Another miscarriage...

After a month of bleeding from my miscarriage in November, December passed by quickly with a celebration for my friend's wedding in New York and then back to California for Christmas. No complications or serious bleeding. Then January 8th rolled around and things started to change. I started bleeding again, more than 2 weeks before my expected menstrual cycle. More headaches, drowsiness, bloating. At first I thought it was just the "irregular bleeding" my OB had warned me might happen over the next few months and when it slowed down, then stopped a week later, I let it go. Then 3 days later the bleeding started again. After another week and a half of bleeding and severe headaches, I called my OB, I'd had enough. His nurse said the irregular bleeding could last up to 6 months but when I'd told her I'd been going through this for several months before my miscarriage, she agreed that I needed to see the doctor and possibly have a biopsy to make sure there wasn't something seriously wrong.

On January 29th, my husband left work early and drove me to the OB. You have to take a pregnancy test before any biopsy, standard procedure but what threw us for a loop was that it came back positive! We were speechless, even my OB was shocked! I'd only been back on birth control for 2 months, so we all agreed it wasn't 100% but I'd always used it to control my hormones, I never actually needed it to prevent a pregnancy!

Instead of a biopsy, we were now being prepped for an ultrasound. You hear stories of people getting pregnant "naturally" after going through years of IVF but I was on birth control, I only have one fallopian tube to get an egg to my uterus and sex wasn't exactly at the top of our "to do" list after a miscarriage, traveling and the holidays...it didn't seem possible. And then we saw it, a sack! "Oh shit!" was literally the only thing I could say. It was overwhelming! Joy, fear and shock were running through my body, followed by a million questions. Was I seriously pregnant or was this leftover tissue, was this pregnancy going to be healthy...I'm almost 38, holy cow did my eggs finally soften enough to really be pregnant...what next?!?

"This is either a VERY early pregnancy or you were pregnant but it's abnormal and you're going to miscarry again. Let's run an HCG and progesterone test and we'll go from there," was my OB's response. We went straight downstairs, drew some blood and told our parents what had happened. No one knew how to react...mostly we didn't want to get too excited. Blood work came back the next day confirming that I was pregnant but chances that it was a healthy pregnancy were low because my progesterone count was almost nonexistent. We ran the test again 3 days later and it was clear this wasn't a healthy pregnancy. My counts had only risen to 197 when they should have been well over 300, not a good sign.

The next day I was back at the hospital, this time for another ultrasound to find out what was really happening. They only confirmed that there was something in my uterus but it was time to find out if it was leftover tissue from the previous pregnancy or if it was in fact a second abnormal pregnancy. Finally, on February 3rd my husband and I were back in my OB's office for a biopsy but for completely different reasons. I never expected a biopsy to be easy but I never knew how uncomfortable it could really be and I'm glad it didn't last any longer than it did! The only good news was that the irregular bleeding should stop soon enough and we'd essentially be giving my uterus a bit of a fresh start. The next day my OB's diagnosis was confirmed...it was an unexpected abnormal pregnancy and all of the bleeding was the beginning of another miscarriage.

Now, 10 days later, I'm still lightly spotting, headaches come and go but it's the pure physical and mental exhaustion of a miscarriage that is knocking me on my butt. I still have to have my HGC count checked every week until it hits zero...last Monday was at 99, so I'm hoping zero isn't too far off. I'm trying to rest and move on but I can't help but think of the next step. Clearly we CAN get pregnant naturally now but should we? I'm almost 38 and my husband just turned 42...what are the possible complications that come along with our age? Do I even produce enough hormones to sustain a natural pregnancy? Do we try to get pregnant naturally and possibly face another miscarriage or wait until May like we'd planned and try another embryo transfer that's closely monitored? Maybe this was all a one time thing, maybe we'll never get pregnant on our own again but at least we know there's even the possibility of "maybe." We have options that we've never had before and it feels confusing and a little overwhelming but exciting at the same time. For now I need to rest, let my body heal and when the time comes we'll decide what feels right for us.

No replacement, miscarriage and a 3 Year Old...

It's been so long since I've written anything on this page, I even forgot my password!!! Luckily I figured it out, so it's time for an update!

Going all the way back to April, my doctors decided that even with all of my shoulder pain, a replacement would be a bad idea. Unfortunately, shoulder replacements don't last as long as other joint replacements and when one wears out, another has to take its place. Every time you replace a joint, you have to cut away at some of the existing bone and the more often you have to replace a joint, the more the bone is cut away and ideally I'm going to live long enough that I'd take the chance of cutting away too much bone until nothing is left to work with. You also take the chance of losing a little mobility every time you have surgery, something I'm already having trouble with. So it was recommended that I take it easy, don't lift too much and keep my shoulder as loose as possible. Keeping my mobility has been tough but taking a break from lifting did help with some of the pain. For now I'm trying to keep as much mobility as possible and eventually I'll be working with a physical therapist to retrain my muscles and ideally gain even more mobility. Easier said than done but I'll get there.

Even with all of my shoulder issues, my husband and I decided to try for baby #3 this past September. The transfer was successful but sadly I had a miscarriage in early November. Nothing traumatic happened, the baby simply stopped growing. I knew something was wrong pretty early on but we kept holding out hope. My HCG counts weren't increasing as quickly as they should have and by our second ultrasound we realized the embryo stopped developing. It hit harder than I expected but we're doing better now. It was a long process but fortunately I didn't have to have surgery this time. I had to take Misoprostol, a medication that assists by helping the tissue pass more quickly. I had to take it twice because some of the tissue didn't pass the first time but eventually it did it's job and I didn't have to have surgery or stay in the hospital, I was able to let everything pass at home. I was fortunate enough to go through all of it without much cramping and pain but it all took it's toll and drained me of any energy I had. My family was extremely supportive through all of it and helped out even more than usual. We can try another transfer at the end of this month if we want but I think I need more time to recover, work on my mobility and strength and just feel healthy again.

I decided to give Enbrel another try. I've been on Prednisone for about 5 months now and I've had enough of the puffy face, short temper and countless side effects that come along with it. There's always a love, hate relationship when I take Prednisone but unless I'm pregnant, the benefits aren't worth it, so back to Enbrel I go. I've only taken the Enbrel for 2 weeks and I've noticed a little improvement bu I know it will take some time for it to really kick in. I'm still weening off of the Prednisone and it's going to take longer than I'd hoped. My doctor wants me to take a full 4 months to ween off of it...not going to happen but I'll take it slow so I don't completely crash and burn. I'll probably ween off of it in time for another embryo transfer and have to start the Prednisone again but even a tiny break from it is appreciated.

On a more positive note, my little man turned 3, I can't believe it!!! We had a great day celebrating with family, friends, Thomas the Train, Lightning McQueen and Minions. He could decide on one theme, so we combined his three favorites. He's trying so hard to gain his own independence but still wants to be the baby as well. He has a hard time balancing it all some days and tests our patience along the way but we're all learning together and trying to keep our sanity as much as possible. He's still the sweetest little guy I know and even the craziest days are worth it...especially when he lets me rock him to sleep. The last few months as a parent have been completely exhausting emotionally and physically but I wouldn't change a thing...we're beyond blessed!

1 year old and a shoulder replacement...

Our little family

I can't believe my baby girl is already and year old! She's walking, slowly but steadily and babbles 24/7! She still adores Jimmy and loves playing with him but also loves her alone time with her books. She's a crazy little girl and she keeps us busy but she makes us smile and laugh through all of it. I'm so incredibly proud to be her Mama!

Jimmy's doing well, he'll be two and a half this month which is mind-boggling to me! He's an amazing little guy and still such a love-bug. Everyone warns you about the Terrible Twos but so far, he's minor. He fusses about eating but only about having to eat. He'll eat anything you give him, even his favorite, broccoli but he'll take forever to do it or sometimes whine that its on the wrong plate or that you gave him a spoon instead of a fork. Random weird stuff...just because he's 2. He still has trouble sharing some days but Time Out has been a lifesaver and he still wants to be treated like a baby from time to time but he's starting to realize that babies don't have as much fun as big boys.

And then there's me. Ugh. I've been taking Enbrel for almost a year I think and I've had enough of it. It makes me feel better...less stiffness and pain but I hardly ever take it! I started having problems, too many infections and colds, so my Rheumy recommended doing my injections every 2 weeks instead of every week. Started out well and then the kids came down with Croup. I ended up with some form of it and I had to stop taking my Enbrel again. When I finally felt better, I did my injection and a week later I came down with a sinus infection, so I stopped my Enbrel again. Now I've been 2 weeks without an injection, still have a sinus infection and just started my second round of antibiotics which means no Enbrel for at least another 2 weeks. And this is the cycle I've been on since I started taking Enbrel last year. So as grateful as I am that my counts have come down, It's just not worth it if I'm sick more than I'm well. I meet with my Rheumy next month, so I'm thinking we'll just continue with my NSAID's and steer clear of anything else for a bit.

I started having a lot of shoulder pain last month, this time in my right shoulder and just found out yesterday that I tore a muscle(s) in my shoulder and that a total replacement is in my near future. Not the diagnosis I was hoping for, especially with two little ones to look after but that's the joys of having joints like a 90 year old. The specialist I met with wants to consult with a couple of other surgeons before we make any plans but he's pretty confident that they'll agree with him. I'm pretty confident they will too. I have to take it easy, stop lifting heavy objects (mostly my kids) and let my muscle(s) mend as much as possible and then in a few weeks we'll try a cortisone shot. My doctor is hoping that my Enbrel will wear out by then and my chance of infection with the shot will be a little lower. If all goes well, he's figuring we'll wait for the muscle(s) to mend, try physical therapy to get as much range of motion as possible and then surgery. I lost a lot of mobility when I had my left shoulder replaced, so I think they want to keep my right moving as much as possible before they do anything. I'm praying for the same. Anxiety set in with the idea of having another replacement but what can you do. It has to be done and the sooner the better.

So tired...

Things have been so busy lately that I feel like I'm falling behind on everything, especially updating things here. My little guy turned two last month! I can't believe he's already two! There are days that drag on and I wonder if I'll ever get through them and then in a blink of an eye, days and weeks have passed. I remember being so nervous the first night we were home alone with Jimmy and now he's running around like a little man, talking, trying to make his little sister laugh, he's everything I could have hoped for and he reminds me everyday how blessed we are to have him.

Little Ruby is doing well too. She's been doing an army crawl since she was 6 months old and now two months later she's taking a few strides on all fours and can sit up on her own but doesn't do it very often because she's too busy trying to keep up with her big brother. I can't wait for her to start walking but I know she's going to follow Jimmy everywhere. Fun when he wants to play with her but I know he'll have a hard time with it too. He loves her but is quick to let everyone know when he's had his fill of her and needs his space. Ahh, the joys of siblings. hee hee

Ruby's increasingly harder for me to keep up with but she doesn't wander as much as Jimmy did because she wants to be wherever Jimmy is, so that helps. It's also been great having family with us during the day to help out because things would be very different without them. I always knew the first couple of years with a baby would be tough physically because of my JRA but it will pass and it will be worth it. Do I want a third child like we'd always planned? That's still something I need more time to decide.

I'm finally getting used to my finger being fused and there's no pain but it does get in the way from time to time still. Nothing unexpected though and I don't regret having the surgery. My Arthritis has been doing pretty good with random days of discomfort but mostly days that I saw coming. We took Jimmy to A Day Out with Thomas for his birthday and even though I felt great the whole day, I paid for it that night and the next day. After a day of walking and standing, my right ankle just throbs with pain. It's sharp stabbing pain along with what feels like severe cramping and no matter what I do, I just can seem to escape it. The pain lessens over a day or two but it's enough to keep me off my feet until it goes away completely. I'm still taking Enbrel and Nabumetone and they seem to be enough to get me through a typical day but it might be time to take a closer look at my ankle and try to figure out why it can't keep up with my other joints.

Aside from the everyday pain that comes with JRA, I've been exceptionally tired. I'm sleeping well at night and fall asleep almost as soon as my head hits my pillow but it seems like no matter how much sleep I get, it's just not enough. I visited my doctor thinking maybe my iron was low or I had something going on that I wasn't catching but everything came back normal and my doctor just put it off as lack of sleep. Luckily my husband has been very understanding and after we put Ruby to bed, I go to bed too and my husband stays up a bit longer with Jimmy and then puts him to bed. I've been going straight to sleep without trouble, sleep solid through the night and nine hours later, still wake up tired. I feel like something is off, something is going on that we're not catching but I have no clue what it is. So for now I'm resting when I can, sleeping when I can and hopefully things will get better. Maybe it's is lack of rest, maybe it's too much rest and not enough exercise, I don't know. It's just one of the joys of JRA I suppose.

Enbrel, surgery and sleepless nights...

I can't believe how long it's been since my last post and how much things have changed since then! Not sure where to start actually.

I'm still on Enbrel and I'm doing very well on it! I'm taking 50 mg, once a week and it's made a noticeable difference in my pain levels and at my check-up last week my ESR count was only 9! The lowest it's ever been was 20 and that's when I was pregnant and feeling great. It hasn't fixed everything, I still have stiffness and pain but it's definitely an improvement. And I haven't had any problems with infections either which is great. Needless to say, I'm staying on the Enbrel!

Soon after my last entry I found out I had to have surgery to fuse the middle joint on my left index finger. I've suffered with a Swan Neck Deformity in the joint for a long time and it was painful on a daily basis. After meeting with an Orthopedic Surgeon, we agreed that the best remedy was to fuse the joint. I haven't had full range of motion in the joint for years, so fusing it didn't seem like that big of a deal...I was kind of wrong. My surgery and recovery went very well but I never realized how much the hyper extension actually helped me. My thumb is pretty bent up, so the hyper extension of the index finger actually allowed for some extra room to grasp larger objects. Now that the finger is permanently bent at 30 degrees, I've found it hard to grasp certain objects, like my daughter's bottles. Taking the splint off helped but I'm having to wear another splint at night that now helps the rest of my finger stretch and loosen up so that I can grab larger objects without my finger getting in the way. Things are getting easier but it's going to take time to get used it.

Right after my surgery, my son decided to start getting out of bed in the middle of the night, stopped taking naps, changed his eating habits and did everything possible to get our attention. I think he was feeling left out since everyone was having to help more than ever with my daughter and didn't care what kind of attention he got, as long as he got some. Luckily he's getting back to taking naps and sleeps through the night again but getting him to go to bed at night is still a bit of a struggle. Now he's experiencing Separation Anxiety, so we've given in to staying in his room until he falls to sleep and if he skips a nap from time to time, it's no big deal. We feel like he's still too young to fully understand what's going on and eventually when he does, then we'll explain to him that he needs to stay in bed and go to sleep even when we leave the room.

My daughter has been great through my surgery and all of her brothers sleeping problems. The girl can sleep through anything and has to be one of the happiest and most relaxed babies ever. She sleeps great, has cut two teeth without much complaint and is even trying to crawl and just barely turned 6 months old. She's had a few doctors appointments since my last entry and her heart murmur is gone! Whew!

Life with JRA and two kids is exhausting but full of surprises every day. They're my little miracles and I'm so thankful that I get to be their Mama.

Secondary Drowning...

I'd never heard of Secondary Drowning before and I'm sure there are plenty of other parents out there who haven't either. With summer coming up and knowing how much kids love playing in the water on those hot days, I thought it was important to share this post written by a mom who's experienced it first hand. Keep those little ones safe and remember to always listen to your Mommy instincts. Thank you Delighted Momma for sharing your experience.

Secondary Drowning + My Recent Experience & Real Life Almost Nightmare

Enbrel, Heart Murmur and a Big Boy Bed...

Jimmy having a blast at the park & Ruby's first smile.

I've been taking Enbrel for a month and I can't really tell if it's helping or not. For now I'm taking 50mg every Wednesday with the hopes that I won't need a higher dose for a while. I wake up every Thursday feeling good but look forward to taking my next dose within a few days. I'm still sore and stiff most days, but I think it's because of the changing weather and the fact that I'm taking advantage of the good days. It doesn't help much that Ruby wants to be held 24/7 either. I hurt from my fingertips up to my shoulders, but it doesn't seem so bad when my baby girl just wants to cuddle and fall asleep in my arms. I have days where I feel more flexible and think "ooh, I should do this or that," and then I pay for it the next day and remind myself that I need to take it easy still and let the Enbrel kick in for a bit before I overdo it.  I have another check-up next week so I'm assuming we'll run some more blood work and decide if we're going to keep things the same or change it up a little.

Ruby gave us a bit of a scare at her two month check-up...we found out she has a heart murmur. I've always worried about my kids possibly getting JRA, but never considered the possibility of any other complications. Her Pediatrician said she didn't think it was anything to be worried about and it would probably heal on its own, but she wanted to send us to a Cardiologist just to be safe. I know heart murmurs are common among infants, my biological dad even had one, but you still don't like to hear anything is possibly wrong with your baby. After a long two weeks of waiting, we finally met with the Cardiologist and he agreed, Ruby has a murmur, but it's nothing to worry about. She's gaining weight and grown and a healthy pace and he believes it will heal on it's own. He recommended having our Pediatrician keep an eye on it and if it's still there when Ruby turns 2, then we'll run more tests. Until then just keep treating her the same.

In the middle of all of this, Jimmy decided he was tired of sleeping in a crib. He tried to climb out of his crib twice, but luckily his Grandpa was there to catch him. He's only a year and a half, so we weren't sure if we'd be able to keep him from wandering around the house while we slept, but possibly falling out of his crib seemed worse. Luckily he's made the transition easy on all of us. We converted his crib to a daybed and he loves it...he's so proud of his "big boy bed." He even wanders in there during the day with a few toys to take a little break...mostly to get away from Ruby's crying. He wiggles so much at night that he's fallen out of bed a few times, but he's quick to settle down and go back to sleep. One time he even climbed back in bed and went to sleep on his own! Mr. Independent. 

Having a new baby in the house is rough, but I feel like things are starting to fall into place and get back to "normal." Jimmy's enjoying having a little sister and loves giving her cuddles and kisses. Ruby's full of smiles and coo's and is slowly getting on the same schedule as Jimmy. She even sleeps a solid 7 plus hours every night...so thankful for that! Now I just need to get my JRA under control, but that's a never ending adventure.