Life of Lorin: June 2013

Since I just got out of the hospital, this year we kept things pretty low key for my birthday. It was a great day! My sweet husband woke up early and went on a super secret grocery store run to get ingredients for the best homemade breakfast tacos I've ever had. When he got back home, he snuck into the bedroom and took the baby monitor so that I could sleep in. It. Was. Wonderful. I think I slept "all the way" until 8:15 - which is the latest I've slept in since Knox was born! (This, coming from a girl who used to sleep till 1 pm! Those days are long gone. Ha!) Anyway, I came into the kitchen to find Logan cooking us all breakfast. So sweet!

Somebody's ready for breakfast! (Too bad he won't eat eggs!)

Logan, making the breakfast tacos.

SO good!!

Birthday flowers from the hubby!

Knox found a flower in the floor and wanted to give it to me. Sweet boy!

Coloring on the chalkboard after breakfast.

Kicking and erasing the chalkboard with his feet. :)

That evening, my mom watched Knox while Logan and I went to dinner and a movie. We saw This is the End, and it was actually pretty funny! I really ejoyed my low key birthday party this year. I'm so thankful I got to spend it at home with my family!

Where to start? I've been a Pediatric Cardiology nurse for nine and a half years now.  Throughout this time, I've gotten to work with some really great doctors who have become great friends. One of those friends is Dr. Amit Verma, who I've known since he was a resident back at Children's. Amit was so kind and offered to do a fetal echo on the baby for me. I jumped at the chance!

For those who don't know what a fetal echo is, it's a sonogram that looks specifically and very closely at the anatomy of the heart of an unborn baby. So many of the heart babies I work with are born with undiagnosed heart defects even though their regular 20 week anatomy ultrasound showed no problems. Because of this, and the fact that 1 out of every 100 babies are born with a congenital heart defect (making it the number 1 birth defect in the world), having a baby with a heart problem has been a very real fear of mine. My friend Dr. Tim Thomas offered to do a fetal echo for me when I was pregnant with Knox, and it was such a relief to hear him say that his heart looked perfect.

Anyway, when Amit was doing my fetal echo, we immediately noticed that the baby's heart rate was way too fast. A normal heart rate for a baby is 120's to 160's, and my baby's heart was beating 255 to 276 times per minute. WAY too fast. It stayed this fast through almost the entire fetal echo.  Because of this, he officially diagnosed the baby with SVT, or Supraventricular Tachycardia (a fancy way of saying the heart rate is much too fast). The problem with SVT is that if the heart rate stays that high, the heart is beating too quickly to really fill up with blood, so there's not enough blood being pumped to the rest of the baby's body. This causes them to not grow well because their body isn't perfusing, and their organs can start to shut down.

After Amit finished looking at the rest of the heart, he called his Perinatologist friend whose office is around the corner. (Funny enough, I already knew Dr. Weiss and love him. He is the doctor I use for my first trimester screens.)  Amit explained that I was a friend, and we were doing a fetal echo "under the radar", and asked if Dr. Weiss could fit me in to check on the rest of the baby and make sure everything else looked okay. Dr. Weiss literally had me come in immediately. (It's kind of nice having friends in high places!)

Dr. Weiss checked on the size of the baby (which was perfect), and for any fluid collecting around his other organs and brain (everything looked normal). The baby had a normal heart rate when we started this sonogram, but did go in and out of SVT throughout the rest of the sonogram. Because of this, they decided to admit me to the hospital to start me on a medication that would hopefully keep the baby's heart rate in the normal range. The reason they had to admit me was because in order for the medicine to cross the placenta and get to the baby, I'd have to take HUGE doses of this medicine which would make me feel awful, and could affect my own heart rate and blood pressure. To give you an example of just how high the dose of Digoxin that I started out on was, I once had a 400 pound patient who took 250 mcg twice a day. They started me out on 500 mcg three times a day! (My maintenance dose is now 250 mcg three times a day. Still more than the big boy!)

After Dr. Weiss told me I'd need to be admitted, reality hit me and I was devastated.  I was so, so thankful that Amit had offered to do the fetal echo. All of our other sonograms and doctor's visits with the OB had been normal.  We had no idea that anything was wrong. And that's why I was so shocked. I'd always been afraid of the "what if there's something wrong with my baby"... but I never really expected it to happen to me. I was thankful that we caught this so early. I was only 19 weeks along, and they tell me the earlier they catch SVT the better the outcome. I was very thankful that structurally the heart is perfect - but still so sad that there was anything wrong at all. I know that if I had to choose a heart problem, SVT would be on the list. It doesn't affect life expectancy, and 80% outgrow it by the time they're a year old.  But I'd rather just have a perfectly healthy baby that had nothing they needed to overcome. Who wouldn't? I also couldn't get over the irony of a pediatric cardiac nurse having a baby with a heart problem. I've always wondered why God gave me such a love and passion for these heart babies. Deep down I've always secretly hoped it wouldn't be because I'd "need" the knowledge for my own family. But truthfully, I'm thankful. God knows me and knows that I'm a knowledge and research junkie, and if I had a baby with anything other than a heart problem, I'd freak out and be even more scared because I don't know the other organ systems like I do the heart. I'm trusting that God knows what I can handle.

So I was admitted to the antepartum unit on Wednesday, June 5, 2013. I started taking the Digoxin and the nurses would come in every 4 hours and listen to the baby's heart beat. I had EKG's done and more fetal echoes. By Friday, June 7th, we hadn't heard any sustained SVT, so they discharged me! I was so, so happy to go home. This was the longest I'd ever gone with being away from Knox, and I missed him so much. They set me up with weekly appointments with Amit and Dr. Weiss to do fetal echoes and sonograms, and in the meantime I'd bought a fetal doppler so I could check the heart rate myself at home. (Type A, I know.)

After a couple of days of checking the baby's heart rate at home, I started to notice some breakthrough SVT. At first it would only last 5 or 10 seconds, and then go back to a normal rate. But every day the SVT seemed to last a little longer. On June 12, 2013, I actually heard the baby be in SVT for a little over 2 hours - and that was only while I was listening. My appointment was the next morning, and I just had a feeling that I'd be re-admitted to the hospital to start the next line of treatment. I was right.

This time I was admitted to labor and delivery to do 24 hours of continuous fetal heart rate monitoring to see how much the baby was actually in SVT. If it was more than half of the time, we would need to start Flecainide.  Well, the baby was in SVT a little over 55% of the time, so we started the Flecainide. And this time I had to stay in the hospital from June 13th through June 18th. Flecainide is a little more dangerous than Digoxin. It could actually affect my own heart rhythm and send me into some lethal rhythms, so you have to be hospitalized for a few days to make sure that doesn't happen! I had more daily EKG's, and more fetal echoes. (And lots more of the hospital chicken fried steak, which I found out I love!) My friend Laura gave me her Netflix password, and I watched all of the seasons of The Walking Dead. I was so embarrassed to admit to anyone who came into my room that I was watching a show about zombies... but it's really good! Hey, whatever helps pass the time, right??

So by June 18th, we hadn't heard any more SVT at all and everything looked good on my end, so they sent me home! This time I was even more excited to be going home. Logan or my mom brought Knox up to visit me at the hospital every day, but it wasn't the same as being home with him. And he was having a hard time at home with me being gone for so long. Lots of tears and meltdowns. So, now I'm taking the Digoxin three times a day and the Flecainide twice a day. I can't take them at the same time, so I have 5 different alarms set on my phone to remind me to take my medicine throughout the day. The medicine makes me feel so sluggish and tired all the time. I guess because my own heart rate and blood pressure are lower? I also have dizzy spells sometimes. Those aren't fun. Oh, and the nausea and vomiting are back! At least I got 1 week of freedom from morning sickness, right? For some reason, I feel so sick with that first Digoxin dose of the day. I've tried waking up and eating something with it, and that hasn't made much of a difference, so I'm back to taking Zofran with that first dose every day. I'm happy to have something that helps though.

So that's the very long version of what's been going on!  We are hopeful that the new combination of meds will keep the baby's heart rate in the normal range, and even more hopeful that he will outgrow the SVT by the time he's born. That would be the best scenario.  He will have to stay in the NICU after he's born for at least 48 hours to monitor for SVT, but if he has no episodes, we get to take him home and I can monitor him there. If he ends up going in to SVT, we will start him on oral medicines and pray that he still outgrows the SVT within his first year. I was really sad to learn that he'll have to spend time in the NICU. I keep reminding myself that things could be much worse, so I'm still thankful that it should be a short stay... but I'm sad that I'll miss out on all that early bonding and cuddling in the hospital. I'm hoping they'll let me mostly stay in his NICU room so that I can nurse him on demand, rather than having to pump and give him a bottle.

Thank you so, so much for your thoughts and prayers during all of this. They are much appreciated. I will do my best to keep everyone posted on how things are going!