately cried out prayers asking, Why, God!? Why must I sleep in a hospital alone these five long weeks? And then after all of that, why is Felicity now going through this? Why all of this difficulty and pain? In the midst of all of that it can be so hard to trust God and to be thankful and to feel joy. But there is no denying that God was still with us. He never abandoned us, and when we did not know what to say, or what to think, or what to pray, His comforting presence was still evident. I know it will still take time to fully digest the many ways that this experience has impacted our family. I grieve the loss of yet again not having a full term pregnancy. I wish this season hadn’t been so hard. It humbled me time after time. So many people reached out encouraging us and telling me how strong I was through it. In reality, I’m not strong at all, and I think the need to “stay strong” and to minimize or remove the pain that comes with life, adds even more pressure to the healing and growing process. In some sort of backwards way, acknowledging that I wasn’t strong, gave me strength. Isn’t that so like God? Strength to face the next day’s uncertainties, strength to pray for joy in the waiting, strength to share this with all of you and be vulnerable.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. (2 Corinthians 12:9-10, ESV)
Do I believe that God made mountains move and miracles happen to protect our little girl and turn around some severely scary days into tremendous, unprecedented improvement?
Absolutely. I do.
So, yes, we are thrilled beyond words that Felicity is home. That is HUGE! And worthy of praise. Countless times a day, I hold onto that little girl and just squeal in delight. THANK YOU LORD, that she is HOME! (in a very high pitched voice, too, lol.) At the same time, we also still recognize that there is still so much from the past season that we are all just beginning to process, and just because she is home, it doesn’t mean the pain is suddenly erased. As we look to the future, we know that the waiting will continue, since we don’t know when and if additional surgery will be needed to repair her heart valves. It could be in a year or two, and it could be not at all (small chance, but wouldn’t that be amazing?). So for now, I can look again at what we do know, and what I am so thankful to have been reminded of as I typed my thoughts out for this blog update, and that is: that in the waiting, through the waiting and because of the waiting, we can expect JOY.
I am hopeful that as you have come alongside of us in this season, you have been able to see God’s hand at work in our lives. I hope you can see that it continues each day, He sustained us through the pain and is with us as we move forward again. And most of all I hope that because of all of this you can see Him in your life too. Happy to chat more about our experiences up to this point if you ever want to. Thank you for being there for us.
With all our love,
Sharing pictures from the past month as well if you’d like to see.