Jonathan came home from the hospital on Friday afternoon. Jamie's parents kept Jackson that night so we could settle in with Jonathan. That proved to be a wise choice. I was feeling scared and needed time to adjust - how I should hold him, how I should feed him (try breastfeeding or keep with the bottle), if he would be sore, etc.
Jamie's parents spent Saturday night with us so we could get up and go to the Marathon Sunday morning kid-free. Alas, it was not to be so.
We had a laundry list of symptoms to watch for in the event Jonathan started to do poorly - puffy eyes, swollen feet, fever, agitation, poor appetite, trouble breathing, etc. Saturday night Jamie was concerned about Jonathan's rate of breathing. He started timing Jonathan's respirations - they were at 60 per minute. Jamie called the doctor and the doctor said it was okay. Jonathan's breathing became more gravelly and raspy as the night wore on and Jamie called again. The doctor said we could come in and have an echocardiogram done Sunday morning. We decided that we would take two cars. Jamie would follow me. I would leave my car at the point I would pass off the timing device in the relay exchange. Jamie drove me to where I would pick up the timing device and begin my run. Jamie left me around 8am to go see the doctor. Jonathan had a third echo done and it showed his lungs retaining the same amount of fluid as before. The doctor was comfortable with this and we had more peace of mind. I was just scared that he had gotten through the big surgery and then something terrible might happen simply because we ignored a symptom we should not have. Never was it more true to say "Better safe than sorry."
The WAKM relay team raced well. Stacy ran first. William ran second. I ran after William. Steven took the fourth leg and Josh ran the last seven miles. We all met him near the last half mile and ran in together (I suppose "together" is relative. Josh took off and Steven stayed with him. The rest of us followed as best we could!") I was simply thrilled to be a part - doing something concrete for my child. I was so glad that I was able to complete my portion of the race without mishap. Thank goodness! I was not really worried. I just wondered how I might feel. I was tired but that was about it.
We can never thank all of you enough for your help. Some of you brought us meals or gave blood for Jonathan's surgery. Others have been prayer warriors. Thanks to those of you who have sent us anonymous cards in the mail - how sweet and helpful! Thanks to those who ran in the race or donated to the Bell Center. We can never repay you but we will pay it forward, as Jamie says. We will make certain that we pass on your legacy of giving.
Right now, Jonathan's lungs are still acclimating to his heart. This has caused congestion. His lungs are secreting fluid in reaction to all that has gone on. At first, Jonathan's body was retaining the fluid in his right lung. On Tuesday, the doctor said that his lungs were clear. Yeah!
Although Jonathan's lungs are relatively clear, he is still coughing. He probably has mucus and other gunk in his lungs that have yet to be cleaned out. He is not wanting to eat either. This puzzled me because he was such a great eater before. We think his throat must be raw from being intubated, from acid when he gags up his awful tasting meds (potassium chloride specifically), and from coughing.
He is napping twice a day and sleeping nine hours at night (not every night but close to it). He is smiling and talking again (he did not while he was in the hospital). He seems glad to be at home. Jack is glad he is here, too. Jack kept inquiring about him. We finally took him to the hospital waiting room and explained that Jonathan was there but we could not see him because the doctors were fixing his heart. That pacified him. Seeing friends and family in the waiting area seemed to answer questions as to where everyone had been going without him.
Watching Jonathan heal is like watching that liquid nitrogen man from "The Terminator." Every time he got shot, the liquid nitrogen closed over the wound and you could not tell anything had been there. Jonathan does look like he has a zipper down his chest but the holes from the drain tube, the tubes going to his heart, and the central line are all closing up nicely. The tape from all the tubing left marks almost like sunburns all over his abdomen. The blankets from the hospital made it worse. Slowly but surely his skin is healing and there is just a ghost of a layer of that damaged skin left behind.
This little guy has been through so much in the first three months of his life and has been such a trooper. He has hardly cried and smiles through it all. We just love him so much. We feel doubly blessed. Our lives will be more challenging but there are no promises that life is easy. I fall into the lie that I deserve an easy life because I have been "good." True peace and contentment is derived from true surrender. I am learning to surrender to the Lord. I don't always want to do it or like doing it because I feel like I am giving in to an unjust situation. However, I don't just want to survive this life - I want to LIVE it and live it abundantly like Christ promised. I can have abundant life if I just let go. Hang on and be bitter about life being unfair. Let go and live an abundant life. Hhmmm... I think I will go with the latter.
Julie
juliewarren@mindspring.com