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.

Medical bills piling on

The amount of medical bills that we have for Olivia is insane, we have insurance but with very high deductibles. It also doesn't help that they keep piling on (recent ER visit, we haven't even gotten that bill yet). We are still paying off her birth, NICU and heart surgery bills from last year. I feel like we will never get out of this debt and it's been heavy on my mind. It's a lot of stress to have to go trough something so scary and then have to pay so much money for it. Anytime we've ever tried to get some kind of assistance, we are told we make "too much money" (and by too much, I mean maybe $500-$1,000 "too much" per year) but nobody takes into consideration all the expenses and medical bills we have. It's so frustrating, we're not rich enough to pay but not poor enough to get help. It's very intimidating seeing such high numbers and not having any idea where the money is going to come from. I have been seriously just trying to keep my head above water and today I feel like I've been pushed down and I'm being held under. I'm the type of person who needs to have a plan, I need to know my future is secure and I don't right now. It's scary. No matter how much or how hard I work, I am constantly just sending it off to pay bills, I don't have any extra. I'm sure many other families can relate, it's just what comes along with medical issues. For now we are just setting up payment plans for everything and taking it day by day. It's so easy for people to say "money is not important" and I don't put money before my family or health but without it, where would we live? How would we eat? It may not be the most important thing but it's obviously necessary. I am so thankful that Olivia got the help that she needed and is doing well, I would never change that. I just need to step back, take a deep breath and relax. I know these bills will be paid off eventually but that seems very far off to me.

Pregnancy & delivery woes

Quick history on my pregnancy:
It took over a year for me to get pregnant so when I finally did, I was ecstatic! I didn't actually believe I was pregnant so I ran to the store and got 3 more tests (it was kind of like the scene from Knocked Up). The pregnancy was actually going well but it ended up being a really bad scary pregnancy. I wasn't throwing up or having back pain so all that was great. I started having issues around 12 weeks when I saw (cover your eyes for TMI) blood. I quickly called the doctor in a panic and his response was to come in the next day (it was the middle of the night) and if I lost the baby there was nothing he could do about it (his exact words by the way) cue the tears. The next day I went in with the mindset that I was no longer pregnant, well I was. I was so happy and I thought that was the end of my little health scare. (lol yeahhhh, little did I know this incident was just the tip of the iceberg) The time came to find out the sex of the baby, I was so so excited for this visit.. they told us it was a... GIRL! I got to smile for about 3.2 seconds and then they told me that she had two soft markers for down syndrome or cystic fibrosis. My heart sank. Please don't misunderstand this.. I would love her no matter what the circumstance. However, I would of course want my child to be healthy if given the option. Her soft markers were echogenic bowel and crooked pinkies, which I have as well ..they are just slighty curved so they said it was probably a family trait. Keep in mind that they never said ONE word about anything being wrong with her heart. Did I say quick history in the title? Thought it would be. I opted for blood work instead of the amnio test for fear of having a miscarriage. Fast forward to two weeks later (by the way, longest two weeks of my life; at this point) I got the call that the blood work was normal. Woohoo! That's the end of my pregnancy scare!! JK! They wanted to have a follow up ultrasound and at that one they told me she had a "duplex collecting system" of her kidney. This turned out to be nothing thankfully but at the time it was just another problem to add to my list and I was pretty much a wreck at that point. Hormones + bad news over & over again = disaster. I also ended up getting a sinus infection right at the end of my pregnancy, that was a splendid time of fun.

 

Little miss trouble maker.

Delivery and NICU:
Me & the hubby decided to go to the movies, it was a Saturday night and we were going to pack our hospital bags the next day (I was due in ten days) so we could be prepared. Olivia said "Nah, I think it will be more fun this way" I started having contractions as soon as the movie ended, I wondered if it was just a stomach ache from all the food I ate that day so I went home and took a shower. (weirdo I know, who does that?!) As I was drying my hair the pain was getting worse and worse. I finally called the doctor and he wasn't sure if it was a stomach ache either until I had a contraction on the phone. He said to meet him a the hospital right away, (during this phone call my husband is running around throwing things into a bag for us) we were not prepared. So on the way to the hospital I was on the phone with my mom (nobody truly thought I was going into labor at this point because we all thought the baby would be late) and all of a sudden a gush. "Okay I know for a FACT that I did NOT just pee everywhere" my husband was so grossed out! ha ha so yeah my water broke and I had no idea that after it breaks.. it keeps on coming out. I mean every few seconds another gush, I could not believe the amount of fluid coming out.. it was like a gallon! That's what it seemed like at least. The first thing I said was "give me the epidural!" after that I was pretty much okay. By the time we got to the hospital I was already 7cm dilated. Another scary thing and probably TMI, the "water" coming out of me was brown. I KNEW it was supposed to be clear from all those Baby Story episodes I watched! That freaked me out but they assured me it was going to be fine. Uhm hello?! My baby is swimming in her own poop, DISGUSTING, get her out!!! (what I was saying in my head) After a few hours of pushing she was here! Another fun quote from the doctor while I was pushing "oh that was a lousy push" gee thanks. So from start to finish my labor lasted 6 hours. Pretty good I think! Then I heard some keywords .."floppy" "lack of oxygen" and I freaked "is she okay?! IS SHE OKAY?!" ugh she had to go to the NICU (I wanted her to sleep in our room so bad but she couldn't) A new all time scariest moment (at that point) After a few hours she was doing much better and her tone started looking normal. She only needed oxygen for one day and after three days of being in the NICU they told us we could go home. Although she wasn't eating much (only about 1oz every three hours) they said it was okay and that her stomach was very small, I thought it was strange but shrugged it off. When they told us she was okay to go home, I must have made a funny face because the doctor asked me what was wrong. I told him I was worried and he suggested having a nurse come to the house in a few days to check on her, I agreed.

 

Olivia Paige - 7lbs, 2oz - 19inches long & a very loud screamer!