Another Lease on Life

Get comfy folks, this one is going to be a long one - but it’s *mostly* good! Settling into life as a family of 5 was proving to be tricky for us. Mostly because we were still being cautious about sickness for the first month after Mr. Green was born knowing an open heart surgery was in the near future. The older boys adored him and were so sweet, always wanting to hold him and help in any way they could.

The issue was still being confined to the house while also not being able to even just go play in the yard because it was cold and Mr. Orange was still just 2 and I didn’t quite trust him to be outside with just 4 year old Mr. Blue. And my instincts were correct, because the one time I did - they left the yard. It was one of the scariest moments of my parenting experience thus far, and so far the only true and extreme example of eloping that Mr. Blue has done. We have cameras on the outside of our house and it was finally a nice enough day and I needed them to be able to go outside but I didn’t want to bring Mr. Green and sit outside - so I let them go play and checked the cameras periodically. One of the times I went to check I couldn’t see them on any of the camera angles, but there are a few places that the cameras don’t see, so I set Mr. Green down and went outside looking for them. I checked under the deck, looked in the window wells, didn’t find them - but my husband had just gone for a walk and I thought maybe they tagged along. So I called him and asked if the boys were with him, the moment he said no - I just lost it. I scooped up Mr. Green and went running outside, didn’t even stop for shoes, a coat or anything. We have neighbors across the street that we play with frequently so I ran there first to see if they went there - they hadn’t. At this point I am inconsolable and didn’t even know where to go next. I see Nic come running down the sidewalk and he’s just screaming their names. Meanwhile, I’m just sitting on the driveway holding Mr. Green and sobbing. I see Nic start running faster and I see a glimpse of one of their coats up ahead, they had gone to see if another neighbor was home about 5 houses down from ours. They were safe, thank the Lord. Once we were home and I had held them tightly for a long time I asked why they left the backyard when they knew the rules - and Mr. Blue said his body just told him he needed to leave and go to our neighbors house. We then discussed that he knew they were on vacation and they weren’t home, but he said he still just felt he needed to go check. I had later told my neighbor about it and she said she had gotten a notification on her phone about some activity at the door and she said the video of it was really cute because they were checking on their cats through the window and had a cute little 4 and 2 year old conversation - and THEN I told her what really happened. I can look back on those videos now and laugh, because it was cute and they were being funny together - but it was very much not funny in the moment. After that happened I was much more diligent about making sure we were getting out of the house to give the older boys a change of scenery. (and we also purchased walkie talkies, and went over safety rules AGAIN).

To be honest, I was incredibly stressed during the ‘fourth trimester’. He was actually a pretty decent sleeper at night, much better than the other two during the early newborn phase, and nursed well. But he was a little colicky. He screamed, a lot, during the day. And we couldn’t let him get too upset because we didn’t want him to end up having a tet spell (turning blue and going unconscious due to his heart defect). We had one instance that he turned very purple during a screaming fit but it never turned into an actual tet spell. For this reason, he was mostly always on me in the carrier and we tried as much as we could to not ever let him cry for long periods of time.

There were times it was unavoidable so we could give some focus to the older 2, but we tried our hardest to avoid it. We have an owlet from when Mr. Blue was a baby and we would put it on Mr. Green occasionally to check his oxygen levels, and it always went off because anything under 80% caused the alarm to sound - but it at least gave us a baseline to see where it was at to be able to tell his Cardiologist and be able to see if it was starting to trend downwards. To say that it was traumatizing is actually putting it lightly - it always put all of us on edge. And since there was no way to really ‘silence’ it, it was constantly going off, but we also needed him to wear it for a decent amount of time to be able to get true readings. Mr. Blue has always been very anxious and the days of monitoring oxygen were always very triggering for him and still to this day he will talk about it and how much he didn’t like the alarm and that it scared him. 

Looking back at pictures it’s crazy to see the difference in his skin color. Around 3ish months old, he really had a grayish color to him that I don’t really think we noticed in person, but can really see when we look at pictures. In April, we had an appointment at Childrens to meet the surgeon and his team, have them run a few tests, and get an idea when surgery would likely be. Right from the start we loved the surgeon and the whole team, they were all so kind and genuinely caring and the surgeon is an incredibly intelligent man who truly seems to care for each and every patient. We asked a million questions and he answered every one thoroughly and did not at all seem to want to rush us out the door but just kept asking - do you have any more questions, what else can I walk you through. We left there feeling the hands of God on every interaction and every moment of our time there, we also left knowing that surgery was going to be in 6 weeks. The Dr. said based on the oxygen numbers we were seeing, coupled with the one purple faced screaming incident that it would be better to do it sooner rather than later. They usually want the babies to be at least a certain weight before undergoing surgery and since Mr. Green was a good size, they said there’s no reason to wait. The very next day I received a call from the hospital and the date and time was set for surgery in May. And so began our next lock down. From then until surgery we didn’t go anywhere and no one came to us - we absolutely couldn’t risk Mr. Green getting sick or they would push surgery out at least another 6 weeks - and that was another risk we didn’t want to take. At least this time we could get outside and play in the yard and go for walks, so that definitely helped - but being stuck at home and not seeing friends at parks or church or go on playdates was extremely hard for all of us. We also tried to do some adventures that allowed us to ‘participate’ while still in the car.

We did grocery pick up, talked to neighbors from across the street, watched church online, and face timed with family. 

As the date was getting closer we were making plans with family for watching the older boys and were basically planning to do a drive by so as not to be in contact with them at all before leaving for surgery - they would drive in as we were driving out. We had no idea how long we would be gone so it was going to be a mix of our parents watching the boys at any given time. They told us to plan for at least 7-10 days, but could be longer. As it turned out, the week before surgery Mr. Orange randomly came down with a cold, and the next morning both he and Mr. Blue were headed for the grandparents to eliminate the risk for any more exposure for Mr. Green. I was absolutely devastated. Not only was I now going to be away from my boys for a week longer than expected - but I was also not going to be with them over Mother’s Day and I was incredibly emotional about it. And while we missed the older two dearly it ended up being really nice to have a few days to prepare ourselves emotionally for what was to come. We went on some long night walks to just decompress and check in with one another about our thoughts, fears, etc.

And then before we knew it, the date came for us to leave. We had to go the day before surgery because they needed to do a few pre-op tests and that also gave us time to settle into the Rainbow House (think Ronald McDonald house - but specific to Children’s Nebraska), and be able to have a somewhat relaxed evening before the early morning of surgery. 

All the pre-op appointments went well, he passed the health check and was officially cleared for surgery the next morning. From the hospital we went to the Rainbow House to get checked in and figure out our home for the next week or so. This place is incredible! There is a large kitchen with shared amenities but also fridges/lockers that can be padlocked for personal food items that you do not wish to be shared. There was also a special freezer that I was able to put breastmilk in and have access to when needed. Meals were frequently donated and they would post throughout the facility when that meal would be there and then it was first come first serve and any leftovers were put in the fridge that were free for the taking to whomever. When we got into our room it just looked like a nice, clean hotel room. Once we unpacked we laid down to try to nap and relax a while before dinner. After dinner we went for a walk and then headed back to our room to do a zoom call with friends and family to pray over Mr. Green.

I am still so incredibly blown away by the amount of people who logged on to pray with us/over us/Mr. Green/surgeon/surgical team and their words gave us so much comfort for the day and days to come. Then it was time for bed before the big day. 

We woke up pretty early in order to get all of our things packed, Mr. Green and ourselves fed, and over to the hospital for their last pre-op checks.

And at exactly 8:15am we handed our 3.5 month old baby boy over to the nurse to take him back to surgery. It was one of the hardest things I have ever had to do. Knowing that he was about to undergo open heart surgery, knowing they were going to have to stop his heart to be able to repair it, praying it would restart. But what happened next is what I have the hardest time putting into words. After handing Mr. Green over to the nurses and having our moment of tears, what can only be described as the peace of God came over us and held us for that entire morning - and really the entire week.

We had our own private waiting room so: we could sit there and comfort one another as needed, I had privacy (and a mini fridge) to be able to pump when I needed, and just be able to comfortably sit and wait away from the prying eyes of others during a stressful time. But we were truly at peace. We were able to laugh with one another, we went on a walk around the hospital, we climbed stairs (which once the adrenaline went away I very much regretted because my legs were so shaky for days after - I attribute it to a stress response because walking stairs normally doesn’t affect me whatsoever), and we visited the gift shop to find something to commemorate our time there. And while sitting in our waiting room in between our movement breaks, I journaled. I had decided that I wanted something I could look back on that described my/our emotions, our thoughts, and just the whole journey from start to finish while it was happening so I could recall details accurately. So I packed a journal and wrote in it every day we were there.

I’m going to do something a little different in the coming weeks. For the weekly blog posts, after today, I’m going to share what I wrote in my journal from our time in the hospital before, during, and after surgery as it still feels very fresh to me. And since we just celebrated his 2 year heartiversary yesterday, it seems like the perfect time to share. We saw God’s handiwork throughout his life from the very beginning, even while I was pregnant with him, but it was so very evident during this time in particular. To say that I truly don’t think I could have gotten through this without my faith, is putting it extremely lightly. I can see how people can easily be sucked down into a dark spiral when scary things are happening with their kids, in a way it happened to me after our second miscarriage. It wasn’t as bad as others I have heard, but it was bad for me and faith helped to get me out. But this time my faith and my relationship with God was much stronger that the light stayed and darkness was nowhere to be found - I knew he was going to be okay and so were we. I had finally gotten to a place where I did not let fear win and have control over me.

XOXO, mischief managing momma

Oldest (1)- Mr. Blue

Middle (2) - Mr. Orange

Youngest (3) - Mr. Green