I had intended to post an update after we were home from the hospital *last year*, but that obviously didn't happen. It was a bit of a shock to all of us to be discharged from the hospital so quickly, and then life just kept coming.
Those first several weeks at home were really hard. Ramona had no issues with pain whatsoever, which was such a blessing and answer to prayer. However, itching around her incision, which hadn't even been on our radar, ended up being a big issue. Between major lack of sleep (due to itchiness) and her little body trying to heal and figure itself back out, Ramona was just not herself at all for several weeks. And, really, we were all out-of-sorts and barely keeping our heads above water.
Besides several post-op follow-up appointments, Ramona was referred for cardiac rehab, which had us going up to Chicago at least once a week until the end of the year.
The start of the new year really felt like the beginning of a new start. Ramona was feeling good and back to her old wise cracks, and we were finally getting our bearings. We were back into our regular routines, but were also catching up from 6 months of our lives being entirely disheveled.
When summer came, it was a breath of fresh air. With the hustle of homeschool behind us, I felt like I finally caught my breath. The long, slow days together were just what we needed. And, with Ramona being stronger and having more endurance than she did before her surgery (praise the Lord!), she has been able to ride her bike and play with her siblings more than she could before.
We did run into one hiccup a few months ago, which was the discovery of a ventricular septal defect (a hole/passage between the ventricles) during one of her echos. This defect (VSD) has never showed up on any of her previous tests, which was puzzling. Our doctors best guess is that it has always been there, but the muscle of her heart was so thick they just couldn't get to where they could see it before. Maybe removing of the muscle has given them a better view. But, whatever the reason, it was pretty disappointing to find out about this issue. We were so grateful to have made it through so much... just to find out about another problem. *sigh* For now, her heart is keeping everything flowing correctly, but they will continue with checkups every few months to keep an eye on it.
The thing about this condition is that, short of a miracle, there is no finish line. No moment where you've truly made it and everything is fine. Even a transplant is not a cure. You are always waiting for the next thing to happen.
But, when we were living at the hospital and I couldn't bring myself to ask for a new heart, God have us the unexpected opportunity for this surgery. Ephesians 3:20-21 says "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." He gave us more than we could ask or imagine, and we give him the glory.
We REJOICE in where God has brought us and what he had brought us through, and we CELEBRATE the milestones as we remember what he has done for us - not just here on earth, but for eternity. "What is our only hope on life and death? That we are not our own but belong to God."
Prayer Requests:
- thanks that we made it out the other side of recovery
- thanks for God's goodness & provision
- that her heart will hang in there for many years to come
- that her heart will be healed
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."
- James 1:17 -
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