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Monday, March 31, 2014

Seven Week hospital stay

Part 1: 7 week hospital stay

It's been eight weeks since my delivery and I finally feel up to writing about the experience. Some women with pregnancy complications like mine faithfully chronicled their pregnancy and feelings each week. I am not one of those women. To have written about it while it was happening would have made it too real. The ironic thing is that I promised Dode a “perfect” pregnancy. A pregnancy with no complications for me or the baby. I had myself convinced that it was not only possible but probable. Dode was never convinced. It turns out, he was correct.

I had a pregnancy that beat the odds. From my google research, only about 1/3 of the women my age are able to successfully conceive a child. In order to get twins, my odds were 1 in 30. 1 in 200 pregnancies are diagnosed with a placenta previa, less than 1/2%. Of those, 90% of the previas resolve before delivery, leaving 10% that don't, 0.05% of all pregnancies. Add one more complication, placenta accreta, occurring in 0.3% of pregnant women who have had one prior c-section. All those things in one pregnancy makes for a very rare pregnancy, and very scary pregnancy.

We've known since the beginning that we were experiencing a rare event. We felt very lucky to have gotten pregnant knowing the odds where not in our favor. At our 12 week ultrasound we found out we were having twins. At my age that instantly put us at a high risk pregnancy. It wasn't long before the pregnancy became even more complicated. At 17 weeks I was diagnosed with a complete previa. A previa is when the placenta implants with part of it covering the cervix. In my case, it completely covered the cervix and went up the front and back of the uterus. Previas complicate pregnancies because they can cause spontaneous bleeding. It is impossible to predict when the bleeds will occur or how much blood will be lost. The bleeding happens as the placenta pulls away from the cervix and is the mother's blood. If the bleeding is excessive, the baby  needs to be delivered to save the mother's life.

At 20 weeks I was diagnosed with placenta accreta. A placenta accreta is a rare complication where the placenta attaches too deeply to the uterus. It happens most often to mothers who have had a previous Cesarean delivery where the placenta attaches over the scar.  It generally happens only when there have been multiple previous c-sections.  Our little boy's placenta chose just that location. With this condition, everything is fine until the delivery. The placenta attaches so deeply that it is impossible for the placenta to detach at the delivery. Massive blood loss occurs when this happens. There are three classes of accreta: accreta, increta and percreta. They are based on how far the placenta has invaded. Accreta is into the uterus lining. Increta is into the uterus muscle. Percreta is through the uterus and into the abdominal cavity. From ultrasound scans, it looked like I had an increta or percreta. The treatment for all classes of accreta is a planned Cesarean delivery with a hysterectomy immediately following. Even with everything happening in a planned and orderly way, life threatening blood loss can occur.

As the information continued to come in, I was feeling increasingly burdened with the possible complications ahead. I started out with a family doctor who delivered babies.  When he learned I was having twins, he transferred my care to an OB.  At 24 weeks, my regular OB transferred my care to the University of Washington where their high risk perinatologist could manage my condition. We were able to visit with the perinatologist one time where she shared the typical plan for someone with previa and accreta but told us that by adding twins,we were really “off the map”, no one knew what to expect in the journey or final outcome. I was scheduled to come back in three weeks. Apparently my body didn't want to wait that long. I started getting a lot of contractions from just doing the work of daily life. I cut my activity level way down and spent most of my time on the couch. Even that wasn't enough to calm the contractions. At one point, I asked Dode for a timer so I could see how far apart they were. The worrisome part of contractions was that they made it likely that I would have a bleed because the placenta would be pulled during the contractions.

Around 5 pm on Sunday December 15, I got off the couch to go the the bathroom and felt fluid coming out of me. Once in the bathroom, it was obvious that I was bleeding. We'd been told that if bleeding occurred, we were to call 911. I lay down on the wet bathroom floor (Miriam had just finished showering and there were cold puddles of water everywhere) and called out for Dode. It felt like it was just minutes before the ambulance showed up to take me away. As I lay on the bathroom floor, I knew that these were my last minutes at home for some time. I wanted to see my children and get hugs before I left but I didn't think a pants-less bleeding mom on the floor was the last sight I wanted them to remember for a while!

We live too far from the University of Washington for the ambulance to drive me all the way there so the Arlington Fire Department ambulance took me as far as Providence Hospital in Everett where I would be evaluated and if stable, would be transferred to another ambulance service and taken to the University of Washington in Seattle. The one thing I was hoping to avoid had happened, my children saw me hauled off in am ambulance. It took William a few months before he started drawing any other pictures than me in an ambulance, two babies in a tummy that has a pool of blood coming from it. I got stuck in Everett for a few hours because the University of Washington had room for me but not for 26 week gestation twins.

It was a nerve wracking time. I knew that the safest place for me to delivery was the UW. If there was no room at the UW, we'd be dealing with a much more risky surgery in Everett with doctors who were not as experienced dealing with my complications. The doctors in Everett also weren't too excited to have me on their floor.  They knew my complications were risky and they didn't have the ideal set up for me.  It was a huge weight off our shoulders when the UW called Providence to let them know they'd made room in their NICU for our babies if they had to be delivered that day.  The anesthesiologist walked by as I was being wheeled out and said, "That's the best thing I've seen all day!"

When we got to the UW it was around 9:00 Sunday night. They began evaluating me and plans were put in place to secure an operating room if needed. I was visited by many different doctors and the anesthesiologist. To say it was stressful is an understatement. I was at 26 weeks. The babies could survive at that age, but it would be complicated and the babies surviving would questionable. I was admitted to the labor and delivery part of the unit because they weren't sure how stable I'd be. After a few days, I was transferred to antepartum, where I would remain until I delivered the babies. Some moms who have their first bleed with a previa are allowed to go home after one week of no new bleeding. In my case, with the placenta accreta, it was too dangerous to allow me to go home. The goal of the doctors was to get to 35 weeks.

Things were pretty quiet at the hospital and I slowly got used to a new routine. People would ask me if I was lonely, but in reality, I felt like there was always someone coming into my room. On a typical day I would see: the nurse for hourly check ins, housekeeping, doctors 1-2 times, the food delivery people three to five times, the nurse assistant who checks vitals every 4-8 hours depending on how I'm doing and gets ice water for patients. Add in social workers, dietitians, physical therapists, regular blood draws, the nurse manager, spiritual care, psychologists, doctors from different specialties (Obstetrics, Gynecological Oncology, Urology, Neonatolists, Anesthesiologist), volunteers delivering mail and emails from friends. Add in some visits from friends and family. My door was opening all the time!

The hospital stay obviously wasn't just difficult for me. Dode had to deal with being a single dad with a wife stuck in the hospital over an hour away from home. It was rare that we had any time alone, if he came to the hospital he almost always had the kids with him. Even when we'd talk on the phone late at night, he'd be interrupted by children coming into the room and needing things. It's difficult to be “on” 24 hours a day! The children's school work definitely suffered while I was in the hospital. I asked little 8 year old Miriam why her reading grade was so low and she told me, “It's pretty hard to concentrate on reading when your mom is in the hospital”. Those sentiments were shared by all the children. Isaac took advantage of my hospital stay to exercise some independence and went from attending an alternative high school for home schoolers to the traditional high school. Elizabeth saw his success and decided she'd do the same, only she wanted to withdraw herself from attending school part time and become fully home schooled. We explained to her that it wasn't the best time for that.

My hospital stay coincided with the busiest part of the year for our family. Christmas plus four birthdays. We celebrated them all in the hospital. The staff told us to make ourselves at home. I'm not sure that they had piano keyboards, violins and extended family celebrations in mind when they told us that! Dode brought our full sized electric piano in for Anastaya to play on when they visited. He found that it fit perfectly in a snowboard bag. The piano ended up making several trips from home to the hospital. The nurses complimented us quite a few times on how we were coping and how well behaved the children were.

12/26/13

Two weeks after being admitted, on New Year's Eve, I woke up in the early morning hours bleeding heavily.  Instantly my room went from a dark quiet room with one occupant to a room with bright lights and many nurses. They started multiple IVs (with extra pokes because its tough to start an IV on me), summoned doctors, prepped me for surgery and transferred me to the labor and delivery side of the unit and the doctors began evaluating if I'd need to be delivered. I was only 29 weeks along and was much more worried about the health of the babies than my own. I eventually stopped bleeding and they estimated I'd lost about 400cc (about 1.7 cups of blood).

Toward the evening I thought we had made it and a delivery was unlikely when I started having regular contractions 5 minutes apart. They told me that blood is irritating to the uterus and that was causing the contractions. If the contractions did not stop, I would have to be delivered. They offered to deliver one baby in 2013 and one in 2014 if that would sway me to consider delivery. I was adamant that the babies were too small and I would do anything to remain pregnant. I was on a medication called magnesium sulfate. In the “dark ages” when I had pre-term labor with Isaac, they used magnesium to stop contractions. They no longer use it for that, they give a tiny dose that has been shown to be a neural protection for the baby. I asked if they could up my dose to get rid of the contractions and although they told me it was voodoo science, they were willing to try. I spent three days in labor and delivery on mag to give my uterus time to calm down and to see what my body would do. When things stayed calm, I was allowed to go back to antepartum and ended up in the same room I'd left three days earlier.

The New Year's Eve bleed ended up being the most serious bleed of my pregnancy. I eventually lost count of how many times I bled. In the beginning, I would call Dode and he would drive down to the hospital in case we needed to deliver. Once that had happened a handful of times, I was able to gauge how severe the bleeding was pretty quickly and would send him an email when it began and when it was over. We had one more close call where I had a heavy bleed but we were able to make it to the goal, adjusted from 35 weeks to 34 weeks because of all the bleeding. Almost all my bleeds happened between 3:00 am and 6:00 am when I was on my way back to bed from the bathroom. It got to where I had to psyche myself up to get out of bed and go to the bathroom during those morning hours. At one point towards the end, I was having small bleeds twice a day.

Thankfully with all the bleeds I had, I only bled twice when the children were here. It's one thing for Dode to tell the kids in the morning, “Mom had another bleed last night but she's fine”. It's another thing when I call through the bathroom door, “Dode call the nurse, I'm bleeding” and he has to quickly hustle the kids down to the waiting room. It was classic the first time it happened. He was trying to round up children, nurses were rushing in to work on me and Anastaya resisted and barked, “I have two paragraphs of homework to finish!”  The nurse backed up Dode, “Children, you need to go NOW”, and she flounced out of the room in a huff. Someday I'm going to tease her about it.

1/05/14

1/15/14
1/22/14

1/30/14

We did several things to try to make the hospital less scary for the children when they visited. My mom purchased decorations and filled my room with colorful streamers, pom pom balls and butterflies. We brought in fun snacks (jello was the big winner) and stocked my refrigerator and drawers with them. This became a problem when all William wanted to do the entire time he was there was eat junk food. We had art supplies and puzzles to do. My mom made paper butterflies with a special punch, one for every day I'd be in the hospital if we made it to the goal date. She hung them all on a ribbon spanning across my window. Each day with the children would come visit, they'd move a butterfly from one side of the ribbon to the other.  It was a butterfly abacus! My mom let us keep her extra ipads at the hospital. When the children would come visit, there were three ipads to keep them entertained. Dode would also take Miriam and William exploring the hospital. It was a huge complex with many buildings all connected together. They loved finding new staircases to climb and new areas to see.




view from my bed
Time really does stand still in the hospital, at least in my room. The clocks on the wall were hard wired into the hospital. Each hour, the clock gets some kind of signal from the master clock where it synchronizes. I heard a hum while it is being adjusted. Sometimes it's too slow and the seconds hands goes a bit fast for a while. Other times, the clock is too fast and the second hand literally freezes in place.

view from my bed, looking a bit to the right

The kids signed and drew on this piece of poster board to cheer me up.
I love Miriam's messy hair in the photo.  She sported this look a lot.

ceiling decorations
cards from my primary class and Miriam's school class. My butterfly abacus is under the cards.  Do you see the view out the window?  Just more hospital buildings in all directions.

I don't know if I'm unusual, but I get a lot of pleasure from looking out the window. At home, we are fortunate to see trees from all four sides of the house. Here at the hospital, my only view was of other wings of the hospital. There was not a tree, bush, patch of grass, puff of wind or animal to be seen. After being here 5 weeks, a seagull flew by my window and it was such a joy to see that I cried!


Close up of the butterflies.  The long row of butterflies is the half way mark.

I don't watch TV so we put our family photo in front of it.

My family was amazing at visiting me. Dode only missed four days in the seven weeks. Between Dode and my mom, I only spent two complete days with no visitors. We were fortunate that once I'd been in the hospital for a week, winter break began. Dode had a long furlough at work and was able to be home with the children or bring them to see me.

I always craved their visits even though my room could be chaos. Put 8 people in a hospital room that only provides seating for 3-4 visitors, add in that 2 of those visitors are young children and the rest are adult sized and you can imagine that we were tripping over each other. The best times of their visits when we just engaged in normal family life. Some people would be reading, some doing homework, watching a show, playing the piano, taking a nap. It felt normal and wonderful. We had to have rules for who could be in the bed with mom and for how long. There were times when there were 5 people on the bed: one on either side of me and two at the bottom draped across our legs.




Isaac found a spot on the floor between the bed and the couch.

If someone had asked me what a person could get done during a seven week hospital stay, I would have told you, A LOT! I found the reality to be quite different. Although I spent hours alone each day in my hospital room, I was so anxious about being able to stay pregnant that I was unable to concentrate on books. I would spend hours just staring off into space. I played soft music and spent most of my productive time making Christmas stockings for the twins. I learned to knit and made some wash cloths. I used Sudoku puzzles to determine how stressed I was. If it was a hard day, I'd find myself making lots of silly mistakes. I enjoyed every kick and movement from the babies and spent a lot of time trying to think positive thoughts.

The hospital did things to try to make our hospital stay easier. There was a weekly art group that patients could attend. In my seven weeks there, I got to go twice. It was always held on Thursdays and I had a lot of bleeds on Thursdays for some reason. There was also a support group for the moms on antepartum. They had spiritual care staff who would come and talk with patients. At first I was reluctant to have them come, I didn't want someone trying to convert me to their religion. I found that they truly focused on SPIRITUAL care, the care of my spirit. We talked about ways to deal with stress and uncertainty. It was also someone who I could share my heart felt fears with and not worry that I was adding to their burden, like it would be if I vented to Dode or my mom.

Greg and Gary came and performed a guitar concert for me.


attending art therapy

knitting a wash cloth

Jacob bought me this for Christmas.  I drank at least two full bottles a day.  I always asked for it to be filled to the top with ice and then water added.

This little fan was a life saver.  I was very overheated even if the room was cool.  Without the fan, my nightgown would be wet with sweat and sweat would run down my sides.  With the fan I could stay comfortable.  It blew on me 24 hours a day for seven weeks.

I was thankful for every day I was able to remain pregnant. We made it to our scheduled delivery date. As we got close, the doctor confided in me that she never really believed I'd make it that far. I'd had so many bleeds, they were sure the babies would have to come earlier. I had mixed feelings as we arrived at the delivery date. Thankfulness that we'd made it that far but grief and guilt that because of complications with my body, my sweet babies would have to be brought into the world early. I knew they would be born before they were ready and would need to spend time in the NICU. I knew I would never again get the feeling of a baby moving within me. I was terrified for what would happen during the delivery. I just wanted to stay pregnant forever! Since that wasn't an option, I had to try to be as happy with possible at making it to our goal date, January 31st.

one week left

To say it was a growth experience for me is quite an understatement. I had blessings but not once did they promised healing, or safe babies. Instead, I was blessed with strength and with the ability to still be a mom, even long distance. Sometimes I wonder why sending twins to a mom over 40 wasn't enough of a growth experience for me but I know that's a different type of test, one we are just beginning. The test He had for me at present was to show me the gaps in my faith and ask me to fix them. When confronted with my own mortality, the burden I refused to hand on to Him was total submission to His will. That if it was His will that I not pull through, I was OK. I wrestled with it over and over, asked Him to help me. I never got there. In the end, the closest I got was to be able to say, “Help me to want to submit to your will.”  I'm here today to write this, proof that I didn't have to make the ultimate sacrifice for my children.

Stay tuned for Part 2: Delivery Day and Part 3: Recovering