Puke and other disturbing things

Yesterday I had to work but my mom was home to watch Livy so she didn't go to daycare, which I'm sure she was happy about. A lot of the kids were sick with a stomach bug so I was hoping that we wouldn't catch it. Olivia seemed to be in good spirits when I got home. I gave her a bath, fed her dinner and put her to bed. At around 9:30pm I heard her fussing in her crib so I yelled upstairs to Paul so he could check on her. I heard him yelling to me about something, I ran upstairs and Olivia had puked everywhere. There was so much, it was all over her sheets, stuffed animals and even in her hair. I got her out of bed and gave her another bath while Paul cleaned up the mess in her crib. I felt really bad for her so I let her come downstairs with me and watch TV while I threw her stuff in the wash. After a little while she seemed to be okay so I put her back to bed, she fell asleep pretty quickly. I was exhausted at that point so as soon as her stuff was done drying, I went to bed. At around 2am, I heard her crying again so I went in to check on her and she was gagging. I picked her up and tried to calm her down but she was really upset. I don't want to gross everyone out so I'll just say, it was coming out of both ends and it was bad. Stomach bugs are the worst, she was just miserable and there was a lot of cleaning up involved. This morning I gave her some toast and water, I am going to hold off on giving her milk until tomorrow. She didn't want to eat much at lunchtime either, she only had a few spoons of soup and half a banana. She's napping right now, I'm hoping that this bug isn't going to last more than 24 hours. I'm also stressed out because I had to miss work today, I really could use the money but Olivia comes first and it will always be that way. It seems like I can't catch a break lately. I got a call from the hospital saying that we owe $3,000 for her overnight stay in January (when she had RSV). I called twice a few months ago to make sure that if the claim was denied, we wouldn't be responsible for the payment and they assured me that we wouldn't be. The claim was resubmitted and approved so now we are responsible for the deductible. The lady I spoke to on the phone today was so rude, she kept saying things like "You didn't think you would have to pay for services rendered?!". At one point I got mad and I told her she needed to stop talking down to me because I didn't appreciate it. Whoever I spoke to before obviously didn't explain things correctly. Anyway, that put me in a bad mood. We already have seven or eight other medical bills for Liv that we are struggling with, it just seems to keep piling on. I told them to add it to my long tab and I'll pay what I can every month, that's the best I can do. It's funny that they only help you out if you make less than $50K per year but they don't take into account all the debt you have from a medically complex child. I broke down and started crying at one point, something I rarely do. Olivia saw me, she got upset and started crying too. I gave her a hug and that calmed us both down, she is such a sweetheart when she wants to be. The cherry on top was this morning when I dropped my phone on the ground and the screen cracked, seriously though, why?! I spent $50 on a stupid OtterBox and obviously it didn't help at all, that really annoys me. I understand it's my fault, I'm clumsy and I drop my phone all the time but that's exactly why I invested in a case that would help prevent my screen from breaking. That was a fail, I'm going to try Gorilla glass this time but I'm not expecting much. I have to pay $170 for a replacement phone, I have insurance but that's the deductible. I know this was just a long post of me ranting but the stress has been building up for a while now. Now I am just keeping my fingers crossed that I don't catch the stomach bug and that Olivia feels better soon.



RSV update

Olivia is doing better, we got to leave the hospital on Friday evening. We didn't know if we would be staying another night so Paul went home to grab some stuff we needed but while he was gone they said we could go home. I had to pack up everything by myself and she was sleeping so I had to wake her up (always a bad decision). Carrying her plus all of our bags was a struggle, I seriously felt like my arms were going to fall off. Olivia got to pick a toy from the toy closet before we left, the nurse showed her a doll and asked her if she wanted it and of course she shook her head no. She ended up getting a little wooden peek-a-boo toy. The doctor wanted me to bring her in on Saturday morning to see how she was doing but she didn't make much improvement overnight. Her breathing is a little better now but she still has an awful cough. Her mood is much better though and her appetite is almost completely back to normal, it seems like she is on the road to recovery. It was a crazy weekend but we are slowly getting back into our routine, which is how I like it.

 She wouldn't touch the hospital food, she only ate snacks while we were there.

Stuck at the hospital again

Olivia was feeling much better and then all of a sudden, she got sick again! Three days ago she started coughing nonstop so I brought her back to the doctor (third time in one month). He said her lungs sounded clear and everything was good, just a long lasting cold. He also told me to call him if she had any fevers or trouble breathing. Of course this morning she started breathing kind of fast and it continued into the evening. She was acting normal and eating okay so I wasn't sure if the fast breathing was just because she was stuffy or something more serious so I called her doctor (again) and he had me count how many breaths she was taking, it was higher than normal. I also took her temperature and it was only 98.6 but he said it would be a good idea to bring her to the ER at least for peace of mind. When we got to the ER, her temperature was 101! I was shocked, obviously we need to invest in a new thermometer. They gave her some Tylenol and sent her for a chest X-Ray which came back normal (luckily). They also took a swab of her nostril to test for certain viruses. She tested positive for RSV (respiratory virus). It's very contagious so we are not allowed to leave our room, the doctors and nurses have to wear masks so they don't spread it from patient to patient. Unfortunately there is nothing they can give her to help her get better any faster, it has to just run its course. Tylenol will help her fever but not the virus. I'm not sure how many days we will be here but we got admitted so they can keep an eye on her (mainly because of her heart defects). The doctors came in to talk to me and explain everything, they checked her (she was not happy about that) and then we settled in. She would not lay down in the hospital crib so she is currently asleep in my arms. I'm sitting on this very hard wooden rocking chair that is causing me a lot of pain but I will always put her comfort before mine so it's okay. I'm so nervous that she is not going to eat breakfast tomorrow morning, she is so darn particular and picky but it's really important that she stays hydrated, especially now. I fed her before we came here but she's only had snacks (she stole and ate my bag of chips, she was saying "nom nom nom" while smirking at me) and sips of water since around 7pm, it's now 2am. I'm 99% sure I'm not getting any sleep tonight. Being here brings back a lot of horrible memories but it's giving me such a weird feeling because it's almost as if we never left. I know it's been almost two years since then but it's sadly so familiar to me. As much as I rather be home right now, I'm so glad I brought her here because I know she is safe.

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.

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.

Impromptu trip to the ER

In the midst of our busy week, Olivia decided to shake things up a bit. We were all hanging out in the living room, Paul and I were both sitting right there on the couch with Liv, she was getting down herself so I thought she was fine (she does it all the time). Somehow she lost her footing and she fell off and hit her head right on the edge of the coffee table (so hard). She was screaming and crying, I was trying to calm her down and then Paul started freaking out and saying "look at her head!" She had a huge bump, bruise and cut. After she relaxed a little bit, Paul wanted to see if she was disoriented so we watched her, she was walking a little wobbly and sideways. I called the doctor and waited for a call back, meanwhile Liv was being super cranky and clingy so when the doctor called me back she said it was a good idea to take her in. I took her to the emergency room, she was acting fine while we were there, she was having fun in the waiting room. She was playing a computer game they had (where was this when I was a kid?!), coloring, throwing the crayons everywhere and running around. They said they didn't see anything concerning and they didn't think a cat scan was necessary so we just stayed for a few hours so they could observe her. She never lost consciousness or threw up which is good because those are signs of a concussion. Just to be safe, I have to wake up every few hours to check on her and make sure she's breathing and that she doesn't throw up. Other than that, she is fine.. just a battle wound. It's been a long night.

Oh and the coffee table has been removed from our living room, those rubber corners were supposed to make it safe but of course she hit her head on the front edge.

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.

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.