Some Thoughts

So I guess three years ago (to the day on November 3rd) our lives were turned topsy-turvy when we took Meghan to the ER because she was vomiting at 17 days of age. Her heart rate was in the 320's. She went into a form of cardiac arrest. She was admitted to the Cardiac ICU. She remained in the hospital for two full weeks with the diagnosis of SVT-fast heart rate. You can read more here, if you want to.

It was hard. It was scary to know that we were responsible for checking her heart rate with a stethoscope throughout the day and during the night. When we traveled to visit family, our trusty little stethoscope went with us. Not only that but she needed medicine for her heart every six hours (and later 8). So we set the little alarm on my new digital watch and gave her the medicine as needed. We hated drawing up medicine. Giving it to Meghan wasn't so bad...unless she spit it up, or worse, threw up from gagging on it. Giving medicine to Meghan was easy. She was trained from a very early age.

She (and I) gets her first ambulance ride at the age of five months when she has a febrile seizure (not admitted to the hospital). She and I have our second ambulance rides in another two months when we are in a car accident (when Derek is in San Fransisco).

Fast forward two years. Evan is born, and the day we are discharged from the hospital after his birth, we head to the ER and are admitted because he is dehydrated despite his excellent nursing attempts. After they finally get the IV in, he is fine though we stay in the hospital for a couple days. Evan has been our healthy little boy until now.

Fast forward one more year from his birth. Our healthy little boy as a seizure that lasts several hours long. He rides in the ambulance for the first time. He seems to make a full recovery, though the reason behind the seizure is unknown. We know a seizure could return any day, but pray that it doesn't. Suddenly, our counters are cluttered with medicine and syringes. Again. And this little boy has a very strong opinion about how awful it tastes.

But it's different now. We've been through a difficult time before. Honestly, though this is not what we want for our family, in some ways this situation is easier than what we went through a couple years ago with Meghan. (Though can I tell you that Evan's hospital stay, in some ways, was worse than Meghan's? The only time she cried was when they were trying to replace mulitple IV's. Evan cried A LOT. And could not be comforted for hours at a time.) Vigilance is in watching and listening (and making sure the monitors are always on), not in trying to count heartbeats. We don't have to disturb Evan's sleep to give him medicine. We don't have to wonder if we missed something, since we will know if he has another seizure. So this is a bit easier on us as parents.

Don't get me wrong. In many ways this is horribly difficult. I don't mean to be flippant. But really, we are extremely blessed. Sure, most parents can't say that all of their children have spent days in the ICU. Probably many can't even say their child has been seriously ill. Meghan and Evan might have some health problems, but they're manageable. (I am thankful for yet another great specialist. We've heard great things from multiple people about Evan's new doctor!) Just spend an hour at a children's hospital. We quickly realize how tiny our children's health problems are. I never want Meghan's speech disorder or anyone's health to be a thorn in my side. It's just life.

But the fact is that God has given us these children for a time. God has a reason for all things, and through all of this we have learned that we can never take our children for granted. Seeing a team of a dozen hospital staff work on your child is a solid reminder that life is fragile.

If you are a parent, I hope you haven't experienced what we have, but I also know that you may have experienced the loss of a child or daily difficulties with your child's health. May each of us appreciate life, no matter the "quality." Life, at all ages and stages, is still life. It is still to be treasured.

(You know how expectant parents say they just want a healthy baby? Yes, that is ideal, but really, all babies are a blessing. But that annoys me because life is to be cherished, even a difficult life. We will all have struggles, it's just harder to see our children going through them.)

So thank God today for the people in your life. Tell them what they mean to you. And go give your children a hug.

Another Baby with SVT

Many of our readers know Meghan's health history, including her SVT. But today another family's struggle with a baby (Evan's age) who has SVT. Meghan's case was the worst case her electophysiologist (cardiologist) had ever seen, but Stellan's is much worse. Stellan is almost exclusively in SVT. Please read Stellan's story at http://www.mycharmingkids.net/. And please pray.

Meghan's story:

When Meghan was 17 days old, I took her to the dr bc she wasn't eating well and then vomited. Everything checked out okay while at the dr; she even ate and kept it down while there. All was fine until that night when she vomited again. We promptly called the dr and took her to the local children's hospital's ER. The hopsital was about 45 minutes away...but we got lost on the way, having never been there before and the area was under construction. Thankfully we didn't know what was happening or we would have been even more freaked out and frightened. She was in a form of cardiac arrest when we arrived. They didn't use those words for several days...and I am glad!
Meghan's heartrate was in the 320's. She had tachycardia.. SVT...WPW type...the dangerous kind. For her, left untreated, it would be life-threatening. She was immediately admitted to Cardiac ICU...paralysis was induced so her body could recover...we cried and prayed. She had a breathing tube to help her body recover too.
After four days she was released from CICU. She was in the hospital for 2 full weeks, though we were told it would be a few days. Her electrophysiologist did many studies on her bc the meds just would not control it. During the studies when they induced the SVT, she always went into it, but they could get her out. In the hospital, when she was on meds, she only had one episode on her own. When he let us leave the hospital, the tachycardia could still be induced, and she even had an episode the day before we left on her own.
Her dr. said it was the worse case he had ever seen and as long as she was only having episodes once a month or so, he would not hospitalize her again. She was on two meds when we brought her home...and often gagged to the point of vomiting when we gave them to her. We monitored her heart with a stehoscope throughout the day and night. We took it with us when we traveled overnight. The meds were definitely a stressful time for Derek and me. I used a watch with an ongoing alarm set for every six (and later eight) hours so we would always be reminded to give it to her...even in the middle of the night.
We were so thankful that I had already planned to stay home with her and that we would be the ones giving her meds and checking her heart rate.
Meghan never had another episode that we know of. She was slowly taken off her meds. We were told that there was a 90% chance that she would outgrow it by her first birthday, and she did, even though her case was so difficult. Before she was fully weaned from her meds, they did another EKG and ECG to confirm that it was gone. Praise God it was! We don't even have to see the dr. again, unless we have concerns.
A day or two before taking Meghan to the ER, we mailed out birth announcements. On these announcements we included a Bible verse...For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. It comes from Jeremiah 29:11. Even during those very difficult days we never lost sight of that verse. We know every child is a gift from God...and given to us to care for and love. I'm thankful we didn't lose her, but trust that we would still love and worship God even if we had.
So she's outgrown the SVT. Her heart rate is normal, all the time now. When she's between 4-6 it might come back, but we trust it won't. Even if it does, by then she'll be able to vocalize her concerns and we'll be able to take her to the ER before it's life threatening! :)

God is good-All the time!