Caleb

Tonight I sat by the bed of my sleeping angel and put my finger in his hand, just like I did when he was a baby.  Only then, I wasn't at liberty to pick him up and hold him because he was too fragile, too unstable, or needed to preserve his energy to grow and learn how to eat.  Today I watched him go down a big slide on a potato sack all by himself.  Once he made it to the bottom, he immediately hopped up and came to me with a quivering lower lip and said, "I didn't like that at all.  I don't want to do that again."  And I held him in my arms, just as I wished I could all day long during those first three months.

As I sat by his bed, I watched him breathe.  It came so easily tonight, unlike his first few weeks.  I remember watching him struggle for breath at a few days old, just wishing the doctors would put him back on the ventilator so he could rest.  I was moved to tears, seeing my tiny baby struggle so much to do life's most basic function.  I wished life could be easy for him.

Tonight, as I sat by his side, I listened to the feeding pump churning away...just as I did almost five years ago.  He's still working on life's second most basic function (eating).  And that's ok.  Medical intervention kept him alive then, and it does so now.  I could never hate it.

As I looked at how much smaller my finger looks in his big preschooler hand, I noticed that it's slightly callused, unlike when he was born with skin as thin as paper.  I remembered my very first interaction with him--I stroked his leg, because I didn't know any other way to let him know I was there.  The nurse told me that it was overwhelming and even painful for tiny preemies to be stroked like that, and to provide firm pressure instead of movement.  Who knew I was touching my newborn baby wrong the very first moment I met him?  In the days that followed, he developed two scars from the monitor leads.  They were attached to machines and run by electricity, and even the imperceptible amount of heat they generated burned his delicate skin.  He still wears the scars today.

Tonight, I soaked him all in.  And I thanked God for the priceless memories of those first three months, and for every day since.

What You Need to Know About Eosniophilic Gastrointestinal Disease

It's National Eosinophil Awareness Week.  I thought I'd take this opportunity to remind you exactly what Eosinophilic Gastrointestinal Diseases (EGIDs) are and why you need to be aware of them.  If your brain is taking a break (I get it, I do that too...a lot), then skip down to the bold numbered section at the bottom.  If you're feeling up for a bit of education, read the whole thing.

Official information can be found here.  This post is a compilation of what I know about the subject.

Eosinophils are a specific type of white blood cell, found in the blood and/or in the gastrointestinal system.  Everyone has them.  They are helpful in fighting off infections.  There is a "normal" number of eosniophils in every person's digestive tract, but when that number becomes elevated then it causes damage and symptoms of EGIDs.  It is considered an autoimmune disease, since the body attacks itself.

What an eosinophil looks like.  source

EGIDs are commonly seen hand in hand with typical allergies (anaphylactic, where the throat swells and is life-threatening; and IgE, where hives, upset stomach, and diarrhea are common symptoms).  The reactions are different (typical allergic reactions don't cause eosinophils to infiltrate the system), but many people who have EGIDs also have typical allergies.  Caleb, however, does not.

The eosinophils come as a reaction to the food protein (the building block to the food, not the nutritional quality known to be found in meat and legumes), and sometimes as a reaction to the environment (in the case of eosinophilic esophagitis, where particles from the environment can be breathed in and effect the esophagus).  Every individual's reactions are different.  Some people react to one food, some to 20.  Some people react to all foods, some to all but a small handful.  Some even react to foods in their raw state, but can tolerate them when cooked, since cooking foods breaks down the proteins and makes them easier to digest.  The trick is to figure out which foods are ok and which ones cause a reaction.  Food trials can be quite a process!  Some people are so sensitive to a food that if it is cooked indoors and they are in a nearby room, the food particles can enter their body and cause a reaction.  Some people can tolerate a food as long as it is eaten in small portions and not very often.  Some people react to being in an older house with mildew in the sink drains.  When trialing foods, these are important factors to consider.  Many people have to use an amino acid based formula (which is hypoallergenic) to supplement their diet and get enough nutrients.  The formulas don't taste very good, so many children need feeding tubes in order to get enough formula to stay healthy.

This is about 2 month's worth of formula for Caleb.  Thank goodness for lots of cupboard space, and thank goodness for good health insurance!  If anyone breaks into our house, I'm tellin' ya, this is where the goods are!

The only way to diagnose and track the treatment of EGIDs is to take a biopsy of the effected area.  The person is put under general anesthesia for an upper endoscopy and/or a colonoscopy, depending on where the symptoms are taking place.  After the biopsies are obtained, the lab counts how many eosinophils can be seen under a high powered field.  If it is higher than the cutoff, then a diagnosis is made.  After a diagnosis, diet modifications are made to try to control symptoms.  Once the eosinophils are controlled via diet and it is confirmed via biopsies, foods can be trialed.  Most people need a scope after one to five foods is reintroduced.  Foods are added and taken away according to scope results and symptoms.  It's not abnormal to have ten scopes in the first few years after a diagnosis is made.

Of all of the EGIDs, eosinophilic esophagitis (EoE) is the most common.  EGE (eosinophilic gastroenteritis--in the stomach and duodenum) is the second most common while EC (eosinophilic colitis) is third.  You can have eosinophils in any combinations of those areas--esophagus and stomach, esophagus and colon, stomach and colon, etc.  Caleb is the only person I've found who has eosinophils in his duodenum only.  Russell was borderline for EC when he had a sigmoidoscopy (which is like a mini colonoscopy).  If he has more symptoms in the future that interfere with his health and quality of life, he will have a colonoscopy.  Leave it to my kids to be rare.  ;)

Symptoms of an EGID vary from person to person.  EoE in an adult typically manifests itself as the feeling of food getting stuck in your throat.  In children, EoE looks like reflux with lots of vomiting, colic, and poor sleep.  EGE typically shows lots of stomach pain and diarrhea.  EC is accompanied by diarrhea or constipation and abdominal pain.  In young children, failure to thrive is common, although there are exceptions.

Why do you need to know about eosinophilic gastrointestinal diseases?  There are many reasons.

1. It's important to think twice before sharing food with someone else's child.  The other day, a child on the playground offered Caleb a Capri Sun.  I overheard him say, "My mommy says I can't have that." I was so proud of him!  He also asks me what ingredients are in a food before asking for a piece of my food.  It's a huge relief to me to know that he is able to think about what he eats and how it will effect him before eating something.  But when we started out on this journey, he would have eaten a cheerio left on the floor at church, and it's hard to know if one little cheerio would have altered the results of a scope.  For some children, one cheerio would be followed by severe pain and vomiting.  With his best interest in mind, we absolutely cannot let him eat something that isn't on his "safe" list.  So keep that in mind before you let your toddler share his snack with another toddler.
2. EGIDs are becoming more and more prevalent in the recent few years, although there are still many people walking among us who have the symptoms and don't know what's causing them.  If your daily pain could be taken away with a few diet modifications, wouldn't you want to know?  Caleb's diagnosis came almost two years ago, and in that time I have met two people who knew someone else with an EGID, and one person who I was casually talking to who said, "Oh, yeah, I have EoE."  Um, WEIRD!  That just happened a few weeks ago.  All this time I have felt like I'm living on an island, with no one around me who knows what it's like to check labels obsessively and pack food for your child everywhere you go because you can't just stop for a snack at the nearest drive-through.  I've met lots of people through online support groups, and even a local support group, but it's just not the same as knowing someone.  Recently, though, a friend of mine from college had a son who was diagnosed with EoE.  I try to imagine what it was like for her to have been slightly familiar with that awful word...eosinophil...before having the label slapped on her own son.  I'm guessing it made it a bit more scary, because it's clear that the road we're on isn't the scenic route, but it also had to feel comforting to know that she's not alone.  Wouldn't it be nice if everyone could feel that way?  This has been a lonely, lonely path for me, and although I'd love it if no more friends or family ever had to be diagnosed with an EGID, if they did happen to be in this boat then I'd be glad to tell them that they're not alone.
3. We all want a cure.  At the very least, I really want a way to take biopsies without having to put Caleb under anesthesia every time.  If Caleb passes his next scope and is clear to keep eating everything but the top 8 most common allergens, then we will be ready to trial those top 8.  We already know that he reacts to dairy and soy, but when we trial wheat, eggs, fish, shellfish, peanuts, and tree nuts, we will have to scope after each and every food.  That's a minimum of seven more scopes in the next few years.  That's hard on a little body.  That's emotionally hard on him and his poor mother!  My top priority has always been his health, and my second highest priority is his quality of life.  But the best way of managing his disease is to decrease his quality of life by extreme measures.  And it's something that will follow him for the rest of his life.  You would want a cure, too.  So, if you can, please consider donating to CURED, the Campaign Urging Research for Eosinophilic Disease.  It's a great way to spend a few extra bucks.  ;)

Thanks for sticking with me through this lengthy post, and through this lengthy journey.  It really does mean a lot to me to think of all of the people who care about my sweet Caleb.

Remember When...

Remember when God gave us Russell?

I think it's easy to see that Caleb was a miracle baby.

But sometimes 8lb 5oz babies are miracles, too.

Nate and I always thought that two years was a great gap between our children.  I don't know why.  Maybe because that's how everyone else seemed to do it.  So shortly after Caleb's first birthday we started praying and thinking about how to go about having another baby.  Looking back, it seemed so early.  Caleb was 13 months, but as far as milestones he was only 10 months.  And his health and eating was so poor.  We really had a lot to worry about with him at that point.  But I started "doctor shopping" anyway.  I saw two doctors (neither of which I actually ended up liking).  One gave me a prescription for the same high dose of fertility drugs that was required to get pregnant with Caleb (200mg of Clomid).  The other said that our bodies change after having a baby, so it would be wise to start with a lower dose (50mg) and work my way up 50mg at a time until I got pregnant.  That's how I did it for my first pregnancy, and it took five rounds of Clomid over the course of nine months.  That's a lot of time.

Nate and I prayed about it.  It was scary to think about our chances of having multiples if I took the higher dose, especially since we had no way to know if I would deliver early again or not.  If I could only carry one baby to 27 weeks, how far could I get with two?  It was a scary thought.  Our prayers were answered and we felt confident that I should take the higher dose of fertility drugs.

I didn't get pregnant on the first round.  The medicine made me really sick.  I remember telling Nate that I wasn't willing to take it a third time if I didn't get pregnant on the second round.  I just couldn't handle deliberately making myself that sick.  That we'd have to take a few months off, and take our time.

Then Caleb was put in the hospital for five days with RSV, a stomach virus, and an ear infection.  He was so dehydrated that the IV fluids made him gain a whole pound in one day.  He was 16 months old and only reached 17 pounds because of the fluids.  He looked like a different baby.  And we had to postpone the scope that would ultimately diagnose him with an eosinophilic disorder because he had a respiratory virus and couldn't go under anesthesia.

Then I got pregnant, after only two rounds of Clomid.  We were very happy.  It was all part of our plans.  Just what we wanted.  Our second baby would be born just one month after Caleb turned two.  Perfect.

Then, not more than a month later, Caleb was diagnosed with eosinophilic enteritis.  I was about eight weeks along, and scared to death.  It's hereditary.  Caleb would need a feeding tube.  He would have needed one even if he hadn't received this diagnosis.  What if I went on bed rest?  What if I had another dangerously early preemie?  All of the what ifs just seemed like too much to handle.

I kept thinking that if I hadn't gotten pregnant when I did, I would have put it off without hesitation.  Truthfully, I resented my pregnancy for a while.  It was such bad timing.  We should have waited until Caleb's medical conditions had stabilized and we had all adjusted, which I sometimes feel may never happen.  We may have been a family of three indefinitely; always feeling as though something is missing, but not having the courage to act on it because of our previous and scary experiences with Caleb.

The one thing that gave me comfort during my pregnancy was the knowledge that Russell would be part of our family because God wanted him here.  It certainly wasn't a risk that I was willing to take.  If I hadn't taken the higher dose of Clomid, if I hadn't gotten pregnant on the second round, if Caleb's scope hadn't been pushed back...then I would have chosen to not have another baby.  God chose to give us Russell--failure to thrive, blue eyes, bald head, silly little personality, unknowns and all.  He was meant to be in our family, so God made it happen just when it needed to happen.

And I'm so glad it happened how it did.

Proud Mommy Moment: Operation Smile

Caleb saw this commercial a few weeks ago.  Ever since, he has been talking about the "babies with owies on their lips."  I told him that maybe he could draw them a picture and mail it to them to make them happy.  I also told him that he could give them some money to help them pay for surgery so that their owies can go bye-bye.  He picked all of the coins from his bank (two quarters and a dime) and one dollar bill to mail to them.

I asked him what he wanted to say in his letter, and he said, "A."  Well...that's a letter, all right!  So together we came up with this "message" for them:

Did you know that $240 is all it takes to give one potentially life-saving surgery?  1 in 10 babies born with a cleft lip/palate dies in their first year.  That's because they can't suck, so they can't eat.  I know what it's like to have a baby who can't eat.  It breaks my heart to think that so many babies can die of starvation.

Nate's employer matches charitable contributions, so we donated $120 and they donated $120.  So together we may have saved a life!  If you want to help the babies with owies on their lips, you can go here.  It feels so good to do it.

And it feels so good to be teaching my small child to think about others and to give of himself to help them feel better.  I hope I can continue to use these opportunities to teach my boys, and I hope they continue to love to give.

Remember When...

Remember when Caleb was 11 days old and he was less than an hour away from getting heart surgery?

When he was one day old he was doing so well breathing and keeping up his oxygen that they took him off of the ventilator.  After almost 24 hours he had to go back on, because it was too much work for him to keep breathing on his own.  About a day later, he was doing so well that they extubated him again.  That time he could only breathe on his own for a few hours before needing to be intubated again.  I remember seeing him struggling to breathe on his own, and wishing they would just put the ventilator back in.  It was painful to watch him like that.  He had quite the nap after being intubated again!  He was so peaceful.

They did multiple chest x-rays a day, and his lungs kept looking fuzzier and fuzzier until one lobe of one of his lungs was almost completely collapsed.

At six days old they did a routine (for early preemies) heart ultrasound that diagnosed him with PDA (Patent Ductus Arteriosis).  The Ductus Arteriosis is a duct in the heart that is open during pregnancy to allow the blood to bipass the lungs, because an unborn baby doesn't get oxygen from their own lungs, they get it from their mother.  The duct is supposed to close when a baby takes their first breath, but since Caleb didn't take a breath on his own until he was a whole day old, his duct didn't close.  When the duct is open, it can allow fluid to enter a baby's lungs.  Usually, even when the duct is open, it is closed just enough that a nurse can hear a slight murmur when listening to the heartbeat.  But Caleb's duct was so wide open that there wasn't any friction from the blood passing through to cause a murmur at all.

When the nurse practitioner called me to tell me the news, she said not to worry, it was very common in preemies, and the duct commonly closes with a three-day course of a special type of ibuprofen.  I really wasn't worried at all.

So after the three day treatment was over, they did another heart ultrasound.  It was still wide, wide open (they still couldn't hear a murmur), so they decided that they needed to do surgery.  I was scared, of course.  My little baby was still well under three pounds.  (He didn't hit three pounds until his three-week birthday.)  But I was more excited than anything--I couldn't hold him until he was off of the ventilator, and he couldn't be off of the ventilator until he could breathe on his own, and he couldn't breathe on his own until his lungs were clear and functioning, and his lungs wouldn't be clear and functioning until his PDA was closed.

That day was a Friday.  They couldn't schedule the surgery until Monday morning, so they decided to give him two more days of the medication, because, well, why not?  They were not hopeful at all that the medication would work, because three doses didn't even close it a tiny bit.  But there was no harm in trying.

Sunday night I couldn't stop thinking about how I, myself, had never had surgery, but how my tiny, tiny baby would be getting surgery at just 11 days old.  It seemed so unfair.  I had a hard time watching him go through something that I knew nothing about.  I wanted to feel empathy, but I didn't know how.  So I just felt fear and sadness.

Monday morning rolled around, and we were told to be at the hospital by 7AM to talk to the surgeon before the surgery.  It was a simple surgery, performed right there in the NICU.  Caleb would stay in his isolette the whole time.  For that reason, they had to call every parent in the NICU to tell them that they wouldn't be allowed in the nursery from 7-8AM.

So we stood by Caleb's bed as the surgeon talked to us about the risks.  Infection, which is the number one killer of babies in the NICU.  A cut or strained vocal nerve that helps the vocal cords function and could lead to a very soft, raspy voice and may cause him to need speech therapy.  The scary side effects of anesthesia and having a hard time waking up (and possibly not waking up).  The possible need for a blood transfusion.  For some reason the surgeon felt the need to tell us the exact chances of Caleb contracting HIV from a blood transfusion.  Too bad he had already had two by then (and had a third later that week).

Although the surgery would only need a tiny incision under his left arm that would be so small that they would put a steri-strip over it when it was all said and done, Nate and I were still scared.

So after talking to us about exactly what would happen and exactly what risks were involved, just before ushering us out of the nursery to wait in the Parents' Lounge while they cut open my baby and reached inside of him to place a clamp on a duct in his heart, they did one last heart ultrasound.

And do you know what they saw?

Nothing.

His duct had closed on its own.

And that's when I knew that God loves us enough to provide miracle after miracle after miracle.

By that evening, Caleb's lungs were so clear that they took him off of life support for the last time.  The next day, at 12 days old, I got to hold him for the first time.

It was the happiest moment of my life.

Remember When...

Remember when Caleb opened his eyes for the first time at seven days old?

When Caleb was born, his eyes were still fused shut, like a brand new kitten's.  The doctors told us that 99 percent of 27-weekers are born with their eyes open, so maybe Caleb was actually earlier than 27 weeks.  But I had had an ultrasound at 8 weeks 4 days that determined my exact due date, so I knew he was exactly 27 weeks and 1 day when he was born.  He was also a good size for a 27-weeker.  I grow 'em big.  ;)  I guess he was just in the 1% that have their eyes closed.  Just like Caleb!  Defying the [bad] odds!

From the beginning, Caleb would try and try to open his eyes.  The nurses would put saline drops on his eyelids to keep them moist and hope that it would help them come apart.

He tried!

And tried!

And tried!

I would hover over him for hours (when I knew that he was awake), just hoping that he would open those eyes!

When Caleb was exactly one week old, the neonatologist was by his bedside doing his daily rounds.  He looked down at him and said to the nurse, "Are his eyes still closed?!"  The nurse said, "Yes, he's been trying and trying to open them, but just can't!"  As the nurse looked away for a moment, the doctor bent down close to Caleb.  When the nurse looked back, the doctor said, "LOOK!  They're open!"

[The very first picture of his open eyes, just moments after they opened!]

Sometimes Caleb just needs a little bit of [unofficial] help.

I made it to the NICU about ten minutes after he opened his eyes.  I had really been hoping that I could be there the moment they opened.  How wonderful would it have been if I had been the first thing he saw?

 It took a long time to be able to figure out this open-eyes thing.

 He wasn't coordinated, but that's ok!  He had plenty of time to practice.

Of course he figured it out and now I get to look into his big, beautiful eyes every day!

105 days total

Caleb has spent over one fifth of his life in the hospital now.

Here is the chain of events that landed us in the hospital once again:

Tuesday, March 22nd: Caleb finally got over the cold that he had been battling for over a week. He had an RSV test and chest x-rays, and we were told that he didn't have RSV or pneumonia, just a common cold.

Thursday, March 24th: Caleb started coughing a dry, nasty cough. That evening he fell asleep in my arms 1.5 hours before his bedtime.

Friday, March 25th: I took Caleb to the doctor because he was very lethargic, cranky, had been throwing up about once a day, and had a fever of almost 103 degrees. He was diagnosed with an ear infection and put on antibiotics and zofran (for nausea and vomiting). The doctor said that if he wasn't noticeably better by Monday to bring him back in. Before we even got home that afternoon, Caleb started getting worse. He threw up many times each day throughout the weekend.

Monday, March 28th: I took Caleb back to the doctor. His oxygen levels were low (down to 74 at one point when it's supposed to be mid 90's to 100) and he was more dehydrated than ever. The doctor decided to admit him to the hospital. There, he got an IV, supplemental oxygen, more chest x-rays, many blood tests, and a snot test for RSV and the flu virus.

Nate also had RSV and had to wear a mask for the first few days until he felt better.

The next few days kinda blended together. The chest x-rays came back negative for pneumonia. He was taken off of oxygen on Tuesday afternoon (when he pulled the oxygen tube out of the wall when no one was looking. He just wanted to prove that he could do it). Also on Tuesday he started having such bad diarrhea that they wanted to keep him an extra day, despite his breathing being fine. The RSV test came back positive (which is very comforting to me, actually--if it was just a common cold that he needed supplemental oxygen for, I would be scared that

every time he got a cold he would need oxygen). Every other test came back negative. They

said that he had a random stomach virus, not the flu. They would have sent us home on Thursday, but Caleb refused to take fluids orally. They sent us home on Friday although he still wouldn't drink very much.

Watching Baby Einsteins. I love that show. What a lifesaver.

This is Caleb saying "cheese."

The nurses loved him. He learned all of the cues for when to say "bye-bye." He learned that he could pull his IV tube to make the IV pole come close enough to his crib so that he could reach the equipment on it and play with it. He learned how to say "cheese" for pictures. He learned how to say "thank you"--a necessary phrase, since he got so many compliments on his charming eyes and ridiculously long eyelashes. (He still needs help using that phrase at the right times, though.)

The nurse who took out his IV said that he was the best kid that she's ever done that to--EVER. He just stood there, watching what she was doing. When she took the tape off, it hurt a little so he stuck his thumb in his mouth for comfort and just continued watching her. When she actually removed the IV, he cried a tiny cry for a split second. When she was done, he just went back to playing. He was a perfect angel, as usual.

Now it's Saturday and Caleb looks and feels great! He's eating enough (just barely--like normal) and we have our GI scope rescheduled for 2.5 weeks from now. He started walking hard-core today! And he never stops smiling! Except for when he face plants right into his dump truck toy after walking all of the way across the room. Then he cried.

Oh yeah, and now I have RSV. Yuck.

Every day I am impressed with Caleb's joyful personality, his strong spirit, and his happy demeanor. I don't know anyone who is tougher than him. That poor child has been through so much, but you would never know it! He is such an amazing example to me. I love him so much, and I'm so honored that I get to be his mother, witness his miracles, and be the recipient of his love. Every day I am in awe of the obstacles that he has overcome and the cheerfulness that he always exhibits. I never thought that my biggest hero and greatest earthly example would be my own tiny son.

The world needs more people like this.

I met an amazing couple while Caleb was in the NICU. I don't know their last name. I doubt I'll ever see them again. But I think about them a lot. They are some of the most amazing people I've ever met.

The mom's name is Camille, and the baby's name was Chloe. Camille was Chloe's biological aunt. Chloe's birth mom (Camille's sister-in-law) realized when she got pregnant that she wasn't ready to be a mom, and Camille and her husband had been trying for nine years to have a baby, so the birth mom offered for them to adopt Chloe. Of course, they were ecstatic.

Then, at the 20-week ultrasound, they found that Chloe's legs weren't developing. She would never be able to walk. Camille and her husband talked about whether or not they still wanted to adopt her. Obviously, it's hard to walk straight into a trial like that. But they were angels and recognized that she was already their baby, and that the inability to walk didn't change anything. They already loved her, and there was no going back.

Then she was born three weeks early, but her lungs were very, very underdeveloped. She was admitted to the NICU. After a few days it was very apparent that there was more wrong with Chloe's little body than just her underdeveloped lungs and her undeveloped legs. She was retaining fluid--swelling up terribly, and not urinating.

It was the same rare, undiagnosed problem as Chloe's other biological aunt who only lived for a few hours after birth.

Camille and her husband were told that Chloe's chance of living was looking dim.

They just wanted the adoption to be finalized. They wanted to look at their daughter and know that she was theirs, that they were parents, as they always wanted to be. They hoped and prayed that she would hold on until she was one week old, when the adoption was set to be finalized in court. Since her condition was so unstable, they didn't dare make the 45-minute drive home at night. They slept on the floor of the Parent's Lounge every night. They ate in the cafeteria. I don't know where they showered.

After another day or two they learned that Chloe was deaf and blind. They were told that she would likely never be able to breathe on her own.

They could have walked away at that point. Chloe's birth mom was considering not signing the adoption papers anyway. But that would have broken their hearts. They loved that baby. They wanted her and needed her.

It was a rough week for Camille and her family. There were lots of ups and downs; some days it looked almost as if Chloe was going to be alright. That made their decision even harder.

The day of the adoption came, and Chloe was made theirs. Their dream came true, and they had a daughter. I saw them that day, and I'm sure I can safely say that it was the best day of their lives.

But the next day, I think it was, they did the hardest thing that anyone could ever do. They had to let their baby girl die. I didn't see them that day, and honestly, I'm glad. I don't think I could have handled it. I imagine that they had their family with them, and Camille sat in a rocking chair and held her baby for the first time, soaking in all of the love, the looks, the memories, the good...and then she let her die peacefully.

They were left alone, just the two of them, as they were when they had started their journey to parenthood. Only, they were left with hefty medical bills. They were left with more pain in their hearts than most people could fathom. But they were left with the knowledge that they were parents--that they had a daughter named Chloe who was more loved than most children in the world. That although she only lived for a week, she would be theirs forever, and no one could take away the title of "Mom" and "Dad."

They are true heroes. They knew what they were getting into by the time the adoption was finalized. Every good parent sacrifices for their children, but Camille and her husband put everything on the line. They will always have an ache in their hearts, but they will always have part of Chloe in their hearts, too, that will make the ache worthwhile.

Camille, if you ever read this, I hope you know that I admire you more than most. I hope to be as loving and giving of a mom as you. I will never forget you or Chloe. I will always remember you as a hero.