Thursday, May 27, 2010

Heartbroken All Over Again

Another baby died of their CHD today. I only learned of her last night and spent about an hour reading her family's blog getting to know her and praying for her. She was 10 months old. Another family gets to plan a funeral. Decide what they want to dress their child in for the very last time. Figure out what to do with her things when they are ready. And grieve. Forever and ever and ever.

I can't get away from the pain. I mean, it's not on the surface anymore. It's no longer a fresh wound, but one that is so deep that just because it looks healed from the outside doesn't mean it ever will be.

Losing a child is like having your heart shattered and no matter how many times you put it back together, you're missing a piece and the sharp pieces prick at the inside of your chest if you move the wrong way that day. Some days, you can walk just the right way and feel no pain, but then you let your guard down and WHAM! There it is. As time goes by, scar tissue keeps your heart mostly intact and keeps you from getting stabbed over and over again, but it's always there. There's always that chance you'll wake up that day and feel yourself hurting all over again.

Its waking up feeling like today is going to be wonderful, but then you hear the rain on the roof, smell something in the breeze, hear a sound and you're pulled back to the memory of the day your world stopped.

Its not wanting to get out of bed some days, but life for everyone else goes on. It's not wanting to celebrate for another person's child when yours has nothing to celebrate ever again. It's anger, resentment and feeling bitter for no reason sometimes. It's nightmares when you only want to dream of holding them again. It's feeling like everyone wants you to get over it and wanting to tell them to take a flying leap. It's passing the cemetery and not wanting to go in, and longing to find some peace all at the same time.

It's looking for signs from above, wondering if the song you hear on the radio was meant JUST for you from your child. It's marking the calendar with how long they've been gone, not how many birthdays they've celebrated. It's seeing kids around your child's age and wondering what your child's life would have been like had he lived.

Tommy has been gone for almost 2 years now. It feels like yesterday. I used to reach out to parents that had lost a child, but now it makes me feel so depressed. Misery loves company, but this misery isn't like losing a ball game or divorce or any other loss, no matter how big or small. It's a black hole of despair that never, ever, ever goes away. I've tried to ignore it, but it's always there. I guess "pain" isn't the right word to describe what I feel. It's more like being covered with a thick fog of sadness. The saddest feeling you've ever had could never touch the sadness a parent that has lost a child feels.

I don't need pity, understanding, a shoulder to cry on, for you to look the other way, or any other way you think you should feel about my sadness. It is what it is. My burden to bear. There is no right way to grieve. I blog. That's me. Another parent might never speak of their child again. That's not wrong either. The only thing I need, what any parent that has lost a child needs is for the floor to stop falling out from under us for no reason.

Monday, May 24, 2010

The Memories of Holding You

Two pink lines on a pregnancy test. Beaming with excitement and glowing with pride and love at the thought of the child I held inside me. Through the good days, the bad days, the scary days and the ever so sad days when I wondered if I would ever get to hold you on the outside.

Holding you inside of me just one more day, then another, for three whole weeks, trying to grow you just a little bit more when my body failed to protect you.

Finally... when you had been on this earth for two days, I got to hold you in my arms. A pillow to rest my arms upon, layers and layers of blankets and more wires, lines and feeding tubes than I cared to count, all carefully maneuvered so that I could cuddle with you for just a moment. Admiring the tiny scab on your nose from the CPAP machine. Holding you meant you were finally remembering to breathe on your own.

Snuggling you in the special care nursery because you were a NICU graduate. Almost having you home....

Coming to the step-down unit and being able to get you out of your crib all by myself. I'd figured out those wires and lines and could hold you for as long as I liked. And I did. Little did I know it would be awhile before I was able to hold you again.

After your heart surgery, it would be 8 very long weeks before I could hold you again. The day you finally had your pacing wires removed after you got your trach was like a holiday! I couldn't wait to get to the hospital that day. I held you for an hour. My arms ached and hurt so badly, so I did what I had to do. I held you for another hour and thanked God for every second I had with you, forgetting how heavy my arms felt.

After that day, holding you was a challenge. Your little body had become so used to being poked and prodded that being held wasn't fun for you anymore. Most days when I tried, it ended up with you turning blue and me crying. But we rose to the occasion. Hard work from both of us finally paid off.

Easter morning, you were Seven months old. You let me hold you. And for the first time in your life, you fell asleep in my arms. No longer afraid of pain, you found comfort and love in my arms. We had made peace with the terrible, yet necessary infancy you had endured.

From here, the snuggles get blurry. We snuggled on the couch together watching TV. I held you for a second longer than I needed to when I moved you from your swing, your car seat, your stroller, your bed.

You learned to hug me and kiss my cheek. You signed "I love you" to me every single day.

The last two times I held you are burned into my heart forever. They were less than an hour apart. Breathing fast, clutching my neck and sleeping on my shoulder. Your body conformed to my chest. Mother and child, we were one unit as I rocked you and listened to your breath in my ear.

An hour later, I would hold you once more. I held you until my arms ached, then held you for another hour. I could not let you go, but I had to. You were gone. And I knew when I let you go for the last time, I would never hold you in my arms again. I smelled your little baby head for the last time. Kissed your tiny face.

I still feel you in my arms. I hold you in my dreams. I hold your memory with me every day. I carry my love for you in my broken heart. I will never let you go.

Thursday, May 13, 2010

I Hate That I Can Relate

On our porch is an old metal mailbox. I don't know why we kept it. Probably because hubby thought he might be able to recycle the metal and hasn't gotten around to it, but for whatever reason, it sits on our porch. If the front door is open, I can see into the mailbox and about 2 or 3 weeks ago, a couple of house finches moved in and started building a nest. I let the boys know to stay away from it so the birds would stay and we could watch.

On Tuesday, when I came home from work, Rob let me know that the boys were messing around and knocked the mailbox over. They put it back, but it was too late. The baby birds had been jostled out of their nest and were laying inside the opening of the mailbox. Sad. Very sad, but what could we do? The little naked bird wasn't moving. We figured nature would take its course and that was that.

The next morning, yesterday, I had the front door open, watching it rain and listening to the quiet. I looked up to see one of the finches bringing the babies something to eat. It looked in the nest and hopped in and our several times. Confused. Stressed. It began a sad warble. I knew it was mourning the loss of its babies. I nearly burst into tears. I was relating to a bird that had lost its young. It was too much for me to take and I closed the door.

That afternoon, the boys came home from school. It was my night off, so Brandon and I decided to do something fun in the yard. As I walked out of the door, something caught my eye. The baby bird that had been just inside the opening of the mailbox was now laying outside, on the door of the box. Odd... Then I saw something happen. The bird took a breath and moved! No way was I seeing this. It was alive? I yelled for Rob, who put on plastic gloves and gently moved the birds back into the nest. Alive. All of them alive.

My routine was broken this morning, so I was not home to watch for the parents to return. I hope and pray that they do. I hope that in a few weeks, I am seeing little feathery babies fly out of the nest on their own.

I have a recurring dream. That Tommy never died. The doctors tell me it's all a mistake. Take him home. A second chance at his life. I always wake up wanting to fall back asleep for just a few more minutes to hold him again. Seeing that baby bird was like watching my dream. It wasn't dead, just injured, fallen out of its nest and its mother unable to help it. I am practically begging the universe to send the mama bird back to her young. To give them the one thing I can only do in my dreams. Know that my sweet boy is still alive, even if only in my heart.

Monday, May 10, 2010

Bittersweet Mother's Day

Yesterday I was awakened by my 11 year old bringing me breakfast in bed. He fixed me a bowl of Corn Pops and replaced the milk with Yoohoo. It was actually pretty good, and a feast compared to last year! Last year, I went to the grocery late Saturday night after I got out of work and bought a ton of easy to make breakfast foods. Microwavable croissants with sausage, egg, and cheese, donuts, juice and milk, and a few other things. I was hoping when they woke up and saw the breakfast things, they would bring me a beautiful breakfast in bed. Wrong! They woke up, saw the loot and got down to business, eating every morsel. I woke up on my own several hours later to a rumbling stomach and no Mother's Day breakfast. So for him to at least bring me a bowl of cereal was more than generous and thoughtful this year!

Right after breakfast, I did a quick update of Facebook to see what everyone was up to for the day and discovered on of my best friends had a very sick daughter. Her daughter has a long history of getting very sick very fast. She told her mommy it was time to say goodbye. She's better now, but at the time, I turned to Rob and told her what she had said to her mom. Remembering what we had gone through with Tommy, watching him sick and finally saying goodbye overcame both of us. It's so hard not to miss him on a regular day, but this was Mother's Day. A day to spend with your children and celebrate being a mom.

Tommy wasn't my only child I wasn't able to hug yesterday. My oldest is in another state, adjusting to life there. Of the 4 pieces of my heart, half of them were missing.

I didn't have time to dwell on being sad. I had work. I was hoping to treat it like any other day, but when I took a break, I saw updates on Facebook about their great Mother's Day, and I also saw updates from moms like me who had achy, empty arms. It was a slow day at work, so I did the only thing that would make the day right. I went to the parking lot and blew bubbles for Tommy. I carry them in my purse for occasions like this. Sometimes I start missing him so much I need to send him bubbles to show him how much I still love him.

The rest of the day went by quickly. Soon the rest of May will be gone and school will be out. Both boys have summer birthdays to look forward to. I should be okay on nervous breakdowns until July. On July 17th, Tommy will have been an angel longer than he lived on Earth. Don't know how I feel about that yet. Forget about August and September. I'm just going to crawl under the blankets and come back out in October. 

I made sure and hugged my boys a few extra times yesterday and tried my best not to yell. Some days it's hard to be a mom, yelling at the kids to pick up their mess, stop picking on each other, take a bath, stop picking their nose, etc. But you've got to be thankful for those moments. It can be gone in a heartbeat.

Wednesday, May 5, 2010

I Lied

I lied to a customer last week. Since then, I realized I've been lying to myself. I work at a gas station about a block behind the hospital. Ambulances fly passed the front of the store with lights and sirens blaring at least once a day. I've learned to ignore it for the most part. He asked me if the ambulances bothered me. I told him they didn't and that I was used it it after a year. As soon as the words left my lips, I knew I had lied.

Since then, I've become more aware of them. I really had blocked them out, but now I can't stop hearing them. The worst is seeing one with just the lights on, no siren. It makes me wonder why it's no longer an emergency. Tommy only ever rode in an ambulance once, for transport, not for an emergency. No sirens or lights.

After spending more time in a hospital than at home for 3 years, you hear the sounds of the hospital all around you. Sirens were part of that life. It reminds me of that part of my life. Part of my life that I miss very much. Most of the time, it was a blessing when Tommy was in the hospital. I'm not saying why he was there was always a good thing, but when it was something planned or routine, I adored spending a day or two alone in his room with him.

When he was in the hospital, he was safe. It meant I could get a break. At home, I was his caregiver 24/7 and could not leave his side for a shower, to put away a load of clothes, a nap. Nothing. In the hospital, he was hooked up to monitors, had nurses steps from him at all times, and doctors on the floor. I was free to go get a meal, go for a walk, and relax for a few minutes. Sometimes I would have Rob drop off Matthew and Brandon and we would hang out in Tommy's room watching movies, having snacks and going to the Atrium to play when it was open.

Sometimes we would go to the roof above Children's ER and look down at the ambulances.

When I hear the sirens now, it reminds me that someone is hurting. And then I realize it's me.

Saturday, May 1, 2010

Two Years

Two years ago, our lives changed. We would find it had been creeping up on us for a long time, but the shock of what happened leaves me grateful every moment that my husband made it through alive.

For several months, Rob had been having strange symptoms, none that seemed related to each other. It started with him gaining weight and despite eating like a bird, the weight kept piling on. He was well over 350 pounds. He had a strange tickling cough that wouldn't go away. His shins began to swell and he developed weeping blisters. He couldn't sleep in bed anymore. He started sleeping upright on the couch because when he laid down he couldn't breathe. He went to his doctor about his legs because we thought it could be an infection. The doctor swabbed for MRSA, then told him "his girth was restricting blood flow to his legs. Lose weight". Then his legs were wrapped with an ace bandage to constrict the swelling and he was sent home.

Life began to get really hard for him. He couldn't walk up a flight of stairs without getting winded. He came home from work every day, sat on the couch and fell asleep. He was exhausted. Tommy was in the hospital around this time having a scheduled surgery to widen his airway. My mother in law was in town to help out with the boys. I remember the three of us arguing because Rob didn't want to visit Tommy. Turns out it was it was because Tommy's room was at the end of a long hall and Rob was having great difficulty walking that far. He eventually went that night and I have some great pictures of him leaning over Tommy's crib.

Tommy was only in the hospital for a few days and came home on Monday morning. That evening, Rob felt ill. He was having a hard time breathing, coughing and felt chest pain. We both felt like maybe he had bronchitis some other lung infection. We discussed him going to our doctor the following morning, but he said he felt sick enough that maybe he should go to the ER. He said he felt well enough to drive himself, but I needed to come with him. He wanted me to do the paperwork and insurance, and I know he wanted me to keep him company.

Once we made it to the hospital, he could only walk a few feet without having to stop to catch his breath. I tried to go get him a wheelchair, but he insisted to just give him a second and he would be okay. He stopped several times to catch his breath. It took us about 15 minutes to get into the door. Once I got him settled into a chair, I went to sign him in. I told the nurse he had shortness of breath and chest pains. They took him straight back. A pulse ox showed his oxygen was low. He was put on the monitors in a room and the doctor ordered an EKG.

Everything started happening very quickly after that. An EKG takes just a few seconds to do and the results are printed right out. The tech turns to the nurse and whispers something that only I heard. "He's in Afib". I knew from having a heart kid that Afib was NOT a good thing. I knew it was an irregular heartbeat, I just didn't know HOW bad. As it turns out, it was very, very bad. The top of Rob's heart was quivering instead of beating. His heart rate was well over 200. Rob's heart was not working properly. The doctor said Rob was not having a heart attack, but that his heart was failing. They had to get the quivering under control right away. They admitted him right away. The heart center was a block away from the ER. They took him by ambulance.

He was given several medications to slow his heart rate and to start pulling fluids from his body. He lost approximately 20 pounds in 5 days just from his body letting go of the fluid. The official diagnosis was congestive heart failure with atrial fibrillation. Now they had to find the cause, and get his symptoms under control. A-fib is very dangerous because the heart is not pumping efficiently and can cause blood clots. He had ultrasounds of pretty much his entire body to look for clots. The first time he fell asleep in the heart center set off alarms. His oxygen was dipping into the 80's when he slept. Putting him on oxygen didn't help. He wasn't breathing when he slept. They brought in a CPAP machine and fitted him with a sleeping mask. It was very tricky and finally we had to start letting him fall asleep wearing the mask and turn on the machine once he was asleep. He didn't get much rest. His medications had him running for the bathroom every hour to let go of more fluids.

After 3 or 4 days of medications to correct his A-fib, the doctors decided to do a trans esophageal echocardiogram, a TEE. Rob would need to swallow a probe so that the doctors could examine his heart from his esophagus. Basically it is an ultrasound done as close to the heart as possible, without all of the tissue, bone and muscle to pass through to get a picture. Rob had to be knocked out so they could get the probe down his throat. Typically the throat is numbed and the patient just swallows the probe while awake, but Rob wasn't able to without gagging.

He came back to his room with large red marks on his chest and back. Medication wasn't able to fix the irregular heartbeat so Rob had to be cardioverted. His heart was stopped and then restarted by shock to put his heart back in normal sinus rhythm. We were told it was a wait and see thing. The longer his heart stayed in normal sinus rhythm, the better chance he had of it staying in normal rhythm and not slipping out again. Praise God, it's been 2 years without another episode of A-fib!

CHF caused us to make some serious changes in our lives. One of those things was diet. Low sodium is necessary to keep fluid from building back up again. CHF is forever. His heart is damaged and there is no going back. It will never pump efficiently on its own again. Medications are necessary to keep his heart working properly. He takes 5 different medications a day to keep him going. The other big change was being told that Rob should no longer work. He needs have the least amount of stress possible in his life and on his heart. No standing for long periods, no sitting for long periods. No extreme temperatures. No stress. No salt. Relax. Walking is good, but take it easy. Basically the only thing he needs to do in life is chill out and take it easy.

Funny how taking it easy makes our lives very, very hard. It leaves it to me to work full time while he watches our kids. That is more stressful than working in my opinion, but there is not a job available he can do that would not tax his heart or his stress levels. We make due with the life we have.

We've learned to slow down and take nothing for granted. Nothing is too hard. Nothing is THAT important. Between losing Tommy and nearly losing Rob, there's nothing we can't face. Our biggest obstacle has been that we are without insurance. Thankfully, his medications are generics and only cost us around $20 a month combined. We also recently found out he can get his blood levels checked for $15. He takes Coumadin, which is a very dangerous anticoagulant. Too much in his system and bumping himself can cause internal bleeding (another reason he shouldn't work). Not enough, he is at high risk for blood clots. He grew a beard because he's afraid to shave. Cuts bleed longer and he doesn't want to risk it.

We've applied for disability, but we've been told he doesn't qualify. We've appealed twice and retained a lawyer. Next step is to take it before a judge, but the docket is full until next spring, so we wait another year without medical care for him. We own a pulse oximeter and check him regularly. He also weighs himself daily and checks for signs of fluid buildup. Our biggest saving grace was his CPAP.

Rob's CHF was caused by severe obstructive sleep apnea. Snoring and not breathing while he slept caused his body to startle itself awake so many times at night that his heart overworked itself. Two things scared us about this whole experience. First was being told in the ER that if we had waited to see his doctor, he wouldn't have made it and probably would have died within 2 days. The other was without using a CPAP machine, he would probably have a heart attack in his sleep and die. That machine literally saves his life.

I don't know what I would do without Rob, but because of the nature of his disease, we face it every day. If he gets winded, feels lightheaded or becomes ill, we panic. A simple lung infection could kill him because his body is not 100%. All of this from snoring.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries