Our Quiverfull - Roller coaster day

Dec. 2, 2007

Roller coaster day

Today will probably always stand out to Jeff and I as one of incredible bittersweetness. My day started early when our wonderful cardiologist came in to do an echo on Noah. I quickly sensed that something was wrong but couldn't tell if something was wrong with Noah or if it was more a matter of his not being able to get a good look at things. When he finished, he told me that Noah has developed dilated cardiomyopathy. This means in simplest terms that Noah's heart is too weak to pump (squeeze) correctly or efficiently enough. I am not sure precisely what is being measured, but the numbers should be 28 - 45. Noah's best reading out of all of the tries was 25 and he had other readings going as low as 22.

This is not something that can be repaired. It is often seen in children with mitochondrial defects and is often the most critical or life-threatening issue that those mito patients face. There are cardiac medications that may help manage this and improve his function, but the problem itself will never go away. We don't know if it will get worse. No one knows right now. Noah will be started on a cardiac drug tomorrow at a very low dose and his blood pressure will be monitored every 30 minutes. If he keeps tolerating the drug, the doses will gradually increase through the day until he reaches a full dose. He will need to come back to the hospital on Thursday for a day of further inpatient testing but shouldn't need to spend the night. There is more that the doctor said, but this is all my brain could hold today.

As you know, today is Sarah Elisabeth's 5th birthday and we were given tickets to take our family to the Nutcracker. The doctor insisted that we go. He had my cell number and I had his pager number. He promised to keep an eye on things and call if something emergent developed, and he had me page him as soon as the ballet was over just to touch bases. Everything was fine and they had decided not to start the medication this evening (too hard to monitor Noah adequately overnight), so he encouraged us to go ahead and go out to eat before coming back.

The Nutcracker was just wonderful. The director took some amazing "creative license" and actually changed the plot quite a bit, but the dancing and scenery and effects were dazzling. There was a souvenier table and we bought Sarah a snowglobe with Clara and the Nutcracker for her to remember her special day. She even got to meet (and hug) Clara when the show was over. She really loved it and the look on her little face was far more enchanting than anything on stage. We all went out for a nice dinner after the show. The waitresses brought her a cake and sang to her, but when she smiled at them she looked just like Noah for a moment and it broke my heart. Jeff and I wish so much that we hadn't found this out on Sarah's birthday because we will always remember it this way, but I am glad that she is young enough to have just thrown herself into the delight of the day and will never link the two events together.

Sarah really broke down and sobbed when Jeff had to drop me off at the hospital. I think that driving away without me after spending 6 happy hours together was just more than that little girl could take. I cried too but had to wait until she couldn't see me. Noah had a wonderful time with our friend Lynette. He snuggled and napped with her for 3 hours (Jeff was jealous LOL) and then had fun playing, looking at the fish tank, walking the halls, etc. It was hard to be away for so long, especially after this morning's hard news, but Sarah needed me more today. All morning when I was waiting for the children to come I was longing for Sarah and aching that I was missing even part of her birthday, but once I left nothing felt right without Noah.

As much as I hate this diagnosis and what it could mean for Noah, I do have to say that Jeff and I are incredibly thankful that it was caught. Our cardiologist is a dear brother in Christ, and even though Noah had a clean bill of cardiac health 7 months ago, the cardiologist has remained concerned that Noah could have a mitochondrial problem and that it could lead to a cardiac problem. He actually called us at home a couple of months ago and asked us to bring Noah back to see him again, then when we kept missing appointments due to Noah being hospitalized he sought us out at the hospital and did the testing himself this morning. Noah doesn't have any clinical symptoms that would have pointed to a cardiomyopathy at this point, and it could have easily gone unnoticed for some time if it weren't for the wisdom and sensitivity of his doctor. There is a deep comfort in seeing God's hand of provision in revealing this condition to us.

I'm weary and I'm glad to be back with Noah. I'm looking forward to climbing into bed to snuggle with him, but I wish that I could be snuggling my little birthday girl too. When I got back to the room tonight, Lynette mentioned that their special music in church this morning was "Your Grace Still Amazes Me." As I started thinking about the words I decided that I wanted to share that song on the blog tonight. God's grace has been so much more than sufficient - it has been amazing. It isn't that things have been easy or trouble free - it is that He has been everything that we have needed each and every day. I found this video and love the verses that are in the graphics. I hope it blesses you too. I couldn't seem to post it, but here is the link: http://www.youtube.com/watch?v=6YmGAGJRfWo

Love,
Kate

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Comments

Dec. 2, 2007 - hugs and prayers

Posted by DonnaC

Such a hard day, but I'm glad you had some sweet to mix with the hard... praying for your lil' guy, for your heart, and your family.

Continuing prayers,
Donna C
http://donnac.com