I have mixed emotions about today. There were many ups and downs, feelings of happiness and guilt, and times of energy and complete fatigue--and it's not even surgery day!
The past two days, I had set out to spend some intentional quality time with Emerson. I knew I wouldn't see much of her on Friday and through the weekend due to Malachi's surgery. Today started out well. I had a great time sleeping in, getting some domestic things taken care of at home, and most importantly one-on-one time with our daughter. As planned, we met up with a friend at the hospital who would watch Emma for us for a couple of hours while we went to go visit Chi. When we arrived our nurse was at lunch and Chi was sleeping peacefully. John and I left for a couple minutes to get a quick snack (Thursday afternoons we are treated with some AMAZING snacks provided by one of the staff members). I left to go back to Chi's bed as John was finishing up what was on his plate.
When I opened the door to our module, I was just caught off guard. There were three nurses, two nurse practitioners, and the attending physician all standing around Malachi's bed--not encouraging. I was able to keep my composure while the doctor was bedside explaining to me and the nurses about Chi's heart rhythm. I don't quite remember what he was saying, but it's not normal. They did another echo today to get the waves on paper to show the electrophysiologist and see what she thinks. He had been having episodes of bradycardia with rates in the 70s for 30-minute stretches of time for the past few days. A "normal" heart rate for him is in the 130s range. Well, today his heart would beat at a rate of mid-60s for a stretch and then mid-130s, 60s, 130s, etc., etc. Cardiology doesn't seem TOO worried about it; it's not a life-threatening thing. But as a mom who's child has just had open-heart surgery, seeing funny things on the monitor, irregular rates and rhythms is SCARY!
Anywho, I was able to stay composed until the attending physician left, but then I was completely overwhelmed with this feeling of guilt like I had abandoned my baby today--even though I was spending intentional time with Emerson. In my head, I KNOW that I needed to have today with Emma as much as she needed to have that time with me. I KNOW that the nurse would have called if there was something serious going on with my child at the hospital. I KNOW that Malachi is in capable hands at Riley. I KNOW that the doctors are doing their best in the care that he is receiving. Even though I know these things, it doesn't make it any easier to deal with the fact that I can't physically do anything to make my baby better.
After crying my eyes out in front of everyone in our module and ending up with three boxes of Kleenex, John was able to reassure me that I wasn't a horrible person or a bad mother for not being at the hospital all day. We visited with Chi for a little while longer and finished off our day with Emma at the Children's Museum. It was a good (and free!) night downtown. It wasn't that I was embarrassed or ashamed of crying at the hospital, but I dont' like looking at people's faces when they just have this look of "I feel so sorry for them" on their face, which tends to happen when a person is crying. At the same time I'm praying that God will use that time of weakness, to those people who witnessed it, to show that any strength I have at this point solely comes from Him.
I can only cling to the following verse: "So if you are suffering in a manner that pleases God, keep on doing what is right, and trust your lives to the God who created you, for He will never fail you." (1 Peter 4:19)
You can also be praying for our financial situation. Because we were able to make a profit from selling the house and the fact that most of our medical expenses will be covered, we are okay for the moment. It will be very interesting for a while though as medical insurance has begun to be taken out of John's pay AND the fact that I am no longer working will obviously adversely affect our monthly budget. Right now things are okay, and I am trying not to stress about what the future holds for us in that arena.
Pictures from tonight's excursion to the Children's Museum will be posted tomorrow, I hope.
Oh Marissa, I wish I could be there to give you a hug. Although I don't think that would really help anything right now. I can't imagine how it must feel to be torn between your children - one who needs her mommy's love and attention and one who's life is in critical condition. All I can do is pray for you and I know that God hears those prayers. Please know that we love you and are constantly praying for you guys.
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