I want thank you all for the well wishes we’ve gotten, and answer the messages asking if we’re ok, what’s going on, and if there’s anything you can do. Basically I have been in the hospital 10 days now and will remain here hopefully only a little longer, but we don’t have all the answers yet.
I went about a normal morning taking the kids to preschool a quick trip to Target and a routine dr checkup/ultrasound that had a not- so routine ending. I was informed that my 22 week old baby girl had a heart rate that was twice as fast as it should be, called an SVT supra ventricular tachycardia and it needed immediate care. It is quite rare, occurring less than 1% of the time. On to the hospital I was sent (not even time to take the frozen food in my car home). Over the next few hours, I met my medical team: a high risk pregnancy specialist also called the fetal maternal specialist, pediatric cardiologist, adult cardiologist, new OB from my practice and at least ten or more nurses. It’s been a fast day, but a slow process. I will likely be here for a little while. Did I mention that we had one foot out the door for a trip to Mexico? I guess we will be taking it easy, not pool side but at Northside hospital for a little stay instead.
Day 2… Of our journey
I would imagine that 99% of moms of tiny babies who have serious medical conditions wish they could change places in a heartbeat…that every needle stick was into their arm instead of their baby’s. I would have to say that in that sense, I am the lucky one because I can keep my baby safe and shielded and take away any pain she would feel. For that I am grateful. Also feel that we are in good hands with our all- star team of pediatric cardiologist & fetal specialist, adult cardio, fetal maternal perinatologist and OB team.
Today is a day that we hope things
Start to happen. We’ve taken the appropriate first steps in treatment, and so do feel confident with our medical team’s chosen path. I felt sick a lot of the day due to the increase of medicine levels, but that is expected. I would like to stay positive and trust that things will go as they should.
I have just started to reach out to friends and let them know where I am & what’s going on. It’s very nice to have the help and support of family and friends.
Day 4…of my captivity
The night was long and I woke up with more questions and feelings of worry and hopelessness. It’s hard to be here and wait for things to happen and try not to let my mind wander to the what if they don’t area. I feel alone and sad. There was a bit of snow and sleet yesterday, and I feel so out of touch with the closed down city outside my window. I am grateful that the kids are taken care of, so I really only have to focus on this- but I guess I need distractions too until I know that we will have a positive outcome.
Day 6: freedom! Today I asked and the doctor has released me from 24/7
monitoring and I can now spend just a few hours a day strapped in bed on the fetal heart rate monitor, as opposed to all of them which makes a big difference! I was beginning to have a few secondary issues caused by my lack of motility and placement of the monitors. This will give me a little break and has been a huge morale booster. Avery came for a visit & Tyler is my spend the night partner tonight
, which also lifts my spirits!
Day 7- visitors! Lots of nice faces to see, and it was nice to be up and about as well.
I ate a banana out of boredom.
Well, the morning was very busy actually. All well within the usual morning hustle bustle of the hospital. Before getting out of bed in the morning I had blood drawn, medications dispensed 1.5 hours fetal heart rate monitoring, fetal echocardiogram, visits from 3 doctors an ultrasound and various nursing duties. It was a lot of information, but nothing concrete. It’s still a game of wait, watch and hope for improvement of baby’s heart function and condition. Nothing is moving backwards nor getting worse, but it is a little troubling that it also is not improving in some key ways.
Later I had a friend visit which was nice to take my mind off of things for a bit and a couple more doctor visits.
The banana eating for entertainment came later…there’s only so much time you can stare at your phone and try not to find the most obscure medical information out there to pore over.
I started this blog! I have gotten behind in conveying this information to the outside world. I started to break down last night and really miss my kids and the normal routines at home. We have been in a surreal experience for the past 9 days, and it started to hit like a ton of bricks.
But this morning, I was awoken for my 5 am blood draw from a deep slumber and my medicine levels of digoxin have reached a pretty good level 1.5 (target is 1-2). It is apparently very difficult to get this drug into your system, but it builds up over time. It is compounded by the fact that I don’t need cardiac drugs, so my body flushes it out, and our goal is to load me up to almost toxic levels so that it will pass through the placenta to the baby, who is the real patient. It sounds a little dangerous, which is why I am now under the care of a cardiologist and strictly monitored for any signs that my heart can’t tolerate these levels of drugs. The good news is that I am healthy and tolerating it well. The side effects are nausea, sleepiness, blurred vision and a very slow heart rate. I can live with that, if it means it is working- but until this morning we had only seen minor signs of improvement. We knew it would take some time. When we arrived, baby’s heart rate was running in the 240s&up. It gradually came down a littleover the first week and was running in the high range closer to normal (120-180). But there were other factors to watch. It’s they rhythmic pattern of the heart and electrical impulse inside the heart that was not running a regular circuit. We’ve been waiting for a “conversion” to the normal rhythm.