Friday, June 29, 2007

Diapers, Doctors, and Die Hard

These are the three things that have kept me from blogging lately. I've gotten a significant amount of my strength back, so I have been able to care for the babies almost full-time during the day. In fact, I was completely on my own with them from 9 am to 5 pm on Tuesday because my mom had some doctor's appointments of her own. I was scared at first, but everything went really well and I managed to get the boys fed, diapered, and bathed without having to leave either one of them cry for too long. When they both decide to have a meltdown at the same time things get very tricky, but I've been managing to multi-task between the two of them very well. I even did their laundry and made a few phone calls.

While I feel better and stronger, my body is still taking its good old time healing. I've had many doctor's appointments since my last post, and things still look crappy for me. Let's see--where to start? Well, my OB thought I'd need a D&C to remove some remaining products of conception. We did an ultrasound, and they saw a little spot of something in the cervical canal, but the OB decided it wasn't worth doing the D&C. (a D&C would be risky for me now anyway because of my liver and clotting issues) I seemed to get a light period last week, but it was a brighter red than normal. Could have been the stuff they saw on the ultrasound. Then the bleeding stopped. Now it has started again. The OB has no idea what to make of any of it.

Next, my liver enzymes are still testing the same (crappy), which isn't good. The liver specialist wants to see some improvement by now. If he doesn't see improvement soon, he feels I should have a liver biopsy done. This is also risky. I had more bloodwork done yesterday and am praying that we'll have some better results. I'm not nearly as yellow as I was when I got home, so something with the liver must be working.

I saw my general practitioner yesterday and he said my urine is full of bile still and "looks absolutely awful," and he again emphasized how surprised he is that I'm alive. Ugh. Getting sick of hearing that. He also has nothing to tell me treatment wise. We're supposed to just sit and wait for my body to heal itself.

I have an appointment with a surgeon today to assess my abdomen, which is still the size of a small kick-ball. When I lean back, you can see all of my intestines moving. It is truly gross. The docs thought I might have a major hernia, but we did a CAT scan last week and it didn't show one. The stomach muscle may just be stretched super thin from the twin pregnancy and subsequent swelling. The surgeon today will assess whether I'll need the stomach muscle repaired in order to bring my intestines back into where they belong. If I do need surgery, I won't be able to have it done until my liver is healed. In the meantime, I have to be very careful not to lift anything heavy or let anything hit or compress my stomach.

Finally, to the last item occuppying my time--Die Hard. H got all three of the original movies on DVD for Christmas, and we've been watching them over the past two weeks after the boys have settled down for the evening. Last night, my parents offered to babysit so we could go see Live Free or Die Hard. I didn't want to go at first--I was depressed about all the doctor's visits and I felt guilty leaving the boys, but I ended up really enjoying the movie. I highly recommend it. It made me laugh my ass off, and that is a hard thing to make me do these days. :)

Saturday, June 16, 2007


I've been living with H and the babies at my parent's house now for almost a month. It hasn't been easy for us or my parents, as you can imagine, but all things considered we are making the most of a difficult situation. My Dad and I are more laid back about everything, so I think it's affected us less than my Mom and H, each who like things "just so" and tend to get a little on edge when they don't have complete control over their living situation. I know you're thinking, "But, Emmie, you're a self-admitted total control freak!" Well, I'm really not when I know that there's nothing I can do about something, and logic dictates that I need to accept my situation rather than fight it. I need to be taken care of right now, and much as it sucks and much as it means being gracious about things that would normally drive me nuts, I know when it's time for me to let little annoyances slide off my back. Even if it means having to eat carrot cake or something. I wish H could be as understanding. He lets every little thing my parents do get to him, then he vents to me, and quite frankly, I'm sick of hearing it. Yes, we'd rather be in our own home doing things our way, but that just isn't an option right now.

While I still want to fill you all in on the rest of my hospital adventures and a better breakdown of my medical condition, today I'd like to write a little more about the emotional aspects of all this.

When I was in the hospital, I found it hard to listen to people tell me all about the babies. I just couldn't focus for one thing, and I was in so much pain. I wanted to know the babies were okay, and that's about it. It hurt to hear from other people what my babies were like...I should have been the one telling people these things. H had a priest visit me the Sunday I arrived at the next hospital, and I was able to talk about all of my feelings to him. It helped a lot. I felt my illness was a punishment for me wanting to do everything myself for the babies without my parents' and in-laws' help. Here I had gone out of my way to ensure I wouldn't need their help, and suddenly I'm so sick that not only do I need them to take care of the babies, I need them to take care of me, too.

When I was released from the hospital, I was still in very bad shape. There was really nothing more the doctors could do for me in the hospital though, so it was decided that my recovery would be better at my parent's house. In order to leave I had to prove that I could climb a flight of stairs, get in and out of bed, and step in and out of a shower. I demonstrated each of these things just once before being discharged. When I left, I was terrified that I wouldn't be able to function at home yet. My mind continued to be preoccuppied by how I would accomplish the simplest of tasks. The whole way home I repeated my plan to H over and over: "You pull the car up as close as you can to the door. Tell my Mom to keep the babies upstairs. Help me inside to the bathroom. I'll go to the bathroom. Then get my pillows and help me sit in a chair. Once I'm sitting then bring down the babies." I kept repeating this over and over, terrified that I wouldn't be able to make it to the door, that I wouldn't be able to control my bowels during the hour-long car ride, that I wouldn't be able to climb the stairs to go to bed that night. These simple tasks literally took all of my energy. Being able to stand in front of the sink and brush my teeth and wash my face on my own was a huge accomplishment that night.

So of course, being in that shape, the most I could do with the babies at first was hold them while I sat. When I first held both of them in my arms after getting to my parent's house, it was wonderful. The three of us sat there for 2 hours. The next few days though, I couldn't help but feel extremely detatched from them as I watched H and my parents care for them "their way." I felt like a complete stranger to them. I wasn't their mother. And there was nothing I could do to insert myself into the situation. I just had no strength. H would offer me a baby to feed, and I'd have to decline. I worried that I didn't have any feelings for them. I didn't have any feelings at all. I was an empty shell...a deformed version of myself. I couldn't kiss them--I had a cold sore on the paralyzed side of my face and there was concern that I could pass on a viral infection.

As my mind slowly started to come back I couldn't help but feel bitter looking at pictures that were taken the day the babies were brought home from the hospital..Mother's Day...a day I was so sick I don't even remember it. In the pictures I saw my in-laws and H, laughing, smiling, holding my babies in my house without me while I was fighting for my life in the ICU. Oh, the bitterness. I even felt angry at H.

to be continued...

Tuesday, June 12, 2007

We Now Take a Commercial Break...

For some much needed positive news!

My sister had her baby last Wednesday, almost exactly one month after the boys were born, and she is beautiful!!!! Everything went well and my sister is doing fine. I was well enough to visit her and the baby in the hospital last week, and last night she brought the baby to my parent's house so all three babies were together. What a zoo! We got some fun pictures and enjoyed the symphony of baby cries (for the most part :)

While I'm on positive thoughts, I want to note some of the wonderful things that have come out of my almost dying. (Yesterday I had 3 separate doctors tell me how they can't believe I survived, so it's kinda funny that I can now say I almost died and know that I'm not just being my usual melodramatic self.)

1. A big source of pain in my life is that I've never heard my mom tell me that she loves me. She had never said the words to me. I've always felt that she much preferred my sister to me. Well, my mom was an amazing caregiver to me in the hospital. She sat with me for hours while I slept, spoon-fed me food when I couldn't do more than open my mouth, and countless other things. She soothed me when I had panic attacks. Most importantly, she told me how much she loved me for the first time. Even though her actions already showed all that love and I knew that she loved me, it was really something to hear it.

2. A cousin of mine (my dad's sister's son) has not spoken to my parents or me and my sister in 7 years; it's a long story. Well, when his mom, my aunt, told him what happened, he called her every day for updates on me. Finally he wrote my dad, and apologized for all the years of silence, and asked that he and my dad could talk in order to put the past behind and be family again. My dad, who never had any issues with him in the first place and had hoped for years that he would come around, immediately embraced this chance to talk to him. This reunion has been wanted for so very, very long by us.

3. There are other relatives that have been somewhat estranged, and they have all reached out to put differences behind and move forward.

Friday, June 08, 2007

The next week in the hospital

Before I continue, thank you all for your comments. I need to share this in order to start moving on. This experience has jarred me in ways I never could have imagined. Thank you, Jen, for the information about the support group. I will be visiting it soon. During my stay in the hospital, social workers would visit me in between all the other parades of doctors and visitors, and they would want to talk to me about postpartum depression and such. Well, at that time, sick as I was, I couldn't talk to them had I wanted to. I'm sure I do have some depression issues to deal with (who wouldn't??), but when I was in the hospital, I could only focus on one thing--reserving every bit of energy for healing my body.

I could only stare in disbelief at those social workers who would come in wanting to chat about my feelings while I was being given blood products because my body was shredding all my red blood cells, being fed nutrients through an IV, and had yet a third bag attached to my body to drain fluid from the C-section incision site. (Ironically in all this, the C-section incision healed beautifully within a week of the procedure, you can't see it, and I never even felt it.) I was hooked up to oxygen and covered in electrodes to monitor my vital signs. My thoughts were on getting through the next painful test and whether I would have the assistance I needed when my bowels would begin to demand immeditiate release. It took two nurses to get me in and out of bed to use the bathroom. I had to have all of my bags of fluid hooked onto the walker they helped me use, and all of the wires attached to my body stayed with me after being unplugged. It was a long process to get me up and back to bed. Getting my massive belly positioned back in bed was very painful, as the nurses surrounded me with pillows and foam props to try to minimize my pain and help me breathe. I couldn't lay on my back because the weight of my stomach crushed me. I had to be carefully positioned on one side or the other, and once I was propped that way, I couldn't move without assistance.

Over the course of the next week, the doctors tried every test to determine whether I had HELLP Syndrome , Fatty Liver, or something viral that was causing all of this. The problem was (and still is), that I showed many signs of both HELLP and Fatty Liver and nothing was clear cut. The cure for HELLP is delivery, and here I was, delivered but getting worse, not better. Or at least, not getting better at the rate that would be expected for HELLP. All the fluid that had been removed from my abdomen had built back up. My jaundice was not improving. My white and red blood cell counts were still bad. My arms and legs were so swollen they looked like tree trunks, and my fingers and toes were like sausages sticking out of my huge hands and feet.

After a few doctors who saw me thought I was just a "big" girl to begin with, not recognizing the severity of my swelling, my Mom stuck a picture of me and H pre-pregnancy on my bulletin board with the baby pictures she had brought. One of the nurses saw it and asked who the girl was with my husband. I thought she was joking. When I answered me, she looked down at me with the saddest eyes and said--"Oh, must be in there somewhere. Don't look in the mirror, okay?" I didn't. I was spared seeing what I was like at my worst. It must have been pretty awful because when I finally did see myself 2 weeks later, I was still horrified. And that was after everyone had told me how much better I looked.

There wasn't much more the hospital I was in could do for me, so it was recommended that I be transferred to a tertiary care hospital where more specialists would be available to examine me. When a bed finally became available there, ten days after I had delivered, I was transferred by an ambulance. This part truly felt like a movie. With the sides of my abdomen spilling out on either side of me, I was carefully moved from my hospital bed to a very narrow stretcher and loaded into an ambulance. It took 2 men and 2 women to move me. H rode with me but up front, because a nurse had to monitor my vitals the whole way. I was continually given morphine during the hour trip for the pain. I spent most of the time with my eyes closed, trying to block everything out, thinking only that I had to get better for the babies and H. Whenever I was in pain or going through a difficult test I did this--just sort of retreated into myself.

The days following the birth

I remember very little about seeing my boys the next few days after their birth as I got sicker and sicker from my liver not functioning. They had to pull a few strings to allow the boys into intensive care. When they brought them to me, I asked for Baby A first, since I hadn't seen him. I took a few moments with him, then they handed me Baby B. H asked me who would be who, namewise. I felt Baby A was Zach and Baby B was Alex. H said he had come to the same conclusion on his own. Then I remember the lactation consultant coming in and helping me try to breastfeed. That's when I thought I was out of the woods and just getting better. Luckily, as I got sicker and they began putting me on medications that would affect my breastmilk, I denied the lactation consultant's attempts to have me still pump and get my milk to come in (they were planning to just throw it out until I was "better"). "Better" was not coming as soon as it would have in a "normal" case of HELLP syndrome or Fatty Liver (I showed symptoms of both issues), and had I needed to be pumped on a regular basis in addition to the constant battery of tests they started running on me plus the excruciating pain I was in from my fluid filled abdomen and body--well, I just can't imagine it.

I continued to turn a darker and darker shade of yellow as the jaundice intensified. The whites of my eyes turned yellow. Friday morning, the left side of my face became paralyzed. I went for an immediate MRI to rule out a stroke. No stroke, it was Bell's Palsy. I had no idea--I did not look in a mirror until a week later. Had no idea about how my face now drooped, that I was so yellow, that even my face was swelled up like a balloon. As I filled with fluid, I was trapped in my body. The pressure from my abdomen swelling up to my chest was horrible. I could barely breathe.

H says I saw the babies every day until they went home on Sunday, Mother's Day. I only remember seeing them on day two. I have no recollection of Mother's Day at all. None. My mom says that was one of my very worst days of all, when the fluid that built up in my abdomen was so much that I began throwing it up and they had to puncture my side to allow some of it to drain. Three and a half liters were taken out. Although the liquid was removed, new liquid continued to fill in as the liver still was not processing it. I had a bag similar to my urine bag coming out of my side to allow the liquid to continue to drain. But it didn't drain faster than it continued to fill.

I was given morphine for the pain. I didn't want it. The sickenly sweet smell filled my nose and stayed with me. I had the most twisted, horrifying nightmares, and I began hearing things and making no sense when I was on it. Even though I didn't want to take it, I had to use it when they moved me from stretcher to stretcher for the constant MRIs, CAT scans and other X-rays. Every bump and jostle my body felt was horrible. I was a water balloon about to pop. When my bowels began working again, I had to have nurses position bed pans under me because I couldn't get out of bed. In addition to my abdomen being filled with fluid, it was filled with trapped gas that was making the pressure worse and needed to come out. This was next to impossible to get out without me being able to stand up and move some. The nurses and physical therapy worked with me to get me up a few times. I was given more morphine after I'd get back into bed. The pain and exertion was just too much. My mind wouldn't quiet. The inside of my mouth felt like pins and needles. I couldn't drink enough, and needed to be brought more liquids all the time. The nurses would bring tall cups with straws that I couldn't suck from due to the paralysis. I spent my time struggling to drink, go to the bathroom, and sleep in between constant doctor visits, blood draws, and tests. When people visited me I freaked out if they got too close or were too loud. My head couldn't take it. I had panic attacks.

My parents would tell me about the babies and I had a hard time listening. H brought me cards and I wouldn't be able to look at them. My focus was on my next breathe.

(Quick update about the present...I still am on a long road to recovery. I cannot care for the babies right now, other than to do occassional feedings and diaper changes. My condition is extremely rare, so for those of you with questions about HELLP, know that I am by far a worst, worst case scenario. I have been told not to have any more pregnancies because my risk of this happening again is high. But for someone who has a "normal" case of HELLP, I think a second pregnancy means you just get monitored more closely.)

Tuesday, June 05, 2007

Part One Continues...What I Didn't Know

My last post is my recollection of the day the twins were born and of what was happening to me. Here's what else happened that day. (Even today, I still had to ask H to tell me when things happened to me.)

When they started the C-section I was in complete renal failure. My liver stopped functioning. My bowels shut down. The day of the birth was the worst day for me as far as complications.

With my liver not functioning, I began to become very jaundiced, and every part of my body and abdomen began to swell with fluid that could not be processed. The swelling over the next few days became extreme. Fluid seeped from my arm at one point. I started the pregnancy 120 pounds. The day of delivery, I had been 172 pounds. Over the course of the next few days after delivery, I swelled to 198 pounds. I took on thirty pounds of fluid, likely more considering the immediate weight I lost with the removal of the twins.

Monday, June 04, 2007

The Dream Turned Nightmare, part one

I want to try to get out what I remember as best as I can in a stream of consciousness. Apologizing now for all typos and poor writing.

May 8, Tuesday morning at 3:00 a.m., feeling pretty awful. Get up to go the bathroom. Heavy watery discharge then the release of a lot of mucuos. The mucuos plug? Water breaking? Not sure. Wake H. Call the doctor. Doc says to come to the hospital to be sure. Needed to be there that morning early anyway for 12:00 planned C-section. Debated calling and waking parents. Decided to call them and let them know we were headed out.

By 4:30 a.m. hooked up to monitors in labor and delivery triage room. Nurse determines water had not broken, but contractions starting and very painful. Doc on her way. Told the C-section would be moved up to 9:00 a.m. H calls my parents with update--there already on the way. Doc arrives. Now it's sometime around 6:00 a.m. Suddenly told the C-section is going to happen now. I'm in the OR. Get the spinal. Painless. I hold H's hand.

Baby A (Zachary) is born at 6:35, 5 pounds 11 ounces and 19 1/4 inches. He is in some distress and is whisked away to the NICU. I didn't see him.

Baby B (Alexander) is born at 6:37, 5-10 oz and 19 1/4 inches. He is cleaned up and brought to rest on my shoulder. He sucks my face as I greet him--Hi, Baby! Then he is put in the incubator by my side for a bit. H has gone to check on Baby A, who is fine but being monitored. H goes back and forth between us. We're asked if we know the names for each baby. Say we have names picked but I need to see Baby A first to figure out who should be who.

I ask for an ice chip but am denied. They don't want anything in my system...something appears to be wrong. Doc tells me I may need a hysterectomy (which did not happen). I think...What?? Inside panic but too weak to ask why or what's going on. Whatever you have to do I say.

Everything goes black.

I hear a woman calling my name sharply. I open my eyes and see a doctor hovering over me that I don't know. She says in the same urgent voice--Do you know where you are?? I give the name of the hospital. Do you know what happened to you? I just delivered twins through a C-section I say. She keeps repeating, "No, do you know what happened to you? Do you know where you are?" Meanwhile both of my hands are being slapped by nurses on either side of me and I feel attempts at needles being poked into the veins. We can't get any veins they're yelling. I think that's odd--my veins are usually so good. The jab me up and down the hands and arms until finally they get IVs in both. Everytime I start to close my eyes my name is called sharply and I'm asked the same questions. I see bags of blood being hooked up. The doctor yells that they're going to need more blood products; there's no time to wait. I'm told I'm in intensive care in critical condition.

I have no idea what has happened. I now know my blood wouldn't clot and I was bleeding to death. I'm told they call it DIC. They were close to losing me. If it hadn't been for the ICU doctor's fast action...

Once I am stabalized I'm brought to a room in the ICU. I don't remember much of anything else about the day. I know I wanted to see Baby A so badly. I ask how he is doing and am so relieved to hear he is out of the NICU and is absolutely perfect. Both babies are strong and healthy. H promises to hold off giving the names until I've gotten the chance to see both boys and decide. He spends the night with them in the maternity ward while I'm in the ICU.

I grieve not seeing my first son the day he was born, but I am so happy he is okay.

Saturday, June 02, 2007

Where on Earth to Start?

I'm lucky to be alive. I'm lucky that my boys, Zach and Alex, were absolutely perfect after delivery and are showing no ill effects from my condition. I'm lucky to be out of the hospital to recover at home, where I can finally be with my family.

It looks like my diagnosis is HELLP syndrome, something that only happens in .02 to .08 percent of pregnancies. And evidently, I am one of the worst cases the doctors have seen. The "cure" for Hellp is delivery, and once you've delivered it's supposed to resolve quickly. Well, I delivered almost a month ago. Who knows how long recovery will take. I know Jamie at Sticky Feet has been giving updates through all this, so I'm not sure what you all may know about my condition already and what happened to me.

When I just reread my last post before all this went down, I saw the line about my mom having sympathy for my condition and how this means I might be about to die. It makes me shudder. I had a really bad feeling Saturday through Monday that something wasn't right, but all the signs I exhibited were really things that could have been perfectly normal ones for how far I was with the twins. If I had called the doctor on Saturday, it likely wouldn't have made a difference in what happened or the severity of it.

Anyhow, there's plenty of time to get into the nightmare that was my 2 plus weeks in the hospital.

I want to say a big thank you for the gift Jamie, The Woman Who Cried Pregnant, Lisa, Hopeful Mother, Jonesing for a Baby and Motel Manager sent to me. When I saw who it was from I was truly stunned and I cried happy tears. Couldn't believe you tracked me down in that hospital. It's funny that Jamie comments about the boys needing to share the teddy bear...a few hours after the package arrived, I received an identical one from a family friend. The first thing H and I said was--how perfect is that?--now the boys will both have their own bear!!!