Ruby was born on June 5th, 2013. 6 pounds and 4 ounces + 19″ of cuteness. My husband (Dillon) and I were so overjoyed to have our baby! The baby we had prayed for and tried to conceive for two years. We were all in love–my other three children thrilled to have her here as well.
Upon her arrival, one of the first questions we asked the doctors was if she had craniosynostosis, like our daughter, Bailey, had when she was born. They checked Ruby out and said she did not have it. We were so relieved. We didn’t want to re-live the surgery that Bailey had as a tiny 2 month old.
When Ruby was 2 days old, we were told that she needed an echocardiogram. The pediatrician in the hospital was hearing a significant heart murmur and it was louder the second day. It is normal for babies to have murmurs when born, but he was worried about how loud it was. We were still in the hospital because I had Ruby via c-section. My mom had brought our kids to the hospital to visit us just after the nurses had taken Ruby to have her echo. They told us it would take about half an hour. When Ruby wasn’t back with us after two hours, I felt that something must be wrong. Not just because of the time it took them to do the echo, but also mother’s intuition. My mom left with our kids during that time, without seeing Ruby. The nurses finally brought Ruby back to us and said the pediatrician would be in to talk to us about the results later that day.
The pediatrician came in that afternoon, almost excited. He had sent the echo results to Primary Children’s Hospital and they told him that Ruby had a rare heart defect (4 in 10,000) called Tetralogy of Fallot and she would require open heart surgery at some point. He had never diagnosed this heart defect before us and he was an older man. He was trying his best to explain it all and nothing made sense– he was no cardiologist and we were no “heart parents”. The entire time he was talking, all I could think of was how my precious baby was perfect. I was so extremely sad for Ruby. So very disappointed that she would be going through something–what that was we just didn’t really know. Even the name Tetralogy of Fallot was unclear and confusing. He explained as best he could–we were just so overwhelmed. I felt so confused–even the name of the heart defect sounded strange. I said to the pediatrician at one point, “Ok, it’s hard to understand everything you are saying, but are you saying she will need surgery?” He said, “Yes, she will have to have surgery.” He tried to explain more, but it was all so overwhelming. I finally asked him, “Can you just tell me…should we be freaking out?” He replied, “I would be freaking out.” And then he left after that, saying the cardiologist wanted to see us as soon as possible the following week.
We were shocked, and I won’t speak for Dillon, but I was pretty devastated. I called my mom and sobbed to her over the phone, and she cried with me. She told me to stay offline so I didn’t read anything too scary. So I did, but just until Dillon left to grab some dinner. It was pretty late at this time, getting dark outside so probably around 9. Ruby was asleep in my arms and I grabbed my laptop and typed in Tetralogy of Fallot. We had asked the pediatrician to spell it for us three times so I knew what to type. What I read still was a mix of terms and phrases that made no sense to me. One of the main things I remember reading was “most people who are born with Tetralogy of Fallot survive into adulthood and lead normal lives.” Which you think would give me hope, but it was the word MOST in that statement that upset me. Rather than clinging to hope, I lost it. Completely lost it. I sobbed and bawled, hugging Ruby tightly to me. Wondering why she had to go through this, worrying that we would lose her. Knowing nothing about Tetralogy of Fallot was terrifying to me. I snuggled Ruby and prayed so hard that we wouldn’t lose her through this. Nurses came in and were worried about my emotional state–they thought all Ruby had was a heart murmur and kept telling me she’d be ok and that lots of babies have heart murmurs that fix themselves. I tried to explain what she had, but it kept making me cry more. I knew from my short search online about Tetralogy of Fallot; it wasn’t “just a hole”. It was at least 4 defects with her heart. Every site I landed on said it had to be corrected with open heart surgery or they would likely die at an early age.
Dillon got back after about an hour and could see that I was not doing well. He took Ruby from me and sat on my hospital bed and rocked her. I was just so worried that we would lose her. Dillon knew just what to say–he comforted me and said it was ok to be sad and that it was scary. And then he told me, “This is how God sent her to us Christie. This is how God wanted her to come to us. And so no matter what happens, it is what God planned for Ruby.” And that’s all it took for me to feel an immediate peace. I knew he was right–he said what I needed to hear. Of course this was what God had planned for us. I just needed to hear it said aloud, I suppose. My sweet husband’s words came back to me again and again through the following months and really strengthened me. I still lost it, I still had moments of breaking down. Since then I’ve come to an even greater realization that God didn’t want her to have the heart defect–of course He would not want her to suffer. But through the trial we were all given, we would learn things that we couldn’t have otherwise–and He allowed for her to come with a broken heart so we could change for the better.
The coming weeks were filled with doctors appointments to Primary Children’s Hospital, echocardiograms, EKG’s, chest x-rays, weekly weight checks and oxygen saturation checks. By the time Ruby was 26 days old, I had taken her to 15 doctors appointments in a 22 day time frame. It was nuts. Especially having four children now, trying to recover from a c-section, and getting the hang of nursing once again. She was so tired from her heart that she didn’t nurse well (and she was a chomper!). She ended up having to have the lights for jaundice. I was scared of having postpartum depression like I did after one of my babies was born. I think because I felt I had a reason to cry, it never got very bad, thank goodness. Though these months were trying and busy, my three older children were so wonderful during it all. SO wonderful.
We were told to expect 3 open heart surgeries based on her first echocardiogram. At least. They said that was the average for Tetralogy of Fallot.
Here’s a diagram just to get a better idea what the heart looks like with TOF.
Tetralogy of Fallot is a series of 4 defects–one affecting another and all related. Ruby had the the four Tetralogy of Fallot defects, with a large hole in the lower chamber of her heart, but also a couple holes in the upper chambers (ASD’s), along with her PDA remaining open (which can actually be good for Tetralogy of Fallot babies).
Those first couple of months we met 4 people in real life who had a family member with Tetralogy of Fallot. Which was exciting initially because we had never heard of it and we were hungry for knowledge and what their experiences were. The problem was, out of those 4 people with family members with this CHD, none of the babies had made it :(. Even though the success rate of the surgery was high, much higher than even 20 years ago, it was still very difficult that we kept meeting people with such tragic stories. Even some that weren’t so tragic often involved multiple surgeries and even a heart transplant for some. It was disheartening.
We finally seemed to get into the routine of things by the time she was 2 months old. We were told not to let her cry hard, and certainly not longer than 5 minutes or she could have a blue spell–meaning she could pass out due to oxygenated blood not being able to get through her body enough. “Mom! Ruby’s crying! She might get the blue spell!”–a phrase we often heard at home from our children. If I was showering or doing something where I couldn’t hold her, and she started to cry, my kids were always there within seconds to try and cheer her up. They were so great. They’d call to each other, “Make sure her lips aren’t turning blue!” If she was to have a Tet Spell, then we were supposed to try and calm her down and push her knees to her chest, forcing the blood to flow to her lungs. If that didn’t work we were instructed to call 911. So as you can probably guess, she received lots of attention and never had to cry for long! If she were to have a blue spell, then surgery would likely happen sooner than hoped for. The goal was to make it to 6 months to have her surgery, for size and weight reasons, but not to go much past 6 months. If they wait too long, her heart could possibly not ever reverse the damage to be a “normal” heart. They used to wait longer a few years ago but found that the heart had a harder time after being stressed for so long, and the damage was greater and didn’t always “fix” itself even after surgery.
Weight is a big factor in the timing for surgery–they want them to weigh as much as possible by surgery. Except heart babies have a difficult time gaining weight because they tire easily while eating and their heart is working extra hard which burns more calories. Ruby’s heart beat was also very fast and her breathing as well. She would breath about 10 breaths per minute faster than normal babies. Which means over the course of 24 hours she would take over 14,000 times more breaths than a healthy baby.
Ruby was doing well, apart from her weight gain. She was rarely on the charts for weight and height–she was so small. Every ounce was a celebration :). I think the most she gained in a week was 8 oz, which was loads better than the majority of weight gain per week. Some weeks she lost weight, which was a concern of course, but we always managed to get her an ounce or two the following. We did have to supplement for a couple months, by using a supplemental nursing system to help pack in extra calories. I was determined to nurse her as I felt like the extra antibodies she was receiving were so important so she would not get sick. I know not everyone can do this and I know it was a huge blessing to have it work out. She wore newborn clothes until she was 3 months and then only moved up to the next size for length reasons. She was happy, and her oxygen saturation was always in the 90’s, which was so great for a heart baby.
I knew it could be so much worse–she could have had blue spells, she could have had her oxygen sats dive down and needed surgery sooner, she could have needed oxygen or a feeding tube, she could have been born blue and life-flighted to PCH…so many things that could have gone wrong and they didn’t. When you are in the heart world your eyes are opened to so many what-ifs.
We had a wonderful support group. Amazing family and friends constantly concerned with her well-being. I was amazed at how much peace we felt and we actually had a relatively normal first 6 months with her. What enormous blessings all of these things were.
She had an echo scheduled for early November, but because she had a cold it was postponed. They wouldn’t even think about sedating her with the sniffles. Since we weren’t sure when the surgery would be and we needed to keep her healthy for the surgery, we were on a light lock-down in October (took her to heart group events and covered up at the grocery store), and then a strict lock-down from the beginning of November on and would be until about 6 weeks after her surgery. It was hard at times, but honestly I enjoyed the simpleness this brought to our lives and selfishly enjoyed her at home. Visitors were limited as well. The only thing I took her out for ever was her doctor appointments each week. Other than that she stayed home. I spent Thanksgiving at home with just her while the rest of my kids and husband went to dinner at Grandma’s. We had to be very strict with our other kids and washing hands/changing clothes before holding her, which they were awesome about. We all were told to get the flu shot rather than the mist, since the mist contains the live virus and she could get very sick if she caught the flu. If you know my kids, getting a shot over the mist was a big deal but they did it for her without too much complaining ;). I had a friend who also had her kids get the shot over the mist since we carpooled together. That sacrifice her children made for Ruby meant a lot to me. Ruby was approved for the RSV (synagis) shot as well (after being denied initially, which infuriated the nurse and doctors) and got those shots monthly, though they were heartbreaking because they are a painful shot–she passed out the first two times she got one. RSV can be really, really hard on heart babies and I’m so thankful she was approved for them. Our insurance was good at the time, thank heavens, because those shots cost over $1800 each!
The older she got, the more signs of heart failure she had. Sweating profusely while she ate, being extra tired, breathing rapidly and with more effort, and not gaining well. By this point we could perfectly hear her heart murmur just by putting an ear on her chest. It sounded just like a washing machine, swishing around in there. Really really loud. My kids thought that was super cool to be able to hear that. :)
We had a sedated echo November 21st and they said the pressures in Ruby’s heart were really high. In her right ventricle they were in the 80’s (it should be zero. 80 is labeled as severe). But they also said that her pulmonary valve was looking really good–better than the previous two echocardiograms. They wouldn’t know for sure until they were performing the surgery, but there was a chance that she would only need one open heart surgery. What hopeful news that was! We told everyone praying for her and fasting for her to please be specific about needing only one open heart surgery. I was so happy that one surgery was even a possibility!
We were called a couple weeks later and were told her surgery would be Tuesday, December 17th, with Dr. Eckhauser. They told us to plan on a week in the hospital. That would take us home on Dec. 23rd. It could be a shorter stay; it could be a longer stay. We prayed we would get to spend Christmas together as a family. My five year old was especially worried we wouldn’t be home in time for Christmas.
Many people around the world started to include Ruby in their prayers. People were praying for the doctors and the surgeons and for Ruby to do well and need only one surgery. My heart was, and is, so full of gratitude towards everyone involved with Ruby’s story. How can you help but love the people who are praying for your baby? People who you’ve never met–people who have no idea who you are, really, people who are willing to sacrifice for her and fast for her. Amazing. Two church congregations fasted for Ruby as her surgery approached. Our families and many friends fasted that day as well. What a special, humbling day that was.
I made sure to get pictures before her surgery. I know it sounds awful, but it was so important to have these taken in case anything happened to her.
Ruby’s surgery was approaching and we tried to be as prepared as possible. People continued to pray for us and even as life got insanely busy and more trials and tests came our way, we were blessed with continued peace. We had cars break down. I had to have an unexpected surgery the week before her surgery that was much more difficult than I expected it to be. Life was just hard. It felt like so many things were going wrong, but we saw so many blessings during that time. Again, we felt peace. That’s not to say that there were not moments when I was absolutely terrified that the outcome of Ruby’s surgery would be devastating. Those thoughts were definitely there and would feel so suffocating at times. But they would pass and peace would return. We were enveloped with a blanket of comfort. It was so real. We felt so much love from everyone. The Sunday before her surgery was emotional. That night we received an anonymous gift for Ruby–a beautiful blanket from our church left on our porch. It was so very sweet and lifted my spirits when I was feeling down that night.
Monday, the day before surgery, was just crazy with pre-op work at Primary Children’s Hospital taking most of the day, and trying to pack and get our other 3 kids ready to be with Grandparents all week. It wasn’t at all how I imagined and I wish I had just let some things go and focus on my kids more that day. It ended well though, and again, with some portion of peace for which I was thankful. I gave Ruby her bath as directed and kept praying it wasn’t the last bath I’d be giving her. I took pictures of her, making sure to capture her scar-less chest for the last time. I used the special wipes they gave me and swabbed her nose with the medicated ointment. I set my alarm to feed her one last time at 4:30 (the latest she could eat). I prayed my heart out that it wasn’t the last time I’d nurse my sweet baby.
We woke Ruby up early the next morning, wiped her down once again with the wipes and swabbed her nose again. The morning was crazy but thankfully my Mom was there to take care of my older kids, and could hold Ruby since all she wanted was to eat and go back to sleep. Ruby was pretty fussy that morning from being tired and hungry, but it was kind of nice because it woke up the older kids and they got a chance to say goodbye to her again and we all got to hug and kiss them goodbye. We drove to Primary Children’s Hospital Tuesday morning through thick fog, while Ruby fussed occasionally from the back seat. We arrived at 6:45 (supposed to be 6:30 but the fog and running a little behind that morning slowed us down). We sat in the waiting room nervously for just a short five minutes before we were called back to a room to change her into a hospital gown and get her ready. We went into the pre-surgery waiting room, waiting to meet the surgeon for the first time. The anesthesiologist came and spoke with us for a bit. Then Dr. Eckhauser came in and I instantly liked him–I loved how well he explained things and how down to earth he seemed. He told us all the risks, especially with the bypass machine and blood loss, and what all he was going to be doing during the surgery. He explained that he would patch the VSD with a plastic material that is also breathable and kind of like fabric in texture (like Gore-Tex), close her PDA, partially patch one of the the ASD’s that was larger, and shave off some of the right side of her heart as it was pretty thick from the extra work her heart had to do. He said to plan on about 4 hours of actual surgery time.
The anesthesiologist came back and walked us through the doors into the hallway where we would kiss her, hug her, hand her over and say goodbye. He told us something about her smelling something yummy before they started to prick and poke her. He walked through the doors with her while she looked back at us. It was about 7:35 am. We turned to walk down that hall once again–and I leaned on Dillon and started to cry. You bet we felt peace, but oh my goodness that moment is so so hard. Knowing what your baby is about to go through and wake up to is just plain hard. Even just imagining her before being put out–looking around the room and not recognizing anyone at all, looking for mom or dad and not seeing us–breaks my heart. Walking back down the hall to the waiting room is a long walk. And actually brought back a flood of memories from Bailey’s craniosynostosis surgery.
I’d made my kids shirts to show their awesome support of Ruby, so they wore them the day of her surgery:
We walked down the hall holding hands and Dillon gave me a hug. We went into the waiting room and checked in at the desk. I was still sad and crying a little and got some kind words from the lady at the desk. She deals with this stuff all the time and knew just what to say and was really sweet. We found a quiet corner and Dillon went to grab our bags with our treats and “entertainment”. I texted my mom. And then prayed. And prayed. And prayed. Dillon was trying to distract himself, which I totally get—and I know he was praying too. Mostly I just wanted to pray and talk about her and her surgery. I kept praying that angels would be guiding the hands of the surgeon and nothing would go wrong. I am positive lots of people were praying for that same thing.
At 8:30 am the nurse in the operating room called for us and we walked up to the desk to take the call. She said, “Is this Ruby’s mom?” I said yes. She said, “Ruby is asleep and doing well. They just made the incision. I will call again and update you when she gets put on bypass.” Tears and prayers.
It was probably about this time that I checked my email for distraction and noticed a couple people sending me money through paypal. It would have a message attached that said, “Love for Ruby”, or “good luck today” or “prayers for Ruby”–you get the point. I thought that was just so sweet. My email also notified me that I had some tags on facebook and so I looked those up and saw some pictures of hearts with the same thing–but this time with the hashtag so it said #loveforruby. So then I checked instagram and noticed the same hashtag.
I was totally overwhelmed by the love that was pouring in. WE were both overwhelmed by it. People are so good. Sabra and Susan--I will forever be brought to tears thinking of what they started. Not only was the Love For Ruby going on, but my friend Cheri wrote up a beautiful post that still brings tears to my eyes as well. She made a printable for sale and donated all the money made to us. All of this really helped me throughout the day, seeing the hearts people posted and the kind and encouraging words.
At about 9:40 am we were called up to the desk with another call from the nurse. Ruby was now on bypass and was stable. Bypass is an amazing thing. I am in awe at the things they can do. That being said, when you know that your baby’s heart is not beating, it is difficult. And sad. And set the tears off again. I just wanted to sit and think about Ruby. I didn’t feel like doing anything but thinking about her and praying for her. I can’t explain it any other way other than I felt personally like I just needed to be thinking and praying for her, to respect what she was going through and pray my heart out. I felt a huge pull to put away everything and think about her and what was happening right then–her heart was stopped and I didn’t want to glaze over this fact in any way. I was going to face it because she was facing it.
She was on bypass for a long time. They are not ever sure how long it will be but when the nurse in the operating room called with the update at 9:40 am, she said she would call again in an hour and a half to tell us when she was off. So we were thinking we’d get a call around 11:00. But we didn’t get a call until 11:34. She was finally off bypass and was doing well. (The nurse later in the CICU looked in the notes and said she was on bypass for over 2 hours. That is so crazy to me to think her little heart was not beating for that long!) They said it would be another 1 ½ hours until they were all finished up and Dr. Eckhauser would come and talk with us. In order for the surgery to be for sure complete, they needed to make sure that the pressures in her heart were ok. If the pressures get high, it can pop the stitches that hold the patch in place, which of course would mean another surgery.
12:30 pm. Dr. Eckhauser came in to talk to us. He told us that everything went well. He said he started to patch the VSD (hole between lower ventricles) and started sewing around the rim of the hole…but once he got doing that they discovered that there was a bigger hole behind that one. He said the hole was much bigger than they had anticipated or thought. He had to un-sew the work he had done on the first rim and then start over to patch the larger hole behind that one. That is why she was on bypass for so long. Because the hole was so large he had to sew into the tricuspid valve. So that valve was leaking but he felt confident that with the inflammation of the heart from surgery and scar tissue, that it would fix the leaking. He said she had significant thickening of the right ventricle on the outer wall. So not only did they have to shave off and remove some of the heart from the outside, but he had to cut into the heart and take some off from the inside of the ventricle as well. So he patched the large VSD, patched the hole he created to take off the thickening from the inside, patched a couple smaller holes she had, partially patched the ASD (hole in upper chamber that she had, but they actually leave it partially open to let the pressures adjust), tied off the PDA (patent ductus arteriosus—this is actually a good thing with heart defects to allow adequate blood flow throughout the body but can be a problem on it’s own—so since the other things were being fixed they didn’t need the PDA there. A lot of babies have an open PDA but they typically close on their own shortly after birth). And the best news of all? He didn’t have to do any work on the pulmonary valve—the main reason why she would have to have subsequent open heart surgeries! He said we won’t know for sure if she is in the clear for a few months, but that he was hopeful this would be her only open heart surgery. That was just the best news. He told us she wasn’t ready to be extubated yet so she still had a tube down her throat (intubated). I remember Dr. Jou telling us if she was extubated after surgery then everything went as well as it possibly could but if she was intubated then that meant they were still struggling a bit. Dr. Eckhauser told us we would get to see her in about half an hour .
At 1:20 we still had not been called back to see her. Dillon’s mom was there with us in the waiting room at this point, so we had a bit of distraction talking with her. I’d go out in the hall to make a phone call and update people here and there, with what we knew. I was getting majorly anxious to see Ruby! I was having a hard time focusing on any conversation and couldn’t wait to be called up to the desk letting us know we could go see her. Each time I had to go pump I’d call Dillon as soon as I was out of the room to see if I missed anything.
It wasn’t too much longer however, and a few minutes after I had texted my mom at 1:20, the lady at the front desk came and found us and said Ruby would be ready for us to go see her in the CICU in 20 minutes. Those minutes couldn’t go fast enough! As soon as it was time–to the minute and probably a bit earlier ;), I jumped up and we grabbed our stuff and Sheila came back with Dillon and I to the Cardiac Intensive Care Unit. Ruby was in room 24 or 25. I think. I wish I could remember that for sure. Not that it matters to anyone else but if I ever went back to the CICU I would know instantly which one it was. And for some reason it matters to me to remember even these little details.
We walked to the room. Anxious. Nervous. So glad she was done with surgery but knowing she had a rough few days ahead of her. We walked into her room and the sight was familiar–it felt like we were walking in to see Bailey again with a million monitors around her, and many wires/tubes/lines coming to and from her, keeping our baby alive. She was sedated and intubated. And it is just a sad sight to take in, but so amazing that they know so much how to keep your baby alive. Dillon and I looked at each other and made sad faces. Bypass can make them become poofy and swollen, but also the nurse said it’s just the body’s way of handling so much trauma. I’ve debated back and forth on sharing the recovery pictures so publicly. They are so very sacred to me. But to get the full effect, I decided to go ahead and post a couple.
Caretaker mode kicks in fast and I began asking lots of questions about what each wire did and how she was, etc. etc. I am a knowledge thirsty person when it comes to my kids. I want to know everything.
She was on as much pain medicine as she could be. I should have taken a picture of the full room–with all the monitors and machines and her. We got some of just her but not of the “big picture”. Honestly she was so restless that it was hard to feel like we could stop and take “just for documentation” pictures. As it is, the pictures we have of the first day I felt we were risking disturbing her because she wasn’t resting well at all. I thought a couple times that I would take more pictures but it didn’t feel right…that’s the only way I can explain it.
Unfortunately, Ruby was in a lot of pain and she was not sleeping soundly, despite the sedation and as much pain medicine as they could give her. Her pressures were really high, her heart rate was really high, and she was restless.
I swear your adrenaline kicks in because otherwise you wouldn’t be able to cope. I felt like I was on autopilot the first day. And I’d be going and going and making calls, asking questions, trying to calm Ruby, going to pump, etc. etc. It was exhausting but being busy keeps your mind busy, too. Then I’d go to the cafeteria to eat lunch or dinner, or to the pumping room, and I’d lose it as soon as I sat down and thought for longer than 30 seconds alone. But I’d have my little break-downs and get back to it. Because Ruby needed me! I felt an enormous amount of support and love, however. I truly know that the prayers of so many were heard and we were encircled in the arms of the Savior and Heavenly Father. They were helping us. They were there. It was so real.
We had debated back and forth all day about getting a hotel room downtown or just staying at the hospital. We had been told numerous times that they are so drugged and sedated, they don’t know whether you are there or not and they just sleep that first day and night. Most people recommended that we go home to sleep that night because she’d be asleep the whole time anyway. Going home for us was never really considered because it’s 45 minutes away and what if something happened? But in the end, with her thrashing around and crying out nearly constantly, neither of us were going to leave. The nurse requested a room for us and we hoped it would work out.
The first nurse (I believe Jean was her name) was so concerned about Ruby the whole day. She kept calling people in, asking their opinion to help Ruby. I asked her if the constant thrashing and moaning meant she was in pain and she said that yes, it meant she was in pain, and her blood pressure and heart rate were really high which indicated pain as well. She said sometime during that day, “This is just so frustrating. My job is to make her as comfortable as possible and it’s just so frustrating when you can’t accomplish that.”
They extubated her at 3:30 pm. Which was nice because she kept gagging with that thing down her throat. She had a hard time breathing afterwards, and her blood pressure was still high. Thankfully they didn’t have to put the breathing tube back in, but she was gasping for breath sometimes and just could not be comfortable. They gave her more morphine to help with her pain and tried to figure out what else they could do to help her. She was startling so easily and crying, and holding her breath. The nurse said it hurt to breath (in her throat and her chest) and thought she was just trying not to, because it hurt. So she’d not breath…and then she’d gasp and choke and cough and it went on like this for a long time. It was so sad. She was just miserable.
She was having such a hard time breathing that one of the respiratory therapists came in and I thought he was going to just use the little suction tube to nicely clean her out…nope—he took that tube and stuck it clear down her nostrils down her throat, and did the same in her mouth. But he got a ton of gunk out so it helped her. She just gagged and cried when he did it. She also cried and moaned every time they stripped her chest tube. Which is often. They did an epinephrine treatment to help with her breathing as well. She was still moaning, even in her sleep. And the nurse said she was in pain :(. They gave her lasix sooner than they were going to along with anxiety meds to help her be more comfortable. Her blood pressure had been high all day and did go down a little at this point, which they were happy about.
Dr. Jou (our cardiologist) came in while my mom and step-dad were there to see Ruby. My step-dad chatted with him a bit and asked Dr. Jou where Ruby’s case fell on the range of heart defects, and he said in the middle. And this I do know from being in the heart world. There are some very scary and intense heart defects. Dr. Jou said he was worried about her high pressures she’d been having because it can pop the stitches around the patch. We also talked about the genetic testing for DiGeorge (22q11.2 deletion syndrome) and Dr. Jou said we’ll know in April about that and other genetic testing done at surgery time.
Starting in the evening she began to itch. A lot. She was just sad, itchy, uncomfortable, and miserable. Poor baby girl. :( .
At 8:30 pm we were told we got a room. The rooms have just a twin bed in there. Dillon said we could squish, but I wanted one of us to be with Ruby the whole night. So he took the first sleeping shift and left to sleep at 10:00 pm. There was a chair in the room and I asked the nurse if we were allowed to stay overnight in Ruby’s room and she said “absolutely” and got me some sheets and pillows. Here’s what I put in my phone notes at this time: “Going to sleep on the pull out bed by Ruby. She is just moaning in her sleep nonstop. Poor Ruby. Thank heavens for morphine. I hope she is more comfortable tomorrow. Too much pain for such a little sweetie. I love her to pieces. And can finally step out of touch strong momma and have a cry before going to bed. So thankful for the outpouring of love for our family!!!”
I didn’t actually sleep then because Ruby was so sad. I know you can’t tell from the pictures, but she was awake a lot—not that her eyes were open the whole time, because she was on a lot of pain medicine and sedation, but she wasn’t sleeping restfully either. If her eyes were awake and while she was restless, I was just there beside her patting her, singing to her and kissing her.
On my phone notes I wrote at 2:30 am: “Hard, hard night until now. So so itchy and awake crying constantly, moaning. Ate 5 oz of pedialyte and just so sad. She made the saddest pouty face when she opened her eyes and saw me. It was such a sad look. I’m hoping she does much better after taking Benadryl and having her soft blankie which actually does seem to be helping.” I’m sure the blanket reminded her of home—we tried to use this certain one the most as we knew we’d be taking it to the hospital.
I traded with Dillon after this time as I could barely keep my eyes awake even while standing and tried to sleep for about 4 hours. While I was sleeping, our first nurse, Jean, called at about 3 am to ask the nurse on shift (Laura–we LOVED her) if Ruby was doing any better–she had woken up in the night and couldn’t sleep because she was so concerned and worried about Ruby. What a sweet, sweet lady. I just love nurses. And doctors. And all the other brilliant and kind people at the hospital.
I came back around 6:30 am and Dillon was by her side and said she had a miserable night… she only slept an hour and was so sad the rest of the time.
The second day was just as hard, if not even worse. They kept trying to get on top of her pain and itching but she had little relief. She didn’t sleep peacefully hardly at all. Sometime during that second day, they took out the Right Atrium line, an IV that went directly into her heart. But it bled. And bled and bled. It wasn’t supposed to. It bled for at least a couple hours. I didn’t realize anything was wrong until I noticed the looks nurses and doctors were exchanging, and when more and more people started to gather in her room and check the chest tube drainage and talk about what needed to be done. My brother-in-law Greg happened to show up just at this time. Next thing we knew, there were probably 7-8 people in the room looking at notes and Ruby and the tube coming from her chest. Dillon was outside the room talking to Greg. The nurse practitioner turned to me and said, “The RA line tore her heart and it’s bleeding and she’s losing too much blood. The bleeding is not stopping so we will have to go back in and repair the tear.” I went out to tell Dillon, in tears. He was in tears too now, and came back in the room with me while Greg waited outside the room. The surgeon was called down and more people came into her room. They looked at the drainage and the amount she’d lost and Dr. Eckhauser looked at me and said, “If this bleeding doesn’t stop in the next 20-30 minutes, we’re taking her back.” I tried not to look too scared, but I think I failed because he tried to calm my fears and said, “It’s ok…it sounds worse than it is. I just have to unstitch her, open her back up, take the wires out of her sternum and patch the tear.” Sorry, but that didn’t comfort me at all :). She had already gone through so much and starting from the beginning sounded awful as she’d struggled so much already. I was so worried for her poor little body and the setback this would be to her. I turned to Dillon and whispered, “Pray hard!” We were so scared. The bustle of people continued and we knew she needed a blessing (we are LDS, you can see what I mean by a blessing HERE). So Dillon grabbed Greg, who happened to have oil with him, and they gave her a blessing. The nurse checked her chest tube drainage and there was a difference already–literally within 5 minutes of her blessing. The surgeon came back and saw that the bleeding was slowing down. He said that she was probably not going to need another surgery. The bleeding continued to slow and they said she would not need one. You can bet there were many prayers of thanks said!! It was yet another miracle in Ruby’s story.
Ruby continued to struggle, but she was improving. She had a hard time keeping her oral meds down and would throw up everything she ate after feeding her. She received a blood transfusion after the blood lost from the RA line. That seemed to help her a bit as well. The second day was largely spent in trying to make her comfortable. She needed the morphine but it made her so itchy. So they’d try and stop that, giving her benadryl to help with the itching and get that under control. But then she’d be in so much pain again that they needed to give her stronger pain medicine and would resort to the morphine again. I went to bed that night just so so thankful that she didn’t have to have that second surgery.
Thankfully she slept much better that night, and I also got to hold her. Two days is not a long time by any stretch of the imagination, especially compared to the amount of time so many can’t hold their precious babies. Still, it was heaven holding her again.
The third day was spent again trying to keep her comfortable. She was doing better than the first two days, so we went up to the recovery floor at 7 pm the (3rd) day. She even smiled at the end of the 3rd day. In fact the nurse who had watched her for two days during the day told Ruby it was rude that she smiled at the nurses on the floor and never at her ;). She still had trouble with vomiting but she was happier.
Days 3 and 4 were filled with x-rays, another sedated echocardiogram, and just staying on top of pain meds. Removing more wires and tubes and just getting better.
We came home on day 5, early afternoon. Absolutely amazing! My mom and my kids decorated the house for our homecoming :). Ruby came home on enalapril and some pain medicines, along with lasix. At first her left ventricle function was not what it should be, and they couldn’t figure out why. Ruby was extremely sweaty and fussy while eating–more than before her surgery, so we had to take her in again a couple of days after being home. They checked her out and said she looked ok, she wasn’t gaining well but that they thought she was fine. And boy, did she HATE being back in the hospital again. As soon as someone would walk in the door she was all tears.
She threw up a few times at home–it was anytime she took her pain medicines so they think she had an overactive gag reflex. It was a little difficult because then we didn’t know how much medicine she was getting and then of course she was vomiting what she just ate. She had a few fussy days at home where she was just plain sad, but who could blame her right? She would not sleep alone–naps or night time for about a month after surgery. She wanted to be held constantly and I was happy to oblige :). I was just so happy that she was still there so that I could hold her. Thankfully at her follow-up appointment 3 weeks later, the function was better and she was taken off her medicine. We were seen again in the summer and then once more this past October. We go again the beginning of May. We are hoping she will move to the yearly plan this next time :).
I think everyone who goes through something like this has a different outlook on life. Being in the heart world has opened my eyes to so much heartache, as well as so many miracles. I have been connected forever to other heart families–especially heart moms. We are a heart family, and it is a close-knit community. And we’ve all had the privilege of knowing what it means to be a mother or father or sibling to a Heart Warrior.
The months following Ruby’s surgery were filled with more doctor’s appointments, much hope and thankfulness, and I think a little PTSD, to be honest. It was hard to go from being so focused and involved with the runaround of her heart stuff and then have it all stop so suddenly. You can read a little about my struggles HERE (it was 2 months past her open heart surgery). I get teary eyed just thinking of the amazing troopers my older three children were during this all. They absolutely adore the girl and would do anything for her. I know far too many parents with empty arms and broken hearts. My heart aches for them.
For now, here is what we are dealing with. Ruby has smaller pulmonary arteries going to her lungs that may cause problems down the road. There are other heart issues that may arise as she gets older, which is why she will have echocardiograms every couple of years and yearly cardiology check-ups. They purposely left open her ASD in the upper chamber to be like a release hole for pressure build-up in her heart, and hopefully that ASD will not cause any problems for her. Hopefully the tricuspid valve he had to sew into will not have future problems. We are not 100% positive this will be her only surgery, but they are hopeful that if anything further is needed for her down the road, that it will be caught at her appointments and will be able to be helped by medicines or cath procedures and not another open heart surgery. She will have to work closely with a cardiologist throughout her life and especially if she decides to have children someday. The list of possible things that can happen down the road is somewhat daunting. It’s hard to feel like you are playing a waiting game. In fact I was recently a little heartbroken hearing many, many stories of people who were told their child would only have one open heart surgery with their Tetralogy of Fallot, only to have problems crop up months, or even years down the road and need another open heart surgery. But for now we are just enjoying the wonderful life she is living and how energetic and fun she is. She brings such joy to our lives! I have to really work hard to remember to live in the present and not worry so much. That can be hard to do sometimes–especially when I am no longer naive to the heart world.
We are so very thankful for the countless prayers said. The outpouring of love for Ruby and my family is one of the most touching things I have ever been a part of in my life. In fact, this blog was born out of the goodness of other people, which you can read about HERE. People are so good.
We are so thankful for the amazing doctors and nurses who cared for Ruby, and for living where we do, so close to one of the best children’s hospitals in the nation!
I can go on and on about miracles and tender mercies during this time–so many of them not included in here (if you can even believe it after this long post!). It is really amazing how good God is – how much He loves us, and how much His hand is in all things.
Ruby turned one this past June and is now 19 months old as I write this post. She had her 1 year surgery anniversary December 2014. My how time flies :).
Thank you for reading about our sweet Ruby Jane!