Tuesday, October 28, 2008
This year, we're hosting the big Halloween party for all of our friends at our house. We went shopping for some decor and provisions last night, and as I walked around the aisles, I came across the infant costumes. It really stings to not be able to pick one out for Dylan. It stings that we're not going to have him to dress up and show off for Halloween. It just really stings.
Tuesday, October 21, 2008
I recently had a thought that choices exist in absolutely everything we do in life. There are very few instances when one can truly say, “I had no choice.” You choose how to raise your kids. You choose how to treat your friends. You choose whether or not to go to work.
I have recently used my “I had no choice” card. Someone made the statement to me that she didn’t know how I managed to go to Dylan’s memorial. In my mind, I could not choose to skip it.
Don’t They Communicate?
Hospitals, I mean. In July (when Justin and I took a vacation, trying to escape the rest of the world), we got a call from a lady asking if Dylan had completed the vision and hearing testing required by the state. I responded back, “I’m sorry. He’s passed.” The lady said, “Oh, he passed. Do you have the results?” I reiterated, “Actually, he passed away.” She apologized profusely, but the poor lady couldn’t get off the phone fast enough.
Just last month, a lady from Northside (where Dylan was born) called to ask a similar question. I finally asked the lady to update us in her little computer, trying my best to avoid sounding the least bit irritated.
Then there was my first post-op trip back to my OB’s office. The nurse there (who’s as sweet as can be) asked me how the baby was. I told her that Dylan didn’t make it, and she was so sorry. She told me, “We had a feeling but were never told.” There should be some kind of alert system for the doctors and hospitals to be informed when something like this happens.
“How are we ever going to afford this?” I’m sure everyone thinks that when they’re getting ready to have a baby for the first time. We thought about it, especially when we found out that Dylan was going to need 3 surgeries on his heart after birth. We went ahead and doubled-up on insurance, getting coverage with both my and Justin’s employers. When we filled out the hospital forms, we made sure they knew we would have primary and secondary coverage. So when the bills roll in, I always dread opening them a little especially the ones that are multiple pages. When you have the word “Continued” in the amount due box that can’t be good. Imagine my relief when I flip the page and it’s only like $21. Ahh, insurance. I especially enjoy the letters from the insurance companies that are like a beacon, forewarning you of bills that will come.
I complain in jest, but I just wish, more than anything in the world, that Dylan was here with us regardless of whatever financial hardships we would face with his medical condition.
One of my favorite parts about working in the television industry is editing video. In every video editing program that I’ve ever worked on, everything is done on a timeline. Timelines are something that I can take real comfort in. You have control over everything, including where to put start and end points. It’s all very black and white.
Life, not so much. Start and end points are all grey. How is this relevant to anything at all? (I know, I digress.) Every time people ask Justin and I if we’re going to try [having kids] again, we both answer without hesitation, “Yes, of course!” We went into our pregnancy wanting kids, and now more than ever, we still want them. That desire didn’t just go away.
When’s the right time to start trying, though? That point isn’t defined on some kind of cosmic timeline for us. It’s hard because we struggle with making sure we’ve given ourselves adequate time to grieve. Then we realize that we’ll be grieving for the rest of our lives. And for me in particular, I don’t want people judging us and thinking it’s too soon for us to want to have kids again.
I was flipping through the newsletter from our support group, and there was a section in there with birth announcements. Each announcement was set up so you could see the date of their previous loss and then the new addition’s date of birth. I mentally calculated in my head how long each of the couples waited to see if I could get a definitive answer on this. But then, the more and more I think about it, the more and more I feel that timing is different for everyone. Some people waited years, others months. What’s right for you may not be right for us. Justin and I will have to figure that out for ourselves because, at the end of the day, we all do stuff in our own time.
Closing Thoughts of the Day
“Those that live long lives have much to learn, but those who die young are here to teach.” --Bhuddist saying
“If you lose a parent, you lose your past
Monday, October 20, 2008
Life after Dylan's 6 days was numb. I didn't really have time to digest or feel what was going on around me. We got home (on Tuesday) and immediately started planning a memorial (for Thursday, the only day our Priest was available to do the service for another 2 weeks). The turnaround was quick, but we managed to pull everything together. We sent out bulk texts and e-mails, knowing that on 2-days notice, alot of people probably weren't going to make it.
Our NILMDTS photographer and his wife graciously turned around a few pictures for us to use at the memorial. We were e-mailing back-and-forth until after midnight on Wednesday. Justin's brother put together a beautiful slideshow of the pictures that we'd taken at both hospitals to display in the church lobby. Justin and I made memorial cards for the attendees to have. Again, we only had like 40 printed, thinking we'll probably get some of those back. We even chose all the readings for the service. I think keeping busy was also keeping us from getting emotional.
On Thursday morning, we had more running around to do. I bought a new dress to wear to the memorial, but not because I needed one. It reminded me of a scene from Sex and the City, when Miranda's mother died. She said, "I'll probably just buy a lousy black dress that I'll never wear again." I felt the same way. After I wear this dress to my son's memorial, I'll probably never want to wear it again (of course I don't do lousy, so I ended up buying a dress from Banana Republic). And I started thinking about more scenes in my head, like in Steel Magnolias after Shelby's funeral when her mother said, "I realize as a mother how lucky I am. I was there when that beautiful creature drifted into my life, and I was there when [he] drifted out. . . I just want to know why?! . . . No, it's not supposed to happen this way, I'm supposed to go first. I've always been ready to go first." It's always so tragic when parents have to bury their own children. It's not right, it seems like it messes up the whole cosmos of everything.
When we got to the church I made my way inside after greeting a few people in the lobby. I enjoyed that quiet time before people started filing in to just sit and let it all sink in. Up to that point, I hadn't done that yet. I began to sob. What I didn't realize when I sat down was that Justin and I were to be part of the processional when the Priest came in. So after everyone seated themselves, Justin came up to get me. When I turned around, I saw for the first time that the church was almost full (more full than some of our Sunday masses). I was overwhelmed, but I tried to make as little eye contact as I possibly could because I didn't want to lose it before the memorial even started. I think Justin carried my entire weight up the aisle.
The memorial was perfect. I pretty much kept myself from crying the entire time until Justin went up to read. Our Priest told us that if we wanted to, we could prepare something to read but that it wasn't necessary. I knew that I would not be able to carry myself well if I went up there, but Justin was bound and determined to do so. He wrote a beautiful piece, and before he even started reading, I could already hear people crying. Not 1 or 2 words came out of his mouth before his voice started cracking, and I so badly wanted someone to go up there and read it for him. But he continued. His strength of character was so strong and evident at that very moment. I don't think there was a dry eye in the house.
After the recessional, we ended up in the lobby just standing there not knowing exactly what to do. All of a sudden, I noticed these lines start forming in front of Justin and I, kind of like the receiving line at a wedding. People were coming up to hug us and say their condolences. There were even people there who we'd never met before, alot of them members of the church. It was fascinating how I'd react to the different people in line. In some cases, the exchange was very casual and I was completely fine. In others, I would bust out crying and just fall into the person's arms. And for some people, they lost it and needed my strength and support to hold them up.
The memorial cards went so fast that some people came up to us and asked if we had any more. I was not prepared for this many people to show up. We felt blessed to have Dylan's life honored by so many people. Alot of our co-workers even made it.
Justin said he could definitely tell the difference between people who came up to him that were parents and those that weren't. There's that level of sympathy that you have from another parent, and that whole underlying, "I don't know how you can go through this" thought.
Justin returned to work a mere 2 weeks after Dylan's death. It was an extremely difficult transition for him because he would still have people visit him at his desk to ask how the baby was, not knowing the entire situation. I, on the other hand, took the full amount of paid-time off I could take (12 weeks total, supported by the rest of my vacation and personal days for the year). During this time, I grappled with returning back to work. I thought about how much easier it would be to just get a new job where no one knew me, where I wouldn't have to face the questions or the sympathetic looks. By the end of August, though, I decided that I needed to just suck it up. Justin had to go back to work, and he survived. Why couldn't I do the same thing?
The first Monday after Labor Day, I went back to work. It was actually much easier than I anticipated. Most people would just "duck and cover" when they saw me, to completely avoid any uncomfortable situations. The more and more people saw that I was fine and would not just break into tears when they came around, the more and more people started treating me like nothing happened (just like the good ole days). See, that's what bothers me, though. It happened. My son died. While I realize that most people don't want to sit down and have in-depth conversations with me about it, I do wish that more people at least acknowledged it.
We attended a perinatal loss support group at one point. I think I would've been fine had the date not been the 11th (Dylan would've been 2 months old). The 11th and the 17th of every month have been dates that are particularly emotional for me. Another emotional one was the 4th of July (my original due date). Anyway, we got into this small room where the chairs were set up in a circle. Each chair had a travel-size package of Kleenex on it. I thought, "Oh, great" and prepared myself for an outpouring of emotions. We went around the room for each couple to share. When it came time for us, Justin had to talk because I was already knee-deep in the Kleenex. It was amazing how everyone's story was so different, but we were all there for the same thing. For the first time, we weren't getting sympathetic "I'm so sorry for you" looks. We were getting empathetic "I know what you mean" nods. I was comforted by the fact that these people actually understood what we were going through and could relate.
Saying Something Wrong
I've read many grief and loss books and pamphlets. I'm amazed when I read the "What Not to Say" passages. Surely, people don't say things like that, right? My Priest forwarned us that we would be angered by some of the things people say, but to give them the benefit of the doubt becuase they're only trying to help. I won't tack on a list of things to not say. What I will do, however, is list the things that helped me, even if they weren't all verbal:
1. "You have handled this with so much grace."
2. "I admire your strength."
3. "We will continue to pray for you, Justin, and Dylan."
4. Sending an e-mail that simply says, "You're on my mind."
5. Sending a card in the mail.
6. Making a donation in Dylan's name to the children's hospital or NILMDTS.
7. Getting a beautiful necklace with Dylan's name engraved on it.
8. Getting me out of the house during my "hiatus" to do lunch.
9. Asking to see the nursery.
10. Sending us a tree (one of the more unique gifts we received), to symbolize the promise of growth and more life.
Sunday, October 19, 2008
Saturday, October 18, 2008
It's hard for me to not feel cheated or teased by God for taking you from us too soon. I have to think of you as being much too precious and good, too perfect for this world.
We haven't shared nearly enough time together for me to shower you with the love I hold in my heart for you, but I'm sure you'll take that love and more up to Heaven with you.
Please know that your Daddy and I were overjoyed and excited about getting to spend our lives with you. And now we're blessed with the thought that you'll always be watching over us from your perch up above.
You are and will always be our little guardian angel. Thank you for blessing us with the time that you did have for us. I will cherish this time forever.
You get to go to a place where there are no monitors, or tubes, or pumps in your stomach. You get to go to a place free of pain, or worry, or discomfort (even though your pouty face is still so cute)!
I will think of you and Pray for you everyday for the rest of my life, and I know Daddy will too. You are an amazing miracle that I had the blessing and opportunity to hold for the last 9 months.
As I say to Daddy every single night: "Good night, sweet Prince!" Mommy and Daddy love you very much!
More recently, I wrote this poem to Dylan:
In Memory of Dylan Gabriel
My arms long to hold you
To rock you to your sleep
To bring you close to my heart
And comfort you while you weep
My eyes long to see you
To gaze upon your face
To stare into your perfect eyes
And witness God's good grace
My hands long for your tiny grasp
To let you hold onto me
To show me just how strong you are
And how strong I must be
My lips long to kiss you
To sing you many songs
To read you bedtime stories
And tell you nothing's wrong
My body aches from missing you
And my heart is incomplete
But one day we shall reunite
At Heaven's gate, we'll meet.
Friday, October 17, 2008
Wednesday, June 11, 2008
Our first son Dylan Gabriel Brooks was born at 6:25 PM on June 11, 2008. The operating room experience was, in one word, bizarre. The lights were all aimed at me like some kind of sci-fi movie. All the doctors' and nurses' faces were covered with masks. It felt like there were hundreds of them. They placed a sheet coming up from my chest to cover my line of sight. I assume to keep me from seeing myself cut in half as well. They let Justin back into the room.
The doctor did an initial cut to make sure I didn't feel anything, and then he proceeded to bring Dylan into the world. Not 10 minutes after he started, they put Dylan up over the curtain so that we could catch a quick glimpse. He was 4 lbs 10 oz, a little gooey, alien-looking creature. Then they quickly whisked him away so that he could be evaluated by the perinatalogist. None of that was really any surprise to me. Because of Dylan's existing heart condition, I was prepared for the fact that he would be taken away almost immediately. Meanwhile, I'm getting stitched up and rolled out to recovery. We had to wait about an hour in recovery for my blood pressure to stabilize (surprise-surprise) before they wheeled me back up to my room.
Justin ran back and forth between the recovery room and the waiting room, where a handful of our family and friends were eagerly awaiting the news. When we were finally back in the room, our guests all came in to visit and see how mommy was doing. Dylan was already in the NICU at this point. After about another hour, the perinatalogist came into the room to tell us her findings. Everyone left the room, and she informed Justin and I what they could tell from their initial screenings. She told us Dylan was VACTERYL and explained the condition to us. First, she told us Dylan had an extra vertebrae (V). A cardiologist came and confirmed the congenital heart condition, HRHS (C). Finally, and what ended up being the most serious of all his conditions, his renal (kidney) funtion was questionable (R). They still weren't sure if he had 2 kidneys and whether or not they were funtioning. Further screenings would need to take place when Dylan got transferred to Children's Healthcare of Atlanta.
Once our family and friends left the hospital, I spent the rest of the night in my room attempting to sleep off the pain. And Justin spent every chance he could excitedly walking over to the NICU to visit Dylan.
Still no word on the transfer to CHOA/Egleston. They were waiting for spots to open up before they would take him over there. And because, all in all, Dylan was stable, he kept getting pushed back for newborns who needed the transfer more urgently than he did. When I woke up that morning, I was bound and determined to go to the NICU to see my son. Justin couldn't have all the fun without me. It was a chore just to sit up, but I finally made it over there. Justin wheeled me through the hospital, and he seemed to know the route like the back of his hand from his numberous trips to see Dylan. He was so amazing to look at. I just sat in my wheelchair and stared at him in fascination. Justin and I had created this life, the most handsome boy in the whole wide world (he takes after his daddy).
By early evening on Friday, the transport was finally ready to take Dylan to CHOA/Egleston. Justin and I just happened to be in the NICU visiting him and anxiously watched as they packed our son up in a travelling incubator. At this point, my doctor had not released me from the hospital yet, so Justin rode with Dylan in the ambulance. Honestly, the thought had not yet crossed my mind that I should be alarmed for any reason. I knew he was going to be in good hands at Egleston. Justin sent me text updates the whole time he was there.
At Egleston, there was a whole team of people eagerly waiting to meet Dylan. Justin told me, "He's the most popular kid on the block already." It took hours for all the doctors to run their various tests. Justin went to spend some quiet time with Dylan, and when the doctors returned, they dropped the bombshell on him. After an in-depth ultrasound, they discovered that Dylan only had one kidney, and they were almost certain it was not functioning. They drew some blood and said they would run some tests on it. By the morning, they would be able to give us a difinitive answer based on the creatinine levels. Justin stayed with Dylan for another hour. He was so torn between not wanting to leave his son and having me in the hospital with no idea of the extremity of the situation.
When he text me that he was on his way back, my gut had already told me that something was not quite right. As he relayed his day's ordeal with me, we both just cried. Friday night was the first time I'd really thought about the urgency of what Dylan was facing.
If the creatinine levels confirmed that his kidney was not funtioning, our options would be very limited. When Justin woke up on Saturday morning, all he could think about was getting back to Egleston to be with Dylan. He was in Dylan's room for 5 minutes before the perinatalogist and surgeon came down to explain the blood results. What they'd found was the worst-case scenario. Dylan's creatinine levels were 5x higher than a normal kidney would allow, indicating kidney failure. The creatinine level would eventually cause the rest of his vital organs to shut down.
The options were minimal. He was too young for a transplant because the anti-rejection drugs would be toxic. Internal or external dialysis was not feasible because of his heart condition. We were basically left with a very sick baby and no viable choices.
Justin rushed back to Northside to have me released, so that we could be together as a family. We had to track down my doctor as he was doing his rounds and explain the urgency of the situation to him. I just sat in the hospital room and waited, stared out the window and waited. Once the nurses knew what was going on, they were all very accommodating. They found a wheelchair and took me through the back hallways of the hospital. Justin pulled the car around, where the rest of the mothers were loading up their babies to take them home. I sat in my wheelchair, no baby, and with the full knowledge of the battle Dylan was facing at Egleston.
When we got to Egleston, I just took Dylan into my arms and cried. We were trying to be as rational as we possibly could with the situation, and Justin's first thought was to call our Priest so that he could come to the hospital and baptize Dylan. We had no idea at this point how much time he had, so our sense of urgency was high. Our Priest got to the hospital a few hours later and performed the baptism for us. Again, I just held Dylan in my arms the whole time and cried.
After a few more hours, they told us they would move us into one of the step-down rooms in the NICU, where babies recover from surgery. That way, we could have our own private room and bathroom. A social worker came to visit us in the room and asked if we needed anything. She also suggested that we contact the Now I Lay Me Down to Sleep (NILMDTS) foundation, an organization of volunteer photographers that came out to hospitals and took pictures of terminally-ill or recently passed infants and their families for free. She even went ahead and coordinated some time for a photographer to come visit.
Sunday (Father's Day)
Our NILMDTS photographer took time away from spending Father's Day with his own family so that he could take pictures for us. He was an absolutely amazing person and photographer. He came into the room and just immediately started snapping shots with Dylan. Dylan was sleeping, until the flash they'd brought kept going off. He woke up, very reactive, and wanting to follow the flash everytime it went off, that shutterbug (just like mom and dad)!
We were able to have his tubes removed for the pictures. The hospital also had a beautiful garden area, where we had the opportunity to take some really great outside shots. Most of the pictures on this page are from our NILMDTS photographer, thank you James (http://www.jamesadamhill.com/)!
The whole time we were at Egleston, we did not want any visitors. It was too hard to see family or friends at this point. By Sunday night, though, we sent a text out to our immediate family. We invited them to say their last goodbyes to Dylan, if they desired to do so. Justin and I escaped to the chapel to be alone and pray, while they all visited.
Our time at the hospital was spent dealing with a real roller coaster of emotions. We rejoiced in the time we got to spend with Dylan. We were angry over what he was having to go through. We were scared of what was going to happen from here. We were sad that we would have to say goodbye soon. We took turns holding him the whole time, basically only putting him down when a nurse came in to check his vitals.
I wrote this on Monday, our last full day with Dylan:
Dylan is 5 days old today. Our little man is such a soldier. He's been so strong and undergone so much pain in his short lifetime. It's hard to see him suffer. Justin and I decided to start him on morphine last night. He was more fussy than usual, and even though we knew the pain medication would knock him out, we just wanted to take all his suffering away.
We spend our days and nights sleeping in shifts, forcing ourselves to eat when our bodies beg for the nourishment, and holding Dylan (our most precious time of all). We talk to him, sing to him, read, everything we can to let him know Mommy and Daddy are around. Even the silent moments with him in our arms is dear.
Now, the hardest part is knowing exactly what's going to happen, but having no clue in the world what to expect or what it will be like. We had a momentary scare this morning when the alarm sounded that his breathing was slowed and his heart rate had decelerated. I remember Justin saying, "That's what it's going to be like", but there is still no preparing for it.
We got him more morphine, and he's been sleeping soundly since. Never before in my life did I experience such a roller coaster of emotions. There's that overwhelming and instantaneous joy that I felt on Wednesday, when Dylan finally decided to grace this world and then there's that ultimate devastation from knowing that his days with us would be so limited. Never before could I know what the meaning of "being on borrowed time" really meant until now.
And in between the joy and devastation, there's a whole spectrum of other emotions that mostly just leave us drained and numb to the world until we force ourselves to sleep it off for a few hours. As a Mother, I just want to harbor both Dylan's and Justin's pain and worries from them. I want to take Dylan in my arms and lull him away from all this. It breaks my heart to know that this is the only life he'll ever know.
I hold such anger towards God for putting us through this. There are moments when I'm all cried out though, and I just have to smile at Dylan and feel blessed to have had him at all. I have to think to myself that God is calling our little angelic son Home.
I worry also that, after everything is said and done, Justin and I will have a difficult time trying to find any sort of happiness or beauty in life. After this whole ordeal, how can our hearts ever heal and not feel cold and callus towards the rest of the world? How long before we're able to face our family and friends?
How long before I'll want to hear about another person's baby without holding any sort of jealousy or resentment towards them?
I guess only time will tell with all of these things. Maybe Justin and I were put through all of this because we're the only ones truly stong and brave enough to survive such a tragic loss. God would not burden us with more than we can handle, right?
Tuesday, June 17, 2008
We were getting minimal sleep in the hospital. Justin wanted one of us to be awake when the time came, so we took turns holding Dylan. His heart and breathing function had already failed several times throughout the night, but it was as if his body just kept jumpstarting. Our eyes were glued to the monitor, thinking that would give us a definitive answer on when he'd pass. But at this point, our bodies were exhausted. We both needed sleep and food.
Justin wheeled the pull-out chair that we'd been sleeping in closer to Dylan's monitors. The three of us stuffed ourselves into the chair and fell asleep as a family. I had Dylan on my chest, and we just dozed off. I'm not sure how much time passed before a nurse came in to check on us. I woke up as she was leaving the room. I looked over at the monitor, and Dylan's breathing had slowed. I didn't want to wake Justin up because I thought it could've been another one of the dips in his vitals that we'd endured all night. But it felt different this time. I watched the breathing monitor flatline for a good three minutes before I woke Justin up and told him.
I think it was mildly appropriate that he passed away on my chest, where he could hear my heartbeat, the sound he'd gotten so used to for 9 months. We called the nurse in. We had no idea what to do. No idea. She asked us if we wanted to bathe him and clothe him. We spent the next half-hour doing just that. We put him in this adorable gown with blue dogbones all over it. It had a puppy on the front and said "My Dog" (it reminded us of Inu).
Wednesday, October 15, 2008
June 2008, the month that changed our lives forever, the month that will go down in infamy in my book. From 30 weeks on, my pregnancy consisted of 5 baby showers, twice weekly doctor appointments, childbirth prep class, a hospital tour . . . you know, the usual. I had a regular appointment at my OB on the afternoon of June 2nd. My blood pressure was higher than normal and the amniotic fluid was just below the level it should be. My doctor told me to go straight to the hospital from there and check myself in, do not pass Go, do not collect $200. I ran home just to grab my hospital paperwork and give our dog Inu some lovin' (I didn't even pack a bag). At the end of the week, I would be 36 weeks along (I thought that was plenty, and I really wasn't freaking out). I gave Justin a call on the way to the hospital, and he met me there.
My first night there I was in the Urgent Care area of the hospital, right next to the ER. My doctor came to see me that night and told me that I would be staying overnight. They administered an IV of magnesium (to prevent seizures). That was excruciating (still gives me chills thinking about it, and I have a high pain tolerance). Anyway, my doctor's fear, of course, was preeclampsia. A tech from Maternal Fetal came that night and performed an ultrasound.
The amniotic fluid was fine at that point, but I would still have to sleep off the magnesium in that hospital room overnight. When my doctor came to see me the next day, he said he was recommending STRICT bedrest, and that I would need to stay in the hospital for the remainder of my pregnancy. They moved me up the the High-Risk Pregnancy wing that night. At least I'd be surrounded by other preggos at that point. By the end of the week, I accepted the fact that this is where I'd be until I got to meet Dylan. I got alot of sleep though. I thought, this may be the last time I can get some good sleep for a while. I took full advantage, and my BP stabilized.
On Monday of the following week, a Maternal Fetal tech came to do another ultrasound. The amniotic fluid was back "on the fence", but still no alarms. They came back on Wednesday morning to check on the amniotic level again. That morning, the fluid was down slightly more, and the Maternal Fetal doctor told me she would inform my OB. Shortly after, at around 9 AM on Wednesday morning, the Maternal Fetal doctor told me that they were scheduling me for a C-section at 6 that evening. Wow, waiting until 6 PM was emotional. I had no idea what to expect, and that freaked me out ALOT. I called Justin to come back (he'd spent every night at the hospital with me the whole time I was there, and he had just left for work about an hour earlier). He started making calls to family and friends, and the nerves just kept building.
He must've sensed my brain going in a million different directions, so he sat next to me on the bed and put on a movie. We watched Knocked Up, which I thought was mildly appropriate. We just sat in my hospital bed and laughed at the movie, it definitely took the edge off. A nurse popped in during one of the sex scenes, and Justin couldn't press pause fast enough. I got a little chuckle about that too. I didn't just sit and watch the clock the whole time, Justin helped me stay calm and relaxed. 6 PM was coming, and I was a bundle of excitement, fear, uncertainty, everything at once. I just couldn't wait to welcome Dylan into the world already!
Tuesday, October 14, 2008
I wrote this after my first doctor's appointment (12.03.2007). Now that we've told everyone the news, I can actually post it:
I heard the baby's heartbeat for the first time today. Today, it became real. Not that it wasn't real before, but now it's tangible. The doctor took an U/S picture for us, and showed us the heartbeat. It's real!
We're going to do our best, against all odds and our excitement and anxiety, to hold the news from everyone until Christmas. We'll see how that goes. But, in all fairness, it's been 2 months since I initially found out. No one knows, that we know of . . . it's going to be quite a December to remember!
Right now, we have a nubbin. Come 4th of July next year (approximately), we'll have our first baby. We're already so proud! And I still can't get over the fact that the U/S actually picks up an image this early on. We saw it with our own eyes, even the fluttering of it's little heart!
10 Random Facts About My Pregnancy:
10. I had high blood pressure before I got pregnant. (Hereditary, a gift from my mom).
9. This was going to be the first grandchild for Justin's parents and the third for mine.
8. This was my first pregnancy.
7. We originally decided not to find out the sex of the baby.
6. Our theme on the registry was Winnie the Pooh (mainly for its neutral colors).
5. We painted the nursery purple and gold (big LSU Tigers fans), so much for neutral.
4. I had no morning sickness.
3. I eventually got Gestational Diabetes.
2. Our dog growled at me everytime I got out of bed in the middle of the night to potty.
1. I was hospitalized twice (both for high blood pressure), the second time for 10 days before Dylan's birthday.
I didn't really think this wasn't going to be a run-of-the-mill pregnancy. The thought never crossed my mind that anything could (or would) go wrong. We'd started calling the baby "Nubbins" early on (most people go with "Peanut" or something similar, and since we usually go against the grain of what most people do, we decided on "Nubbins"). I posted the following on my Myspace page on January 9, 2008:
Nubbins is Now Tubbins!
I had another doctor's appoinment on Monday morning at the Maternal Fetal Specialist. I will have to go there every four weeks, in addition to my regular OB appointments. My doctor just wants to make sure that my blood pressure doesn't have any negative affects on the baby's development or anything else, but it appears that baby is developing just fine. Justin and I got to look at another U/S. Baby is 4 ounces already, which they told me was normal but it sounds big! The funny part is, I didn't even notice the hearbeat this time. Baby was all curled up and kicking, and the crazy motion of arms and legs all over the screen was just so fascinating.
I posted the following on my Myspace page on February 5, 2008:
Nubbins is Stubborn Already!
We had an appoinment at the specialist yesterday, so of course I'm excited about getting new pictures. Unfortunately, Nubbins was not as excited to come out and pose for the camera. I spent what felt like an eternity getting my center poked endlessly by the U/S probe, but to no avail. Nubbins was curled up tight as a fist (chin and knees to chest) and was in no mood to come out and play.
The U/S tech was getting so frustrated about not getting any of the measurements that she needed. Which also means, she was not able to check the "junk", if you will. We still don't know if it's going to be a pee pee or a puakinekine [this is the Tagalog word for girly parts], so don't even bother asking. See, that's just a sign that we're not supposed to find out! Next appointment is Monday . . . wish us luck!
The bottom dropped on my seemingly "normal" pregnancy at my 20-week appointment. I posted the following on my Myspace page on February 25, 2008:
Our 20-Week Bombshell
My high blood pressure was a blessing in disguise. Ever since the beginning of my pregnancy, I've been seeing Maternal Fetal Specialists to monitor the baby's growth and make sure that my high blood pressure would not cause any complications down the line.
In "normal" pregnancies, women generally see their OB every 4 weeks for regular check ups. Because I was deemed high-risk early on, I was seeing my OB every 4 weeks, and in between seeing the Maternal Fetal Specialist every 4 weeks (which boils down to being in a doctor's office every 2 weeks).
On top of that, a regular OB probably won't do ultrasounds every visit, but they do at Maternal Fetal. So we were pretty excited about getting updated pictures every 4 weeks. We had a regular visit scheduled at Maternal Fetal on Monday, February 2nd, but Nubbins (our nickname for our sexless baby at the time) didn't want to come out for pictures, so they were unable to get any of the regular measurements that they needed.
We had a follow-up scheduled for a week after on February 11th. Again, Nubbins was curled up and in a tough position to get any of the measurements or see any of the anatomy (which was the sole purpose for these visits . . . to monitor baby's growth and development). The ultrasound tech did her business, then the doctor came in to try her hand at it. I thought to myself, "Not again, Nubbins doesn't want to come out and play!"
But their frustrations felt slightly more crucial this time around. I asked if there were any major problems in not getting the measurements and anatomy again (as if to say, I wouldn't mind coming in again next week to try another ultrasound and, hopefully, the baby will be in a better position). But to my horror, the doctor said there were concerns that the baby may have some "issues". It quickly went from that to, "We need to do an amniocentesis to try and figure some things out."
I could feel myself tearing up as I signed the paperwork for the amnio. They make you sign like 5 pieces of paper, and they try to explain everything that you're signing to you, as if you're paying any sort of attention. Wait a minute, I was just told that there may be something wrong with my baby . . . can I have a moment? No, straight to the amnio. I was overwhelmed by my emotions. Honestly, I didn't even have a second to take it all in. So I just cried the entire time. Not because of the procedure or the needle or the pain. I never really had a moment to just digest the information that was flying at us at light speed (there were concerns of the baby having a heart defect and/or possible issues with the kidney/bladder, maybe a chromosomal abnormality).
I must've looked like a deer in headlights when the doctor asked us if we had any questions. I managed to shake my head, as the tears continued to roll down my face. I still hadn't processed anything in my head of what just went down or anything that she said. At that moment, I just wanted to get out of there. They scheduled a follow-up appoinment on Friday, along with an appointment for a pediatric cardiologist. The drive home was fuzzy.
After everything that went down Monday, I had to take a day from work to just veg, sleep, cry (all of the kind of things that would have just made me useless at work). It really helped. Justin and I sat together and just processed through everything. It was almost like the 5 stages of grief (Denial, Anger, Bargaining, Depression, Acceptance), and by Friday, I had definitely reached acceptance. Yeah, I go from 0 to 60 pretty fast.
By Wednesday morning, I received a call from the doctor's office with preliminary results from the amnio. The FISH tests came back negative for abnormalities to Chromosomes 15, 18, and 21 (Down's Syndrome). This was welcome news, considering Monday's visit left us with so little information.
First thing Friday morning, we went for our first visit with the pediatric cardiologist for a closer look at baby's heart. The doctor confirmed the news that we originally heard on Monday. There was indeed something wrong with the baby's heart. The doctor (Vedelefsky) was amazing and broke it all down for us, so we could understand everything. From the ultrasound, he could tell that the baby has a very serious and very rare condition called Hypoplastic Right Heart Syndrome (HRHS -- the right ventricle of the heart is smaller than it should be) and, in addition to that, Transposition of the Great Vessels (i.e. the Pulmonary Artery and the Aorta are reversed from how they should be).
Due to the condition, the baby would need at least 3 surgeries before the age of 5 (one at birth, the second between 4-6 months, and the last between 18 months-4 years). For the first time, the idea of terminating the pregnancy had to really enter our heads with the severity of the condition we had in front of us. We wanted to wait and see what the rest of the amnio results would be before we made any decisions one way or the other. We agreed that if any of the rest of the results from the amnio came back positive for any sort of chromosomal abnormality, then we would seriously have to consider terminating the pregancy.
We then went straight from the cardiologist's office back to Maternal Fetal. We had another ultrasound waiting, to see if the baby was in a better position than Monday and that maybe they could get some more measurements or a better look at the anatomy. Coming from the cardiologist's office really made us believe that it couldn't get much worse, but as if to say the cake really needed a cherry on top, the doctor at Maternal Fetal confirmed that the baby only had 1 kidney and the amniotic fluid was low (which was the least of our worries at this point, with everything else going on).
Within 1 week, we really had to put everything into perspective. Should we consider terminating the pregnancy? Can this baby have a meaninful life? How can we possibly afford all of this? We had a good handful of questions between us, and a great deal of research ahead of us.
We spent the weekend scouring the internet for all the research we could possibly find on HRHS. The fact that we found so few articles really made us realize how rare this was. Armed with all this new information, we went to my doctor's appointment on Monday with our heads held high, trying to be as positive as we could. It was just another routine appointment at the doctor's office (peeing in a cup, weighing in, getting my blood pressure checked, and hearing the baby's heartbeat – everything was checking out A-OK). Before we left, Justin asked the question that we wanted to avoid but couldn't. "What's the procedure for termination?" (At this point, we were still waiting on the rest of the results from my amnio – there could very well still be something in the chromosomes that we would need to tackle.)
The doctor's bewildered look before he answered was answer enough. He said it was rare to terminate a pregnancy after 20 weeks. 26 weeks would be the absolute latest, and this is in cases of extreme medical emergencies. But basically, they would inject the baby's heart with Potassium, wait for it to pass, and I would have to birth it. NO! The look on my face must've been answer enough for Justin, but I told him that I just couldn't do it.
That was out of the question now. We had rethink everything we'd talked about up until now – to me, there was no other option than to proceed with the pregnancy. What would happen from here on out would be in God's hands.
We carried our positive attitudes into my doctor's appointment on Friday. In the beginning of this pregnancy, we'd initially agreed that we would not find out the baby's sex until he/she was born. With everything else that we were going through, we found that finding out the baby's sex was at least one thing that we didn't have to keep up in the air. This really made us excited for Friday's appointment.
Again, I went in for the usual vitals routine, and then they brought us into the ultrasound room. The tech came in to give us a look at the baby. We told her that we wanted to know the baby's sex this time. Leave it to our baby to not want to show off . . surprise, surprise! So she wasn't able to see anything from the ultrasound. But since I'd had an amnio, there would be a definitive answer in my file.
The tech brought us into another room to wait and speak with the doctor. After a few seconds, the tech popped her head back into the room and asked if we still wanted to know. Without hesitation or even looking at Justin, I said, "YES!" When she told us that we were having a BOY, I think I actually yelped. Justin and I were more excited than ever before, and we just hugged each other until the doctor came in.
The doctor gave us a bit more good news. All of the results from the amnio were back, and all the chromosome tests were negative! And while we still face an uphill battle from here, we rest assured knowing that we have each other and now a beautiful baby boy on the way.
Initially, we had extreme pain and anger over what our son would be facing in his life. No one goes into their first pregnancy prepared for anything but a perfect little baby. When you're told that your baby isn't going to be "perfect" (medically speaking, I mean), you definitely go through a grieving period, mourning for what you thought your child would be. That goes away, of course, and I continued to enjoy the rest of my roller coaster pregnancy. I posted the following on my Myspace page on April 29, 2008:
A 30-Week Update
I know it's been a while since my last report on everything, so where do I begin? First off, Dylan has been the name that's really stuck for Baby Brooks, so that's the name that we'll probably go with. Justin and I have high hopes that he'll be a brilliant musician. Dylan has been growing and doing really well. His weight and measurements have all been right where they need to be when we get those checked at Maternal Fetal.
Our appointments at the cardiologist have been nothing but positive as well. The doctor that originally diagnosed Dylan's heart condition (Dr.V) will also be his pediatric cardiologist growing up. So we're already establishing that history with him. We're blessed because this doctor is absolutely amazing! He is very positive about everything. He says that the pump on Dylan's Left Ventricle is excellent, so at least the Ventricle that will be doing all the work is in good shape. Basically, once all the surgeries are complete, Dylan's heart will function as a 2-chamber vessel rather than a 4-chamber vessel.
We had the opportunity to meet with the doctor who will more than likely perform Dylan's surgeries (Kanter) and got another bit of good news. There's the slightest of possibilities that the first surgery may not even be necessary. If, at birth, Dylan's heart is pumping just the right amount of blood to the body, then we can skip the first surgery. He referred to it as the "Three Bears" scenario. At birth, Dr. V will evaluate whether Dylan's heart is a) not pumping enough blood to the body, b) pumping too much blood to the body, or c) pumping just the right amount of blood to the body. Obviously, if things are not "just right" at birth (options A and B), a surgery will be necessary.
The first surgery will vary, depending on which condition Dylan's heart is in at birth. The surgeries will be at Children's Healthcare of Atlanta/Egleston. Along with meeting the surgeon, Justin and I also had the opportunity to tour the facilities at Egleston. What an amazing place! The heart center there, including the staff of doctors and nurses, is top-notch. We got to see a 4-month old just an hour out of surgery. I was fascinated. I know it'll be different when it's Dylan in that position, but I have faith knowing that he will be in the best hands.
And since everything with Dylan has been developing so well, it stands to reason that I'd have some kind of issues on my own. I now have Gestational Diabetes (diabetes that develops during pregnancy; it usually goes away after labor). I have to check my Blood Glucose levels 4 times a day, so I'm on a strict meal plan. I've had to adjust my Blood Pressure medication twice now to make sure it stays in the "safe" range. And the latest (and greatest), I had some issues with my sciatic nerve causing me some EXTREME pain. At the end of the day, it'll all be worth it. Dylan will be the ultimate payoff. I just cannot wait to meet him already!
On a side note, today is our 2nd Anniversary. I can't believe how quickly time flies. I'm pretty much convinced that Justin and I can survive anything thrown our way. And we're truly grateful and blessed by those of you who have given us your undying support, thoughts, and prayers.
Monday, October 13, 2008
Saturday, October 11, 2008
The first time, a family from church asked us. I could hear the trepidation in my voice as I answered. Afterwards, I was so angry at myself. I could list reasons in my head why that was my natural response (maybe to avoid having to go into a long, drawn-out explanation of what happened or to say something uncomfortable like, "Yes, but he's passed."), but that didn't lessen my regret for saying it. I kept telling Justin, "Yes, of course, we have a kid."
Then there was last weekend. Justin and I were at a friend's wedding, and just as we were leaving, the Groom's father (who Justin's known for a while) asked if we had any kids yet. Justin looked at me, and my processors were a bit slowed by the fact that I was three sheets to the wind at that point in the night. He smiled and told him, "No, not yet." I honestly don't remember walking out to the car, I just know that once I was there and the door closed behind me, I erupted into tears. "Why, why," I cried, "Why isn't he here?" I bawled the whole way home.
It's only been 4 months since Dylan's death. I could be worse, right?