Friday, October 28, 2011

Life rarely goes as planned

The last ultrasound I had in early October, showed signs of Symmetric Intrauterine Growth Retardation which basically means the baby may not be growing right. When I saw my doctor on Oct 24th, he mentioned that if the baby did have IUGR, we would have to consider terminating the pregnancy. The doctor mentioned termination as cooly as if he'd just asked us out to lunch!! My husband and I looked at the doctor like WTF?!! The doctor explained that terminating meant an early delivery, not aborting the fetus. PHEW!! At 30 weeks gestation, the fetus was viable outside my womb, but I wanted to keep the baby inside as long as possible.

That same day, I also went for a consult with an anesthesiologist to see if I could have an epidural or spinal injected into my back so I could have a vaginal delivery. What I was told at the consult was the last thing I expected to hear. If anything, I thought doctors would be hesitant about inserting a needle into my back because of the physical implications of Cerebral Palsy. However, the anesthesiologist was concerned for me on a neurological level, since I also have Dandy Walker Malformation, a rare congenital brain malformation involving the area at the back of the brain that controls movement and the fluid-filled spaces around it. The anesthesiologist's concern was the unknown about what could happen and he was worried about possible neurological damage following a spinal insertion. He was also concerned about the possibility of too much pressure on the brain, since I already have a larger amount of fluid in the brain than a normal person and having the epidural could increase brain pressure and cause neurological damage

The anesthesiologist's recommendation for delivery was a C section under general anesthesia, which meant I'd be asleep during my baby's birth. It also meant surgery and I never want to go through surgery again after having so many. What sucked even more was hearing that my husband couldn't be present during the C section since it would be under general anesthesia. My husband was near tears hearing he would miss his baby's birth. Because not much is known about Dandy Walker Malformation, the anesthesiologist agreed to thoroughly review my case with other doctors and let me know what they thought safest and best.

My other option is to try for a vaginal delivery without an epidural or a spinal. I nixed that option because I'm not THAT strong=) We left the consultation very disheartened. Gone were the images I had of a normal birth and welcoming our baby the way most people do, but one thing the anesthesiologist said made me laugh. He said the fact that I have moderate scoliosis is actually a blessing, because it is what's keeping me upright. If I didn't have the scoliosis, I wouldn't be able to stand at all, so I just thought it funny that a spine deformation is a really good thing in my case!

Finally after a long and emotionally draining day, we headed home. As we pulled up to a gas station, I started laughing. My husband asked why I was laughing so hard. I told him I found it funny that again I was in the minority. For one, Dandy Walker Malformation is rare. Two, I was in the 1-2% of patients who was undercorrected following eye surgery back in 2002, and lastly if my baby did have growth issues, those also only occured in 10% of the population! Was I missing a message here or something??!! My husband said I'm unique. I don't want to be THAT unique thank you very much! In the midst of my laughter, I got an email from my OBGYN saying that after consulting with the anesthesiologist about my condition and the possibility of the baby suffering in utero if it wasn't growing correctly, he wanted me back in the hospital that night for closer observation over a few days. My laughter immediately turned to tears as I showed my husband the email. I was scared for my baby.

My husband stayed with me in the hospital till I was settled in, which included blood tests, a urine culture and monitoring baby's heartbeat. By the time he put me to bed in the GYN unit, it was after 2 AM and he was exhausted. I was petrified of being in hospital, but I tried to be brave, said goodbye to my husband and tried to sleep, but sleep eluded me.

I was trying really hard not to freak out, panic and hyperventilate that I was spending one night maybe more in a hospital.  I wanted out now!! I also wished my husband was with me. I was in a room with 5 other women but I felt like the only pregnant one since I was constantly getting up to pee and in between I was munching on food. Everyone else was sound asleep. Because I was admitted so late, I got the center bed which had no electricity outlets by it which sucks because there was no way I was getting a wink of sleep and the one thing which kept me from totally freaking out, was IM'ing with my sister. I struggled to keep my eyes open but the feeling of panic and fear were winning over....sorta....eyes closing. God please let my baby be ok. It's certainly kicking me enough! I finally got some sleep and before I knew it, I was woken up at 530AM to have the baby's heartbeat monitored. 530 AM??!! really? can't we do this later?

fetal heart monitor

 Over the next 2 days, I had detailed ultrasounds done to rule out any growth issues. Thankfully everything was fine. The baby's heartbeat was monitored twice a day and birthing options were also discussed again with my OBGYN and another doctor. One doctor asked me to open my legs as wide as I could so he could see if I could have a normal birth, but apparently I'm 10 degrees short of being able to open wide enough to deliver vaginally. They said a vaginal delivery wouldn't work even if someone held my legs open.  I asked about different birthing positions, but was told it wasn't really possible. However, if I wanted to try for a vaginal birth, it would have to be without medication and in the end if it didnt work out, I'd need to be rushed to a C section, so why wait to see if something goes wrong?

I understand the doctors position, but at the same time, I want to make sure I explore all my options and my OBGYN understands that. He set me up for an orthopedic consult next week to see if I can physically try for a vaginal birth. I'm also reading a book called The Disabled Women's Guide to Pregnancy and Birth. In that book are the experiences of 90 women, all of whom have disabilities worse than mine. I'm talking major spinal injuries, paralysis etc, and a majority of the women had vaginal births with medication, so why in my case is everyone saying my only option is a C section under general? I understand that every case is different and the main concern in my case is the Dandy Walker Malformation, but I want to go into the birth-whichever method I decide on-knowing that I exhausted all my options, so I'm trying to find any cases of people with Dandy Walker Malformation who delivered vaginally with medication. However at the end of the day, I will do what's safest and best for my baby and myself. If that means we miss the birth and I have a very hard recovery, so be it, as long as we have a happy, healthy baby at the end.

Friday, October 7, 2011

Pregnancy:exercising & expectations

It's week 27 of my pregnancy and I'm just blogging about it now, but better late than never right? It's been a crazy summer. We didn't have a home for two months, so blogging about my experience as a pregnant woman with Cerebral Palsy was the last thing on my mind, although I will blog about my pregnancy experiences during that time later on as they were important.

I have a mild case of Spastic Cerebral Palsy, so I walk with a limp and my left hand is weaker than my right. But thankfully, I walk on my own and don't need any medication for spasticity or other issues.

I was born 3 months premature, weighing 800 grams! My mom says I was born at 26 weeks, so now that I'm at week 27, every week I keep my baby inside me is sort of like a victory. Rationally, my doctor said I don't have any reason to worry about a premature birth, but whoever said emotions were rational? Still, I'm operating on the safer side and I'm staying home and taking it easy as much as possible, which truthfully has been drilled into my head from my mother from the second I told her I was pregnant=) can't live with them and you can't live without them! But my growing belly isn't making it easy for me to walk and since I had balance issues before the pregnancy, you can imagine I'm more than a little off these days because of my belly. I have taken some falls which always scare me and sometimes have me running to the doctor or hospital because I'm worried something has happened or will happen to my beautiful little miracle I'm housing, but I have a resilient litter bugger in there=)
27 wks

Before I got pregnant, I was in the gym three times a week since it's very important to keep the muscles limber and the body strong, especially with a disability like Cerebral Palsy, which in my case gives me tight and loose muscle tone. Now that I'm pregnant and taking it easy, I'm trying not to bounce off the walls from boredom and more importantly inactivity. Because I'm not doing any exercise, I'm having quite a hard time just moving around because my muscles are so tight, and since I'm carrying low, it's really difficult to stretch my legs properly, so I kinda feel like damned if I do, and damned if I don't.

I did try a yoga class where all the exercises are done in a chair so it makes the exercises easier for people who have mobility or other physical issues. I was a bit nervous at first since exercise classes don't usually work for me, because while everyone else in the class is on step 3, I'm still trying to figure out how to do step one and I can assure you it's a painful endeavor to watch me try and figure out how to do the exercises! so I was excited about the chair yoga class because I was told it wasn't going to be difficult, but I did have some issues because my range of motion really is nil right now, especially my legs and left foot, but I did what I could and I may go back for more even though the whole yoga breathing and visualization thing doesn't really work for me. I inhale when I'm supposed to exhale and vice versa. I don't know why. I'm also not the sort of person who has the patience to take my mind to a peaceful place or a babbling brook, although I know the breathing and visualization is important in focusing I just want to do the exercises! Plus, I can't imagine I'm in a peaceful place when it's 100 degrees in the room, no AC and no open windows!

My next trial is most likely going to be going swimming although I know I may get stares and questions from people since I usually look like I'm drowning when I'm swimming. Someone did ask me a few years ago when I was in the college pool if I was OK and I said yes. He said I looked like I was drowning! I swallowed my embarrassment and explained that I have Cerebral Palsy, which is why I don't exactly have the greatest form when I swim. The man, a retired surgeon, offered to help me swim free of charge once a week and it was very beneficial. Who knows? if I go to the pool here in Israel and someone asks if I'm drowning, maybe I can get the same type of help I got in college! but the point is that I have to do some exercise, otherwise I believe a vaginal birth will be quite difficult for me.

Speaking of birth, now that I'm two-thirds of the way through my pregnancy, I'm getting a bit scared and I'm not just talking about the normal fears a woman has the first time she gives birth. I'm talking about fear of just being in a hospital. I have had 10 surgeries throughout my life to correct orthopedic issues, so I've spent a fair amount of time in hospitals and operating much time that I freak out by just walking into a hospital, even if it's just to visit someone. My heart starts hammering away the second I smell that hospital smell. I have to remind myself to breathe normally once in the hospital because all the times I spent in hospital as a child and all the pain I endured comes rushing back to me and I want to get out of the building as soon as I can. I always had this vision that I would be excited at the miracle of giving birth, but last night I lay wide awake in bed at 3am, curled into a little ball while trying to breathe normally because I was petrified of the idea of having to go back in to a hospital, even for a happy occasion. I'm hoping I can have a vaginal birth, because being in a normal hospital room as opposed to an operating room for a C-section will be far less traumatic since it's a surgical procedure and I HATE operating rooms. When I asked my doctor if I could have a natural birth, he said no and wouldn't explain why when asked. After going back and forth a few times, my husband said "I think she means can she have a vaginal birth" The doctor said oh yeah, 80% chance!" I said "what did you think I meant? a birth without an epidural?? Yeah right!"

Thursday, October 6, 2011

Homeless & pregnant

My husband and I moved out of our apartment at the end of June 2011. I was in my first trimester of pregnancy. Having to move came at a really inconvenient time. I had miscarried my last two pregnancies in the first trimester, so with this pregnancy I wanted to be very careful and rest as much as I could until I passed the 3 month mark. Moving apartments was so not conducive to taking it easy. Not only that, but the day before our move, we decided not to move into the apartment we had chosen, which really turned out to be a blessing in disguise since the landlord was a wack job! So all of our furniture and household items were packed away and moved to storage, Doggie was placed in a kennel and we temporarily moved into my brother's recently vacated apartment he had rented while in Israel. We could only stay in the apartment a few weeks since new tenants were moving in. We thought we'd totally find a place within a few weeks. We ended up homeless till the beginning of September.

Searching for the appropriate apartment became a lot more difficult now that I was pregnant. I needed to think of how I could get around the apartment and surrounding area as easily as possible with a baby, let alone on my own. My criteria for an apartment was a stand in shower, not a bath for several reasons: with a growing belly, I knew lifting my leg to get into a bath would be difficult. Also, having balance issues, separate from the pregnancy, a bath which has limited standing room would affect my balance and I'd be more likely to fall. Add the water to the equation and we have a problem. The other issue were stairs leading to, from or inside the apartment. On my own, I can handle stairs as long as there is a railing, but with a baby, there is no way that I can maneuver the stairs with a baby or a stroller and it is very important for me to maintain my sense of independence once I become a mother. I wanted to have the option of taking my baby out for a walk in the stroller on my own. I don't want to have to depend on my fully able bodied husband for EVERYTHING to do with baby care. If I couldn't get out of the apartment, or get around the apartment on my own, I'd feel like I was in a prison, which would make me miserable and depressed and I'm sure it would negatively impact my marriage. Additionally, if the apartment was above the ground floor, an elevator was a must.

Finding all the components I needed in an apartment was a lot more difficult than we anticipated. The majority of apartments we saw, or were shown by an agent, had a bath instead of a shower. There were also stairs and/or no elevator. We drove to so many different cities and kept coming up empty handed. Not only that, but it seemed as if none of the real estate agents were listening to our needs. We were consistently shown apartments which weren't good for me. At one point, I almost blew up at the agent who showed us a place with a high, narrow bath and a lot of stairs leading to the apartment. We had driven 30 minutes to see this place and I had told the agent numerous times on the phone if any apartment had stairs and a bath, not to waste our time, so after driving 30 minutes, I wasn't impressed that we were shown an apartment which clearly wasn't suitable. What's more, the agent was standing in the apartment smiling from ear to ear, so proud that he had found us this place. The only reason I didn't start yelling at him or storm out was because my husband gripped my arm and shushed me, but man was I pissed! Why couldn't any of the agents understand what my needs were?! We desperately needed our home already because we were living out of a suitcase and a few boxes. We were both also unemployed, so all the driving to different cities to see apartments, and all the eating out since we had nowhere to cook was quickly adding up. Not to mention having to pay for our stuff in storage and the dog kennel.

In the meantime, we had to move to a friend's house temporarily once we left my brother's apartment. In between the apartment searching and house hopping, we made two visits to the ER from falls I had taken and I don't have to tell you that a visit to the ER is never short. I knew getting stressed wasn't good for the baby, but I had a very hard time keeping my stress level down. None of this was easy on my husband either and I could see how worried and upset he'd get when I'd fall. I knew he was worried about me and the baby as I was whenever I'd fall. Sometimes I felt guilty for being disabled and pregnant at a time when we were already under so much stress. I felt I was putting my husband under more stress whenever I wanted to go to the ER or to a clinic to check on the baby after a bad fall but my husband being the amazing man he is took everything in stride.

As everyone knows, families love putting their two cents into your life and my family was no different. I knew that my family only wanted the best for me, especially now that I was having a baby, but I felt like they were controlling my life instead of just offering advice. My family and my mom in particular thought that just because I have a disability, my pregnancy is high risk and it's a miracle that I'm pregnant. I got several emails a day asking if I was resting. I stopped responding after awhile=)

My mom also thought that I needed to be near my doctor, the hospital and a pediatrician at all times. No matter how many times I explained to my mom that in Israel, a midwife delivers babies instead of the OBGYN, and I could go to any pediatrician in my health fund at any of the clinics in Israel, she insisted we stay in Jerusalem where my OBGYN is and most likely where I will have the baby.

My mom was helping us financially since we were in such a bad situation, so she kinda did have a say on the location and type of apartment, but she was driving us nuts! The way she saw our situation was find a temporary apartment in Jerusalem for a year, have the baby, let it grow and then make a decision on where we wanted to move and possibly even buy. The way I saw our situation was that moving is such a headache and such an expense, why would I want to move again in a year and this time with a baby?? We wanted to find a place we could stay in for a few years if we were happy. Eventually my mom sort of gave in and stopped asking, but the one time I think she went way overboard with her concerns really sent me over the edge. We found an apartment outside of Jerusalem we loved and although the apartment was two floors, there was a bedroom and toilet on the ground floor so we thought it was perfect because we could live on the ground floor so I wouldn't have to use the stairs if I didnt want to. My mom was adamant we not take the place because of the stairs. I was so upset. Why couldn't she have a little bit of faith in me and my abilities? My whole life I overcame challenges no one thought I could and now I was married to a fully able bodied man which surprised everyone. Why now after all these years couldn't she see that I could make my own decision when it came to my abilities?? We argued and I was in tears for awhile.

I just couldn't handle all the stress anymore. We were now staying at my aunt's place and we were sleeping on a pullout couch. No mattress, just the couch. I was barely sleeping because I was so uncomfortable. I just wanted our own place already. I even had horrible thoughts against my baby. I thought it'd just be easier on everyone if there was no baby because we would've probably found an apartment already and get everyone off my back. I also thought that if there was no baby, my husband could find a woman without a physical disability and all this stress. Having those thoughts about my husband only made me cry more, but as it happened, he felt the baby's kick for the first time that night. Sharing that moment with my husband was so wonderful that I couldn't believe I was thinking of letting him go.

In the end, we didn't end up taking the apartment with inside stairs for various reasons. Also, I realized my mom had a good point about the stairs. Nearly a month later we found the apartment we are living in now. It is also a duplex, and isn't in Jerusalem, the way my mom would've preferred, but there are 3 rooms and a full bathroom on the ground floor. Upstairs is a bedroom with a stand in shower. We chose one of the downstairs rooms as our bedroom so I wouldn't have to maneuver the stairs. Unfortunately, the stand in shower is also upstairs, but luckily, the bathtub that is downstairs is a large jacuzzi style bath with plenty of standing room so I don't need to worry about losing my balance and it's totally baby accessible. The one downside is with my belly, I have trouble getting in and out of the bath because of the bath's height, so my husband sometimes has to help me in and out of the bath which has led to some instances that has had us doubled over with laughter, but sometimes life's difficulties can and do bring a couple closer=)

Falling in love bit by bit

Finding out I was pregnant was quite a shock. Following the two miscarriages and surgery on my uterus in Dec 2008 to eliminate what now seems to have been the reason for the miscarriages, we put a hold on trying to have a baby. For one, I wasn't ready emotionally, and two months after the surgery, I found out I had unrelated stomach problems which made me really sick, so we put project baby on hold for about a year.

When I was physically and emotionally ready, we tried for 8 months to conceive, but nothing was happening. Since I had gotten pregnant fairly quickly the first two times around and now I wasn't getting pregnant, it was very hard for me to see friends who had gotten married after me who were already having their first child. Every month I'd get my period or a negative pregnancy test we were crushed. I would get depressed and think maybe I wasn't meant to have a baby. My husband tried making me feel better, and I tried to cheer up for his sake, but it wasn't easy. I'd also feel that my inability to conceive was another strike against my already broken body, but my doctor said there was nothing wrong and to continue trying.

In April 2011, my husband and I flew to Miami to be with my family for Passover. When we got back, I started to feel sick and my period was late. Because we hadn't gotten pregnant for so many months, I didn't think anything of my symptoms. I thought it was just my stomach issues coming back after sort of taking a diet hiatus for the holidays=) Also, I figured flying overseas had thrown my period off. When I was nearly two weeks late, I decided to buy a pregnancy test, but I knew it was going to be negative. At 6:30 AM, still half asleep,  I took the test. I couldn't believe my eyes when I got a positive result right away. We had waited so long for this after countless negative tests and crushed hope, so when I saw that second pink line I yelled "OH MY GOD!!!!" I probably gave my poor sleeping husband a heart attack because he came flying out of bed saying "what happened??!!" Still stunned, I said "I'm pregnant!!" and showed him the positive result. We hugged and giggled for like 5 minutes straight we were so happy.

At the time, I had just started a really low paying job. The day I found out I was pregnant, I went to work still feeling sick but now I knew the reason=) After getting off the bus, I had a small walk to get to work. During that walk, I tripped and fell. As I was falling, I did everything I could to guard my stomach and I ripped open my elbow instead. Taking that fall was a wake up call for me. I wasn't going to risk miscarrying for any job, much less one that paid $6 an hour, so I quit that day.

The first few weeks until my 7 week ultrasound to confirm the pregnancy were rife with fear. I didn't usually carry past 7 weeks. On the day of the ultrasound, right before the technician began, I took a deep breath and said "Ok, I'm ready." As soon as the tiny image came onto the screen I burst into tears. "There's your fetus," said the technician as she proceeded to show us its beating heart. I couldn't see through my tears I was crying so hard. I just kept saying thank god over and over. "You're making me cry," the technician said as she blew her nose. Then my husband started tearing up and pretty soon we were all crying! I was just so relieved and happy. A fetus. A beating heart. So far so good. Finally my body worked right! I had my baby! still in the making but baby was there and doing well.

During my 15th week ultrasound to check for risk of Down Syndrome, we saw the baby in 4D. It had all its body parts already!

 I couldn't believe that thing inside me was mine, especially since I didn't have a belly yet, so I felt kind of separated from the baby, but when the doctor said the ultrasound looked fine, I felt such a sense of triumph. My baby was perfect even if I as the mom am disabled.

I think I fell in love with my baby when I had an unscheduled ultrasound after I had taken a fall. The baby looked more like a baby and we saw it actually opening and closing it's cute little mouth. The baby was probably saying "FEED ME MOM!" I hadn't eaten much that day, so I felt a little guilty=) Seeing my baby open and close its mouth caught me hook, line and sinker. My eyes started to tear up and I promised I would take the best care of my baby as possible. Feeling my baby kick is the most amazing feeling ever! The kicks feel like little bubbles in my tummy=) I feel so much more connected to my little person.

My baby isn't the only one I'm in love with. I'm falling in love with my husband all over again. We had been through some rough times which took a toll on our marriage. We even stopped trying for a baby, but funny enough I got pregnant on that cycle=)
I think something changed in my husband the night he felt the baby kick for the first time. When my husband felt that small "pop" feeling, he laughed, hugged me, said "I love you so much." He then proceeded to talk to and kiss my belly. These days we end every night and begin every morning the same way. We spend time in bed snuggled together waiting for the baby to move.  Fetuses are usually active when mom is laying down. The kicks are getting stronger as the baby grows and my husband get such a kick out of feeling and seeing my stomach move. He kisses the belly and tells the baby how much daddy loves it. I feel such a sense of fulfillment during these moments with my husband. Finally things are working right for me, which makes me feel better about being married to a fully able bodied man because I feel normal now. Also, the fact that I'm carrying his baby makes me feel so much closer to my husband. He's more affectionate now and he has a lighter look in his eyes these days. We also laugh a lot more than we used to.

My husband is making sure I rest and eat enough and he always helps me do things around the house so I don't exert myself too much. I feel like a queen=) We can tell already that the baby takes after its daddy. When I eat meat or chicken, the baby starts dancing. Other foods, not so much=) But seeing my husband more relaxed, happier and so excited about this beautiful gift, has brought us so much closer to each other that I can't wait until he can hold our baby in his arms