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 3rd 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 5th floor around 11:30. The 5th 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 5th 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??
