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"

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. 

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