So after my last appointment, and dealing with lots of emotions I was really worn out for a couple days, and although the weekend was beautiful, I didn't get to enjoy most of it just because I was so tired/run down. On Friday my SIL and her boys came to spend a good part of the day with me and Lolo, she was a great help, just cleaning up/scrubbing the kitchen and all kinds of little jobs that needed to be done. I got a few things done while she was here, but didn't have the energy to do too much. I spent Saturday and Sunday feeling pretty lousy, but by Monday I felt more energy and we were able to enjoy the beautiful day for a few hours in the morning before I went in the house to work on my part of our Thanksgiving dinner. Trevor did a lot of work helping clean the dead plants out of the garden while me and Lolo worked on digging carrots, there are still more to dig, but we got a good start at least! We had a delicious supper at my SIL's and although Grandma was missing from the dinner, it was nice to spend time with the family.
In spite of the things we have been going through, I am constantly being made more aware of how many things we have to be thankful for. I don't think I was very good at voicing my thanksgiving this weekend, but I really am thankful. For a house, food and vehicles to get us where we need to go. For friends and family and their amazing support. For a caring husband who tries to make my life easier and gives me the support I need. For a healthy, beautiful, smart and happy little girl who brightens my each and every day (in between tantrums at least :) For the many, many people who have emailed/messaged/called to show their support and assure me of their prayers. Lastly, but most importantly for the amazing hope, peace and Love that God my Father has extended to me. Hope for a glorious life eternal (for me, and for this little baby, whenever God decides He is better of in Heaven than here) because of HIS love to me, even as a broken and sinful being, He loved me and gave His Son for me...and for you! The peace that I've experienced this weekend is truly amazing...not that there isn't emotional struggle happening within me, but I've been able to put it on the back burner and not let it consume my thoughts while I try to enjoy the time I have to do whatever it is that He would have me to do. I am thankful!
My appointment yesterday was fairly routine...as far as these appointments go at least. My nurse did an ultrasound and took images of the important stuff for further study, did measurements, etc. Then she had the doctor come and take a look, she always does her own ultrasound and this time she had a neonatologist along with her to observe the baby and kind of be up to date on our case for if/when this baby may need his care. He didn't speak to me at all, they just discussed my case between them a bit and my doctor talked to me about what she saw. There wasn't a lot of change in my little guy since Thursday, but no improvement either. I still feel him move quite a bit, but his swelling/fluid build up has not improved and my placenta is very thickened, over twice as thick as it should be at this point, which is usually in response to a very sick fetus. They didn't have any results back from my amniocentesis yet, but should have the rapid portion of the genetic test back by the end of this week, and possibly some of the infectious results as well. I don't have another appointment until next Tuesday, but need to be carefully watching my own health now, since the baby's condition could have an effect on me. This is known as Mirror syndrome, and everything I've read calls it very rare and dangerous... Just what I wanted to hear. Basically it means I would develop swelling/edema and my blood pressure would go up and the only way they could remedy that at this point would be to deliver the baby. So at this point we are just praying that I can remain healthy, and that baby can recover from whatever mysterious thing is causing his illness. I have a feeling this pregnancy won't be going to 40 weeks. Of course they gave us the option to "not continue the pregnancy" but we both believe that as long as there is a chance for baby, we're not going to take that away from him, unless it comes down to a major question of my health. From this point I will have weekly appointments in Winnipeg and I need to keep track of my blood pressure a few times a week between each appointment.
It is a real adjustment to only live day by day...not that I shouldn't have been thinking/living this way before... To not know what each day or week my bring in such a profound way is a challenge and a change for one who likes to at least SOMEWHAT plan ahead. I guess this is a good way for me to learn...or relearn how to leave each day in HIS hands until I am in it. Every time someone asks me if I want to do this, or if I'm planning to go to such and such event...I just don't know how to answer, because I don't know if or when I will have a baby to take care of or what my health or his health may be whenever the time for delivery comes around. For now, as they have suggested, I'm trying to keep things as normal as possible, I'm going to continue working (partly to help pay for all these trips to Winnipeg!) and just take each day and week as it comes around. And of course PRAY.
Wednesday, October 13, 2010
Thursday, October 7, 2010
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.
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 :)
Tuesday, October 5, 2010
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!
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