The Whole Story

This story took much longer to write than I expected…I’ve been working on it for 3 days…with many interruptions of course – but here it is, its fairly raw, maybe graphic to some and possibly disturbing – but this is the real story…read it if you feel led, but don’t feel you have to. I think the writing is mostly therapeutic for me – remembering and figuring out how to tell the story makes me work through the thoughts, emotions and feelings and that’s the beginning of healing – but some may desire to know the whole story, and for you – it is here:

It’s been a week, yes in fact, one week ago right now, I was holding a precious still bundle in my arms. I never really realized how a heart and arms could actually ache with the thought of what they long to hold, but its true. Even your body feels the loss, whether your mind has accepted it or not. I think its time for me to write the long story…or at least try. No telling how long this might take…barring too many interruptions maybe I’ll get it done today?

Last Monday, October 18, I went to work for only about the 3^rd time in a month…it was the first time I’d been at that location in a month, and of course I had to explain to my co-workers a bit about what was going on, but I was feeling fairly positive, knowing that as long as I could stay healthy, baby had a chance (no matter how small) of recovering from what was hurting him. I felt quite fine, surprising myself with how easily I fell back into the routine and remembering what I needed to do, I even felt focused for the first time in quite a while…for the first couple of hours at least. Late in the morning I felt my focus fade, and in spite of getting up to take a break and have a snack, etc. I felt less focused the rest of the day, but physically felt good so I wasn’t worried. After work I went to my SIL’s to get my blood pressure checked, since they wanted to keep pretty close tabs on me to ensure I was staying healthy in spite of what was happening with baby. I was surprised to see my BP was far above normal and even above the 140/90 cut off that they said I should watch for. I was hoping it was just a fluke, so I went to relax for an hour, it was still high, no change, I tried to sleep for an hour, still high, no change. I was desperately hoping and praying that things would change so that I didn’t have to go to Winnipeg that night. I had an appointment Tuesday morning, and I really hoped we could wait until then, but that was not to be. I called my doctor’s pager as she had told me to do, and when she called back, she said it was time to come in. During the conversation she mentioned that they had just found out that the amniotic fluid had tested positive for Coxsackie virus. That is the virus commonly known as Hand, Foot and Mouth disease in children (although like most viruses, it can be manifested in MANY different ways). She also told me that upon reviewing literature and studies, she could not find a confirmed case of this virus in a fetus, although it had been identified in neonates. There were no anti-viral drug that were known to be effective against it, so treatment was basically impossible, the only option left was for our son to fight it on his own if we could both stay healthy enough to allow that.

I called Trevor and asked him to grab me a few things (I had kept most of what I needed in an emergency bag in the van ever since the first appointment in Winnipeg), pack up Lorelei (so she could stay the night with my SIL) and come take me to Winnipeg. It took a while for him to get everything together, so we didn’t leave until almost 9pm. At times like this, we are especially thankful for being able to just drop Lorelei off with my SIL at a moments notice – it has happened much too often in the last two months! During the drive to Winnipeg I felt pretty awful, although I’m sure a fair amount of that was stress/anxiety over what was to come. By the time we got to Winnipeg and up to the Obstetrical Triage department, my blood pressure had gone down to borderline normal levels. They drew blood (on the second try as came to be the normal course of things during my whole hospital stay) and took a urine sample to check for pre-eclampsia and monitored my BP for an hour or so before telling us everything was good for now… They said they could admit me, but that it was up to me, but they told me Trevor couldn’t stay (I found out the next day that he could have). Since we figured Trevor would have to get a hotel anyways, we decided to just spend the night together. We arrived at the hotel about 1am, and by the time it was all said and done we really only got about 6 hours of sleep before heading back to the hospital for my follow-up appointment the next morning.

My wonderful nurse met us the next morning and did a quick scan, she didn’t say too much, which wasn’t really normal but I didn’t think too much of it at the time. While we waited for the doctor she had arranged for us to see a geneticist to discuss our family history and see if there was any potential for likely genetic problems. After reviewing what we knew, he confirmed that he didn’t expect to find anything genetic, especially since the first set of primary genetic results had come back clear. After our meeting with him, we went back to an ultrasound room for the specialist and resident to “take a look” at baby. They were not happy with what they saw. They told us the amniotic fluid had decreased significantly, baby’s swelling had increased and along with unhealthy looking changes in the heart, liver and bowel, they were also seeing changes in his head. They took my blood pressure a couple times, and although it wasn’t alarmingly high, it was not normal either. At this point they kind of laid it out for us, either we could wait it out as long as medically possible for me or we could choose to be induced now to prevent further problems. If we wanted to wait, I would have to be hospitalized in order for them to monitor MY health because the risks to me at this point were mounting. They gave us very little hope for recovery in baby because of the deterioration seen in him and the beginnings of what seemed to be an effect on my health. Although he was past the theoretical age of viability, they said he was much too sick to live outside my body. The doctors and nurse talked through each question that we had and immediately started work to get me admitted. My initial response had always been I wanted to give him every chance that he could have to make a recovery. At this point, we talked it over and decided that the toll the pregnancy was taking on my health and on us physically and emotionally (from travel and stress associated with everything going on) it was best to go ahead and accept the inevitable. We felt it wasn’t worth the risk to my health, since we had Lorelei to think about and so little hope for our son. It was such a hard decision, with so many things to consider, we didn’t make a final decision right away. They admitted me to the 5^th floor around 11:30. The 5^th floor, they explained, was a combination of all kinds of female patients from 15 to 85, but it was not the labor/delivery/recovery floor so we wouldn’t have to deal with seeing/hearing other mothers giving birth or with their babies. We spent a few hours that afternoon talking about all the things that have to be considered in such a situation – yes, we were going to go ahead with the process, but did we want to see/hold the baby, did we want others to see/hold the baby, did we want pictures, etc. did we want to have a funeral, how did we want to take care of the body, did we want to name him, what name, on and on and on the questions came. Throughout the next few hours we had visits from our nurse for the day, my nurse from fetal assessment, and both the doctor and resident from fetal assessment. We also had a visit from the social worker who generally works with the fetal assessment patients – I had met her during a previous visit and she was very caring and informed, ready to answer whatever questions we had and help us think about all the decisions we needed to make.

The resident came up to see us around 4PM which is when we finally got to tell them we were ready to go ahead and start the process. She also explained the process of induction and talked to us more about our “case”. She said that since this was a very rare case, with this type of virus not being identified in a fetus before (that they could find record of at least) they would like to do a case report and try to get it published in a journal to help inform other doctors of the possibility and hopefully spark some interest/research into the topic. We gave our consent for that and to allow them to do an autopsy on the baby to help them gain whatever extra knowledge they could. To us, it seems that if his little life can help someone, somehow, we’re not going to stop them from finding out everything they can. The only catch at this point was another wait…this time we had to wait for a bed to be available on the delivery floor. The hours came and went, we had supper and tried to pass the time any way we could. I began to wish we’d brought more things…the computer and a movie for instance… It was 8pm and I figured they must have just decided to leave us upstairs for the night, when a nurse came and said they were ready for us to move downstairs to a labor room.

At this point I got a little more stressed, were they really going to start at this late time of day? I guess I could have asked them not to start anything until morning, but I don’t suppose I would have gotten much sleep anyways…

This was just the beginning of a rather uncomfortable and undignified process. My nurse came to get us settled and tell us what the process was going to be, eventually she came back to place an IV line, but just as I predicted in my mind, she failed and that poke was one of the most painful things that happened during my whole hospital stay! Thankfully she called her older, experienced charge nurse to come instead of blowing another vein…I hate getting poked mostly because it always seems to take more than once! Once they placed the IV line the nurses disappeared again for most of an hour, finally they came back with the resident who was on duty for the night to give me the first dose of medication to induce labor. The medication consisted of two nasty looking little pills of prostaglandins that were to be inserted in my vagina, up against my cervix…I wish that resident had had longer fingers…I’ll just say it was the MOST painful part (physically) of the whole process.

The medication had to be repeated every 4 hours until the baby was born, and after each dose of medication, they had to monitor my blood pressure every 15 minutes for the first hour, every half hour for the second hour and then on the hour until the next dose. Needless to say it was hard to get much rest with that much going on…the blood pressure cuff was a permanent part of my left arm and with an IV in my right arm and instructions to lay flat for an hour after each dose of medication, finding a comfortable position was questionable at best. The first dose was given around 9:45, then one at 1:30…between those two doses I watched TV until midnight and then tried to sleep…haha…not happening. Instead my mind filled with all kinds of thoughts and worries…what if he’s born alive and much healthier than they think and they won’t help him? What if, what if, what if…in spite of trying to relax and pray. I felt somewhat alone at this point because Trevor was trying to get some much needed sleep and I knew that I needed him to sleep so he could be rested and able to help me later-I promised myself I wouldn’t wake him up unless I REALLY couldn’t handle things on my own anymore.

After the second dose (which wasn’t nearly as traumatic as the first, thankfully), I was feeling very crappy, the cramping was uncomfortable and I was exhausted- the night ahead seemed un-ending, so I asked for some sort of pain medication to take the edge off. They gave me a morphine drip, and I’m really glad they did. In spite of the fact it made me dizzy and gave me a weird roaring sound in my ears every time I blinked, it made it so I could relax and zone out, I think I even slept some…whatever the case, it helped me rest for 3 or 4 hours which was a real blessing by the time morning came. Sometime after 5 they came for the third dose, and when I got up to use the bathroom, that was when I really felt the effects of the morphine – I remember saying to the nurse as I shuffled across the floor leaning on my IV pole – I sure wouldn’t be walking too far in the condition! Stuck back in bed again, I dozed on and off in between the nurse’s visits but wasn’t nearly as relaxed as the few hours before. At about 6:45 I felt a gush of something, and I figured it was probably just my water breaking, and since the nurse was due back any time, I just waited for her to return before I mentioned it to her. She checked me out and immediately called her charge nurse…it wasn’t fluid, it was blood. The charge nurse came and immediately called for my doctor to be paged. I was shaking and scared, but I had the presence of mind to tell Trevor that he better call information, get my boss’s number and tell her I wouldn’t be working that day – I had forgotten to do that the night before and I was worried she might be the only one who showed up at work.

My doctor showed up very quickly and checked me himself, he was worried, he immediately called for me to be transferred to the high-risk ward for more monitoring (“I want her over there before shift change”…giving the nurses 20 minutes to get it done), typed and cross matched for 2 units of blood if needed and to be started on oxytocin to speed things up. He also broke my water at that point. Because of the nature of the labor, they weren’t monitoring contractions or the baby with a monitor, so they didn’t have that cart in the room, apparently that cart is where they keep the tool used to break the water, so while he was checking me, he asked the nurse for that tool, and she went running off to get it while he’s mumbling in disgust under his breath about being stuck with his hand up a women’s behind because the nurses didn’t have what he needed. Of course I didn’t hear these comments at the time, and had a bit of a chuckle when Trevor told me about it later– just the doctor’s true colors coming through- he’s basically a genius, and you can tell just by how he talks and moves and looks at a situation that the wheels are always turning in his brain, and he’s not afraid to say what he thinks. I was glad to have a very competent doctor who didn’t let anybody tell him “No”, he did what he felt needed to be done, and with the years of experience under his belt, I felt we could trust his judgment in what needed to be done.

They tried to draw blood before moving me, but once again, a blown vein, and they ended up letting the high risk nurses take my blood once they had me moved. It was a quick, whirlwind tour over to the other wing – the doctor showed up as they were moving me into the new bed, and filled my new nurse in with the whole story. She told me later that she knew he was stressed about my case because he didn’t usually tell her the whole story like that, except when he was really worried about the patient. She also told me that in 17 years working with the doctor, she’d only seen him do 6 or 7 blood transfusions; she assured me he didn’t jump the gun on anything that serious. I felt quite at ease with the nurses and doctors who were attending me the whole time, at least as “at ease” as one can be in that sort of situation. The trip to high risk was certainly a trip down the line as far as amenities and room space was concerned. In the regular labor/delivery room, it was a spacious room with a window, a TV, rocking chair, pull out chair for Trevor to sleep on, a little table and chairs in the corner, a phone, nice variable lighting, a fridge and a large bathroom with a spacious shower – two seats even, for the laboring mom to be super comfortable. In contrast, the high risk room was a small white square with a tiny bathroom in the corner – hardly enough room to get in there with your IV pole and close the door. There was a hard chair on either side of the bed – one for the nurse, one for Trevor and harsh fluorescent lights. No creature comforts that’s for sure! I guess when you’re high risk; you don’t get too many choices.

By this time, I was getting pretty uncomfortable as the morphine had worn off and I was on oxytocin, so the contractions were getting much stronger. I asked for something stronger, but I guess I wasn’t direct enough the first time, and had to ask again. At this point the nurse asked whether I wanted an epidural because if so, she needed to draw more blood to check on my platelets. I had decided I didn’t want to do that if I could handle labor without it, since I knew that it was quite a process to get it done and it took some time to take effect. When she told me that they needed to take blood again, that was just one more reason not to want one…I was tired of being poked. So I asked what the other options were and we decided that Fentanyl was likely the best way to go at this stage in the game. I can’t remember if it was before or after the fentanyl, but at some point, during one of only a couple short spells that the nurse left the room, I started to feel very sick. I hit the call button and a nurse showed and found me a basin just in time. Ick…I hate throwing up…not that I wasn’t feeling bad enough already! After that, they started me on some sort of IV anti-nausea drug. It was a little ridiculous looking at my IV pole…fluids, oxytocin, anti-nausea drugs and pain meds…who knows what it was that made me feel rather numb. During the 2 hours I was in high-risk, both my doctor and nurse from fetal assessment came up to check in on me- I was amazed at the level of support they offered. It wasn’t long before I started to feel like maybe it was time to push, the nurse checked me and then called the doctor- the baby’s head was already through my cervix and it was time to push. At 9:07am, William Job was born. He was tiny and perfect, but at the same time, “broken”. He was born still into our arms, and while we wish we could have seen him open his little eyes and let him hear how much we love him, he was born to a MUCH better place. He was born into His Saviour’s Arms…what a blessing, for he never had to face the struggles and pain of this world, but what a struggle for us who only got to say “good-bye”. He was tiny, actually about the size of Lorelei’s little doll…which makes it painful me to see her carry that dolly around naked by one arm…I can’t help but think of William when I see that dolly, although he was much cuter, even in his state of sickness. He weighed about a pound and a half, and despite the swelling/fluid retention present in his whole body, he was perfectly formed and had a beautiful little face that looked much like Lorelei’s – a button nose and cute little perfect lips. There was one exception to all the swelling – his right hand was perfect, with long slender fingers and itsy bitsy fingernails. We held William for a bit, trying to remember each special thing about him, and allowing the reality of his death to sink in. During this time, the resident came and helped deliver my placenta and they were happy that my bleeding had slowed down a LOT after William was born, and they were no longer worried about immediate problems. After a bit, the nurse took him and bathed him, dressed him in a little hat and booties and wrapped him in a little flannel blanky – blue with little cows on it, I thought it was pretty appropriate for us. Part of me wishes I had brought a blanket from home for him…I wish I had brought our camera too – they took a couple pictures of him, but I would have loved to take some of my own. She also did footprints – that is one of my favorite keepsakes…so cute and innocent, but without the proof of sickness, like you can see in the pictures. After a little while, they got ready and moved us back to the 5^th floor for recovery. I didn’t really realize what was going on at the time, but the nurse brought William with us in a little blanket covered bassinet while Trevor pushed the wheelchair. I was done, I felt we had said good-bye the best we could and that his little body no longer had major significance, so when they asked what our wishes were, I asked that they take him to do little molds of his feet and the other things that needed to be done.

I know that the drugs had an effect on how I dealt with things immediately after William’s birth, but I felt a peace inside that was almost scary – it felt like it was almost too easy to accept at the time…not that I wasn’t sad, but the emotions didn’t overwhelm me as bad as I had expected…again…there were many drugs involved, but I felt it went beyond that. We spent the afternoon resting/sleeping and letting things sink in. My SIL had planned to bring Lorelei to see us, and we understood I would likely be kept until the next day at least, for observation. The rest was much more restful that afternoon than it had been for a few weeks, but I kept watching the clock, waiting for Lorelei to arrive, I missed her a lot! We also spoke with the social worker again and my wonderful nurse Marie from fetal assessment came up to check in on us and give me a hug. When Lorelei arrived I just wanted to hug and snuggle her, but she wasn’t really interested in much more than a quick hug…she wanted to explore. When they brought me my supper, Trevor, Julie and my FIL took Lolo and headed over to the cafeteria to get their own supper. I was surprised when they came and asked if I wanted to go home. I was happy to get out of the hospital and looked forward to sleeping in my own bed. The whirlwind of the last few days left me exhausted and the emotions that started to come out more as we drove home were draining too. There’s much more story to tell…but maybe 5.5 pages is enough to start with??

For William

There is an ache in my heart and tears in my eyes tonight. The last week has been a real roller coaster, physically and emotionally. I'm not ready to tell the whole story yet, but we said good-bye to our little boy yesterday. One of these days I'll come back and finish the story, but for here's what I have for now:

For William

Little Footprints on a page

Keepsakes in a box

Precious hints of who you are

But really not enough

Our hearts are filled with love for you

And there it will remain

Until we see you once again

In that most Perfect place

That someday seems so far away,

Oh, how I long to go

To hold you and be held by

His Everlasting Arms

Thank you so much for all the help, support and most of all the prayers...I don't know how to respond most to a lot of the messages/phone calls/emails, but please know we're thankful and in time, you'll hear from me again.

One more thing stroked off the list!

I got a call on Friday morning to let me know that they have completed the "quick scree" on the chromosomes, and our baby has the right NUMBER of chromosomes at least. This rules out 3 of the most common chromosome abnormalities, but the full test won't be back until next week, so there is still a possibility of a genetic component to the difficulties he is having. I've been feeling quite a bit of movement the last few days and I'm really hoping for a decent report on Tuesday. Right now, we're trying to enjoy the weekend!

A week at a time...

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.

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.

Welll...

Well, that last post started off with good intentions of being a bit of a serial story…but as usual in my life, things got in the way. I guess I can tell you more horsey stories, but I’ll also tell you what else has been going on in my life to keep me busy and away from everything else, even horsey things!

The last post was written in mid August, there were many days of riding weather, some of which I took advantage of. Riata and I had some wonderful rides and some that weren’t so wonderful, but I felt like we had come a long way! The last few days of August and first few days of September we were able to have a nice visit with my little brother. He came on his way to Idaho on an extended road trip. He spent 5 days with us. Those five days were busy, Rob helped me make cucumber relish and ginger cookies. He went with me to town and watched Lolo during my eye appointment, helped purchase a mattress for Lolo’s “big girl bed”, kept me company and helped watch Lolo during the farmers market and even made supper for us on the night I was working! We also managed to squeeze in 3 games of scrabble! It was a good visit- hope we don’t have to wait 18 months until the next visit!

The last day that Rob was here, Lorelei started getting sick…turns out we all got sick (even Rob)…Lorelei probably had it the least seriously, but had a rash, fever, etc. I really don’t know what it was, but I’m almost certain it wasn’t Fifth Disease, even though that was going around the daycare – because I was sick right after, and my blood work shows that I have never been exposed to it(keep reading if you want to know WHY I know that).

Lorelei was off for a few days, and then I was feeling poorly as she recovered, and while I was recovering, Trevor got sick. He said he started feeling off on the Friday before the long weekend. By Monday evening he felt pretty good, and planned to go back to work the next day. Tuesday morning however, he woke up vomiting like crazy, it lasted all day, so he didn’t make it to work that day…or the next…but by Thursday morning he thought he was doing better, he was able to eat and besides a bad headache, things weren’t too bad. After lunch on Thursday I put Lolo down for a nap, and had planned to leave her with Trevor while I went to the farmers market later in the afternoon. He came down after having a nap (as I was getting ready to leave) and he was sobbing…I mean really crying and carrying on and completely out of character. It was really scary, and that’s when I knew I needed to take him to the hospital. I called my sister-in-law and made arrangements to drop off Lorelei on our way to the hospital, and away we went.

Long story short, they diagnosed him with meningitis, however, until the 48 hour cultures came back, he was put into strict isolation, in case it was bacterial. Thankfully the tests came back negative and it was diagnosed as being viral (the less serious of the two types of meningitis). They never did put a name to the virus, but it seemed to hit Trevor quite hard, and it has been a long journey of recovery. After 72 hours in the hospital, he came home and recovered for another 10 days at home before returning to work short days. After 3.5 weeks, he still gets worn out quickly and hasn’t been able to work more than a 6 hour day.

Between caring for Trevor and Lorelei, trying to keep on with working 2 days a week and trying to run the household/farm/garden myself, I was very worn out. I’ve been very blessed to have family here to support us and friends and family praying for us continually. We’ve made it through, and hopefully Trevor will be able to work normally this week finally! God has indeed shown that He works in mysterious ways. We’ve both had our faith and patience tested through this trial, and I believe we’ve come out stronger on the other side. I’m very thankful that God saw fit to spare my husband from more serious or longer lasting illness and am more aware of the blessing that each day I spend with him really is, than I had been before! I thought September was a tough month…