I need a break

After a string of days that were terrible yesterday was finally a great day. I could tell from the minute I woke up it was going to be a better day. I didn't feel like I had that cloud over my head. AJ and I met up with Lauren and Cole. We had some lunch and did a little shopping for the boys. It was nice. The rest of the afternoon was just as nice. We played outside, the weather was perfect and we enjoyed ourselves. After dinner we went and checked out our new library. AJ had a blast. All the toys and books and other kids. We'll definitely be back there soon.

I think part of the reason why the day was so nice was because I didn't think about the surgery and I wasn't in pain from the mass. I felt pretty decent. You've got to understand I can feel the mass in there every second of every day. It's cost me so much. It causes me physical pain. It's a constant reminder of what I've lost and the uncertain future.

I know everyone is concerned and is trying to help and I appreciate that more than I will ever be able to explain but I need a break. There are other things I'd like to focus on instead of this thing.

So here's what I know -- my surgery will be Friday September 16th I don't know what time. I'll be in the hospital for 2-3 days and then recovering at home for a few weeks.

My mom is coming up Saturday the 17th and will be staying until the Friday after. I've got other people coming to help but I haven't figured out the schedule yet and I'm giving myself a few days "off" before doing that.

So please if you ask about it and I seem a little short don't take offense. Understand that this has been going on for months and I need a break.

EDIT: Of course right after I published the original post I get a call and they changed the date. It's now the 16th.

This sucks

Plain and simple. I don't know how else to put it. The last few days have sucked big time. I feel like I'm back at the beginning. I can't make it through a day without crying (usually sobbing). I'm exhausted. I'm in pain the last few days too.

As we get closer and closer to September it gets harder and harder. The surgery is looming over my head, my due date at the end of the month and new babies to be born right around the same time. Some days it's too much to handle and I fall to pieces.

I should be going in for surgery but it should be to deliver my beautiful little guy not having some mass removed. I should have family coming up to help with the baby, not because I'll be so limited on what I can do for myself and AJ. I should be so excited at a new arrival, not scared to death about the possibility of another loss.

I'm pissed. I'm so angry. So angry. I want to scream at the top of my lungs.

A Good Day

Today was a good day. We all slept pretty well last night. The morning was easy. AJ woke up in a good mood. He got to watch Blue's Clues (his new favorite and the ONLY thing he wants to watch) and we played and did his on-line alphabet game. He took a nap and then we headed to hang out with Lauren and Cole.

We brought lunch with us and all had something. The boys played (read: fought for the same toy). I love watching them together. It's comical sometimes. We went outside and played in the dirt and rode on Cole's Big Wheel Bike. AJ loved that. There might be a bike under the Christmas tree for him this year.

AJ was tired from all the playtime and fell asleep on the way home. We had dinner once Nick got home and then decided to take a ride to RIT to walk around on campus. We brought AJ's red wagon and his pull-along puppy. He had a great time. He walked the puppy all around and spent a good chunk of our walk pulling the wagon himself.

We saw one of the Facilities workers that used to come and fix stuff in our apartments. Nice guy. Got a kick out of AJ. Told us we should have another so he can have a playmate. Nick did a good job trying to get him off the topic but he came right back to it. It stung but didn't ruin my day.

I know that I'm on track trying to get healthy again. I pray once this mass is gone that my body feels normal again. I'd like to be able to focus on the emotional stuff and not have the physical pain on top of it. I'd like to get to a point where we can think about expanding our family. I pray that we can do that one day. I know AJ will get his playmate and we'll have our rainbow.

Is there a "kick me" sign on my back?

I feel like there is...and I feel like it's been there for a while.

Last night was rough. I took something to help me sleep and I still coudln't sleep. Then I finally started to fall asleep and AJ woke up (and kept waking up) from the storms we had. In total I think I got 3 hours of sleep.

AJ got up around 7:15 and I went to put on Blue's Clues for him. The episode we recorded last night was about bringing home a new baby. What a way to start an already very stressful day.

Went to the appointment. My blood pressure was high b/c I was so nervous. They asked the standard questions. The doc comes in. Talking about this thing and the pain and he asks me if I'm breastfeeding. I looked at him like he was crazy, told him what happened and then looked away. I took a deep breath and sat there for a second debating if I should just walk out right then and there. Seriously people, you have me fill out a damn history form -- how about you fucking read it?!

After I got passed that we went over what our options are. I knew it was going to be surgery. This one is more involved. I'll have to be in the hospital for a couple of days. He's going to do everything in his power to just take the mass and leave my uterus as intact as possible. There's still the chance that bleeding can occur and I'll lose the uterus all together but that's worst case scenario. His number one goal is to have us go on to be able to have another child.

The surgery will be either the second of third week of September. I'll find out at some point next week.

Deep breaths

Tomorrow is my appointment with the specialist. I'm hoping for some answers. Good answers. I know I can't control any of this and I'm trying to be ok with that fact but it's so hard.

I was asked today if I was nervous about the appointment. No, I'm freakin' peachy. Of course I'm nervous. I'll take stupid questions for $200 Alex. This may be one of the most important appointments I've ever had and will possibly tell me what my future will be.

I'm going to apologize in advance for those of you calling to see how it goes. I know everyone cares and is hoping for a good outcome but I think, no matter what I find out tomorrow, I'm going to take some time for myself to process it.

I'm going to try and get some sleep -- I know that's not going to come easy tonight.

Is this thing on?

I know it's on...my brain that is. I can't seem to shut it off. It's as if the calendar flipped to this week and it's sent my brain off and running. Thursday seems so far away and can't come fast enough. I'm scared to find out what they say. I'm nervous that they're going to have me go for more tests and drag this on even longer. I'm ready to be done with this damn thing.

I'm trying to keep busy. Tomorrow is the Parent Link meeting so that should help a little. Wednesday I have my therapy appointment and then Thursday morning is my appointment with the specialist.

When my mind runs like this it makes missing Ryan so much harder. It gets more intense. The timing isn't great either -- Nick is so busy at work. Sitting in a quiet house isn't easy. The quiet always makes it worse.

I'm going to try to find something to keep me occupied and distracted for a few hours....

I miss you my sweet boy.

3 Months

How has it been 3 months? I've said it before and I'll say it again...some days it feels like yesterday and others it feels like an eternity. Today it feels like an eternity. I can't believe it's been three months since I've felt my little guy. Three months since I held him. Three months since we had to say goodbye.

Angelversaries have been hard (I'm not a fan of using anniversary when talking about someone's passing -- that word just seems too "happy") Last month I was a wreck the whole day before. The anticipation of the day was too much to handle. I felt like I was the only one who remembered. Then I realized that honestly it's just another date on the calendar. I don't love or miss Ryan any less than I did the day before so why get hung up on a number on the page?

I really tried to remember that this month. I'm sure the distractions of the busy weekend and my upcoming appointment took some of the anticipation away too. I made sure I took some time and went to the cemetery. I thought about him all day (that's nothing new). I spoke to him a few times and I saw the bunny in the yard that will always remind me of him.

So now, while the house is quiet I'll take a few more minutes, look at his picture, talk to him some more and shed a few tears.

I miss you my sweet boy. I love you.

A Night Out & Making Changes

Last night Nick and I went to a friend's wedding. It was the first big event we have been to since we lost Ryan. I was looking forward to a night out with friends that we don't get to see very often. I also knew that I'd be "safe" with this group because everyone knew what happened and I wouldn't get the question.

One of the hardest things for me these last 3 months has been the question "How many kids do you have?" The first time I was asked that question after Ryan I didn't know how to answer. I was caught so off guard. I felt terrible that I hesitated giving my answer. I decided it was easier to say that AJ was my only child. I was in Wegmans -- did the cashier really need to know my story? Not really.

I got home and felt so guilty. I remember asking Nick how I'm supposed to answer that question. How do I answer without feeling like I'm denying Ryan? This point was one that I've been working on and is a question I ask other BLM's (baby loss moms) when I can. I think I've finally come up with a solution that I'm comfortable with.

Rewind to last night. I'm with "our group" but there was one friend of a friend. He was being nice and making small talk (not my strong point at all). He asked what I do for work. I told him I'm a stay at home mom. He asked how many kids I have. I got flustered because I wasn't prepared to answer. I wasn't in that frame of mind because I was with friends who all knew what had happened. I responded with "I have a 19 month old" and spoke a few words about AJ. The friend of a friend then asked if we're going to have more children. *sigh*

I wanted to say that we do have another child. I wanted to tell him a few words about Ryan. I wanted to tell him what was going on and that we might not be able to have more. I wanted to tell him that as innocent as that question seems and was intended, it's something you should never ask anyone. I didn't. I said a simple "yup" and walked away.

I took a few minutes, told Nick what happened and tried to push it from my mind. I didn't want to let that get in my way of enjoying my time at the wedding. We ended up having a really good time.

Earlier in the day I got a call from the Social Worker that I was dealing with at the hospital after Ryan was born. She helped me find my therapist and was there in the days and weeks after when I needed the help the most and couldn't seem to find it.

It took weeks to find a therapist and months to find the right support group. I knew I needed and wanted the help and was so frustrated that it was taking so long to get that help. Now that I've found both I decided that no one else should have to wait that long. No one should want help and not be able to find it.

I contacted the Social Worker hoping that I could pass along some suggestions for them going forward. Things that I knew didn't really work or could be done differently. After our conversation we agreed (much to her delight and support) that I would compile a new list of resources that would be given to new parents dealing with a similar situation. I'm so excited about the project. I hope it can make a difference for someone. And maybe this is the start of the path that I'm supposed to be on. I've got to believe that Ryan is leading me somewhere...maybe this is the first step.

The Big Brother

Usually when I go to the cemetery I'm alone. I try and go when I have a sitter so I can actually spend my time doing what I want and not chasing AJ around. Today I didn't have that option and really wanted to go.

We get there and I take AJ out of the car and he knows where to go. At first he was trying to grab at Jaiden's toys (the little boy next to Ryan). I sat him down and told him those weren't his to play with. He grabbed the ladybug stick we have there out of the ground. No problem. If it'll keep him occupied it's fine by me.

AJ sat so nicely for a few minutes. I was spending time with my two boys. AJ was starting to get a little fussy so I asked him to give Ryan a kiss. He leans over to the angel statue we have there and gives it a kiss right on the head. Then he goes back to playing with the ladybug. I got a few more minutes out of him. And in those minutes he kept scooting back over and giving kisses to the statue.

As I was watching him my heart was breaking. I was picturing what I had pictured in my mind from the moment I found out I was pregnant. I imagined AJ coming up to the hospital to meet his little brother for the first time. I'd be holding Ryan and he'd come over and give him a kiss on the head. And knowing what a loving boy AJ is, he'd want to do it again and again.

I'm so sad that we won't get to see that. I'm so sad that AJ won't get to know his little brother. He'll know all about him but God how I wish he could have had the chance to get to know him.

The uncertainty of the future is weighing heavy on my mind lately. My appointment is still a week away and I can't stop thinking about the "what-if's" and possibilities.

I love you very, very, very, very, very, very.....much!

I was rocking AJ before bed one night and said "I love you very, very, very (add about 15 more very's here) much" He looked up at me with just his eyes, his head still resting on my chest, binky still in his mouth and said "very, very, very, very, very..." It was the sweetest thing. I'm pretty sure it brought me to tears.

He's been saying so much now it amazes me. One of the best parts of my day is waking up to him chatting to himself (or maybe the stuffed animals in his crib). He runs through a lot of the words he knows as if he's practicing. This morning he said "much" a few times. Last night we were working on that so he could get the "very much" down.

He also says his letters if we play the alphabet game online. He can say book, there it is, I did it, a clue (he's been liking Blue's Clue's lately), more, good, all done, oh no, uh-oh, aww nuts, oh man, bear, hi, bye, bath, sock, car, keys, milk, where'd it go, open, closed, ball, binky, help, up, choo-choo, thank you and so many more I can't think of.

He'll give you a kiss and a hug if you ask him (and sometimes unprompted). Lately he likes to put his shoes on and ask for the car keys. He's a funny boy who loves to smile.

He keeps me going. I don't know how we would have gotten through these last few months without him. He's been a great distraction and source of joy -- even if it's bittersweet sometimes. Sometimes when I'm missing Ryan so much it's hard to watch AJ and all of his accomplishments. It's hard knowing what we won't get to see Ryan do. But then I think that somehow AJ is living for both of them. I know Ryan is watching and having fun with his big brother. I just wish he were here so we all get to see it.

I'm a Zebra

They say when you hear "clip clop" to think horse not zebra. Apparently I'm the exception to that rule. Nothing about this whole year has been "by the book".

I've been dealing with an ovarian cyst (or so I thought) since the week after Ryan was born. I went and got checked and they did a sono. Looks like a large ovarian cyst that's ruptured and is starting to heal. Here's some Percocet for the pain. See you in a few weeks.

The pain stopped before the next appointment. I thought it was gone. WRONG. Now it looks bigger. GREAT. It wasn't bothering me so they left it alone. Follow up in a few more weeks.

I didn't make it to that appointment. I woke up in so much pain one Sunday morning it landed me in the Emergency Room. We waited 3 hours just to get seen. They took more blood, gave me some fluids and did another sono. Oh yeah, large ovarian cyst. Follow up with your doc. They'll probably have to do surgery.

I was relieved. Not to be having surgery, of course, but to finally have an end to all of this. At this point the cyst was so big that I can feel it in there. It bothers me. They tell me it's probably a little bigger than a baseball.

I went in for a laproscopy on Aug. 3rd. I woke up from anesthesia to Nick telling me it's not a cyst. What?! Then what the hell is it? They're not completely sure but it could be a fibroid. So I went and had surgery pretty much for nothing. Well not nothing -- the doc did say that this is what probably caused the preterm labor. My uterus was in so much stress between this large mass and Ryan that it couldn't take it. So we've got the answers we've been so desperatly searching and hoping for but it doesn't bring the kind of peace I thought it would....but that's another post.

I was scheduled for another MRI. Even to the MRI it looks like a cyst. That's what the report said. My doc said if she hadn't seen this thing with her own eyes she wouldn't have believed it.

So now I'm scheduled for an appointment with a specialist. We'll go over my options. I'm pretty sure all of them are going to involve surgery -- I think it just comes down to if they can save my uterus or not.

I'm tired of not being in control. I'm tired of being on this rollercoaster. I want to have a say in something. I want to have another child. I don't want that decision made for me...

My Story

My submission from Faces of Loss, Faces of Hope

Our world was turned upside down in 25 minutes. It was actually happening for 5 days we just didn’t know it.

I was pregnant with our second child and what a different pregnancy this was. My first was perfect. No morning sickness just some fatigue. I loved being pregnant. I was so proud to have that belly. I loved feeling that little life kick inside of me. I had never felt better about myself.

Almost from the moment we found out we were pregnant I was sick. I was not quite 6 weeks when the first bout of illness hit. We all thought it was the stomach virus. I couldn’t keep anything down. I went to my OB out of concern of being dehydrated. They did the usual urine test and it came back fine. Not dehydrated. I was relieved. They gave me some Zofran for the nausea and told me to rest and drink as much as possible. I felt better about 2 days later.

We had our first “official” OB visit at 8 weeks. They did the usual exams and we got a sonogram to check for dating. The sonogram tech moved the wand and there was our little one. I could have stared at the screen all day. Our 13 month old was going to be a big brother! We couldn’t have been more excited. Everything measured great and was right on time. It was Valentine’s Day – I couldn’t think of a better way to spend that day.

At around 9 weeks my husband came down with Strep Throat that I of course also caught. It took 2 rounds of antibiotics for it to go away. Then about a week later there was another bout with the stomach virus. “Seriously?! Again” I thought. This time it lasted around 4 days.

The doctors started thinking this probably isn’t the stomach virus so many times in a row. “No kidding!” I thought. Maybe it’s the gallbladder they said. Eat bland and keep away from fatty foods. Whatever I needed to do to keep this from happening again. It was so hard being so sick and having to try to take care of my 13 month old. My husband had just started a new job when we found out we were pregnant and he had already had to miss some work to help me out. (I’m a stay at home mom and all of our family, with the exception of my sister, lives 6 hours away)

I stuck to carbs for weeks. Eat bagels and pasta – not a problem for this preggo! Too bad it didn’t work. I got sick again. They sent me for a sonogram to check my gallbladder and did blood work. The tests came back fine. The sonogram didn’t show anything wrong with my gallbladder.

The next time I got sick I ended up in Labor & Delivery (L&D) for dehydration. Even the small sips of water I was taking wouldn’t stay down. I was weak and this had gone on for 2 days already. They gave me fluids and I felt better after the first half a bag. I was given another medication for nausea.

All the while in between these bouts of whatever this was I was ok. Once it went away it was as if nothing was wrong. The baby always sounded great on the Doppler. We had another sonogram somewhere in between all of this and there was our little one bouncing around happy as could be.

The next time I got sick I ended up in L&D again. In the midst of throwing my guts up yet again I pulled a muscle in my abdomen. The pain from this was worse than my c-section recovery. I couldn’t get off the couch or out of bed. I couldn’t walk upright. The docs weren’t sure if it was a muscle at first so they sent me for all kinds of tests. I had more sonograms of my abdomen (while the tech was scanning where the pain was she started to laugh – there were baby’s feet on the edge of the picture), I also went for an MRI and met with a surgeon. My white blood count was elevated a bit and they were concerned it was appendicitis. After a week of terrible pain it was determined that is was just a badly pulled muscle. I was given some pain meds, a walker to help get around and was told to rest. My mother in law flew up to help us out. I could barely take care of myself no less my now 15 month old son. She stayed a week.

I was good for a few weeks after that. On May 11 we had our 20 week anatomy scan. There was baby looking great. Moving around and trying to suck a thumb. The profile looked just like big brother’s. Everything measured perfectly. Everything looked great. We left with pictures in hand on top of the world. I was so happy that even with all this illness our little one was doing just fine.

I had a trip planned with my sister to go see our mom with our boys. We were going to leave on Thursday and do the 6 hour drive. On Sunday night I started not feeling well again. I took some nausea meds and went to bed.

Throughout that night I couldn’t sleep and spent a good chunk of it in the bathroom. This time was different than the others…I wasn’t vomiting. I was thankful for that. The stomach issues continued for the next few days. I wasn’t hungry and was fighting to eat even crackers. I was having cramps but I thought it was because of the stomach upset.

I didn’t go to the doctor because this was the 5th time this had happened and there was nothing they could do. I stuck it out. My son and I spent the next 3 days in front of the television. I went from the couch to my bed. Whenever my son went for a nap I would do the same.

On Tuesday I told my sister I wasn’t going to make the trip with her. I still wasn’t feeling any better and knowing how this was in the past I knew I wasn’t going to wake up overnight and just feel better.

By Wednesday the cramps were a little worse. I was taking Tylenol but it wasn’t doing much. I also wasn’t sleeping. I was getting exhausted.

On Thursday morning I was sitting at the computer when all of a sudden I felt a gush. I didn’t know what it was. I ran to the bathroom. I looked and still wasn’t sure what it was. I called my husband to come home and then called the doctors office. They told me to come in. My husband walked in and we turned right around and went to the doctor’s office. I was still leaking whatever this was.

They called me in and had me do a urine sample. The nurse said she saw blood in my urine. She asked if I thought my water had broken. I told her I didn’t think so. The color of whatever this was didn’t look like amniotic fluid to me.

She brought me into a room to wait for the doctor. He asked what was going on. He did an exam and said he thought it was bacterial vaginosis. The discharge was probably from that and some antibiotics should clear it up. He measured my belly and put the Doppler on me. “Baby sounds pretty happy to me” he said. He also checked my cervix to be sure. “Long and closed”. I could have cried in relief. I told him I was still cramping and he said it was probably from the stomach issues.

Later that afternoon I noticed a little spotting. I called the doctors office and he said it was probably from “poking around in there” during the exam.

The bleeding got a little worse as the night progressed but I was also still having gushes of “discharge”. I figured how can the bleeding stop if I have all of this stuff coming out?

Friday it was still going on. I called the office again. At that point I had a few doses of the antibiotic in me and thought it would have started to help. I spoke to my OB on the phone. He told me “we need to wean you from worrying. You can’t worry like this for the next 20 weeks”. I felt a little more reassured but I was still cramping and still having the stomach issues.

As Friday went on the cramps got worse. I even described them to someone as contractions. I was only 21 weeks 4 days. I couldn’t be having contractions. I was just at the doctor and they said everything was ok. I need to stop worrying. Try and relax and you’ll feel better.

By Friday night I was in so much pain and it had been so many days already. I was at my wits end. I was in bed with my husband trying to figure out what we should do. I was trying so hard to avoid going back to the hospital. I got up to use the bathroom and I passed a big clot. My stomach sank. I came out and told my husband I needed to call the Doc on call. She called back right away and told me to come in.

We called some friends to stay with our sleeping 16 month old. It was 11pm when we called them. Something felt different to me. I didn’t know what it was but I started to panic. I was trying not to scare my husband so I didn’t say anything.

We got to the hospital around 11:40. I was wheeled right up to OB triage. A nurse came right over and helped me change. I was almost in hysterics at that point because as I was getting out of the car I passed something else. I didn’t know what it was. It turns out it was another clot.

She brought me over to a bed and got a Doppler. She scanned my belly for what felt like an eternity. She couldn’t find a heartbeat. I grabbed my husbands hand and started squeezing. She went to get the sonogram machine. She came back a few minutes later with the sonogram and a doctor. As soon as the doctor put the wand on my belly she couldn’t see the baby. She had to move it lower. The baby wasn’t where it should have been. I took a peek at the screen and I could see there was no fluid around the baby. She confirmed that. “I’m so sorry sweetheart”. She checked me and the baby was right there. “You’re in labor and you’re going to deliver”. I broke down. I cried like I had never cried before. The sounds coming out of me as I sobbed were so primal. I cried with all of my being. I remember looking over at my husband and apologizing. I felt like this was my fault.

They wheeled me into a room and my body started taking over. I had to push. With 1 push the baby’s head was out. The doctor did the rest. I wasn’t even on the bed yet. I was still on the gurney from triage.

They took the baby to the warmer. It was 12:05am when our second child was born. We got to the hospital at 11:40. In 25 minutes I felt like my world ended. I kept shaking my head trying to clear the fog. What just happened? How could this be?

A nurse told us the baby was alive but we knew it wouldn’t be long. My husband went to the warmer and came back to my side. He told me we had our second son. We held each other for a minute and cried. I was still bleeding and the placenta hadn’t delivered yet. They finally got it to deliver and I was ok.

I wanted to hold my son. My husband went and got him. He was wrapped in a blanket. He was so tiny but so perfect. 10 fingers and 10 toes. A perfect little nose just like his brother. His eyebrows were just blonde shadows.

Ryan Matthew was only 15 ounces. He was born at 21 weeks and 5 days. I’m pretty sure I was holding him as he passed.

We took turns holding him and talking to him. We cried. We prayed. About 2 hours later I asked Nick to have the nurse come and take him. I was afraid if I held him too long I wasn’t going to be able to let him go. I had a minute alone with Ryan. I told him I was sorry for not being able to protect him and I asked him to watch over us and his brother. Again I cried like I hadn’t cried before.

Leaving the hospital was one of the hardest things I’ve ever had to do. I wasn’t leaving with my son. I wasn’t leaving still pregnant. I was leaving with a memory box of things of my son. His tiny little footprints on a card, what should have been his hospital tag, a beautiful note from our nurse and a tiny hat that was still way too big to fit.

We buried our son that Tuesday. The days leading up we were just trying to prepare for a final goodbye. Every time I left him it hurt. It hurt so badly. I’m thankful for the time we got to spend with him (we were able to hold him at the funeral home Monday and Tuesday) but that time will never be enough. I should have had a lifetime with my son. We weren’t supposed to meet until September. How do you say goodbye when you’ve barely had a chance to say hello?

We learned once the pathology results came back that is was a terrible infection. It was in the placenta, sac, cord and fluid. The doctors don’t know how it got there or what caused it. They also told me there was nothing that could have been done.

In the days after Ryan’s birth I needed to do something to ease the pain. The worst pain I’ve felt in my life – something I wouldn’t wish on my worst enemy. We did a little research and decided to set up a page for donations in Ryan’s name for the March of Dimes. In the first 24 hours we had more than $1000. We were shocked and amazed. We both thought “wouldn’t $500 be nice”. To date our family, friends and even strangers have donated more than $4000. all in the name of our son. I can’t think of a better way to honor him and make him proud.

It’s been 27 days and it’s been hard. I miss him every second of the day and will for the rest of my life. I know we’ve got a special angel watching over us.

I love you my sweet boy and I always will.