Baby Cameron's Birth Story

The last couple of months have been hectic. After finding out at 31 weeks that our son had a heart defect, my weeks were filled with doctors' appointments both in and out of state. We ultimately decided, with such a rare diagnosis and an unclear outcome, that we would deliver at the Children's Hospital of Philadelphia, who are third in the nation for pediatric cardiology. They also had the Special Delivery Unit, which is for mothers giving birth to sick babies who need immediate attention at the hospital. It also helped that my whole family lives in Philadelphia, so I had plenty of support when it came to childcare and the like.

CHOP doesn't allow for VBACs, which I was upset about, since that was what I was planning on for 30 weeks, and everything was lining up for a good try. But, I had to put that aside, because I wanted my baby to be born where he'd get the best care, and in the end, the only thing that mattered was his well-being.

Because I was scheduled for a c-section, I had to go up to Philadelphia during my 38th week, just in case I went into labor early. This part was really hard, because we decided I'd go alone that week and stay with my mom, just so our toddler, K, could stay in school and in his routine as much as possible. I had panic attacks and meltdowns almost daily the week before, and then a full attack in the car on the day of my departure. Thankfully, that week went by quickly, and by the next Saturday, I was reunited with K and B.

My c-section was scheduled for the 24th. We got to the hospital bright and early in the morning to get all the pre-op stuff done. I think the strangest part of a scheduled c-section is just showing up for it. With my previous c-section, I labored for 17 hours before we went to the OR. But I had hardly had any contractions at all before week 39, so the experience was completely different. I was also nervous about getting a spinal block, because I'd heard that sometimes it numbs so far up that you have trouble breathing. I also don't remember getting my epidural with my previous labor, because I was already in pain from the contractions.

Thankfully, I have a really high pain tolerance level, and even the anesthesiologist was impressed that I hardly flinched when he placed the block. My husband joined me shortly after and tried to hold a conversation with me while I was doing breathing exercises to keep my mind off what was happening, and the numbing sensation creeping up my body.

This was also the inbetween time, where we didn't know just how sick our baby would be when they delivered him. It was a strange moment, because I wanted to see him so badly, but I also wanted him to be okay, and was afraid he'd come out and not do well.

Cameron was delivered around 11 am in the morning. He came out screaming and yelling, which was already a great sign. We were waiting to see how his heart would adjust to the pressure change when he began to use his lungs, and the fact that he carried on screaming and yelling for a good thirty minutes was a amazing sign. They quickly rushed him out of the room and into an adjacent room where the cardiology team was waiting. B went to join him in the next room while they sewed me up, and the whole time I could hear my baby crying, and I loved it.

Eventually, they brought the baby back in for me to see, and he was just as beautiful as his brother was when he was born. Beautiful, pink, and looked perfectly healthy. They didn't have to give him oxygen, bag him...nothing. He was free of leads and tubes and machines. I asked to nurse him, and they even let me go back to my room and nurse him there for twenty minutes, which apparently doesn't happen often. They are supposed to take him right to the cardiology intensive care unit (CICU) for monitoring, but since he was doing so well, they let me nurse him in peace, and I couldn't have been more grateful for those moments before they took him to the CICU.

I had to wait until my spinal wore off enough for me to get on my feet and in a wheelchair so I could go to the CICU to see Cameron again. That took about four hours, and I was determined to get out of that bed to see him. I found it remarkable that it took me only four hours to get on my feet after this surgery, compared to my last c-section, when they didn't try to get me out of the bed until the next day. It was not easy, nor painless, but I did it, and I got to be wheeled around to the CICU to see my baby.

The worst thing about CICUs/NICUs is that you are not alone with your  baby. You are surrounded by babies who are much worse off than yours, or better than yours. In our case, thankfully, Cameron was doing really well, but that made it even harder when he was sharing a pod with three other babies who weren't doing well at all. In fact, we had to leave the pod the next morning because one of the babies was having his chest closed after surgery, and we wouldn't have been allowed in the pod during the procedure.

I won't bore you with all the details over the next few days we were there in the CICU. Cameron was moved into an overflow pod with new babies, one of which was born the same day he was, another who was one year's old and was there with what sounded like croup, and then another baby who was just weeks old and was transferred from another hospital. I very often think of  Cameron's birthday buddy, and I think of his mother, who sat by his bed all day long, unable to hold him, but kept her hand on him the whole time. I think about that mother and I try to channel her strength on days that I think are hard, but aren't anything compared to her burden.

The sucky thing about my stay at CHOP was that on Tuesday night (Cameron was born Monday afternoon), the charge nurse explained that we'd be getting a roommate in our room because the SDU (special delivery unit) was filling up, and they didn't have another choice. This also meant that B couldn't sleep in my room anymore. So, we started the scramble of trying to find out where B could sleep, since the Ronald McDonald House was full so far, as were all the local hotels. Wednesday and Thursday were stressful because of this, but B was able to secure a sleep room on the same floor for Wednesday night, and they managed to wiggle us in for a sleep room for Thursday night, after I was discharged, so I could continue to nurse Cameron and pump through the night.

Much to everyone's surprise, Cameron was discharged on Friday, a mere four days after his birth. We were originally told he'd be in the CICU for two to three weeks, and to be let home sooner than a week was just amazing and welcome news. He would have been let home on Thursday, but he was struggling with his sugar levels and with feedings, so they wanted to monitor him for one more day to be sure his sugars got under control.

It was a trying week, but at least it was only a week. I remind myself often that Cameron is lucky -- his outcome could have been worse. God has been listening to the prayers that many people have offered on Cameron's behalf. The universe took all the positive energy that others had sent our way, and directed it to Cameron's body to help heal him.

We've been home now for a week, and Cameron has been doing very well. He's not nursing at the breast as much as I want him to, but I am trying to stay positive about it. This will come. It will come in time, just as it did with K. His cardiologist saw him this week and was very happy with his progress. They found two other developments with his heart, but those weren't anything to worry about right now, and so, I'm not going to. He even made his urologist happy in that his right kidney is functioning well, he is urinating just fine, and there's nothing to do but wait and see when it comes to this as well.

Thank you all for reading, and thank you for praying, especially. Please continue to do so for Cameron, and also for the rest of the babies at the CICU right now, some of which have been there for their whole lives, and some of which will never leave there.

Unwillingly Becoming a Heart Mom

31 Weeks. At 31 weeks, you are supposed to mostly be in the clear, as far as all the “big issues” go. You’ve already made it through the first trimester. You’ve already made it through the big anatomy scan, which is nerve-wracking enough as it is. When you are done with that, and all has been marked as being developmentally normal, you just try to make it through the third trimester and all its uncomfortable nuances.

At 31 weeks, after attending a routine scan to follow a low risk kidney issue marked on our son’s 20 week anatomy scan, we were thrown for a loop as the sonogram technician spent way too much time watching our baby’s heart. As soon as she left, I turned to my husband and said, “Something is wrong. They never watched his heart for that long before.” But what could possibly be wrong now that wasn’t seen on the previous five ultrasounds?

We learned shortly thereafter that our son had some sort of defect with the right side of his heart. The Maternal Fetal Medicine doctor didn’t want to say too much about it, I suspect, because she didn’t know too much about it. We had to wait a whole week to be sent to the pediatric cardiology team at Johns Hopkins to find out that our baby had a very rare defect called Tricuspid Valve Dysplasia, and that everything that had been smooth sailing for the past eight months was to be thrown right out the window.

Tricuspid Valve Dysplasia means that his tricuspid valve, between the right aorta and right ventricle, is allowing blood to flow backwards between the two chambers. It should only be going in one direction, and that is through his pulmonary artery and into his lungs. Right now, it is classified as a “moderate” regurgitation...but this can change at any moment. I don’t think I’ve ever felt so helpless about anything, as we wait to get through the rest of this pregnancy and pray that the condition doesn’t worsen.

Everything about this otherwise healthy pregnancy, I feel, has been stolen from me. My plan to VBAC (a plan which was going smoothly, by the way), is no longer on the table. I can no longer attend the midwife/OB practice I’ve been going to for the last eight months -- I have to now see a MFM at Hopkins to be monitored more closely. Actually, I am going to see them, AND I am going to start commuting to Philadelphia once a week so I can be seen at CHOP and hopefully deliver there.

My baby is most likely going to be in NICU. My hopes for an easier breastfeeding journey this time around have also been taken away. I know I’m going to be hooked on a pump, away from my baby. I’m not going to have skin-to-skin. I won’t have delayed cord clamping. I won’t be able to let my oldest son hold my youngest son.I won’t be able to take my son home right away. I won’t be able to go home right away. We won’t be able to share him with our family. I don’t know what I am going to have, to be honest. I don’t even know if I’m going to have a healthy baby. Nothing is a given anymore. It’s all an unknown.

I have unwillingly become a “Heart Mom.” I’ve been adopted by a group of women out there who also have “Heart Warriors.” I have seen a ton of facebook pages following heart warriors and their journeys, and I never thought that I would personally be walking this road, too. I think of all those sick babies, all the pictures, all the happy and sad endings, and I wonder where I fit into all of it. How is my story going to end? How sick will my son be? That’s one of the hardest parts of this all -- I still don’t know just how severe this is, and I won’t until he is born. It’s all very much a waiting game.

My very supportive friends and family keep telling me that I am allowed to make the tough decisions, I’m allowed to let go to the expectations that I had all of this time, and I’m allowed to mourn all of it. Inside, I know the things I am letting go are very small in the long run, and that I am going to do whatever I have to do to give the best chance and care to my son; but I am still mourning it. I am still astonished that I’m a Heart Mom. I still don’t understand how I got here.

I was 31 weeks along. Nothing like this was supposed to happen.

Please keep us in your thoughts and prayers as we traverse our new normal for the next month or so. Please pray that our baby remains relatively healthy, and that his heart continues to beat strong. Pray that I can maintain a positive attitude, that my mood doesn’t tank, that I can manage my depression and anxiety well enough to keep my head above the water as I struggle with suppressing feelings for the good of not stressing out baby, but also allowing myself to emote in some way so that it all doesn’t boil over.

Thank you. <3

Letter to Kaiden Before His First Day of School

Dear Kaiden,

Tomorrow is your first day of preschool, and I am filled with excitement and dread and wonder all mixed together in one big ball that is sitting at the bottom of my stomach.

 See, Daddy and I knew from a long time ago that you were too smart for your own good. We also knew, especially given my background as a teacher, that you weren't going to thrive in a traditional classroom environment. That is simply not how you learn. You have grown so much in daycare, but to continue in daycare would be a disservice to you at this point. There's so much more out there for you to soak up, and we want to expose you to as much of it as we possibly can. That is why we decided to send you to a Montessori school, where you can flourish at your own pace, learn what you want to learn, and not be bound to a desk all day long.

This is a big change from a home daycare, though. For the past three years, you have been loved by women who stepped up in my place to keep you safe and grow you while I worked. Two of those years have been with Miss Ashley, who took you under her wing as if you were her own son. She has kissed your bumps and bruises, wiped away your tears, laughed and cried along with you -- she has done exactly what I would have done if I could have spent my whole days with you. Even when I stopped worked as a classroom teacher, she still continued to watch over you three days a week so you could play with your friends and learn from her.

Needless to say, I am nervous about letting you go tomorrow. I know you will probably handle it like a champ, and you won't look back once you see all those new friends to play with -- but it is still scary. It is scary to think that I am taking you away from where you were comfortable, from Miss Ashley and your friends, from the routine you knew, the bedroom your napped in, the table you sat at to eat your snacks and lunches, and I am putting you somewhere completely different, with different rules, different routines and different people.

Oh, but Kaiden, I know you will love it. Miss Edvina was already impressed with you when we took you for your trial morning. She couldn't believe that months ago, you already knew your letters, numbers, colors and shapes. She didn't believe me when I told her that you've known all those for over a year at that point, and then she assured me that you would do very well as a Montessori student. She also assured me that your fiery, curious and outspoken nature wouldn't be an issue. Daddy thinks that the school is in for a big surprise when you get there, but I think you are going to do well with your new boundaries and rules.

What is hardest about all of this is that it means you are growing up, and that your growing up is truly out of my hands. I packed your lunchbox, wrote your name on the inside of your backpack, got all of your things ready for tomorrow, and stood there in the kitchen and told Daddy, "I am one of those moms now, aren't I? I have to make him lunch now, and check his backpack."

I am happy to be one of "those moms" now. I was always happy to take on being your Mama. I will always be happy with being your Mama...

...but it is still bittersweet that you are growing up in front of my eyes, and there's nothing I can do to slow it down.

I love you so much, and you will have a perfect, wonderful day tomorrow. I just know it. <3

Love,
Mama

Update to Potty Training a High Needs Toddler

It's been a month. I didn't update. Why?

Well, because it didn't work. At the end of the weekend, I was in tears, I was angry, and Kaiden was just as frustrated. So, I let it go. I stopped it all. I just didn't have the energy or desire to keep putting him on the potty every twenty minutes, especially when he wasn't even going. It wasn't doing either of us any good. I emailed his preschool and told them I wasn't sure how strict they were about it, but it didn't seem to be working out. They emailed me back and told me to let it go, because it would be doing more harm than good, and they would work with him when he started school. So, that was it. We were done.

Fast forward to last weekend. We were coming home from the beach and stopped at the Delaware rest stop. They have family bathrooms there that have little potties for little kids. While I was on my big potty, Kaiden INSISTED that he wanted his diaper off so he could sit on the little potty. I put him on the potty, and although he didn't go, he did sit -- and that was a huge deal. We gave him a special treat from the store and went on our way home.

When we got home, I decided to take him with me into the bathroom whenever I had to go. I used to do this before, but he'd throw a fit and act like I was taking him into the bathroom to be murdered or something. This time, he went with me without fussing, and sat down and actually peed. But, what was more important, is that he realized that he was in control of his bladder. You could see it in his face that he understood when it would release. Every time I took him after that, he'd pee when I peed.

But, what really shocked me was when he stopped playing with my phone to tell me that he wanted to sit on his potty, and he went potty and got up and went back to playing. Then, I knew.

All those people who told me that he'd do it when he was ready...were right.

The next day was a daycare day, and he wouldn't go at daycare, but I think it is because she doesn't use potty chairs, but the seats that go on the big potty, and Kaiden doesn't like those. I put him in underpants when he got home from daycare, and aside from a poopy accident, he stayed dry for the rest of the night. This continued into Tuesday, where he stayed dry the whole day (aside from a poopy accident) in his underpants. Then came another daycare day. His provider went out and bought the same kind of potty we use at our house, and sure enough, Kaiden went the whole day on the potty and stayed dry again.

Today, I brought him to the mall for family fun day. We stayed for a few hours in his underpants, and he used his travel potty twice in the mall -- and stayed dry. <3

It is looking good, and I am hoping it keeps going well. We were using cars to motivate him, along with stickers and cookies, but today I changed the cars to coins because he was becoming a little too obsessed with them...and he has a lot of cars now. Haha.

So, I guess it is right in that they do it when they are ready. :)

Potty Training is the Devil (Especially with a High Needs Toddler)

To preface this, before I get all the comments all saying the same thing: I know that boys take longer to train. I also know that it's not good to rush it, and I also know they tend to do better when they do it on their own time. BUT, we spent hundreds of dollars to enroll him into a Montessori school for the fall, and they prefer he be potty trained (most require it), and I am afraid that he won't be potty trained AT ALL and they will turn him away. So, for the three day weekend, I decided to give it a try. 

The plan: Sit on the potty for 10 minutes, off the potty for 20 minutes, all day long.

Day 1: This was a trying day, especially because I was on my own most of the day while my husband dealt with our rental property. I didn't expect the first day to be easy, but I also didn't expect it to be super exhausting either.

Now, Kaiden KNOWS he should pee and poop on the potty. This isn't our first time trying to potty train him. In fact, we started around 18 months when he was taking a lot of interest in it, and he did REALLY well...until he caught a stomach bug, which erased all his progress. Ever since then, he's becoming increasingly more stubborn about it. Because of that, we backed off for awhile, because it just wasn't getting anywhere. But, then he started to complain about his diapers and how he wanted to wear underpants, and he'd throw fits every diaper change, and really kiddo -- if you don't want to wear them, and you know where to go potty, THEN GO.

Through the day, K would throw fits when I put him on the potty. I moved the potty chair out of the living room and into the bathroom so he would be "bored" in there and hopefully just go in the potty to get out. Kaiden, though, is stubborn as hell, and he just holds his pee and poop to spite us. As soon as I put underpants on him, he'd pee. So, I stopped putting underpants on him and just had him run around naked.

The day ended on an almost positive. He had five accidents and four potties in the potty. While the day seemed much worse than it was, I realized that he did pretty darn well for his first potty day.

Day 2: Man, I thought this day would be better, but it was more frustrating than the first day. I realized on day one that Kaiden stopped drinking his water. My husband said that there is no way that he knows that drinking a lot makes him pee, but I think we underestimate K a lot sometimes. Day two, he hardly drank at all. He knew. He would also only let a few drops of pee out at a time, just to barely relieve himself, and then hold the rest of it.

By dinner time, he  hadn't had any accidents, but he also didn't really go to the bathroom (except for peeing his pull ups during naptime, which I'm not counting right now). Our solution? Before dinner, I sat him on the potty and tickled him! Kaiden thought this was hilarious, and it also made him pee a little more. Small victory!

At dinner time, though, he was sitting in his booster seat and was shaking with effort to hold in a poop. It was pathetic. We stopped dinner and put him back on his potty, and surely enough, he pooped! He was so excited about it that he stood up before he was finished and it dropped on the floor. That's okay, though! We'll take it!

Kaiden had asked at the beginning of the day, just after he woke up in the morning, if he could have ice cream for going to the potty. I told him that if he has no accidents all day long, I'd take him for ice cream. Well, we made it until the last hour of the day, and I put his underpants on...and he immediately peed in them. I really wanted ice cream too! Haha. But, after the day ended, we only had one accident, and that is better than before!

Day 3: We are still in the middle of day three, but it's going over much better than days one and two. He hasn't thrown fits when it is time to sit on the potty, and I even went to the store with him (he wore underpants with a pull up on top) and he stayed dry for our whole trip. Because he stayed dry, I let him continue to wear his underpants and pull up at home, and he is STILL dry, which is quite the feat!

I will let you know how it goes tomorrow, hopefully.

Oh! For motivation, we give him a matchbox car, a sticker for his potty poster, and a cookie -- and when he poops, he gets double that. It's not ideal getting so many cookies in a day, but he is very food motivated, and I want to keep his enthusiasm up!

Managing Depression and Parenting the High Needs Toddler

The last week or so has been a lesson in patience. It is not easy being pregnant and managing a toddler. It's especially not easy when your toddler is a high needs toddler, and you feel like you can't breathe.

When I realized Kaiden was high needs, he was younger, maybe around five or six months. He had a very hard time doing anything if we weren't directly watching him. He'd complain until we'd pay our complete and undivided attention to him.

I often would vent to one of my mommy groups/due date groups, who all had children born in the same month as Kaiden. I'd tell them how depressed I'd get that I couldn't catch a break, and I felt like every day I was suffocating under the weight of having to give all of my time and energy over to my son, who, in turn, would want more, more, more.

I know they didn't mean it, but often times, my mommy group would make me feel guilty. They'd tell me, "Well, if he is acting out for more attention, then you should give him more attention," implying that I wasn't giving him enough attention when it was the exact opposite -- I was giving him ALL the attention I possibly had, so much so that I stopped paying attention to myself.

I suffer from major depression disorder. It's been a constant struggle for me to stay on top of it. Since becoming a mom, my worst days are the days when I am consumed by Kaiden. These are the days when I hide in the bathroom, close the door and cry because I NEED a moment alone -- a moment when he is not whining at me, or acting out to get my attention. Sometimes, it takes all I have in me to make it to bedtime, and after getting him down into bed, I can do nothing more but to lay in my own bed and sob.

One of the mommy groups I recently joined is for mommies of high needs babies and toddlers. In the group description, it says that we all must be mindful that many of us are exhausted and depressed due to the nature of our children, and to be gentle with each other. I look back at that description often and try to remind myself of that for ME. "Be gentle with yourself." It's easier said than done, though.

This week has been a trying week. Kaiden is 2.5 years old, and the terrible twos are so much more amplified when you have a high needs toddler. I read an article that highlighted that you should not compare your high needs child to other children. This only leads to frustration and depression, and it's not fair to your child, since every child is different. But let me tell you how hard it is, when your child can't manage to play on his own for more than a minute at a time, and his peers will sit and play with their legos or playdoh or crayons for 15-30 minutes and be CONTENT. Contentedness does not exist in this house.

Kaiden is like a bumble bee. He flits from one flower to the next, never staying at one long enough to appreciate it. I buy Kaiden new toys in hopes that one of them will capture his attention long enough to let me look away, but they never do. The only thing that does help is the television, and even that is losing appeal for him.

So, how do I manage this? Well, writing helps out a lot. Just getting my thoughts and my struggle out there gives me some hope that someone else will see this and commiserate and realize that they are not alone.

The weather is nice again, so I have been trying to get us out of the house. This is hard because I am often tired and achey and walking with the stroller is exhausting. I can't let him walk out of the stroller because he is flighty and tends to dart off, and it is stressful running after him. But, a walk wears him down, it give us some peace of mind, and I feel better after exercising. I have also been walking hand-in-hand with him around our neighborhood, which is nice for us too.

I try to get us out of the house to go to stores or the mall to walk too. Anything to give him a change of scenery is helpful, as long as he isn't too tired and cranky. The mall is nice because they have the closed in play areas which are more optimal for us than playgrounds, since Kaiden doesn't pay attention when he is playing and would be the one to fall eight feet off the playground equipment. We don't even take him to playgrounds often because we literally have to chase him everywhere to make sure he isn't going to kill himself.

I also need to be better at asking for help. Kaiden already goes to daycare three times a week, which is very helpful, but I still don't really get time to myself, since I work on those days. So, maybe learning to find something to do for myself that is rewarding and relaxing would be nice. I should get back to running, but I have to modify that now that I am pregnant. Maybe I can walk on my own instead...or go get a massage. :)

Anyway, a high needs toddler is a very real thing. If you want more information about "high needs" Dr. Sears (whom I don't always agree with) has a great article you can read here. 

It's Been Awhile: Kaiden is getting a sibling!

So, I have been secretly keeping another blog that has been chronicling my infertility journey and trying to conceive number two. I did it this way because I knew a lot of family followed this blog, and we didn't want people to know we were trying again, and we didn't want them to bother us.

I'm happy to say that after our failed FET in November, we are now 9w3d pregnant after our first Femara + IUI cycle. I am not sure how or why this worked after all the cycles I had to do to get Kaiden, but...it did. And I thank God for it, because I wasn't ready to do IVF again (which is why I went back to doing an IUI). I think God knew this, and here we are. :)

This is our baby. We aren't finding out the gender this time, so put us in Team Green. We are calling it "Tumkin" which is how Kaiden used to say "pumpkin" and I thought it was appropriate being that we are due October 30th. Another October baby!