Heart Update

We had our visit to the cardiologist today -- a visit we've been anticipating since the day after he was born. Today we learned that Jonathan's heart and lungs aren't showing major signs of stress. This is a good thing - no enlarging of the heart or pulmonery vessels, no leaking in the heart valves. I'll try to describe his condition without being too medical or technical. I'm not a doctor, but I'll try to accurately describe what's going on.

We did learn that he has another defect we didn't know about a month ago. In addition to the AV canal defect (hole in heart, deformed valves), and septal defect (common to many newborns - should heal eventually), he has a small hole in his aorta that's leaking blood back into the heart. Normally, this closes up. But it's a significant problem because the blood is sort of swishing back and forth in this one spot.

He's back up to his birth weight, but not really growing. He's eaten really well the past few days, though. We're going to put vegetable oil (of all things!) in Julie's milk. This prescription will give him a significant caloric boost. If we can get him growing (adding about 1/3 to 1/2 ounce per day to his weight), we'll be able to have one surgery in 45 to 60 days. Then, the surgeon will do an open heart procedure and fix all the defects at once.

If he doesn't gain the weight, we'll have to do a preliminary surgery to fix the aortic hole and possibly put a band on the vessel that leads to the lungs. We're lucky that Jonathan's lungs have stayed tight. This has protected the tiny vessels there. But, tight vessels are a risk for surgery and post-op recovery. However, if the vessels relax, we're on the clock to get the blood pressure to the lungs under control (i.e., the band around the vessel). Relaxing is a good thing, though.

We'd like to only do one heart surgery. So, our fervent prayer is that he will gain the weight and start on an upward track. If his lungs relax, too, we're in an ideal situation. If you want something specific to pray, this is it.

How we are feeling:
Several of our "new friends" have walked down this road. Most report that the baby takes off once all this is fixed. This inspires hope.

Julie and I still get the feeling of sadness around this. When we go to the doctor, it seems that we learn about another obstacle. We love him so much and it seems that he's got all this stuff wrong with him. However, if we see these as challenges, then we can look up. Challenges are made to be dealt with and overcome. This is not a curse... although it sometimes feels like it. It's not. This is God's will for us, and we're learning how to live and learn inside it. God allows success, failure, wealth, poverty, pain, and joy for believers as well as those who don't know him. So, we're not asking "why us?" I personally have bouts with anger at the fact that we have all this to deal with. It's really an unmet expectation. But, like any other adjustment, this will get better.

Julie and I talked with the parents of a child with Downs yesterday. The child is 2, and his Dad said that now he wouldn't change or take away his son's Down Syndrome. His son has been such a blessing to their family, and the condition has been the vehicle for all that. His comments were unbelievable to us. But, what an incredible reality we have to look forward to! We can't wait for the time that we start to feel that way... on whatever level.

Thank you all for your continued prayers. We need them. Please pray for Julie and I. We need some extra grace right now. Your support through this has been a balm. Note: the picture above is from playtime tonight. Thanks to Nana for Jonathan's new Christmas pj's.

Jamie

Brotherly Love

These pictures show just how loving our son, Jackson, is. He's so excited about his little brother. His purity and innocence is inspiring.

We go to the cardiologist Wednesday. More news to come after then about Jonathan's heart surgery.

Jamie

Recent happenings...

My present state of mind...

In light of what we have been through in recent weeks, past problems seem incredibly trivial. However, they were so huge to me that I thought I was immune to any more. Jamie and I felt that we had hit the best stride ever in our marriage and were looking forward to the baby's arrival to mark the best stage yet in our family.

Now we face a situation that is permanent and will not disappear with time or some magic formula. We have been dealt a serious blow. I must admit that I feel as if I am Satan's Punching Bag. Each time I think I have some issue beat, another one comes knocking. This time I am totally out of my element and will have to completely lean on God. I am weary. Being dependent on Him is all I can do. I must admit I am wary to do so and hesitate to trust Him for fear of what else may befall us. However, deep down I know He did not cause this and is not using it as a means to punish me for some sin I committed. I can trust Him.

Saturday night I did feel like a human punching bag. I felt achy and bruised all over. I thought mastitis was on the way but I wasn't sure. Sunday I was sure it had arrived, so I called the doctor who called in a prescription for me. By Monday I felt better. Monday afternoon was not so good. Jamie came home early to avoid bad weather. We went downstairs during a tornado watch. He covered me up with blankets. My fever escalated to 104 degrees. My head hurt so badly that I thought it was going to split wide open or rocket right off my neck. I went back and forth between intense chills and sweating. My asthma was triggered by the harsh, rapid breathing with the chills and the overheating. I know it may seem funny now, but I seriously thought I was going to die. My thought was that so many tough things had happened already, maybe my time on earth was up and Jamie would be left alone in our new situation. To make things worse, I had recently read an article where a woman told her husband she had a headache and then dropped dead of an aneurism moments later. I was terrifed that was going to happen to me. Jamie called the doctor who proceeded to prescribe two Tylenol. I looked at Jamie and said, "You have got to be kidding me!" In all seriousness, I asked Jamie to sue the doctor if he was wrong and I died. :) An hour later, my fever started coming down and I was able to sleep. Jamie wrote down a schedule and set alarms to get up to give me my meds when I needed them and again with Jonathan for his night feedings so I could sleep. Jamie was a real trooper. I know I freaked him out. By the next afternoon my fever broke just as I got to the doctor's office. I was disappointed because I looked like a fool. However, I was so grateful to be feeling better.

Tuesday night Jamie fed Jonathan around dinner time. Soon thereafter, he swaddled Jonathan, lay him down in the crib, and got ready for bed himself. Jamie heard crying and went to see what was wrong. Jonathan was on his tummy with his body rigid, head held up. He had vomited in his crib and was trying to lift his face out of it. We think that he inhaled some of it. It was in his nose and mouth and he seemed not to be breathing. The weird thing was that he was hooked up to the monitor and it did not register any problems with breathing. Jamie picked up Jonathan, turned him over, whacked him on the back, and Jonathan cried a little. He still was staring at us with terrified eyes as if to say, "Help me!" Jamie got the bulb and suctioned out Jonathan's nose and mouth. He kept doing that until Jonathan gave us a healthy scream. When we got him calmed down, we called the doctor. We were instructed to stay home unless something else unusual happened. We went to the pediatrician Wednesday morning to make certain that Jonathan had not had a seizure. The conclusion we have come to was that it was not a seizure - just that he inhaled the vomit. That was very scary.

Now we are simply trying to get Jonathan to gain weight. Today he was down two ounces from his birth weight - seven pounds, four ounces. We are using breastmilk in a bottle with formula added to it. Technically, he is neither breastfeeding nor is he taking formula - it is a combo of both, designed to yield the highest calories.

Jackson continues to love on his brother. I have found that I really need to keep a better eye on him. One day I was changing Jonathan's diaper on the floor. The ottoman was next to us and I had placed the car seat on it. Jackson tipped it over. It landed scant inches from Jonathan's head. The other night I was on Jackson's bed reading books to him. Jamie was on the floor with Jonathan. Next thing we know, Elmo was launched over the bed in the general direction of Jonathan. We would like to think it was not malicious... A few days ago I went into the kitchen to get something. I came back into the den. Jack had reached in the car seat, picked Jonathan up, and was carrying him around like a pro. My stomach clenched and I calmly said, "Mommy needs Jonathan now, Buddy." I tried to explain to him why he should not pick Jonathan up. Needless to say, Jonathan now is strapped in the car seat whenever I leave him in it on the floor.:)

Please continue to pray that...

1 - Jamie and I are united and not at each others' throats from stress.
2 - Jackson continues to adapt well to Jonathan and doesn't resent him.
3 - Jonathan gains the appropriate weight needed for his heart surgery (we don't know what his goal weight is).
4 - We meet with the cardiologist Wednesday. Please pray we can have this heart surgery done sooner rather than
later. Pray the doctor has something concrete to tell us - goal weight, date for the heart surgery.

Thank you for your support and encouragement. I have heard people say before that they "feel prayers." I think I have really experienced that for the first time in the last couple of weeks. We do feel your prayers. Please keep praying.

Love,
Julie

Gotta Gain Weight

Jonthan is eating well. Despite his healthy appetite, he's still at his birth weight. His doctor's concerned about this, so we've got him on a "bulk up" program of formula supplements and 3-a-day free weight training (just kidding on the free weights).

We see the cardiologist next Wednesday. If he's healthy and gaining some weight, we'll schedule the heart surgery. If not, we'll wait. We're taking it one day at a time.

His personality is emerging. He's such a sweet baby. People are telling me that he has my smile (it's lopsided to the left just like mine). Jackson is really interested in Jonathan, too. He's talking about what he'll be able to do with him once Jonathan's older. Jackson and I had some one-on-one time Saturday afternoon at the "Dragon Tales" live event. It was fun to get out for some guy time. Thanks to our friends at NBC for the tickets. Julie and I got to go church yesterday while my folks watched the boys. It was good to be there to worship and be with friends.

Please pray specifically that Jonathan will gain weight and stay healthy. Your prayers work. Thank you all for your continued love and support.

Jamie