I love my little heart warrior

Sigh. I know I haven't updated in a week and I really have no excuse as to why. To be completely honest, I've just been so unmotivated lately. Not just when it comes to blogging but with everything. I've been super sluggish and perfectly content just hanging out at home in my pajamas. The stress of not having a job is really starting to bother me. I hate not knowing, I like having a routine and feeling secure. I was really hoping that I would have found something by now. It was Olivia's heart surgery anniversary over the weekend (Friday) so I gave her a little present (Booboo Buddy). I planned on writing a separate (long and detailed) post about her anniversary but it just didn't happen so I decided that writing a little something was better than nothing. Two years ago (last Friday) I was sitting in a waiting room wondering if my daughter would survive heart surgery. It was the absolute longest day of my life, It's hard to explain (or even remember) all the thoughts and emotions I had. It was scary, putting my daughters life in someone else's hands was not something I wanted to do but it was something I had to do. I had to trust a complete stranger to save her, I felt extremely helpless. I've said this so many times but I still can't believe it all happened, it doesn't seem real.. even now. I'm so happy that it's over but knowing that she may need another surgery is always in the back of my mind and that terrifies me. Although some time has passed and it has gotten easier, I will never have the "normal" mommy mindset. I know all mothers worry but I feel like it's intensified for me, I can never "un-see" or "un-know" all of it and that's just how it is. This year her anniversary was not during the best time because my mind has been so preoccupied and of course now I feel guilty about that. Next year I plan to make it a much more happy occasion, to focus on the good because she has really come a long way in her short life. I love my little heart warrior!

Hugging her Booboo Buddy.

CHD awareness week

This week is CHD awareness week (February 7th-14th)! I find it interesting that Olivia was born just two days shy of that. In case you don't know, Olivia was born with three heart defects. I'm going to try to explain them as simply as I can, I'm not a doctor so I don't know all the correct terminology but I did listen (the best I could) when all of this was explained to me. Her first (and most critical) defect was* CoA (coarcation of the aorta), the main blood vessel was narrow which was causing her heart to pump harder to force the blood to flow through correctly. This is the reason why her heart was enlarged when they did an echocardiogram. She had surgery for her CoA at eleven days old, there is a chance that it could become narrow again but her last check up showed that it was open like it should be. Her cardiologist told me that if it was going to become narrow again, it would have happened by now. I am very happy about that, her surgeon was amazing! Olivia also has two other defects, an ASD (atrial septal defect) and a VSD (ventricular septal defect). Both of these were put on the back burner while we dealt with the CoA, during our last visit we talked about them a little more. Basically an ASD and VSD are holes in the heart, in Olivia's case they aren't very big. Her cardiologist told us that they can close on their own over time so we just have to wait it out and keep an eye on them. One of them is no longer an issue, the other one is smaller now but it hasn't closed completely. I struggle with this from time to time because we still don't know if she will need surgery to close it or not, we wont know for a few more years and it scares the hell out of me (to be completely honest). She was only eleven days old during her first surgery and while it was horrible and sad to see her go through, I know she wont remember it. She was too young to understand what was going on, too young to be scared. Knowing that surgery may be necessary when she is four or even five years old gets my mind racing. How would I even explain that to her? I don't know if I'll have the strength, I'm sure I will find it but it will really break me down. I know I always say I'm going to be positive and I try my hardest. I'm sorry if I contradict myself but that's exactly what my life is, it's a roller coaster. There are major ups and downs when it comes to Olivia's health. Most days I feel like "I can do this! She is perfectly fine and life is great!" and then every once in a while I just wallow in my sorrow. It's extremely difficult not to wonder "why her?!" but why any kid?! It's not fair in the slightest but life keeps moving and we try to adjust. The more time that goes by, the more "normal" it becomes. I just wanted to take some time to get my thoughts out during this week, it's an emotional time for me. I also wanted to raise awareness, I have to admit that I knew nothing about CHD before or during my pregnancy, I never gave it any thought. I worried about a ton of other stuff  that I read about (all the things that could go wrong) and it surprises me now, CHD is so common but it's not mentioned very often. If I had the choice, of course I would pick for Olivia to be perfectly healthy but that just isn't the hand we were dealt. I am so happy she is here, she has overcome so much and she is a beautiful, sassy, and strong little girl who amazes me time and time again.

*I used past tense because her CoA has been surgically repaired.

My beautiful little heart hero.

Our CHD experience: She has heart disease
Olivia's story of hope: Little Hearts
Facts about CHD: CHD facts

Cardiology appointment

Olivia had her cardiology appointment today, when we got there she was running around the waiting room. I couldn't even sit down because I had to chase her around the whole time. She was not happy about getting her blood pressure taken, that put her in a cranky mood. Too bad that was only the beginning, during her echocardiogram she was crying on and off for the entire half hour. Luckily they had the same Dora DVD from last time we were there so that distracted her just enough to get it done. Right as Dora was ending, the echo was finished. The technician who did it was the same one who did it when we brought her to the ER at five days old. She has seen Olivia a few times since then and we talked about how tiny she was and how far she has come. I was surprised at how much she remembered, she even knew which room we stayed in. After the echo, she had to have an EKG done, the lady who did it was really nice, she was great with Liv and basically played with her the entire time she was doing it so Olivia barely noticed what was going on. After she was done, she gave Liv a cute little princess sticker and Liv didn't want to put it down, she walked around with it while we waited for the doctor. She was also messing with everything in the office, mainly the computer keyboard and mouse. Her last appointment was six months ago and not much has changed since then. That's not a bad thing, her VSD is still small and her ASD is as well, her coarc is still open like it should be. She's still on her own curve for weight and height. I asked a few questions, I wanted to know if she would have any physical limitations and they said no, besides being a body builder (I doubt that will ever be an issue). We wont know if she will need her ASD closed until she is between three and five. Her next appointment is next December, she will be almost three at that point so I will be extra nervous at that visit. The doctor was confident that even if they do need to close the hole, it can be done by a cath procedure and not open heart surgery. When we walked back out into the waiting room, there were some clowns (part of the children's hospital, not some random crazy people) blowing bubbles, playing a guitar and singing songs. Olivia ran right over and started popping the bubbles and dancing to the music, it was so cute. I guess the clowns didn't see me because they asked Olivia where her adult was so I had to yell across the room. There were some older kids watching the clowns too and one of them almost knocked Liv over but she didn't care at all, she just kept playing. It was a pretty long visit (over three hours) so she fell asleep on the way home. I wasn't happy about that because I knew she wasn't going to nap once we got home. I was right, it's only a twenty minute ride home so obviously it wasn't long enough to get the rest she needed. She had a meltdown around 7 so I ended up putting her to bed earlier than normal. I'm happy that we don't have to go back for a whole year. I'm hoping that next year she will be able to understand better, she was scared today because she obviously didn't know what was going on. It was a long day and I'm exhausted so it's off to bed for me!

Her cheeks were so red from crying during the echo, my brave little girl.

Cooped up

Things haven't gotten much better with Olivia, she still has a runny nose and cough. She's been super picky with food but she has done a little better (barely) the last few days. I actually called the doctor again because she gets me so worried. She was being lethargic all day, she just wanted to lay down and she didn't seem herself. He told me the symptoms could last another week but as long as her breathing is normal and she doesn't have a fever then she is okay. He also said that if she was still not feeling well by Tuesday then I should bring her in again so he could check her just to make sure everything is okay. I talked to him for a good fifteen minutes about her heart and my concerns. One of the holes (I can't remember which one) is now restrictive (that's a good thing) so it's not even an issue anymore. The other hole is pretty small and it would be unlikely that it could cause an issue, if it did then it would be over a period of months (not days). I felt a little better after talking to him but I haven't been in the best mood lately. I don't even really know why, maybe because Olivia has been sick. Seeing her sad makes me sad, especially today when she wasn't acting herself. I'm also still a little sick myself, it seems like this cold will never go away. It's been two weeks and yet I still feel sluggish, all I want to do is sleep to be honest. I think if I could just get two or three nights of good sleep, I would feel so much better. We've been cooped up in the house for almost a week now and it's driving me crazy, I want to get Liv out and about but I'm worried it will just prolong her being sick. I don't want to bring her around other kids and have her spreading her germs either. I was thinking that we could go to the store or library tomorrow but its supposed to snow tonight so if it does, I am definitely not leaving the house. I don't do well driving in the snow but maybe we could play outside, last year she wasn't too impressed with snow but now that she's a bit older she might actually enjoy it. Here's to hoping Liv wakes up tomorrow feeling better!

Things I never thought of

I remember when I was around 19 years old and I went to my first dentist visit without my parents. I had to fill out a form, there were tons of questions about having different diseases (check yes or no). I remember going down the list (quickly and slightly annoyed) checking no for all of them. One of those things was heart disease. When Olivia goes to the dentist, she will have to check yes. I know that doesn't seem like a big deal but the fact that a simple visit to the dentist can be dangerous for her is so scary to me. Heart disease was never something I gave much thought to but now, it's always in the back of my mind. If I overhear someone else's conversation and heart disease, heart failure or a heart attack is mentioned, I freeze. It always stops me in my tracks and I try to listen in, I probably shouldn't but I always want to. Even when I see commercials on TV for medication and they say "Do not take if you have heart disease", it makes me cringe. I see so many people asking questions in the heart group that I wouldn't even think to ask. Will Olivia be able to ride roller coasters? Will she be able to go to a haunted house? Can she take certain medications? Will she be able to have kids? I have no idea. I always write down all these kinds of questions so I can ask her cardiologist. I will be sad for her if she has to miss out on experiences. When people look at Olivia, they see a normal kid. She runs around and plays, she looks healthy but I feel like her heart disease is always hiding in the shadows, ready to flip our world upside down again. When I can't fall asleep (often), my mind starts to wander. I think about when she is older, if she will be embarrassed about her scar or if kids will make fun of her. I will do my best to teach her to be proud of herself but I know I can't shield her from everything (I wish I could). When she's my age, will she take care of herself? Will she go to her cardiology appointments like she's supposed to? I know, I think way too far into the future but even when she's an adult, I will remind her to be careful. I know she is okay right now, I will always treat her like she's a normal kid. I wont let her heart disease define her but it's definitely a part of who she is. It's her story and there are so many little reminders of that every single day, it can never be just brushed aside. Even when people ask me about having another baby, the first thing that pops into my mind is "Will the next one have heart disease too?". I don't know what the "normal" baby experience is, I feel like I was robbed of that. When Olivia was born, she was rushed away from me. We weren't able to spend all of our time in the hospital room together, she was in the NICU. I couldn't hold her for weeks, I couldn't breastfeed her, I could barely even bottle feed her. If the next baby is completely healthy, I feel like the experience will be so different. As much happiness as I had with Olivia, there was a lot of sadness that came along with it. I was scared most of the time and then I felt guilty. I wanted to just be happy that my baby was here and alive but I was so nervous that I would lose her. I don't want the next baby to go through any of that, it would break my heart just like it did with Olivia. This turned into a long ramble, I feel like I just typed out a bunch of scattered thoughts so I hope this post actually makes sense. I always wonder if other heart parents feel the same, it's nice to know I'm not the only one.

So thankful for this beautiful little miracle.

Mommy's intuition

Over the last seventeen months Olivia has seen tons of doctors and specialists. She has seen her pediatrician (of course), cardiologists, GI specialists, a urologist, ER physicians, surgeons, anesthesiologists, plus countless nurses and therapists. I am extremely grateful to each and every one of those people for helping Olivia, especially to those who saved her life. However, doctors have tons of patients. They are helping and saving people every day and as much as they try, they can never fully understand everything you are going through with your child (unless of course they are going through it with theirs). During the (almost) six months that Olivia had a feeding tube, the doctors just kept telling me "this is common in heart babies", "don't worry, we can always schedule her for the G tube surgery" or "everything will be fine, she just needs more time". They were wrong. If I didn't make a change, Olivia was going to be bound to that tube for years. I've talked to other moms in similar situations, some of them had kids that were 5 or 6 and still using a G tube. I knew I had to do whatever I could to help Olivia. I understand that not every child has the ability to eat on their own and for them, the G tube is a life saver. I also understand that a G tube is not the end of the world and certainly not the worst thing a child needs. I know it's crucial for a child to get adequate nutrition, especially when they are so young. With all that being said, I knew in my heart that Olivia could do it on her own, they just weren't giving her the chance. The G tube was an easy fix and that would solve the problem for them but I wasn't going to give up that easy. I did not want my baby going into surgery again (even if it was just minor). I did not want her throwing up because she was getting fed too much. I did not want her to be in any sort of pain. I did not want her to have limitations. I did not want her to give up on food and most importantly, I did not want her to think I ever gave up on her. I truly love all of Olivia's doctors but they didn't know. They didn't know the struggle we were going through, even if I complained to them for a few minutes, they couldn't possibly understand. They weren't at home with us, they didn't see her reaction to having a tube placed and even if they did, it would never break their heart like it broke mine. They didn't see her vomit every feed or cry because of her acid reflux pain. I felt completely helpless and I broke down one day and cried on my kitchen floor for over an hour and when I was done, I said that's it.. enough is enough. I stayed up for hours upon hours every single night doing research about tube feeding, acid reflux, heart defects, feeding therapy. The internet is an amazing tool and I suggest to any parent struggling with their child's health to use it. There are so many support groups, websites, blogs, even Facebook has tons of groups for just about anything, it's endless. No matter what is wrong, someone else is experiencing it and the internet will connect you with them if you do the research. Just knowing that you are not alone is a huge help, talking to someone else about your fears or your child's diagnosis can calm you down. Getting advice from someone who has been in your position before, just for that small glimmer of hope that everything could work out for you too, it's worth it. If it hadn't been for the "tube fed kids deserve to eat" website, Olivia would have a G tube right now. All I had to go by before I found that site was the doctors and they were ready to send her into surgery. The moms on that website helped me more than I ever could have imagined. Strangers. Strangers who instantly connected to me because their child was going through the same thing, it's amazing to me. Even though a lot of it is scary and may leave you with questions, at least you can get answers from the doctors about it, at least you have good questions to ask. Any little thing I found online, I would write down and ask at her next appointment. I couldn't have cared less if I was being "annoying" or asking too many questions, this is my child and I needed to know how to help her. The best thing you can do for your child is be their advocate, they can't talk so you have to do it for them. You have to know what questions to ask, explain every single symptom they are having and always find out what the risks and benefits are for anything they suggest to you. Mommy intuition is a real thing. You see your baby every day, the doctor only sees them for a few minutes/hours, you know when something isn't right. All of Olivia's doctors were shocked that she started eating on her own and gaining weight, as if it just happened randomly. They all sort of gave me the "I told you so speech". No. It did not happen magically, she did not just decide to start eating one day. It was me, I made it happen. I found the help, the tips and tricks from other moms, the weaning plan. They have no clue how hard it was to do it, they just see her gaining weight and that's it. Even if it didn't work and she needed the G tube, I would be okay with it because I would know that I did everything in my power to prevent it but I would ultimately accept it.

Please don't take this post wrong, I know that doctors really can't (or shouldn't) get emotionally attached and maybe it makes them seem cold but it takes a very strong and smart person to be a doctor and there isn't anything I could ever say or do to show how much I truly appreciate them. Just to clarify one more time, I absolutely love and am eternally grateful to all of Olivia's doctors!

"Well, I won't give up on us
Even if the skies get rough
I'm giving you all my love

I'm still looking up

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it"

Heart update!

I didn't sleep much last night because I was worried about Liv's cardiology appointment today. She hasn't been to the cardiologist since November. Everything looked good back then but every time we go, I cross my fingers hoping for good news. It's really scary not knowing if things will be better or worse. Paul came with us today, I was glad because I really hate going alone. First she had her EKG, she cried a little bit but she was pretty good for most of it. The nurse was trying to play with her and distract her. She gave her some Dora stickers and Liv was happy, for about a minute. Then she had her echo, that took longer but luckily they had a Dora DVD so she watched that while they checked her. It only worked for about half the time, she would cry for a few minutes and then watch Dora for a few minutes and then cry again. So it went okay but she got pretty mad about halfway through and tried jumping off my lap. When we saw the cardiologist he said he was really happy with her weight gain. She jumped from 5% last visit to 10% this visit, he said that's really great. I asked a bunch of questions (of course) and he put my mind at ease a bit. Her coarc repair still looks good, it's growing with her and it's wide open like it should be. Her asd and vsd (holes in her heart) closed a little more but not completely. They are going to keep monitoring them and if she ends up needing surgery it won't be until she's around four or five. I'm really hoping that she doesn't need another surgery, the doctor seemed optimistic that she wouldn't. He also said that sometimes they can do a cath procedure instead of open heart surgery. I rather do that, well.. I rather it not be an issue at all but I'm really hoping we are done with heart surgery, I don't know if I can get through it again. I'm glad the doctors are happy with her progress and I hope she continues to do well. We don't have to go back for another six months, her next appointment is the first week in December so I'm going to try to put all my worries aside until then!

 

These pictures pretty much describe the whole visit. Distracted, crying, distracted.

Busy weekend

Sorry for slacking with the posts, this is the first time all weekend I'm sitting down to relax. Okay, maybe a bit of an exaggeration but it was a pretty busy weekend. Yesterday we went to my friends daughters first birthday party, we had a really good time. It's cute to see Liv "play" with kids around the same age as her. They have an outdoor cat and when Olivia saw the cat, she started screaming in excitement. The cat ran away of course (smart move) and then she kept trying to chase her, she's nuts. After the party, we went store hopping looking for a red shirt, I wanted one for today (red for heart disease). When we finally got home I had to give Livy a quick bath, feed her dinner and get her to bed. She fell asleep quick, we were out pretty much all day.

 

Team Livy - Heart Warrior! Her lovely parents/grandparents/cousins/aunt & uncle

WE LOVE YOU OLIVIA! 

Today was the March of Dimes 3K walk (although we took the long route so I think it was more than a 3K for us), Olivia was still sleeping when it was time to leave this morning so I had to wake her up. She was cranky when we first got there but once I started pushing her in the stroller she was fine. The walk was fun, Team Livy was taken so we were Team Livy - Heart Warrior. There wasn't many of us because I kind of gave short notice, other people wanted to come but had previous plans and I also forgot to mention it to everyone. I think next year I'm going to have shirts made for Team Livy, that will be cute. I am glad we were able to recruit a few people though! We earned over $500 for the babies. Thank you to everyone who donated and a special thanks to everyone who walked with us! It's great to have such awesome support from our family and friends. We actually made it on the news for a split second, that was pretty cool to see. Olivia was exhausted by the time we left, even though she just sat in the stroller and ate the whole time. I'm glad that she slept on the car ride home but then she was cranky for a few hours so she took another nap. I got a little sunburn and now I'm beat, tomorrow is going to be a nice relaxing day (I hope). Fingers crossed that Olivia sleeps in so I can too!

All too familiar

So the other day I saw a preview for a movie that looked interesting, it's called "If I Stay". Someone had posted about the book so I decided to buy it. I always like reading the book before watching the movie, although I always end up complaining about how the movie can't compare and how much better the book is. I'll probably still go see the movie even though I know it wont be as good. Anyway, I just started reading the book a few hours ago and I'm almost done with it. I would have already been done but I can't read while Olivia is awake, she just harasses me. It's an easy read and I haven't been able to put it down. The book is about a young girl who gets into a car accident with her whole family and she is the only one who survives. She is pretty much in a coma and outside of her body, kind of in limbo watching herself as the doctors try to save her. She gets to decide if she dies or wakes up. There have been several parts where I had to stop reading for a second because it reminds me so much of when Olivia was in the hospital. Reading about Pulse ox, breathing tubes and chest tubes just takes me back. There was one part where I read out loud to Paul, it was something like "the machines were constantly beeping but it was more often due to an issue with the machine rather than the patient" those aren't the exact words but I couldn't find that part again. Reading that reminded me of the beeping at the hospital and how I could never fall asleep when I was there. At first all the beeps and alarms were so scary but once I learned what they were, I didn't freak out every time they went off. Three weeks in the hospital with Olivia and I learned a good amount of medical terminology. I payed close attention to everything the doctors and nurses said. I wanted to grasp what was really going on without them having to tell me in layman's terms. I remember the doctor smiling at me when I asked him what her blood pressure was in her lower extremities. I think if I tried reading this book a year ago, I wouldn't have been able to. It was still too fresh in my mind, it's kind of surreal now. When I think back to then, I feel like that wasn't my life. I feel like that didn't really happen, of course I know it did but the fact that it seems decades ago actually makes me happy. I obviously don't want to dwell on it but I do occasionally have flashbacks. I think I always will, that was just a huge part of my life. As surreal as it was giving birth, learning Olivia had heart defects and needed heart surgery was even more surreal. I always end up rambling when I post late at night but I'm really enjoying this book even if it is all too familiar.

On a lighter note, I absolutely loved Frozen! *SPOILER ALERT* I thought it was so good, now I know what all the hype was about. I was so mad at myself for not buying it when I saw it for $13 last week but Paul ended up ordering it for me so I'm happy. I liked most of the songs (besides Fixer Upper), my favorite was Let It Go of course. I already knew all the words to it and to Do You Want To Build A Snowman just because of Vine. I loved the scene when Elsa sang Let It Go and she was making the ice castle, it looked so real. That song is pretty empowering! Paul made fun of me when I told him how I was amazed by that scene. I was rooting for Kristoff and I was in shock when Hans didn't kiss her and told her he didn't really love her. I probably sound like such a weirdo right now but I love Disney movies. Oh and Olaf had me laugh out loud a few times, seriously awesome. I can't wait to watch it again! I still like The Little Mermaid better of course, it's just a classic to me but I think Frozen comes in second. If you love Disney movies and you haven't seen it, I highly recommend it.

Quick Q&A

So I've gotten a couple of questions in the past few weeks and I decided to do a quick Q&A, I wanted to take the time to answer these questions honestly.

Q.) How were you so strong?
A.) I get this question a lot, the truth is that most of the time.. I wasn't. I wasn't strong, I broke down many times. After I first found out, I went into the bathroom and cried my eyes out. I wondered why?! Why my child? (although I would never wish it on any child). What did I ever do in my life that was so bad to deserve this?! There is no answer to that. I will never know why it happened but it happened and I had to deal with it. People always say "I couldn't even imagine" or "I couldn't do it" Well of course nobody wants to imagine something horrible happening to their child but if it did, you would be able to handle it because that's all you can do. If I had the choice of letting her go into surgery that day or erasing everything and making her magically healthy so she didn't need surgery, I would have chose the latter. You just have to take it day by day (as cliche as that sounds) and some days hour by hour. It's okay to breakdown, it helps. My main goal was to be there for her and I was. I was with her every single day and night at that hospital.

Q.) Are you happy that she won't remember any of it?
A.) Yes, now I am. When people said "she won't remember this" while it was happening, it didn't make me feel any better. I knew she wouldn't remember it but it was happening at that time and she could feel pain, I hated that. I wanted to her to be comfortable and happy but that wasn't the case. I truly did wish that I could take her pain away, I wished it happened to me instead. When she is older, I will definitely tell her the whole story and make sure she knows how truly strong she is.

Q.) Did it affect your marriage?
A.) Yes, something so significant will definitely shake things up a bit. There were ups and downs but we got through them and I think it made our marriage stronger in the end. Everyone deals with emotions differently, my husband and I have two completely different ways. I won't say he was in denial but he was much more positive than I was. He didn't want to believe anything would have a bad outcome and he also was trying to be strong for me. I tried to prepare myself for the worst. I did try to be positive but at the same time, I didn't want to turn a blind eye. I wanted to make sure no stone was left unturned, that she was getting the care and help that she needed. Even if I was wrong about what I might have thought was wrong with her, I wouldn't take it back. I needed answers and even if my questions were way out there, I asked them anyway.

Q.) What helped you through?
A.) Normally I'm not a very emotional person, I rarely cry. I can honestly say that I cried more in that one month than I did my entire life. Crying really helped, I had to let it out or I would have gone crazy. A lot of things helped me through, not just one thing. My family and friends support was a huge help, so many people were praying for Olivia and a lot came to visit, sent gifts or just messaged me to say they were thinking of her. The hospital also had some counselors and I spoke to a few of them, they were really nice and very supportive. Even the hospital staff shared their stories about their own children, some of them went above and beyond to make sure Olivia was comfortable. I really think the biggest help was talking, about everything. Exactly what happened and what would happen, what might happen, what I had fears about, just anything I could think of. Also, having some time alone with Olivia gave me a chance to clear my head and just focus on how adorable and perfect she was to me. I would talk to her all the time even though she was usually sleeping. I would tell her about her room, her cats, her toys and books. I would tell her all the things we were gonna do once we got home and how much I loved her. I know she didn't understand me but it made me feel better.

Q.) Do you still worry about her heart?
A.) Of course, I always will. Every parent has worries, healthy child or not. I might be a little more paranoid just because of what happened but I try on most days to just enjoy my time with her. Worrying is usually pointless. I worried my whole pregnancy about what could go wrong and not one of my fears was about her heart. So all that worrying didn't help in any way. When I did find out about her heart, I dealt with it at that moment. My best advice is to try your best not to worry because things you worry about probably won't happen and things you don't worry about, might. There is no way of predicting tragedies. I almost lost my child and I would have never thought that could happen to me. "If you didn't bring her in, she would have died." -ER doctors exact words. I will never forget that because it echoed in my head, it was the scariest thing I've ever heard.

Thanks for the questions everyone. If you have any other questions, just comment below or email me at melissastensland@gmail.com and I will do another Q&A soon!

 The tattoo on my wrist has even more meaning to me now, she is strong.

Oh by the way, she has heart disease

Before I start I need to say that this is the first time I am going to relive this whole thing and it's been a year. This is going to be pretty heavy so if you want to keep things light, I suggest skipping this post. I'm going to try to make most of this about facts because if I don't, I may end up having an emotional break down. At the time all of this happened, I was extremely scared but I try not to think about it because I know it's over now and I want to enjoy as much happiness as I can with my daughter. I appreciate every moment I have with her and I think that is the one good thing that came from all that happened to her.

Trip to the ER:
I left off where we got to leave the hospital, we got home and everything seemed to be going well. She still wasn't eating great but she was eating. The next day we brought her to her pediatrician for a check up, he said everything was good and she looked healthy. That night is when things started to change, she stopped eating. It took me about 45 minutes to get about 10mls of breast milk into her. I figured she would be very hungry her next feed but the same thing happened again. She was also crying every hour or so but it wasn't for too long. I decided to call her pediatrician but it was already 11pm so I got connected to a nurse line. I explained what was going on and she asked me several questions. After talking to her she said to call my pediatrician in the morning. Olivia refused to eat ALL night, I was up trying to figure out what I should do, I let her sleep and then in the morning tried again, she refused. She was pretty much out of it and just wanted to sleep. The nurse came around 10am (the nurse the NICU told me they would have visit) and I told her everything that was going on, she looked concerned but stayed calm and called my pediatrician. She told him what was going on and I heard her say "okay, that's what I thought, thanks" then she looked at me and said "go get a bag ready because I need to call an ambulance" she was pretty calm so I wasn't really sure what was going on, I got everything for Olivia and myself. On the way to the hospital she got oxygen and I called my husband to meet us. When we got there, they started putting IV's and oxygen and all sorts of other stuff on her, I had no idea what was going on. There were a ton of people around me and they just told me they were trying to figure out what was wrong, ranging from not serious to life threatening. At that point I didn't know if it was anything serious, I was hopeful that she would be okay and felt relieved that we were at the hospital and she was getting taken care of. One of the doctors told me they were going to do an ultrasound of her heart "just in case" but they didn't think anything was wrong because they didn't hear a murmur. I honestly did not think she had heart disease.

 Left: I snapped this picture right before the nurse came over.

Right: I really debated taking this picture but I think it's important to explain to her what she went through when she is older, she is a strong girl & I am so proud.

Heart disease and surgery:
I was trying to overhear what they were saying while doing the ultrasound and I heard "heart disease" but I thought "okay maybe they said that they don't see any signs of heart disease, just because they said heart disease doesn't mean she definitely has it". The doctor came over and told me that her heart was enlarged and the cardiologist would come explain to me what was going on. I was in shock. It didn't really sink in until the cardiologist said "heart surgery" then my heart dropped, my throat became dry and everything around me was blurry. I could hear him continue to talk but I was in my own head. I went numb, I guess that's the best way to describe it. I've heard that your body goes into survival mode and you block everything out to deal with the pain. If you've ever seen the movie 50/50, when he finds out he has cancer - that's exactly how I felt hearing my daughter needed heart surgery. My first question was, is she going to die? I know that sounds morbid but I wanted to hear that she would be okay, they told me it was very likely that she would be just fine. They said CHD was more common than we think and that 1 in 100 babies are born with a heart defect. They also told me a little boy was there a few weeks ago with the same problem and he was doing great now. That softened the blow a little bit but still.. it was MY baby this time and how could I know what the outcome was going to be?! Nobody can say 100%, not even the doctors. Olivia had coarcation of the aorta, which is the narrowing of a valve, she also has a medium sized ASD & VSD (two holes in her heart). They decided to only do surgery on the coarcation because the holes can close over time. The heart surgeon came in to speak to me and he was very nice, he put my mind at ease a bit but still, signing a paper that says surgery can leave your child paralyzed is extremely scary. I had no choice. Having heart disease can be because of other underlying issues, although not always but they tested her for lots of things, one of the big things was turner syndrome. Luckily all her blood work came back normal but while I was waiting for it, I convinced myself she had turner syndrome (too much time on the internet during that hospital stay). The nurses told me to stop looking online and if I had questions, the doctors were the best people to ask. I tried to stay offline but it was harder than I thought. Before Olivia could go into surgery, she had to be stable. She was very dehydrated (I had no idea how quickly a baby could become dehydrated) and her body had basically shut down, her kidneys took a day or so to start working again. At eleven days old she was finally stable enough to go into surgery. I kissed her a bunch of times and I cannot explain or describe the feeling I had when they wheeled her away. I wondered if that would be the last time I would see my baby alive. Eleven days was not enough, I needed her to be okay. Waiting in the waiting room was pure torture, hours went by without anyone updating us on how she was doing. Finally I couldn't take it anymore, after about five hours I asked and I was told they were just about done. When the doctor came in I was shaking because I was so nervous, he said "she's doing good, I'm very happy with the way the surgery went". We (me & my family) all started crying (tears of happiness of course) and hugging. We thanked the doctor and went to see Olivia. She didn't have open heart surgery (she had thoracotomy heart surgery), the incision is on her left side below the armpit (the scar is very thin and looks so great today, I'm pretty impressed with the surgeon). They said that the open heart surgery wound is less painful than the one she got; which sucks.. I felt horrible for her. She had a breathing tube, feeding tube and several IV's. Nobody wants to see their child suffer, especially not when they are so tiny. Her recovery was a few weeks long, it was so up and down. One day she was great, they next day something bad would happen. While we were there, her lung collapsed twice, her chest tube was taken out too early so her oxygen started going down, they needed to put a new chest tube in and she was still refusing to eat. Which brings me to the next part of all this.. the feeding tube.

In recovery - my little heart warrior.

Love/hate relationship with a feeding tube:
Olivia did not want to drink more than 7-10mls of formula at a time, despite many efforts on my part and a feeding therapist, it just wasn't happening. When they first told me she was being discharged WITH the feeding tube, it really scared me. I had to learn how to put it in, "what?! I'm not a nurse, I have no idea what I'm doing!!" they assured me it was easy enough and I practiced on a doll. She had an NG tube which basically goes in her nose and down her throat into her stomach. Not a pleasant feeling for her and putting it in was a struggle as well. Much easier to do on a doll that's not moving and crying. She had the feeding tube for about five months and the older she got, the more she would pull it out. It was my enemy but I knew it was helping her grow and get the nutrition she needed so there was nothing I could do about it. With not much progress on oral eating (despite many therapy sessions), the doctors started suggesting a more long term option, a G tube (tube that goes directly into her stomach). I went back and forth with the idea for months. My main concern was, if she got the G tube, she would have it for years. I did so much research on tubes and found a great website that connects moms with other moms who have children that are tube fed. That was the best thing that could have happened (my crazy obsessive searching finally paid off!) There was one mom who really helped me, I talked to her almost everyday and she gave me tips on weaning Olivia off of the tube (which I discussed with our doctor) and she really just helped calm me down on certain days when I would have melt downs. My family also helped of course but it's hard to understand when you aren't in the situation directly. Before I found this site I tried taking out the tube several times and letting her get hungry but it made no difference. We had a surgery date scheduled for a G tube. We ended up cancelling the surgery the day before because I was able to wean her off the tube and she was gaining weight.. very slowly but gaining. I did this by slowly decreasing what was going in the tube and letting her make it up orally. This was in no way an easy task. It took months and she lost weight (she was always on the 5% curve for weight and by the end of weaning her off the tube she was around 1%). Just a quick side note, if you are having the same problem with your child and they are tube fed, ALWAYS talk to your doctor before attempting a wean. I had a very specific plan with her pediatrician, GI doctor and feeding therapist. We also had a stop point, if she lost a certain amount of weight in a certain time frame, the weaning would stop. I tried once before the successful wean and she ended up getting sick so that wean had to stop. It was also helpful to start purees and rice cereal because she loved eating, just not drinking. We started purees at about 5 1/2 months and that was a huge turning point and the whole reason why I decided it was time to try weaning.

 The picture on the left is her screaming, which she did often. I decided I was either gonna go crazy or laugh, I chose the latter. I look terrible but that's what spending three weeks living at the hospital does to you.

Here we are now:
Olivia is now 13 months old and doing well. She is by NO means a "good eater" but she has definitely come a very long way. She drinks around 1-4oz every three hours (yes they still want her on that newborn schedule ugh) except I don't have to wake her up during the night anymore (yay sleep!) She still enjoys eating foods although she likes table food a lot more than purees and yogurt now. Unfortunately she was teething last week (three teeth coming it at once and one is a molar) so her eating suffered and she lost a few oz. but the doctor isn't concerned and she is back on her 5% weight curve. She is still tiny and we have bad and good eating days but she is happy and meeting her milestones! As far as her heart goes, she will always need to have yearly check ups for it. It was more frequent at first but now the visits are more spread out. The ASD & VSD are closing, one of them is no longer even an issue. The other (I can't remember which) most likely wont be an issue, as long as she has no problems. The cardiologist is confident that she wont need anymore surgeries.

Left: Half the food gets spit out or thrown on the floor but it's okay. ;) 
Right: Olivia with her heart warrior blanket. It has her name and says heart warrior - it also says "a mended heart is a special heart".

Okay, exhale! That was really long! I hope I can help anyone going through the same thing or even something similar. I know while it was happening to her, talking to other moms or just reading about others who went through it and now their child is fine really put my mind at ease, if only for a moment.

*I joined this great website for children with heart defects and I shared Olivia's story, here is the link if you want to check it out, join or share your heart warriors story!  Little Hearts - Olivia