Monday, August 31
Just walked by a room with a baby on a hi-fi vent. Broke my heart. And brought back some bad memories. Hope the kiddo does okay.
I walk by parents with babies or see them in the store and think "Hey, I want that!" It's not until a minute later that I think... "Oh, yeah. I have that."
Sunday, August 30
"Sometimes the smallest things take up the most room in your heart."
-- Winnie the Pooh
Care time tonight getting ready for his new Onesie!
Thursday, August 27
I've been reading this book "Miracle Birth Stories of Very Premature Babies" while at the hospital. Obviously it's about premature babies. :) The stories are touching and give you hope. There are also little "where they are" blurbs at the end that make me so happy.
Anyways, yesterday I came across the perfect story. It was me... in some way, shape, or form.
It was a story about a couple in their 20's who found out they were having twin boys- Torrey and Derrick. They were having identical twins, so it's obviously not the exact same thing. Anyways... the mom went on bed rest because the boys were suffering from Twin to Twin Transfusion. The doctors decided the babies had to be born. Born around 27 or 28 weeks (I can't remember) the boys were stabilized, brought to the NICU and seemed to be doing well. A few days later while the mom was still in the hospital the couple got the call to go to the NICU because Torrey wasn't doing well. The ended up losing Torrey that day to a brain hemorrhage. They then decided to devote their time to Derrick. They spent their first few days in fear that they would lost Derrick too. It was only after he turned a corner that they realized he would live.
The whole time after having the boys so early the mom was consumed with the feeling that she was cheated out of the pregnancy she wanted so badly. She couldn't wait to get pregnant again to get her completed, perfect pregnancy she felt that she didn't get.
Now... take out a few of the details such as the boys' names and the TTS and you've got our story. The same story-- we lost our oldest twin at least in part to a brain hemorrhage, we lived in fear of losing Colby in those early days, and I cannot wait to get pregnant again.
In part the story, while heartbreaking, helped me to really realize that I am not alone. I know it logically but it was nice to read it. I felt like it was me... right down to the feelings of being cheated out of the whole pregnancy and birth experience. I am so lucky to have what I have, but I can't wait to start this whole thing again! :)
Wednesday, August 26
Yesterday was another milestone... and I didn't even realize.
Yesterday marked 1 month to the day since we said goodbye to Connor at the service.
Things are definitely getting easier. I can talk about him in passing without tears. I can mention things we did for him, plans we had, all that. But when I'm alone it still hurts. I'm still in that surreal period I talked about before. I still can't believe I lost him. I'll be driving down the street and just be dumbfounded that he's gone. He was here... but now he's not. And I think all the time... why him? I know he was sick... but he was big and he was 27 weeks, not 24 weeks. Other 27 weekers survive... so why not him?
When we were trying and we had failed cycles or the miscarriage I could rationalize (while it still hurt) that we weren't pregnant because the eggs sucked or something wasn't just right. Things wouldn't work so they weren't able to. However, Connor was perfect. He had an amazing heartbeat, he would kick and squirm with the best of them, he was almost 3 pounds. He was absolutely perfect. So I'm really having a hard time understanding... why him? And I know I'm not going to find a reason besides "That's the way it happens..." but I am having a hard time accepting it.
Due to their sudden arrival we didn't have the video camera or our camera for the delivery or the 2 days after. My dad took pictures of the boys, but I have zero pictures or videos I took of them those first days. And I regret it so much that I don't have videos from those first few moments and days. What I wouldn't give to have a video of Colby and Connor to show Colby when he's bigger... or for me to watch when things aren't going well. But did anyone expect it to happen how it did? I know I didn't expect to be where I am.
A little random...
In some weird way, Connor both began and ended at the Olive Garden. I was thinking about this a few days ago... the day we found out we were pregnant we at at the Olive Garden (back in Feb) for my dad's birthday. It was 2 days before IVF test day but we couldn't wait. :) I literally heaved a sigh of relief when the two lines appeared. I wasn't sure if I could go through the IVF stuff again soon.
The day we said goodbye to Connor we were all back at the Olive Garden for dinner.
Monday, August 24
Yesterday we were at the book store buying Colby's baby book (FINALLY). We got into a discussion about Colby with the book store lady. She was heart broken that he came at 27 weeks and was in the NICU.
Then she asked... "Is he your first?" And I said yes.
It killed me to say that and I felt horrible like I was betraying Connor. But I didn't really want to get into it with the book store lady. And as Johnny pointed out- she was so upset about Colby she probably would have broken down right there if we mentioned Connor.
So, I'm sorry baby. I haven't forgotten you. You'll always be my first baby.
Saturday, August 22
I have a confession to make.
I am a jealous person.
I've always been a bit jealous. I've been jealous of friends for grades they received, trips they'd been on, opportunities they were given. However... though I'm not sure that this makes it better... I've never wished ill-will on the people I'm jealous of. I have never thought "She doesn't deserve that-- it should be me!" Instead my thoughts were more along the lines of "She's so lucky! I wish I could have that too!"
So, my jealousy presented itself many times over the past few years. When we were doing infertility I was jealous of anyone who was pregnant. Friends, relatives... strangers in the store. You name it. I wished and longed for what they had. But again, I never wished our pain on anyone and I never wished that the people I saw wouldn't be pregnant. Instead I just wanted it too.
When we got pregnant and it stuck, of course some of that jealousy went away. I had what I wanted... but then I was jealous of people who got pregnant easily. Again... I didn't wish it had taken them a long time, needles, pain, and heartache to get pregnant... instead I just wished it hadn't taken us so long.
Then there was bedrest. I was jealous of all the pregnant people who blissfully sailed through their pregnancies without complications or scares. I'll say it one more time... I didn't wish my misfortune on them. I just didn't want to experience it.
So, naturally, when I had the babies at 27 weeks I was jealous of everyone at 28 weeks, 29 weeks, 30 weeks... etc. I was jealous of everyone bringing their full-term babies home. I was jealous of everyone "near the door" of the NICU. I wanted to carry my babies to term. I wanted to keep them safe. I wanted what I thought I would have.
Then... we lost Connor and I was jealous of all the twins in and out of the NICU. I was jealous of everyone who didn't know the pain we were going through.
So, while I've known I was jealous I realized just how much so I was today. Today we went out with some of our best friends. Amazing, amazing people. We love them to death. They are expecting baby #1 in November after only a few months of trying. When they first got pregnant and told us in April, while I was already pregnant with the twins, I was jealous that it happened so fast for them. That must be nice I thought. So today I saw them for the first time after having the twins and losing Connor (besides the funeral because they are AMAZING people and were there for every minute). Again, I reiterate that they are the best people in the world. But she is 6 months pregnant and blissfully unaware of the pain that is possible.
And I was so jealous it hurt.
The couple was bantering back and forth about the nursery and clothes and circumcision. But it didn't matter because they have three months. They have time.
She was talking about the baby and how he/she kicks all the time. She wasn't complaining in the slightest, but I was so jealous. I miss that feeling more than I could ever possibly explain. I mentioned in my words at Connor's funeral that the feeling of the boys kicking was one of the few things that could make me smile.
She was asking me about the glucose test and I got jealous. I wanted to be able to keep my babies safe.
The point of all this? The jealousy post-pregnancy for me is way more painful than the jealousy I had before getting pregnant. When we were only trying, I was jealous of what I wanted but had never had. Now that I've been pregnant, had the babies so early, and lost Connor I'm jealous of what I had and now miss. The innocence, the peace, the security.
And of course there are people reading this I'm sure who are jealous of me. People jealous that IVF worked the first time. People who are jealous that I have even one baby living. And my heart breaks for you. There are a few people in particular who comment on my blog that have been through so much pain and heartache of their own that I can't even fathom how they are still functioning. You-- and some of you know who you are-- are some of the strongest people I have ever known.
After all this ranting you might think I would go back and change things if I could. You might think I would go back to before 23 weeks and change the result of the ultrasound or back to 27 weeks and stop labor. But you know what? I don't think I would. I am a firm believer that everything happens because of the way things happened before. Even changing one small thing can alter the course of all else.
So, while it might be wonderful to go back to 23 weeks and make my cervix longer who knows what would have happened? Maybe I would have gone back to school the next day and fallen. Or maybe a car accident was waiting for me. Who knows.
Maybe I could have stopped labor at 27 weeks if I went back in time, but who knows what would have happened? Maybe my infection would have gotten worse and made both Connor and Colby sick. I might have lost both babies. Maybe I could have gotten sicker.
There are no guarantees. Instead I have to deal with the cards I have drawn and find a way to move on with life. I am so thankful of where I am, who has stood beside me, and my NICU trooper and my angel baby.
But feeling this way doesn't stop the longing for Connor or the stop the jealousy. I am SO happy for other people getting their dreams and having their babies. SO HAPPY. I just wish that my journey was a little different. No one should feel this kind of pain.
And it is for this reason-- my incoherent jealousy I'm working through, the time we spend at the hospital, and getting ready for the school year that I have been so bad at reading blogs (sometimes I just can't) and commenting, but I am still rooting for each and every one of you. Even if I'm a little jealous at times. :)
And something that eases my pain.
Thursday, August 20
Yesterday was 1 month to the day that the boys were born.
Tomorrow is 1 month to the day that Connor passed away.
We're still making our way through everything. Colby's doing pretty incredible. Two days ago Colby moved to a new room. They say in the NICU that moving toward the door is a good sign-- you're closer to going home. So Colby moved from his very centralized room where nurses were always hovering to a room in a quieter area. Though this is a great sign and we're so excited, it was tough leaving his old room. I guess because it wasn't just Colby's room... it was the twin's room. One step away from Colby and Connor and one step closer to just Colby.
We'll have more tomorrow (maybe). I'm done for now.
I'm starting to get caught back up on blogs. I know I've missed things, but I'm back to following. :) And so I say congrats to Ashley!!!
Tuesday, August 18
Monday, August 17
Sunday, August 16
4 weeks ago today the babies came into our lives... very unexpectedly, but very happily. I've been working on the birth story though you all have the gist already. I'm just trying to make sure I don't miss anything. So, though I wrote it 2 weeks ago, it's not ready to go yet.
As I type this it is 11:58am. Exactly 4 weeks ago Colby was born. 4 weeks and 2 minutes ago his big brother Connor preceded him. It's all a fuzzy but distinct memory. I know that doesn't make sense. I felt like I was in a daze the whole time, but I very distinctly remember lots of smaller details. Okay... that doesn't make sense either. It's also very bittersweet. That'll all come in the birth story... Colby might be 4 by the time it's ready to go...
I feel like I've said it 52,000,000 times already but I cannot believe that time has gone so fast. My baby is 4 weeks old. He is officially 3lbs. His is doing great (knocking vigorously on wood) in the NICU. He is happy. His is mine. (And I guess a little bit Johnny's...) He's perfect. He's exactly what we wanted, but nothing has happened how we hoped or expected. While that thought can make me a little sad, I try not to let it bother me. There are NICU stories framed and hanging in the hall outside the NICU. There is one in particular that talks about how coming so early and staying in the NICU has actually made life better for this particular family. I'm hoping we can say the same thing when this is all behind us. Colby-- and Johnny and I-- will be better and stronger because of this terrifying, unexpected, yet amazing experience.
Things are still pretty much the same with the little guys. I miss Connor and can't believe that Tuesday will be 4 weeks to that fateful day. I wish Colby could come home. I feel like I'm missing everything. I can't believe how things happened. I still feel gypped out of the pregnancy and "normalcy". I still have all the same questions and what ifs.
However, some things have changed. I really think that Colby is going to be coming home in October. I'm no longer worried that things cold go really wrong. It's not really "if" anymore... instead it's "when". While I still miss Connor terribly I cry over him less lately. It's still hard believing but I do think that things happen for a reason. I will never completely understand the reason he was taken from us, but I have to believe that it happened because we are strong enough to find a reason, accept it, and move on.
I've never been very religious. So, while I've always believed in God and good and things like that, I had no religious foundation. I wouldn't say I was spiritual instead. I just believed in goodness. And I never really thought about it much. But Johnny and I had a discussion about heaven the other day. We both have been thinking about it on our own a lot since Connor's passing. I have to believe that there is a place for him. He wasn't conceived after so many tears and so much stress and pain only to be taken from us. There has to be a reason. And I have to think that he's up there (or wherever it is) watching and waiting for us and helping Colby. There's just really no other way for me to accept this without thinking that. I have to think that he's safe, happy, and better off.
Johnny mentioned at the service that we aren't the same Johnny and Stacey we were before. I can't believe how true it is. We are completely different people with different views and values and priorities. But that's okay because that's who we need to be for Colby. And as we all know... he's number one. Oh... and he's cute to boot! :)
Oh... and I forgot to mention. I'm going back to work in 2 weeks. Yup. But for good reason. I'm going to work til Colby is discharged and then I get to start leave!! This tacks an extra month and a half on to my leave so I'll hopefully be off from October to February or March!! :) It sucks and I'm not really looking forward to it, but it's worth it for the time!
Friday, August 14
Everyone is very nice to you when you lose a child.
Except insurance companies. Did you know if you lose an infant pre-health insurance you still have to get him a pediatrician he will never visit to activate the insurance to have the bills paid only to terminate the insurance days later?
Thursday, August 13
As I've said time and time again... there are good days and there are bad days.
I've been doing okay.
But I can't help but feeling like everything has been so surreal. I still cannot believe that I had another baby besides Colby. I cannot believe that we had Connor and that we lost him. I can't believe that it's been so long already. I guess I just feel like the past month has been a dream. It couldn't have happened to me... and it couldn't have happened as it did. Colby has SO quickly become my whole world and my reason for being. I guess that makes sense. But it makes me sad.
I'm not going to play the "it's not fair" game anymore. It's NOT fair, but I have to get over that because complaining isn't doing anything. I'm not the only one this has ever happened to... I have to move on. Not get over it, but move on.
I had more to write, but I can't think right now. It's a jumble in my head... I probably won't make sense of it for a long time, but I'm trying.
Monday, August 10
Sunday, August 9
Thursday, August 6
Thinking back to the morning we lost Connor is such a blur. I can't even really remember the time of the morning that it was. Around 4:30am I think is when Kristy came into the room to tell us that something was wrong with Connor and they wanted us upstairs. I think at the time I knew it was bad... why else would they wake me up when I was being drugged up for an infection? I was immediately nervous, and I think that nervousness must have resonated in my voice because only one yell woke Johnny up. I had tried over and over and over to wake him the night before when I was coming down with my infection.
I remember getting upstairs and there were so many nurses and doctors in his room hovering over him. The nurse bagging him was so calm, but I as I watched the numbers I knew that something was terribly wrong. We hadn't yet been there long enough for me to really understand what the O2 levels meant, but I knew they were low and the doctors just kept mentioning how they were terribly low and that they were going to force another transfusion in to him. Usually the transfusions take 3 hours... they pumped it into his tiny 2lb 9oz body in 10 minutes. The whole time Connors little eyes were open watching us. I wanted so badly to hold him... but at the same time I was terrified to even touch his hand. Johnny kept telling me to tell him how much I loved him, but I was scared to. I was scared that that would mean the end. But as I watched those numbers for those hours I think I realized early on that this wasn't going to work and that this really was the end for our little guy. He just didn't look right... but those eyes just kept watching us the whole time. It was calming and terrifying at the same time. I remember staring at those O2 numbers. The doctor said she'd love to see them in the 80's. They were in the low 20's most of the time. I remember wishing and praying so hard that they would jump. Occasionally they did and I'd get a flutter of hope, but they dipped right down again.
As he laid there watching, Connor squeezed my finger a few times. But we still knew we were losing him. At one point the doctor said we could try a 3rd transfusion to get the numbers up, but she really didn't think it would help. He had too much bleeding. We asked her to try anyhow. Maybe this was selfish on our parts, but we needed to know that we had done anything for Connor that we could possibly do. Again, they forced this transfusion in, but the numbers stayed low. We made the decision then- when the doctor said there was nothing else she could do- to unhook him and hold him until he passed. His tiny body was placed into our arms and we watched him. He still managed to open his eyes a little to look at us. It was so hard to watch him... part of me knew this was best, but I also knew that we were in for a life of heartache and sorrow. It was hard not to be selfish and let him be. As we held him, his body was so full of the 3 transfusions and the internal bleeding that occasionally blood would trickle from his nose and mouth. It was terrifying, but it gave me a sense of purpose and mothering. I could wipe his nose and mouth just like any mother.
Once he was unhooked from all those wires and leads he was passed from me to Johnny... the first time we got to hold our little boy was when he was gone. I also got to give him a bath. I wanted to hold on to every possible thing I could. Once our family got there he was passed all around. He was so loved. It was a good distraction for me. I was able to hold it all together until it was time to say our final goodbye. That was the hardest thing for me to do-- to pass my little boy off to the nurses. I knew the next time I would see him would be his funeral and that would be it.
When I got back up to my room that day a little after noon I couldn't believe that it was so early. The morning had been so long that I was sure it had to be later. I was just numb. Completely and totally numb. I laid in my bed and just stared. Johnny laid with me... but there were no words really. We talked a little about arrangements, but I knew I couldn't deal with them. Again... selfish, but I couldn't handle the thought. Johnny handled talking to everyone. I just laid in the dark and stared. I couldn't believe what had happened. I couldn't believe that I was just over 25 years old and that my baby was gone. Totally and completely numb.
I drifted off and on, but every close of my eyes brought images and sounds of beeping and the NICU and doctors. They weren't even really flashbacks... they were just images and sounds that I couldn't escape. Those images continued for several days. Now it's been long enough that when I close my mind I can think of Colby and his eyes and his touch. But at first I could only focus on terror.
The rest of the day continued in the fog. I was still so numb. Walking into Colby's room with no Connor didn't faze me the way it does now. Seeing Connor's name gone on the wall didn't bother me like it does now. Talking about Connor didn't upset me like it does now. I guess I needed a few weeks to get over the numbness to really feel the weight of his loss. Or maybe now I'm only willing to feel it.
Those first few days I did a lot of counting. That was my trick to keep from thinking or crying. I just counted as high and long as I could. I counted as I went the funeral home. I counted throughout the wake. I counted as we left. I just counted to keep my mind occupied. I was so terrified that if I let myself really feel the loss that I would completely lose it and breakdown. (Not that I didn't have a few breakdowns along the way... but I think they were less than they would have been.)
And now I'm forced to deal with the why.
Why did I end up on bedrest? Why did they come so early? Why did Connor pass away?
Did I do too much at school? Did I not take it easy enough? Did I really not realize how serious it was to be pregnant with twins? Did I have an infection? Did I miss something I was supposed to recognize? Should I have realized that my backache the night before was more serious?
It's a cycle that's not likely to end and questions that aren't likely to be answered any time soon. But I think of them often.
Tuesday, August 4
It's been two week since we lost Connor and I cannot fathom how time has gone so quickly. I miss the little guy so much that it hurts. Every stupid thing reminds me of him. Every stupid thing reminds me that I don't have him. And I'm sorry... it sounds horrible... but I am so sick of the other baby in the room with Colby taking Connor's space. That's Connor's and it shouldn't be filled by anyone else. I promise you I want that baby to be safe and healthy and happy... just not in Connor's spot. It's starting to hurt more and more to walk into that room and see him there and not my little guy.
And I'm so jealous of all the other twins in the NICU. I know I should be happy that they're getting a chance at life... and I really am. But seeing them reminds me that my happiness was cut short. I don't want anyone to feel the pain we're going through... but I don't want to have to feel it either. And I'm so scared about what I'll tell Colby when he's bigger about his brother. He should get to play with his brother... not know of him through pictures and ashes and Mommy and Daddy's tears.
Colby is still doing pretty well. He's showing signs of Chronic Lung Disease-- something common in Premies his age, but something we were hoping to avoid. He can be very lazy when it comes to breathing so his O2 saturation drifts and he rides the vent. It's so nerve wracking. I just want him to get better so I can take him home. I can't wait til that day he's off the vent for good. That he can stay on the CPAP and not have to transfer back. It's starting to dawn on me how much I'm missing with him being in here... how many diaper changes and feedings and little things like that. It breaks my heart. I know it's where he needs to be, but it's like I'm a mom... but at the same time I'm not. I want to wait up at 5am to feed him, not to turn on a stupid pump.
We moved into our new place over the weekend. Just another reminder that things aren't how they were supposed to be. Colby's room was supposed to be the twin's room. This was emphasized by everything labeled "TWINS ROOM". My parents bought the crib for us this weekend. We were supposed to be getting 2. Not just one. And I have to redo the registry... everything is twins and doubles. And we have that pesky already-built double stroller. I can't get rid of it... but it was supposed to be for the boys.
I started going through his clothing and most everything we have comes in 2's. What do I do with the second of everything?? In all practicality I know that I should give them away-- they're perfectly good and Connor never wore them, so I have no sentimental attachment that way. But I can't bear the thought of getting rid of them. They were all bought for the boys. Not just for Colby.
When we met with the social worker last week she cautioned us that we would probably face a lot of awkward questions. How many children do you have? (1 or 2) How are they doing? It's come up quite a few times for us already. We don't want to forget about Connor, but how many people want to get into the awkward conversation with us? I almost feel bad dragging them in... the Babies R Us lady and the lawyer included.
We got Connor's ashes last week. He's resting in our bedroom right now right next to his photos. It's nice to have him home. But again... a reminder of how it was supposed to be. He should be in a bassinet (cardboard box maybe?), not in a tiny heart-box.
Maybe it's weird, but I feel like by losing Connor I've let not just my dreams die, but everyone else's too. Everyone was so excited we were having twins. Everyone couldn't wait. But now Connor's gone and Colby's fighting away... it's not the beginning anyone planned. But then again... none of this has gone the way we hoped or planned. And I feel like everyone is always going to look at us as "those people". The broken people you have to tiptoe around. The people who won't ever be the same. The people who are fragile that you have to constantly watch out for.
In one last note, sorry for not checking in to other blogs as much as I usually do. We've been without internet and, really, every free moment is usually spent with Colby or trying to get my thoughts out here. I'll catch up... promise. :)