What You Didn't Know

I post a lot about how far Caiden has come since his premature birth and how lucky we are but I don't think I've mentioned exactly how amazing it is that he's here with us.

I had been in pain for three days prior to going into the hospital. I had gone in some weeks before with the same symptoms and been sent home so I was prepared to grind my teeth through it this time. When I was unable to stand, sit, or lay without being in pain I decided it was worth being sent home to make sure there was nothing wrong. I was not prepared for what followed. I was transferred from my admitting hospital to one a half hour away for the NICU. I had never been in an ambulance before. The ems sitting in the back with me was an older man with white hair, he held my hand the entire way and told me about his family and asked questions about mine. I had cried the whole hour before, and he knew it. He told me not to be afraid, his son had been born early too and was thriving. As long as I was strong my baby would be okay, I had to be positive.

I never got that mans name, if he told me I don't remember. He is the reason I was able to be calm the remainder of my labor. Neither one of us knew how sick I was, but he changed my outlook from fearful to hopeful. I wish I could find him and say thank you, he made a huge impact on my life. As he was leaving, he gave me a small hug and wished me good luck.

I had severe preeclampsia and class I (severe) HELLP Syndrome, two things I had never heard of going into the hospital. My platelet count was in the lowest range, my blood pressure put me at risk of seizures, my liver was starting to fail and the doctors were worried about other organs following it. My blood pressure was stabilized but still very high my entire delivery and my count kept dropping. There are two pictures of me during labor/delivery and I was unrecognizable due to swelling.

Every four hours my blood was being taken to monitor my liver enzymes and platelet count. With HELLP syndrome, the lower your platelet count goes, the higher risk you are to have bleeding issues after delivery. Many HELLP deliveries end with blood transfusions. Luckily mine did not. However my platelets were so low that I wasn't allowed to have an epi (I didn't want one anyways) and the doctors were afraid to do a c-section.

HELLP Syndrome is a silent killer, a rare killer, but one none the less. It is estimated that as many as 48,000 pregnant women in the US will develop HELLP each year. A seemingly small number until you find out that it can have the same symptoms as preeclampsia, gall bladder disease, the flu, etc. and many doctors have never heard of it. It cannot be prevented, is only diagnosed with a blood test, can occur after delivery, is absolved by delivery and doesn't always occur alongside preeclampisa.

Had I gone into the hospital with only preeclampsia I would have been put on magnesium and bed rest to buy at least a few more days for Caiden. But due to having HELLP and how severe it was, he needed to be delivered right away. Luckily he was head down when I was admitted so I was allowed to try for a vaginal delivery, if anything went wrong I was told I would be rushed immediately to surgery. The doctors were hoping for the best. I didn't know how to read the monitors keeping track of my contractions and his heart rate, but I was later told that with each contraction Caiden's heart rate would dip, they didn't know the cord was wrapped around his neck four times. I still don't know why they didn't take me for a c-section then. Fetal distress usually, if not always warrants one.

At one point when I asked the nurse taking my blood why it was necessary to do so frequently, he said, "we're just keeping an extra close eye, we want you to be able to meet your baby." It scared the hell out of me. I thought I was on the brink of death but I didn't have time to focus on me. I still had two months until Caiden's due date.

When you're told your baby is going to be delivered months before they're ready, its a total out of body experience. You prepare for your child's death. There's no way they could survive so early and so small. Even after their first cry and the first time you hold them, you still anticipate it. You have no expectation of bringing them home, you can't afford a hope. But then you do, its not until months after discharge that you can finally catch your breath. Their prematurity wasn't a death sentence. It was a chance for you, their parent, to grow and learn, to become strong in your heart, mind and soul.
Nearly a year later and I still wake up in the middle of the night to ensure he's still breathing.

Living through the diagnosis of HELLP and having a child born premature has taught me three things:

1) You can never prepare for everything.

I thought I knew everything I needed to know about pregnancy. I had my entire labor planned and the second I walked into the hospital it all went out the window. I never anticipated complications because I had never heard of what could go wrong. I knew about stillbirths and miscarriages, but that could never happen to me.

Along with raising prematurity awareness, I strongly believe there should be a campaign to raise awareness about the complications you might not have heard of. I am always telling Caiden's story, he's not just a preemie, he's a HELLP baby, a survivor. Had I not put my pride aside and gone into the hospital that morning, I could have stroked and/or my liver could have failed. We could have been dead long before we ever knew what if anything was wrong.

2) Gaining a few pounds and a couple stretch marks or being peed/spit up on by a baby are not the worst things that can happen to you when you sign up for motherhood.

Sometimes I have to remind myself this when Caiden is being particularly difficult. He could have died, I could have died. He could have been born with a disorder or even earlier. He very well could have been in the NICU longer. But none of that happened. I agreed to let my body change to protect him and let him grow the moment he was conceived. I will never be the same because of him, and that's not a bad thing.

3) Don't take a single day, a single moment for granted.

A child will only be so little once. They're going to grow and become independent. They're going to be both annoying and cute. Soon they won't want to be snuggled or tolerate "This Little Piggy." I want Caiden to grow up knowing where he started, I hope as he ages the significance of his birth is not lost on him. He turned me into a fighter, a survivor, an advocate, and a mother.

10 Months!

Wow. What a week! Caiden is ten months old (as of yesterday)! I can't believe there's only two more months until his birthday! Time really does fly by. In the past week he's nearly mastered sitting on his own (he was a little late on that one- I'm blaming his still top-heavy preemie head), gotten his first top tooth, is cutting three more, and has started rocking and pushing himself forward trying to crawl. Its amazing the amount of progress he's made!

Today Caiden had a regular check up. He weighed in at a whopping 21lbs even! Thats over five times his birth weight, and in the 55th percentile without adjusting for his age. He's 31in tall, in the 98th percentile! He's going to be a very tall man one day!

I'm so excited for June, I've decided to do a nautical theme for his birthday, he has a little baby tie with sailboats on it that I am totally in love with. Since I don't have any close friends with kids, its just going to be a small party for family but I'm sure it'll be great. We can go overboard when he's older. I'm making sugar and dye free smash cupcakes for him. I know its fun to let them destroy brightly colored cake, but I don't want to clean up a sticky blue one year old or try to get a sugar high munchkin to go to sleep. We can enjoy it without all that. I'm a little apprehensive of giving him things like that anyways.


On another note, one of my best friends is pregnant! She's such a wonderful person and deserves her little miracle more than anyone I know. Its really bittersweet for me. I get to watch her go through her pregnancy (granted we live halfway across the country) and have the experience of birthing a healthy full term baby. I can't wait for her to tell me she's gone into labor and see her take home her little one.

Its amazing to see something that once made me the happiest I've ever been, change another person in such a fundamental way. Had I not miscarried in December, I would still (probably) be pregnant right now. I try not to think about it, but I often wish I had a big round baby belly despite the risks to my health. It would have been wonderful to have gone through it together, to have done something differently.

But, I have a wonderful son who proves that we can never take anything for granted. I would rather be here to raise him than die trying to have another child. I was so prepared to have eight more weeks of pregnancy ahead of me that I missed out on a lot of things I wish I hadn't. There is not a single picture of my husband and I together while I was pregnant.

I hear a lot that I should be thankful, that the last weeks of pregnancy are miserable, that I got two extra months with my baby. But it doesn't make it better. Fifty-six hours of labor was miserable, as was 25 days of watching him from a distance. Only seeing him grow lessens the pain I still feel. He's done amazing since birth, and continues to defy doctors expectations of him. He hasn't caught up to babies his age yet, but he will, and he has all the time in the world.

Ten years from now, it won't matter at what age he learned to sit, crawl, walk or talk. What will matter is that he did learn and continues to each and every day. He always has a smile and to him, it doesn't matter that he had a rough start, he won't remember, all that matters is that he's alive and happy.

Remembrance

As Caiden's first birthday is fast approaching I find myself thinking back to his delivery and time in the NICU. Its hard not to think about how his story began as we approach the anniversary of his surprise arrival. He's come so far in such a short period of time, I can't imagine being more proud of him.

I remember the day I went into the hospital, I was prepared to be sent home like every other time. I wish I had taken one more picture of my belly before laying down in that bed. I had no idea I wouldn't be allowed to move the next three days. I remember before the doctors started an IV I asked if I could get up and walk around for a minute. I didn't really understand what was wrong with me.

I remember calling my mom and bawling as I told her I was probably going to have a c-section and begging her to fly down as soon as she could. I remember crying as the nurses dug around my veins trying to put an IV in both my hands failing to numb one and then finally putting it in my wrist. I remember watching my husband walk in, still in his work uniform and the scared look on his face as I repeated "I'm sorry" over and over again. All the conversations we had about viability and promising the likelihood of an early delivery happening to us was slim, turned into lies.

I don't remember much of my labor. I do remember as I was getting ready to push the nurse told me not to, I was supposed to wait but I didn't have a choice.
I remember kicking the doctor in the stomach who was there to catch him.
I remember dozens of people walk in as I was pushing, waiting to evaluate what was wrong with my child.
I remember him crying and how happy I was to hear that wonderful sound. I relaxed and for a moment, for the first time since being told I was having him early, I felt at peace.
I don't remember him being held up by my face so I could see him though.

The first 24 hours after his birth went by slowly. I was torn between resting and wishing I was allowed to get up and go see him. I was refusing pain meds, I didn't hurt. I didn't understand why they wouldn't let me out of bed.

The first time I was allowed to go see him I was insanely nervous. I didn't know what I was going to see. I didn't know how small he was or if the steroids had been given enough time. As I was wheeled out of my room, and down a maze of hallways we passed two nurseries. I remember smiling at the sleeping babies and wishing my son was in there, chubby and healthy, just waiting to be brought back to me. I remember how lost I was going through the hallways. I had never been in the hospital, I didn't know where anything was, I didn't know what the inside of a NICU looked like.

As we rounded the final corner we approached a large set of double doors with a corded phone on the wall. I remember my mom who had been already telling me I had to let them know who I was. The doors stayed locked and shut at all times. We were buzzed through and I saw the hand washing station for the first time. It was automated and hands free. I was amazed at the setup. We passed through another set of double doors.

It was a large room divided into sections by walls and curtains. It was dark yet warm and monitors could be heard beeping. I knew my son was in that room somewhere but I didn't know where. I wanted to run to him. We turned another corner and there was a raised glass table with a blue light shining on it. The smallest baby I had ever seen was laying on the table on its belly, completely naked except for a diaper, hat, foam block out glasses and tons of wires attached to him.

I remember the nurse smiling at me and saying "so you must be mommy," it was the first time someone had used that term in reference to me. It seemed alien to me, I certainly didn't feel like a "mommy." I stood up and met my son. I remember feeling an overwhelming urge to cry and tried my hardest not to. The smallest baby I had ever seen was my son. Sleeping, unaware I was there next to him. I just stood there for a minute, I had a hard time believing that was my son. The nurse said something I will never forget. She looked at him and noticing my hesitation, she said "you can touch him."

I never thought I would need permission to touch my own child but those words were the sweetest words I'd ever heard. After being told no at everything the past few days it was amazing to be granted permission for something, especially an act so important.

I remember regretting sitting back down in the wheel chair and having to go back to my room for meds and rest. I never wanted to leave his side. The trip to and from the NICU would become routine in no time. We started parking in the same spot. The receptionist knew us by name and was excited when we finally left. Caiden's doctor knew what time to expect us and would stop by every day to give us an update personally.

I remember his doctor better than I remember the nurses. Dr. Craig Anderson. He is an amazing man. He was there whenever we needed him, he encouraged me to pump and breastfeed, he made it possible for Caiden to go home ahead of schedule. He was excited to see him again when we went back a month later to pick up my extra milk. I can't wait to see him again someday and say thank you. I never got the chance to say goodbye and thank him for all he did for us. Caiden may have done well on his own but I believe that man saved his life.

I may not have the best memory, but I remember what's important. I'm glad Caiden won't have any memory of his time in the NICU. I'm glad he'll grow up knowing he did something amazing as a baby. He survived. And each year on his birthday we will celebrate his life, not mourn the time we lost. Each year we will celebrate how far he's come. Each year we will move one step closer to normality and one step further from premature.

Is Breast Always Best?

The day of Caiden's birth the last thing on my mind was what my child would be eating. I was exhausted after 56 hours of induced labor and my baby had been whisked away to the NICU in some unknown part of the hospital before I'd even gotten the chance to touch him. The only thing on my mind was if he was going to be okay, I didn't think twice about my own health.

The night of the day of his birth I still wasn't allowed to go see my son. My husband visited him and brought me back pictures and the news that Caiden's doctor wanted me to start pumping. During my pregnancy I had absolutely no intention of breastfeeding. It wasn't something that appealed to me. It wasn't something that I felt I had to do. It was a choice I made with absolutely no knowledge of what the future would bring.

I was in the hospital a total of six days. The morning of the 4th day, the day after his birth, the day I would finally be able to go see him, a lactation consultant came to my room. She explained that Caiden's doctor really pushed for all moms to breastfeed. Due to his prematurity it was the best gift I could give him. So, she fitted me for a pump, explained how to use it and left as quickly as she'd come.

I was nervous, but I did it anyway.

My first trip to the NICU I carried with me two full bottles of pumped milk (colostrum). I was proud of myself. I had done something I never thought I would do and I had an amazingly strong supply. My son would not be going hungry. I wouldn't have to buy formula.

As the days wore on pumping became a habit. Every three hours on the dot I turned on my pump and watched as liquid gold filled up the bottles. For something that seemed so unimportant in the beginning it soon consumed me. I worried about how much I was producing, why one side did better than the other, would he be able to breastfeed.. His doctor and nurses were ecstatic over my supply. So many moms struggle, especially pumping to produce enough, and I could have fed every baby in that NICU.

About a week before his discharge we tried breastfeeding. He was pretty good at it, but needed the help of a nipple shield. Not a big deal I was told, most preemies needed one and could outgrow it. I didn't love the experience. It was hard to position his tiny body against mine and frustrating that while I was feeding him on one side, the other was leaking all over me.

Eventually though he was cleared for discharge and we were sent home to do things on our own. I was as equally excited as I was nervous. Once we got home Caiden's interest in breastfeeding quickly dwindled. We had to supplement with a high calorie formula twice a day to help him gain weight quickly, so we had no choice but to give him bottles. It made teaching him very difficult. Eventually after a few weeks of struggling, lots of screaming and crying I gave up and started exclusively pumping again. He would still be getting my breastmilk, just not directly from me.

I loathed pumping. Every three hours I had to thaw milk, feed and change Caiden, pump, package and freeze it. The entire process took about an hour sometimes longer. Often at night I would wake and by the time I was done I only had an hour until I would have to wake up and do it all again. It was exhausting and uncomfortable. Where breastfeeding mothers can change positions and feed laying down, often sleeping through their child eating, I could only pump in one position: sitting up, awake and uncomfortable. As many times as I tried I was never able to feed Caiden and pump at the same time.

I carried on like this for 6 1/2 months before realizing I couldn't do it any longer. I was extremely fatigued and my once amazing supply was dwindling. I had gotten in the mindset that I had plenty stored, it wasn't going to hurt if I pushed back a pump session an hour. An hour became two and then three and eventually I just stopped caring whether or not I pumped. I wasn't being the best mother I could be to my son because I was tied to my pump five hours a day. There were too many times I sat with him in a bouncy chair next to me while I pumped, unable to hold him or play with him or help him along with his development. I couldn't take it.

After I stopped pumping I was dramatically happier. I had more patience, was getting more sleep, and had more time to spend with my son. I didn't regret quitting. The difference was night and day.

It would only be a few months though until I started to regret it.

It took me a while before I understood exactly why I regretted stopping. There's so much pressure to do what's best and right. "Breast is best" and "formula is evil". I feel that the "breast is best" campaign is a dig at the teenage girls who don't try to breastfeed and go straight to WIC for formula. While I'm not saying I support that or not, it is a huge insult to those of us who struggled to breastfeed.

I admit I gave up pumping, I could have gone longer but for my sanity I had to quit. We never managed to breastfeed the "right" way but that doesn't make me a bad mother. Circumstances stacked the odds against us and in favor of other mothers. My son had to be on a high calorie formula to gain weight. That doesn't make me a bad mother. It was a necessity. The time he was on it, I had more than enough milk to make up those feeds, but he needed the added calories my milk didn't have. That formula isn't evil, it helps an untold number of babies who struggle with low body weight.

I started thinking that if it wasn't for the doctors and medicine around today, my son and I wouldn't be here. If it weren't for pumps and formula he wouldn't be alive. Formula is a saving grace for all the mothers out there who tried but didn't have it in their cards to be able to breastfeed for 3 months, 6 months, a year.. Think of all the children who wouldn't be alive without formula because their mother had a low supply, or a health condition that made it near impossible, or a premature child who's head was smaller than its mothers breast. I don't think a woman can be unsuccessful at breastfeeding as long as she tries. If she's given her child even a milliliter of breastmilk she's done something amazing.

Every mother should be proud of what they've accomplished. We should congratulate each other on trying when so many can't make it to their goal, not insult and brag when we may not know the story behind why they give their child formula. A fed baby is a happy baby.