Right where I am 2013: three years, three months, eight days

Just like the past two years, Angie at Still Life with Circles, has encouraged us all to share right where we are at this moment in our grief.  My post from last year can be found here.

So, where do I stand in this up and down journey on this rugged terrain of grief? My grief has changed shape and size in the past three years, as life takes me down more paths that intertwine with this same road that I've trudged along. Right now, I am stuck. That's the only way I know how to describe it. Losing my daughter, Avery, three years ago at 25 weeks caused a ripple affect that has not seemed to cease. It's brought about so many other circumstances that I was never prepared to face, and now, I still face them everyday.

My son, my Rainbow Baby, will be two years old next month. As he gets older, my insatiable desire for more children gets stronger. Because of the unpredictable nature of my high risk pregnancies, I have been strongly advised to never attempt another pregnancy again. This has been a struggle that I still have never been able to accept. Right now, I am watching everyone who was pregnant with their Rainbows along with me become pregnant once again. Their bodies no longer fail them. They've seemed to be able to remedy what caused them to have their losses. But not me. Even those who have the exact blood clotting disorders I do have gone on to have healthy, full term pregnancies, and are having third babies now as well. My premature Rainbow was nearly lost as well, my body barely responding to what was supposed to fix it. All of this leaves me with so much anger. I don't understand why my body was not made for the one thing my heart has always longed for. I am grateful for my precious Jude, but I never wanted him to be alone.

When I had Jude by emergency c-section while on blood thinners, it caused me to develop blood clots in my lungs. I was hospitalized for his last week in the NICU, and it was one of the most traumatic experiences I've ever endured. I thought I would be over it by now, but it still haunts me. I have been left with a ridiculous struggle with anxiety. Because of the clots nearly two years ago, I am on coumadin and have to get my blood checked once a month (PT/INR). My anxiety has turned these routine finger pricks into horrifying moments to dread all month long. As they get closer, I am filled with fear. I know there is nothing to really worry about, but I cannot shake the feeling of dread over it. Things that never would have bothered me before have my stomach in knots now. I worry that I could lose my husband. I worry that my son could get cancer (ever since his febrile seizure seven months ago). I think about things no one should dwell on. I rob my life of the joy I should have by marring it with the fear of what isn't. I truly cannot control this and sometimes it consumes me.

Right now, I long for another daughter. I so badly want to be able to raise a little girl. I eat my heart out at the store, glancing over the sweet pinks and frilliness of the baby girls' section, knowing that the only baby girl clothes I'll ever buy are in a box in the top of my closet, purchased for a sweet girl that never made it home. I long for the little sandals and the dresses. The dolls and the bows. I love having a son, but I want a daughter again too. I was supposed to have that. I feel like there will forever be a gaping hole in my heart without a daughter to watch grow up. I'll never see my little girl as a bride. Never share girly heart to hearts or give mother-daughter advice. There's so much I can't have and I am dreadfully aware of that. I wish I didn't want it so badly, but I do.

I have a hard time with people who question my situation, just shrugging it off like I could just go to a specialist if I want another baby. They don't understand how serious it is. I almost died twice having my son. He almost died. My daughter did die. Since there are no guarantees at all when it comes to pregnancy for me, how could anyone think I should try going against the advice of more than one doctor? Then people nonchalantly suggest adoption, as if I've never heard of it before. That is not something that we can afford. And my heart aches for my child, so adoption does not heal what is broken. My dream is surrogacy, if that is even possible one day. If someone is truly selfless enough to give us the greatest gift imaginable. It's a huge deal. And very unlikely, but even so, I still keep a mental log of my favorite names... just in case.

I am convinced that if what happened to Avery was the end of our losses, that I would be a much better version of myself now. I grasp onto my loss more tightly than I would if we hadn't lost our future children as well. When I was pregnant with Jude, and everything was going perfectly, I felt at peace. I thought of her lovingly, without so much pain attached to her memory. I felt like I could survive and move past it, always carrying her close but never letting her death define me. But as soon as things went badly with Jude, and I lost all of his future siblings, a dark cloud moved in and it's hovered over me ever since. I'm stuck in the mud. I'm standing still while everyone moves on... But at least I'm standing.

Not allowed

Tonight (yes, after American Idol), I was watching the local news and there was a story about a wife and mother who desperately needs a kidney donor. My initial thought was that I wish I could help her. Of course, even if I was a match for her (I'm not), I would not be able to do something like that. Major surgery doesn't go well with someone on blood thinners... and surgery was how I got my blood clots in the first place.

After seeing that woman's touching story, I kept thinking about all the things I wish I could do for people. I used to donate blood, back before I was married... before I knew anything was wrong with me. I didn't mind doing that. I enjoyed feeling like I was helping. Now, with two blood clotting mutations, I am not a candidate for donation. Every time I see one of those blood mobiles parked somewhere, I feel a little guilty that I can't help.

Another thing I would love to do, is surrogacy. I would have no problem carrying a child for a couple facing infertility. I love being pregnant. My heart breaks for those who cannot conceive and who ache to hold their own baby. I know what that longing is like. I wish I could help even one couple. But of course, as we all know, my body cannot handle pregnancy. I can get pregnant, I just can't stay pregnant without my body failing the baby. I can't even carry another of my own babies without the risk of death (for both of us) let alone for someone else. I wish that weren't at all the case.

I've always enjoyed taking care of other people or using my abilities or resources to bless others. I know if I was the one in need, I would pray someone would step up to help. I wish these issues in my body didn't have to affect so much of my life and my desires.

I'm sure there are dozens of other ways I can help people, especially in situations close to my heart. I just have to realize them and go for it.

NICU visit {7.13.12}

It had been ten months and twelve days since we stepped out of the NICU for the very last time. That last long trip down that endless hall of labor and delivery. Bringing Jude out with us into the light of day for the very first time. And we've meant to go back but time slips away in such an unreal manner lately. I feel like I'm living my life in fast forward. It just goes much too quickly.

On July 13th, Daniel and I finally brought Jude back to the hospital where I had both him and Avery. I wanted to visit my favorite nurse, Daniele, who has always played such a special role in both of my birth stories. She is the one who sat down with Daniel and I and told us that Avery was gone (even though we already knew). She was the one who got me settled in my room to induce to deliver Avery. She shared with us, the story of the sweet baby she lost and we bonded over that. I saw that there could be a light at the end of such a devastating blow. If Daniele was still standing, then I knew one day I would get back on my feet as well. She and I kept in touch over the next year. Then, when I was having issues during my pregnancy with Jude, Daniele was there again. She was the one who told me he would be born early... that he'd be coming "in about an hour." She helped prep me for my emergency c-section. She was there when Jude was born and she was the one who took the first photos of him. Daniele took me to see my sweet boy for the first time. She was there in the coming weeks, when we'd come visit our baby. Daniele made sure to come visit me when I ended up in the hospital with pulmonary embolisms. She took care of me so much. There to comfort me and make me laugh, even in the darkest of times. She is amazing and I am so grateful to know her.

And then it was off to the NICU. It was so odd to walk down that hall again, like we had countless times last summer. The smell, the slight chill in the air, the sounds. All so incredibly familiar. It suddenly didn't feel like it had been so long since we'd last roamed these halls daily, praying for that phase of our lives to end. For this place to no longer be a reluctant second home.

It was so strange, yet so oddly normal picking up that phone and requesting to be let into the NICU. Daniele had told them we were coming to visit, so they let us right in. I can't even describe how it felt to see that long room again, stretched out before us. The soft light, the calm quiet mixed with the sounds of fragile life, the isolettes, the beeping and chiming monitors. It almost felt like we never left. It almost felt like home. So familiar and normal. Yet distant and vague.

The nurses couldn't believe their eyes when they saw Jude. They all made such a fuss over him; how much he's grown and how healthy he looks. He's like a different baby. It was nice to hear that we did such a great job with him, even though all we've done is love him and take care of him.

Sonal, one of our favorite nurses, was there. She was the one who cut Jude's cord when he was born. She took care of him a lot when he was there in the NICU, and we liked her very much.

It was great to see her and a few of the other nurses, and to tell them how Jude is doing, what he likes, and all the amazing things he can do. ;) He's come such a long way. I love how they still cared about him, even after all this time. Nicole, one of the nurses, ran into their break room and grabbed the thank you card and photos I had sent around Christmas time and showed us that they'd been hanging on their bulletin board. It made me so happy to know that he's so special to them, that they never forgot.

The most amazing thing was to visit Jude's little area of the NICU. The back left corner, right by the supply shelf. That's where he spent most of his first 4.5 weeks. To bring him back to that spot, as he is now, as we are now, all this time later. To watch him touch the thick plastic of the isolette from the outside... such a strange feeling. Victorious, maybe.

I still can't believe we have walked this journey. It's astounding to look back at where we've come from and where Jude began. I am eternally grateful that our fragile, tiny baby has grown into this strong, smart, and incredible little boy. 

The scare

I never thought I'd live a life where there could ever be such a thing as a "pregnancy scare." I had always wanted to have several children, so I never imagined before this new reality that it would be something I'd have to reluctantly avoid. I would've welcomed any surprise pregnancy with excitement and happiness.

For "normal" people, a pregnancy scare is pretty much thinking you may be pregnant when you aren't ready to be for one reason or another. For me, it is truly a scare... a literal fear for my life. Daniel and I experienced this just a couple weeks ago.

I contemplated whether or not to share this, since it entails "TMI" personal elements like monthly cycles, but I feel it's a very important piece of my healing journey. So with that small disclaimer, I will continue...

Ever since Jude was born, my cycles have not returned completely to normal. A couples days off or so each month but relatively dependable. Nothing to make me question anything. This past month was different. I was four days late, compared to the previous month. And for those four days, I felt like my world was hanging by a small thread, waiting to be severed and come crashing down.

I'm not like a typical woman. As I've explained previously, I have been strongly medically advised not to have any more children. My body does not do well with my pregnancies. My body failed Avery, causing her stillbirth at 25 weeks. Four weeks later, the pregnancy had caused my gallbladder to go bad and I had to have surgery to have it removed. Then, as we all know, my body started failing Jude and he was born at 31 weeks via emergency c-section. I had a bad bleeding problem during the surgery since I'd been on Lovenox (blood thinner) and had to have a plasma transfusion. Another four weeks later, the surgery had caused pulmonary embolisms (blood clots in the lungs) that nearly took my life.

All of this plagued me in those four days... If I were to be pregnant again, I could lose another baby, or my body could have another catastrophic response to the pregnancy. There's no way of knowing what could go wrong during or afterwards. I'd most likely have to have another c-section so the bleeding would be an issue again. There is no way we could endure losing another baby, and after two near-death experiences after having Jude, I really could not put my family in the position to possibly lose me. Needless to say, I do not want to die either!

As I feared that the impossible had happened, I imagined writing letters to Jude, in case something happened to me, so he would have at least some part of his mother. So he could know me at least a little. I cried, just imagining that... and imagining losing another child. And since I'd most likely have another preemie, what if this one wasn't as strong as Jude was? What if things didn't go as well or he or she had to be born way too early? I couldn't help but worry about these terrible things.

As if those facts and possibilities were not enough, there was another fear I had to dwell on if it were true that I was pregnant. Because of my previous blood clots, I am now on coumadin indefinitely. Coumadin is highly dangerous to an unborn baby. My hematologist told me, above everything else, not to get pregnant because of the severe effects the drug can have on a baby. I was told that I would most likely miscarry or the baby would have birth defects. Definitely not good things at all. My mom did some research and there's about a 50/50 chance that the baby would either die or have defects... or be completely unaffected. Not a chance I'm comfortable taking.

During those four uncertain days, I assessed my life and the way things are. I have a sweet, hard-working husband and a healthy and amazing baby boy. He is the only living child that we will ever get to have and this has plagued and saddened me on a near-daily basis. But comparing this hardship with all of the fears of a potential doomed pregnancy really made me see things in a new light. It's crazy to say, but I think I needed that. I did not enjoy all the worrying, but I am grateful for the good it left behind. I wasn't ungrateful for my blessings, but I was too focused on the dreams I have lost. I didn't want to live that way, but I didn't know how to push it away, and not let it spoil the good in my life.

On the fourth day of all of this, I actually took a pregnancy test. I prayed so hard and begged God for my normal life... well normal to me, anyway. I so badly wanted to just go back to what Daniel and I have together and share my days with Jude and watch him grow. I did feel angry though that this was even happening. That I was taking a pregnancy test out of fear, praying away the one thing I wish for so badly. I would love to be pregnant again and have another baby. But being pregnant wouldn't just be a surprise that came too soon, like it is for most people. It would be a threat to my life and the life of the baby. Sometimes I am still dumbfounded that this is even possible. That it's my reality. And that's when I feel angry that I have to face it at all. It never occurred to me that there could be any scares since we are so careful and do not take this lightly. But now that it's happened and blown over, I do believe it's taught us a lot.

I feel more content with our life. I've been feeling happier. I notice such a difference in my day to day life since this happened. It wasn't easy to go through but I am glad it happened. Maybe it was a little gift in disguise from God, to help me get to where I need to be. My heart has needed a lot of help lately and that was definitely a nudge in the right direction.

All because two people fell in love...

I was inspired by the lovely Franchesca, over at Small Bird Studios, to share my love story and how I met Daniel, in the spirit of Valentines Day. It'll probably be too long, and maybe not very eloquent but here goes nothing!

I used to love web design. I had planned to go to school for it at one point, I liked it so much. I ended up building and maintaining a site for the band of a longtime friend, Jimmy. After some time, Jimmy recommended me to someone at his church named Joel who was forming a band and was interested in a website. Yes, this is how it all began.

Daniel was the rhythm guitarist in the new band. He had just moved here to Florida from San Diego, California when his family inherited a house literally four minutes away from where I lived with my parents and two brothers. In August of 2005, I met Joel, who was the lead vocalist of the band, and Andy, who is Daniel's brother and the lead guitarist, at a church function and we chatted about getting things moving with the website. Daniel was there, across the room, and he was pointed out to me. I remember seeing him earlier when I first got there and thinking he looked intriguing. I thought he was very good-looking and wondered about who he was. I was pleased to find out that he was part of the band I'd be working with.

The months went by, and I was preoccupied with a different guy. I thought things were truly going somewhere with him, but it ended in heartbreak like the rest of my romantic endeavors. During this time, my younger brother, Shaun, had begun attending the same youth group Daniel was a part of. Shaun became friends with him and the rest of the band. Daniel and I were MySpace friends but never really interacted in person.

On St. Patrick's Day of 2006, that all changed. Jimmy's band had a show at a local church that night. Joel's band attended as well, meaning Daniel was there. I remember looking up and seeing him from behind. A little ping of excitement shot through me. I felt happy that he was there. It was cool to actually get to spend some time with him. He was such a nice guy.

After the show, the guys ended up coming back to my house, since they all knew my brother. I was thrilled to find out that Daniel was a photography and Photoshop junky like me. He loved playing with my camera that night.

But I, admittedly, was very hesitant because Daniel was younger than me. I was 22 and he would be 19 in a little under two months. That's a three year and nine month difference. I was very reluctant to let myself have any feelings for Daniel. He was still in high school (until May) and didn't have a job or a car. I had a good job working for my dad and nannying for my precious baby cousin. I was done with my college phase of life. I wanted to get married so badly, like as soon as possible. But I couldn't ignore how great Daniel was. His heart for God, his appreciation of life, his joy in the little things. The other things were so easy to overlook. I just had to be patient. I ended up giving in to the fight and letting myself have the feelings for him.

Becoming friends with Daniel was so easy and so natural. We got so close so fast. I guess it was just perfect. One of those things that's just right. I will never forget the night that we took a walk in my neighborhood (which is now our neighborhood because we live around the corner from my parents) and when we got back, he put his arm around me and didn't pull away. It turned into a hug and we just stood there, holding each other for what felt like forever. I could not believe it. Before that moment, I wondered so much if he felt like I did. I was so afraid he was just nice and I had once again made the mistake of falling for my friend. I was perpetually in the friend zone. But not this time. Finally.

When Daniel left, I could still feel his arms around me and I could smell him. I felt so amazed by what had just gone on between us. It was so simple but so special at the same time. I just knew things were about to happen.

Daniel was a little hesitant to make things official at first. He wanted to pray about it. He'd never had an actual girlfriend before me, never kissed anyone. Somehow he was one of the few left out there who was pure and sweet. How did I find him? I never thought I'd find someone who fit my list of unrealistic qualities. I had previously only had one boyfriend at the age of 14 (who'd been one of my closest friends since we were 8. I unfortunately blew my first kiss at the age of 20 on some jerk I worked with but never dated. Grrr. That still makes me mad.)

Finally, on April 14, 2006, Daniel asked me to be his girlfriend. It only took us a week to say "I love you." And by June, we knew we wanted to be together forever. It was like a scene out of a movie. Daniel would be leaving to visit California for three weeks and I came to see him one more time. We were holding each other in his driveway, saying goodbye. I was crying, of course, because I'm really good at that. Suddenly, it began to pour so hard. We didn't budge, but let the rain soak us as we hugged and talked. That's literally when we agreed we wanted to get married someday. I remember I even told him I'd live in a box with him, as long as I could be with him. And then we kissed. In the rain. It was a sweet moment.

A little over a year later, on June 30, 2007, Daniel proposed to me at a cute little Italian restaurant. It was precious. He doesn't think so, but I think it was perfect. We set our wedding date for January 5, 2008.

In October of 2007, Daniel got laid off from his job and our wedding got postponed indefinitely. I was so devastated. That was the worst thing that had ever happened to us... until the death of our first child, of course. I was just a preschool teacher at the time so we needed him to find a decent job before we could set a new date. It was really hard for me. I thought that would be our life's biggest trial. At the time, I felt like my dream fell apart and I didn't know when I could put it back together again.

In April, Daniel and I decided to take a leap of faith and set a Fall date. I was now a nanny for a family and Daniel was working for two different landscapers. As we started to plan, my older brother got out of his abusive marriage and moved back home. We all made the decision to have him as a housemate and have no worries about affording living on our own with his help. Ron has been a blessing to us. Even to this day, we couldn't make ends meet without him.

On October 18, 2008, Daniel and I got married. We spent our wedding night at a little bed and breakfast and then headed to Orlando for a couple nights. At the risk of sounding cheesy, it was like a dream come true. It really was. Getting married was something I had dreamed of and waited for my whole life. Being a wife and a mother have always been the only things I have ever wanted. Daniel has made those come true for me and I will always be grateful to him for that.

We originally wanted to wait a year before trying for a baby but with our love for children, we just couldn't wait that long. We started trying in June of 2009 and found out on October 16, 2009 that our first baby... Avery... was on the way.

Everyone knows the rest of this story. On March 13, 2010, Avery was stillborn at 25 weeks. I had blood clotting mutations that caused clots in Avery's cord and placenta. That is now the worst thing that has ever happened to us. Through the loss of our baby girl, Daniel and I grew even closer. We had always been best friends and truly cared for and loved each other. Someone warned us that child deaths can tear marriages apart. But for us, it did not prove true. We formed an even deeper bond over burying the child we made together and we grieved together. I'm so thankful that I have a husband who loved his unborn baby that much. That he could feel the same way about her loss that I do, even though I was the only one who experienced her alive. I would have understood if he felt disconnected from her. But he never did. He was always in love with her. Since the day the test was positive.

Avery's birth day was a year and eleven months ago. We are just one month from her second birthday. And here we are, with Jude in our arms. Our six month old miracle baby. He is our happily ever after. Things definitely haven't gone how we have planned. We have endured more in our almost six years together than some people do in a lifetime. (I mean, I literally almost died twice last summer. What the heck?) But Daniel and I blessed. We are blessed to have each other. We are blessed to be so in love. We are blessed to have our precious baby boy. We are blessed to have our sweet girl saving us a place in Heaven. We struggle financially. We struggle emotionally. We struggle with these dreams we have lost. But we don't struggle with each other. Daniel is my best friend. God wrote our love story... and I wouldn't change that.

I love you, Daniel. <3

2011 : A Broken Hallelujah

There's really no other way to describe 2011, but with contradicting terms. It was beautiful and horrifying all at the same time. It was full of fear and joy. Life and near-death experiences. Healing and brokenness.

My biggest wish this year was that my baby boy would make it here alive. I prayed incessantly for his safety and health and spent more than half of the year living in fear for him. God answered those prayers, as Jude is here safe and sound, a healthy and strong five month old. I praise God for that. But the way Jude came and the things that transpired since his birth have left me a bit broken. This year, though it brought blessings with it, was also the second hardest year of my life.

When I prayed for Jude to arrive safely, and even when I begged God, with tears streaming down my face, to let me keep him, I never imagined he would arrive the way he did. I didn't think my pregnancy would be taken away from me once again and I'd miss out on the things I'd been dreaming of experiencing. I never thought I'd be the mother of a preemie, watching my miniature baby lay in a plastic box with IVs in his tiny veins, a tube down his throat, leads on his tiny chest, monitors going off. It was hard to see that. He should have been safe and warm and happy in my womb. He already knew so much pain and discomfort. That still makes me sad.

I still can't believe that that wasn't the extent of my trials this year. At the end of August, I nearly died of pulmonary embolisms. Blood clots in my lungs. For many people with PEs, the first symptom is sudden death. I was very very fortunate to have the severe pain that they cause instead, letting me know something was wrong. In many ways, it seems I shouldn't even be here right now. It's amazing, and nothing short of a miracle, that I survived that. Sure, it was the second worst thing that's happened to me, next to the stillbirth of my firstborn, but I'm grateful that it went the way it did. It could have been so much worse. God isn't through with me yet. I know I'm here for a reason. Needless to say, I'm still trying to forget those five days in the hospital, crying every day. I hated being there so much. It was downright horrible. It leaves me with a sick feeling if I spend too much time dwelling on it.

It was kind of a neat thing, though, that Jude and I were discharged from the hospital the very same afternoon. In a way, I think my experience with my clots stole a lot of the joy of going to the NICU for the very last time and taking Jude home. I wonder how it would have been if my spirit hadn't felt so crushed. Regardless, it was the best moment of the entire year. Walking out that door for the last time, finally not empty-handed. Something so many take for granted as something so typical. It was a walk of victory that day. Walking down that hall. Passing the room I delivered Avery in. Walking out with smiles instead of tears and a severed heart. How wonderful the feeling. The answered prayer. We both made it out alive.

It makes me mad that the next couple of weeks were filled with a paranoia and lingering sadness. I was scared to death that I would form more clots and end up back in that horrible hospital (they are worthless unless you're having a baby or have a baby in the NICU). I obsessed over every single sensation in my legs, afraid it could be a clot. I worried something would happen to me and I wouldn't get to see Jude grow up. It was ridiculous. But at the time, I didn't know that I was protected as long as I was on blood thinners (I wasn't told this until my follow up appointment with my doctor).

At this time, my feelings were so contradictory. I was unbelievably thrilled over Jude. But I was also sad I wasn't still pregnant. I felt robbed of a normal birth. I would have even settled for a normal c-section. I was put under, not even there for the monumental birth of my Rainbow Baby. Daniel wasn't even allowed to be there. I still hate that. I didn't want to skip out on anything. I lost enough with Avery.

Also post-NICU, I failed to be able to breastfeed Jude. I took that hard. I had been pumping for the almost five weeks he was in the NICU. He had just begun learning to eat by mouth when I was hospitalized for the clots. That's when they were probably going to let me try to nurse him. But no. I was still trying to pump but it was so hard to stay on my 'every 3 hours' schedule while I was trying to recuperate. Between the emotional stress, the physical stress on my body, and the missed pumpings, my supply took a huge hit. I was barely producing anything anymore. By the time we got Jude home, he was so used to the bottle. He would not even attempt latching, no matter how many times I tried. Finally, I gave in and decided to surrender my wishes once again.

The good thing about not breastfeeding is that I was then able to get off the twice a day Lovenox shots that were continuing to shrink my clots and prevent new ones. I then got on Coumadin, which I am on now. And probably for the rest of my life. This has left me a changed person. For a while, I felt so unhealthy. It took a long time for my lungs to stop hurting and for me to stop feeling so sluggish. It was depressing. I have to make sure I don't cut myself. I can't eat anything with vitamin K or it will counteract the Coumadin (I can eat vitamin K if I were to make sure I ate it every single day in the same amount and my Coumadin dose would have to be regulated according to it. I think it's just easier to omit vitamin K altogether. I don't like the idea of putting something into my system that makes my blood thicker at this point. I'm still too scared). So that means, I can't have lettuce, broccoli, spinach... Things like that. No salad? Well, that's healthy. I have to go to the doctor regularly to get my blood checked (INR) and make sure my blood isn't too thick or too thin. I also CANNOT get pregnant on Coumadin. If I did, I would either have a miscarriage or my baby would very likely have severe birth defects. That's very scary. And of course, I let myself worry about that. (And TMI: because of my clotting mutations and previous clots, I am not allowed to take birth control pills, thus adding to the difficulties.) I really dislike this new aspect to my life. But I just have to remember that I could be dead. And then I think it's pretty pathetic that that's what I can compare my situation to... Being dead.

So, my trials of the year did not end at Jude's 31 week birth or my blood clots. As I've blogged about before, I cannot have anymore babies. This has plagued me for the past few months. It would have been the furthest thought from my mind, having just had a baby. But it's one of the nagging backdrops to my everyday. It affects how I see everything. I see unfit people easily having subsequent pregnancies and I feel jealous. Let's face it. A part of me deflates whenever I hear a pregnancy announcement. I don't want to feel that way. But right now I do.

Right now, I am honestly mourning the babies I thought I would have. I always wanted three or four. And lately I just feel so attached to 'Jonah.' It wasn't even on our name list with either Avery or Jude. But for some reason, I keep seeing it and it's like my ears perk up when I hear it. It's like it's special for some reason and I can't explain it. If I had another boy right now, his name would be Jonah. So in a weird way, I guess I feel like I'm mourning Jonah. Not a real baby. But Jonah represents a baby I imagined I would have. The brother I would love for Jude to grow up with. I could cry, picturing Jude growing up alone. Whenever I see brothers together, even my own, I think of it. Jude and Jonah. (I'm not thrilled about the "J" theme; it's a coincidence, I guess.) I'm really not sure what the significance of my thoughts of Jonah is. I doubt it means a thing. It's probably just my perpetual interest in baby names and my dream of more children manifesting itself into a 'what-could-have-been.' I have a lot of those.

With all of that said, these last five months have been five of the most amazing months I've ever lived. It's all because of this tiny boy that God has entrusted to me. No matter how broken I have felt, Jude has filled my heart with a joy that cannot be explained. He is everything I dreamed he would be. His presence is just as beautiful and fulfilling as I imagined. Being a mother to a living child is the single greatest thing in this entire world and the most wonderful thing I've ever experienced. I LOVE IT. There is nothing about it that I do not like. There is nothing I could complain about. I savor every single bit of it. I always knew what I lost with Avery, but it's all been confirmed in mothering Jude. I don't take any of it for granted. I know I was made for this. My body may not have been. But I know in my heart that this is my greatest accomplishment. Thank You, God.

I know I did a lot of complaining and painted a negative picture about 2011. But to be honest, I actually have begun to feel myself beginning to heal in just the last couple of weeks. I think I have started 2012 with a lighter heart. Just recently, I have started feeling more myself as far as my health goes. My doctor switched my blood checks to once a month so I feel like less of my time is occupied with my clotting issue. I don't feel any more pains in my chest and I've gotten my energy back. That makes a huge difference! It's difficult feeling like you're sick all the time. It's so easy to take your health for granted.

God has also been healing my heart a bit over the loss of my dreams for more children. It's not quite the forefront of my thoughts any longer. It doesn't battle against my joy for Jude. Maybe I'm beginning to get used to it as my reality. Maybe I'm beginning to accept it. I do know one thing... Jude is definitely enough. He is amazing enough to be all I need. He makes me so happy. It feels so good to feel true joy again.

While listening to Jeff Buckley's "Hallelujah" a few days ago, the line it's a cold and it's a broken hallelujah stood out to me. That is really how I see the state of my life right now. I have lost so much but I have gained so much. I feel so broken down but so blessed. My heart will always be broken over Avery and the things I can't change for the future, but Jude calls for a Hallelujah. I will forever praise God for the gift of my sweet boy.

I'm praying 2012 is the most boring and normal year ever!

Tonight we'll stand, get off our knees, fight for what we've worked for all these years. The battle was long, it's the fight of our lives, but we'll stand up champions tonight.

It was the night things changed. Can you see it now? These walls that they put up to hold us back fell down. It's a revolution. Throw your hands up 'cause we never gave in.

And we'll sing Hallelujah!

We sang Hallelujah!

Hallelujah!

- Taylor Swift

Another new reality

These past several weeks have been a whirlwind to say the least. Life with Jude is amazing and beautiful, everything I knew it would be. I have also been spending this time healing physically from the blood clots that formed in my lungs about a month ago.

In a nutshell, I was hospitalized for about five days, at the end of Jude's NICU stay. We were both discharged the same day. It was a very horrible ordeal. At the risk of sounding dramatic, it left me somewhat traumatized. I don't want to go into my hospital experience. I honestly hate talking or even thinking about it, but even after my discharge, I lived in literal paranoia that I was going to end up back in the hospital. Every little pain, even a normal headache, would throw me into a fit of fear. I would even sit there, looking down at my tiny son, worrying that I wouldn't be able to watch him grow up. It was not a way to live! And I felt so angry because I just wanted to enjoy my new baby, my miracle. The one thing I have been dying for (literally) my entire life.

But since having a follow up appointment with my hematologist, I can breathe again. He assured me that I will be okay. As long as I am on my blood thinners, I am protected from future clots. And the pain I am still feeling in my chest is the clots going away, and the damage in my lungs healing. I really could have died. It was a very serious thing. I sit here and shake my head, thinking about how I nearly bled to death having Jude and then four weeks later, almost to the day, I nearly die of pulmonary embolisms. No matter what, I can never just have a normal childbearing experience. The premature birth and long NICU stay weren't enough. I will never understand why all these crazy things happen to me.

All of this brings me to the subject that is really plaguing me. The one thing that has been wrestling my joy away from me. At a time where I long to be happy and blissful, this new reality is blowing the dark clouds in. In the weeks since Jude has been born, I have been medically advised not to have any more children. There it is. I cannot have anymore babies. I type that and I still can't believe that's my life now. No, I have not lost my fertility. I can get pregnant (not with ease). If I really wanted to have more children, I could. But to do so would be horribly risking my life and the life of my baby.

In a month's time after having Jude, I almost died twice. Even with all of the medical intervention, the injections, the extra ultrasounds, the specialists, I only carried Jude six more weeks than I carried Avery. That doesn't sound very successful to me. My doctor even said, if Jude had not been born when he was, he would not have made it through the week. The same thing that had happened to Avery was beginning to happen to him. For whatever reason, my body cannot produce strong placentas. They begin to die and clot. I was told Jude's placenta looked worse than Avery's... and I saw hers and it was horrible. :(

There have been some people who have suggested that this couldn't be true. That with other help or down the road when medicine has progressed even further, that I can have more children. I appreciate their optimism but the facts are all here. To go against what I see right in front of me would be selfish. I could have another baby to bury. Or I could devastate my family... Leave Daniel without his wife, Jude without his mother, my parents without their daughter, my brothers without their sister... I don't know about you, but that sounds a bit risky to me. And even as someone who desperately wanted several children, I'm convinced that this is the right decision. As reluctant and heartbroken as I am.

The realization that Jude is the only living child I will ever have has really left me in a strange place. I feel ungrateful for being upset that I can't have more. I am thrilled to no end over Jude, but at the same time, I am sad. I can't help it. I gained him, an amazing miraculous gift, but I have also lost all the hopes and the dreams of the future children I also longed for. Jude will grow up alone and I never wanted that. I loved growing up with my brothers. To this day, they are my best friends, truthfully. He won't have that. His sister is dead. I wish this had been my choice. It's not fair to have the decision made for me.

I was the little girl who loved her baby dolls. Who played house incessantly. Who always named all of her dolls. Who kept lists of her favorite names and always knew at any given time what all of her future children's names would be. Sure, the list changed every so often as I got older, but I always had one. Scribbled down in the backs of my journals. First and middle, sometimes paired up with the last name of the guy I liked at the time. All silly, but that was always me. Daniel and I had our children's names picked out before we were even married. Jude has been named since 2007 (He was Jude Lucas then). Avery was named around that time too. I just always knew what I wanted. I have planned it and dreamed it forever. So why am I the one that loses it all?

In my actual physical circle, out of the people I actually know in real life, I have never run into anyone who has had it this way. I hate to complain, but mostly everyone gets to choose how many children they have and most get to do it with thoughtless ease. (Most, not all.) And even those who have run into difficulty haven't been forced to bear the excessive devastation I have. Again, hate to do the "woe is me" dance... I don't like to be that person. But I can't help but notice and wish I had answers. WHY ME?

I really thought my cross to bear was going to be the death of my daughter. I thought an entire life without her was enough of a burden to live with. I can't believe I have to endure this as well. I feel like I've lost my future children as well. I mourn Avery and I mourn the children I will never get to have. They had names. Uriah... Jonah... Cadence... I always pictured them being here. They never will be.

I despise that this is my new reality. Every time I have a baby I get a new reality. I hate that I am experiencing some of the same feelings with Jude that I also felt with Avery. Avery died. Jude didn't. I hate that circumstances have left me feeling slapped across the face anyway. I just want to be happy and have my babies. Why does that have to be the one thing I am denied? Disgusting, unworthy people across the globe can pop 'em out like it's nobody's business. There are women who kill their own children. Yet they are the ones who find it effortless. So many beautiful and deserving women struggle to even get pregnant let alone make it successfully through a pregnancy. I will never understand this and it will always anger me.

Before Jude was born, I struggled with bitterness against women who complained about being pregnant or who complained about the inconveniences of their children. It bothered me because I wanted so badly to have my daughter in my arms instead of in the ground and it was so painful to feel like other "normal" people were taking it for granted. Now I feel like I'm left with another reason to fight bitterness. Not only is my daughter dead, but now I am not able to have anymore babies, thus making pregnancy and childbirth even more sacred to me because I am now denied it. It's really hard to feel that way. Like even today at the store, there was a stupid onesie that said, "My mommy is exhausted." It made me angry. I gladly get up all night for Jude. Because I know I am so blessed to be able to. I lost all of that with Avery. I was up all night crying for her instead and that is not better. I love waking up to his sweetness all night, whether he's crying or not, because I know this is all I get. He's going to grow up and I will never experience the joy of my baby again. So, needless to say, my perspective is severely warped when it comes to this. It may be unfair and it may make me a jerk, but I'd like to think I deserve a little grace after all the hell I have been through that's made me this way.

This is all very raw and new right now. I am still angry. I'm feeling mad at God. I just feel like it's all so unfair. Oh I know, "life isn't fair." Regardless... Jude is here safe and healthy like I prayed so desperately for but I'm so mad that instead of being able to bask in the glow of his presence, I am mourning the loss of my will. My dreams. My own choices. I have my days where I feel like I'm accepting it. Where I know Jude is enough (because he is) and I'll be okay without what I wanted for my life. Then other days I just cannot believe that this is my life. That I am on coumadin (blood thinner) possibly for life (which will cause severe birth defects or kill my baby if I were to get pregnant on it). That I don't get to have my babies... I know I'm getting redundant now. But this has been festering in my mind for weeks and I haven't had the chance to spill it out until now.

I'm sure some people will like to think that I'm ungrateful for finding something wrong during a time where something beautiful has also happened to me. I am completely and deeply grateful for Jude. I am SO beyond happy that he is here. I am fiercely in love with him and am cherishing every single second with him. But because I love him so much and wanted him so badly and because I wanted several children so badly, this affects my happiness. It's not fair that he's all I get after everything that's happened. I never get to have my cake and eat it too, I guess.

Time will pass, and I will get used to this. I'll never like it. But I'm sure I'll learn to accept it. Until then, I have a lot of anger to work through. I want to live a happy life with my little family. And for the most part, I do. But I am still carrying so much pain. I just want all the disappointment and loss to be over. I just want to have all those everyday "normal people" problems. Not these ridiculous earth shattering ones. I know life happens and no one is exempt. But I could really use a break for the next few decades. Either way, for now, I am spending each day with my beautiful tiny boy... and letting him heal my broken heart.

Jude's NICU journey

Jude was in the Neonatal Intensive Care Unit (NICU) for a total of four weeks and four days. The first month of his life was spent in a hospital, instead of his home. Several of his firsts were shared by nurses instead of us. It was a long and difficult journey, but one that we'll never forget. It had it's hard moments and it's sweet moments. We made so many precious memories with our preemie son there... ones we wouldn't trade for anything. So here it is, Jude's first month of life, in photos:

Jude on his first day, July 31st, after he got settled in the NICU. He only needed oxygen (just 35%) for about a day.

Day 2: All settled into the isolette and no longer on oxygen.

Look how skinny he is. His hiccups looked so violent. :(

The tube down his throat was to drain any excess fluids in his belly. At this point, he was getting nutrients via IV. I hated this tube because he would repeatedly gag on it and it was scary.

The famous monitor. It was so easy to obsess over Jude's stats and worry if they were too high or too low. The top number is his heart rate, the middle his oxygen saturation, and the bottom his respirations.

Just a few days old, Jude was treated with light therapy for jaundice.

The next day, he had a new, better light for his therapy.

Jude's temperature had to be taken every 3 hours to see if he was learning to regulate his body temp.

A feeding tube was put into his nose, taking place of the one down his throat. This is when his tube feedings began. I was then able to pump so he could have breast milk. The velcro on his head is for the little light therapy shades.

Daniel doing kangaroo care with Jude. It's skin to skin contact, with the baby down your shirt, just like a kangaroo. We loved doing this.

Feeling Jude's warmth and closeness was so special.

Our little boy all stretched out in his isolette.

Holding him was always the best thing, though all the wires made it difficult.

Jude graduated to real diapers, in preemie size.

So beautiful. Look how big a small round band-aid looks on his hand.

One of my favorites.

Jude was finally allowed to get dressed! What a surprise to come in and see that day!

Jude wearing one of his own outfits for the first time, and I got to dress him.

So small even in a preemie size.

I just love his little legs in this photo.

One of his first times using a pacifier. We couldn't get over how big this preemie sized one was compared to his face!

Jude's cord stump fell off!

Feeding him his first ever bottle.

Learning to eat by mouth was one of his biggest goals so he could go home. He was a very sloppy eater.

Tube feedings in between his bottle feedings.

Jude in his new bed for the first time!

So tiny in Daddy's arms.

One of my favorites. Starting to get some chubbiness on those cheeks!

Since his first week, Jude smiles in his sleep like crazy.

We love his silly faces.

His nurse one night changed his feeding tube while we were there so we could see him without it for the first time since he was a couple days old.

Working on his eating!

Finally, his tube is out for good and all feedings are by mouth! (8.29)

On 8.28, I was admitted to the hospital with blood clots in my lungs. I was finally able to visit Jude on my second night. It was an awful experience, nearly ruining the joy of Jude's pending discharge. :/

Jude's last photo as a patient of the NICU. (8.30)

And here he is... all dressed and ready to go home! (9.1)

Jude's stay was long and emotional. It's so hard to leave your baby somewhere for strangers to take care of. To not bring them home and cuddle them like you want to. To not be the one in charge of your baby... Some nights, we would leave the NICU really late and I would just cry kissing him goodnight. I ached for the long nights of feedings and having him in our home to care for and love on at last.

Though those four weeks were difficult for us, we are very blessed. Jude did well and only improved the entire time. We didn't have a lot of reasons to worry. So many NICU experiences are not this way. Sometimes it's a back and forth journey where the baby is worse some days. Jude never did that. He only thrived and got better. We were also blessed that his stay was shorter than it could have been. We were originally told 4-6 weeks and he was only there for four weeks and four days. He was released a whole month before his due date. Home before he was even supposed to be born. My heart goes out to the families whose babies had to fight for their lives and struggle, and especially the ones who didn't get to come home. As hard as this was for us, we know it could have been so much worse.

This was an experience we'll never forget along with wonderful nurses we'll never forget. Thank You, God, for bringing Jude home safely. That's everything we prayed for.