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.

More about the tube

This is going to sound a little crazy but the tube was more stress on me than her heart surgery was. Only because the surgery and recovery lasted three weeks but tube feeding went on for months. It doesn't seem like a big deal but there was a lot more to it than most people realize. First off, I felt like it was holding us back. To feed her, we had a pump that connected to the tube which hung from an IV pole (right in my living room and always in the way!) So if we wanted to go somewhere, I had to bring this huge syringe (sort of like the one you use to dispense medicine but much bigger) and manually push her formula through her tube, I had to wait a minute or two before pushing another 2mls through. It took forever!  Not only that but if we were out somewhere and she pulled it out, I had no way of putting it back in by myself so she would have to wait to eat until we got home. For that reason, I didn't go out much. Another issue I had was the fact that they gave us a certain amount to feed her every three hours, so let's say 3oz every three hours .. the problem with that is we had no idea when she was actually full, the only way we knew was if she started throwing up. Throwing up is NOT fun so that was hard for me to see her go through. On the other hand, sometimes 3oz would be fine but how would I know if she was still hungry or not? We had no clue. Plus, I don't think she even understood what hunger was because in her mind she was magically being filled with formula so she never even got a chance to feel hungry. Babies who are not tube fed don't drink the exact same amount of formula every feed, sometimes they drink more, sometimes less but with Olivia we really didn't know how much was the right amount so it took a lot of trial and error. The tube had to be taped to her face (more and more tape the older she got) so that she wouldn't pull it out. If she did pull it out, we had to reinsert it which was a nightmare. I'll get to that in a second. So to say the tape bothered her skin would be an understatement. I tried so many different tapes, lotions and creams to protect her little cheeks but nothing worked. She has very sensitive skin and it would get so bad that her cheeks would crack and bleed sometimes. What sucks about that is.. that meant we had to switch the side that the tape was on very often. It wasn't just re-taping, we actually had to remove the tube and switch which nostril it went in.

These two pictures are her cheeks at their worst. I can't count how many times people asked me if she had rosacea or eczema. When strangers asked, I would just say yes. I was not going to get into the whole long story with someone I didn't even know. At the time I didn't realize how truly bad her cheeks looked but looking back at these pictures, it was pretty bad. Happy to say that her cheeks are clear now and she has no scars from it (which I worried about).

Let me paint the picture of inserting the tube for you.. I got all the supplies needed to change the tube (new tube, tape, scissors, gel etc) and while Paul held her down (she was already screaming at this point because she knew what was coming) I had to put some gel on the tube and slowly feed it through her nose until it got down to her stomach. She would shake her head and scream at the top of her lungs (An adult who had an ng tube inserted described it to me as a very unpleasant experience, your throat burns and it's just uncomfortable, every time you swallow.. you can feel it. Something is up your nose so your natural reaction is to get it out but you can't). I understand why she was screaming but it made it much more difficult for me (she really proved how strong she is). Sometimes she would win and I would have to do it three or four times before it finally went down all the way. By the time we were done, I was sweating. Then I had to use a stethoscope to listen to her stomach while I pushed some air through the tube, if I heard a gush of air, it was in. If I didn't hear it, that meant it was possibly in her lungs. Of course you can't feed formula into someone's lungs. If that happened, a trip to the ER would come next (luckily it never happened). Getting it in the right spot was crucial, I hated knowing that her health rested in my hands because again, I am not a medical professional. So that's pretty much the low down on Liv's tube days.. I can honestly say that I don't miss tube feeding AT ALL. Things have been so much easier since she's been off of it, I know she needed it at the time so I did what I had to do but I am very thankful that those days are behind us. The ng tube gave me a whole new perspective on tough love.

 

Tube or no tube, Olivia is beautiful! This is how I remember the first five months of her life. Her hair cracks me up in these pictures! Whenever we were going to change the tube, I would snap as many pictures as possible so we could have some without it. Although I took tons of pictures with it in, I never really shared them because I didn't want to get tons of questions but now since everyone knows the story, here's my former little tubie.