One Day At A Time

I'm feeling a little bit lost right now, after the whole whirlwind of a week driving every day to Winnipeg and not hearing too much change, but mostly getting decently positive remarks about the baby's condition.
Today was a totally different day, and of course it was the first day I'd gone by myself. They've decided that the diagnosis is probably wrong, and they're really lost as to what the problem may be as of right now. Dr. Schneider, who has been on my case since Monday, but I hadn't seen the past two days, did an ultrasound today and was not too happy with what she saw.
She said the baby appears to be in worse condition today than on Monday, and that is part of why she has decided to scrap the original diagnoses, because if it was simply a case of tachycardia, and it had resolved like it appears it has(which is also much quicker than they expect to see if it really was PSVT) then the baby should be improving in condition, the heart should be becoming more efficient and that is just not the case. She also mentioned that the degree of fluid build-up is incongruous with the severity of heart rate disturbances that they saw. Basically she said in order to see that much edema they would expect that the baby would have been experiencing very high heart rates for a high percentage of the time, which did not appear to be the case, and in fact the fluid has increased since Monday, instead of decreasing as they had hoped.
She also noticed a few things on the ultrasound today that are somewhat troubling and definitely not improvements to the baby's condition. First off, she noted little movement today, however I find this a hard thing to really be sure of, as I don't see how they can tell if they've just caught the baby during one of his resting/sleep periods instead of an active period. He is laying the opposite way today that he was yesterday (head to the left today instead of to the right like yesterday) and I know I've felt him moving, however not as much as I'd like. Secondly, she noted (as the pediatric cardiologist had also noted yesterday) that the walls of the heart "brighter" than they should be, which can be an indication of problems. There was also quite a bit of variation in the liver, it had many spots that were hyper-echoic (meaning they showed up more than they should, or that they reflected back more sound waves than the surrounding tissue, meaning they're of a different density) which was troubling to her.
Dr. Schneider said that if she had to go strictly from the ultrasound, she would predict that it was an infectious case of some sort (some sort of virus likely affecting the fetus), but so far, everything they've tested for has been negative. They are still waiting on one test result from some screening they did using a blood sample from me on Monday. In an attempt to look for more answers, they did an amniocentesis(took a sample of the amniotic fluid by putting a needle through my abdomen - the whole process reminded me of doing a tail block on a cow, from the swabbing with iodine based disinfectant to the 6" long needle). It will be a couple of WEEKS before we get full results from that though. I won't lie, it was not at ALL a comfortable procedure and by this point I was wishing I hadn't come alone, but I am very thankful for the caring and compassionate nurses and doctor that I get to deal with. Unfortunately, my regular nurse was off this afternoon, so I had someone I'd never dealt with before, but the quality and genuine-ness of care was still very much present. At this point there are MANY more questions than answers, and we won't even begin to know any of those answers (if ever) until Tuesday. The doctor did tell me to just take the weekend to relax and I was relieved to hear that I can stay home for a few days, however, she didn't hide the fact that there may be no heartbeat on the next ultrasound.

There's lots to deal with today...its been a very emotional day, I felt emotional even before I went to the city, so it wasn't exactly a great day to hear the news I heard, but I'm trying not to think too far ahead (although that is getting harder now) and just take each day as it comes. There is a chance that this all may "spontaneously resolve" as they put it - or that he may be healed as I would choose to see it (best case scenario) or he could be faced with a lifetime of challenges (there is the possibility of Downs syndrome or other chromosomal defects)if he gets to live in this world, or he may meet my Lord before we get to meet him. I'm not sure how to react, but I know that is the only part of this equation that I have any control over, so I'm trying to take it one step at a time as HE provides the light for the path, I know HE knows my paths(and my baby's) far ahead of me, even when I can't seem to see where my next step should be.

Thank you to all who have been upholding us in prayer and for the tangible support offered by those who are able.
Please continue to keep us in your thoughts and prayers, we need all the strength we can get.

PS- for those who are wondering, the "he" is deliberate, we decided to find out the gender, since we have a need to discuss specifics about him much more than usual and it just seems kind of strange to say "it" over and over.

October 5 &6

Not too much to update from the last few days, things continue to look pretty positive, with the heart rate being in the normal range during all the exams of the past two days. They're keeping me on the half dose as it seems to be enough to keep him in normal ranges and they're continuing with daily EKG/ultrasound in Winnipeg until tomorrow for sure. They're supposed to give me a further plan tomorrow about whether we can skip some days between exams over the weekend/next week. I'm getting rather tired of all the driving, and hope that tomorrow's news is good. The cardiologist said yesterday that she's seeing some things she'd like to keep an eye on, but nothing that is a problem right now. I'll let you all know more when I know more :)

October 4

Today’s appointments ended up lasting a lot longer than I expected! We were at the hospital from 11:30am to 4pm! Grandma accompanied Lorelei and I and even without a nap, Lolo did very well! The first stop was for an ultrasound at fetal assessment. They spent almost an hour looking at the baby and were happy to see that he didn’t have any heart rate accelerations during the exam. He was also moving quite a bit, which is a good indication, since sometimes these babies are so sick and lethargic that they don’t move. The also showed me the placenta, and although it is low lying, they don’t consider it to be a big risk, and it has lots of time to move out of danger zone completely – so that is a relief. I got to see quite a bit of the little guy throughout the day and even got a picture finally! After the ultrasound, they sent me for an EKG and then to see a pediatric cardiologist at the variety children’s heart center. The cardiologist seemed happy to report that she didn’t see any structural defects to the heart and although she wants to keep a close eye on me and baby, she consulted with the doctors at fetal assessment and they decided to keep me on the low dose of this medication and see if they continue to see improvements. The fluid could take weeks to resolve they say, but right now its just a day at a time, with daily ultrasounds and EKGs until at least the end of the week. From there, I don’t even know what’s next! If they can get the heart rate regulated I will likely remain on this medication until the baby is born. I think those are most of the highlights of the day…I’m almost ready to leave for today’s appointment, so its time to get moving again…thanks again for all the support and prayers!

And now for October

It’s October already, and I guess September wasn’t the only month of challenges for our family, because even though its only the 3^rd, its shaping up to be a very interesting month. During my routine prenatal exam in September(yes, I’m pregnant, for those of you that missed the big news…due the first week of February) my doctor noted the fetus was demonstrating an abnormal heart rate, actually the heart was speeding up and slowing down a lot. I talked to her about the possibility of being exposed to Fifth disease (human parvovirus B19) because it can cause anemia in the baby which can lead to other problems. So, she sent me for blood work to establish the status of my immunity to the disease and put in a note to try and get my ultrasound moved up, since it was still 3 weeks away. Immediately following my appointment, I went to the lab, and the next day the ultrasound department called and rescheduled my appointment for 2 weeks earlier. I am so thankful that all these things happened at the time that they did, in light of what we’ve found since then. Fast forward to Thursday, September 30, 2010 – Trevor and Lorelei accompanied me to my ultrasound appointment. It started off well, there was a new tech who was very personable and easy to get along with, much better than my two previous experiences with the ultrasound department! She didn’t even make me change into a terrible hospital gown, she just said, “I’ll make this easy, just lift your shirt and we’ll make it work”. She did the scan, and just as she was finishing, the radiologist stuck his head in the door just to tell her he was going for coffee, and she asked him to come take a look. This is when I started to get a little nervous. He then asked me twice…within a few minutes, if my husband was here with me…which made me a little more nervous… He sent the tech out to get Trevor and proceeded to explain his concerns. The baby has edema on the head and the abdomen, as well as fluid within the abdominal cavity. He also noted that the placenta is attached very low in the uterus, possibly covering the cervix. Both things were rather concerning to him, and he said he would be referring me for further testing to a hospital in Winnipeg. Of course its all rather scary at this point, but its hardly sinking in, and we left with a lot on our minds. The next day I spoke to my doctor, who told me my blood work had come back negative for any fifth disease exposure (meaning I am still susceptible to it, should I come in contact with an infected person…not so good). She also said she had an appointment for me to see a specialist in the Fetal Assessment Unit at Women’s Hospital in Winnipeg on Sunday morning…today…

A major show of support from our family made it possible for Trevor and I to spend the night in Winnipeg rather than leaving early in the morning, and Lorelei stayed in the care of my Brother in law and Sister in law. We were able to enjoy a nice dinner together and try to relax for the evening, although with so many unanswered questions buzzing around in my head and being in a different bed, I sure didn’t sleep well. We left the hotel with plenty of time to spare, and stopped for a quick splurge(but of course unhealthy) breakfast at McDonalds and even after registering, we were still 25 minutes early for the appointment.

Just as I was thinking, we better settle in for a long wait, the doctor walked in and just like that we were in business, there wasn’t as single other soul in that wing of the building since they don’t routinely schedule weekend appointments, however this doctor, as my regular doctor put it, is a bit of a workaholic. I suppose this is the time to be thankful for a workaholic doctor! After about 25 minutes of ultrasound exam on two machines, and a brief wait when he left the room, he sat down to discuss the situation. I was please to hear him say that he knew what was going on with the baby (as sure as anyone can be, aside from God himself!). He said the baby is experiencing paroxysmal supraventricular tachycardia – meaning that the heart will randomly experience episodes of extremely fast beating, and then in between these episodes, the heart is tired, and can’t keep up with the demand, which causes fluid to “leak” into the tissues outside the veins which is known as edema (fluid build up in the skin) and ascities(fluid build up in the abdomen). In the specialist’s words, “this baby is very sick at the moment”. He also said, however, they have approximately 70% success rate in treating these cases. The treatment involves medicating me with a drug that decreases/regulates the heart rate, which in turn, crosses the placenta and works on the baby as well. There are risks involved of course, the risk that it could affect me more than it affects the baby, or that the drug they have chosen to try first may not work on the baby in the way it is expected, but for now we’re just taking it one step at a time. I have to go back to Winnipeg for an EKG to make sure my heart can handle this drug, and to monitor the baby further tomorrow morning, and I’ll try to keep this blog updated as we go, rather than having to tell every individual person the updates. Please pray for peace and strength for us as we go through the trials ahead, for healing for the baby and skill for the doctors as they attend to our case.

Thank you so much for the support that each person around us has offered and for your prayers.