I set my alarm to feed Ruby once more at 4:30 am. It was hard to not be sad. I prayed really hard that this wouldn’t be my last time nursing her. Do you see a recurring thought here? :) “This could be the last time this happens…” You can bet my prayers were very pleading and I held her super tight. The previous 6 months were filled with moments like these. Especially the quiet moments feeding her or rocking her to sleep–just tears, prayers, and holding her tightly pleading with Heavenly Father that she would be ok and I would get to raise her here on Earth. However, those thoughts were calmed often and never lasted for long periods of time. Peace has been my companion these last few months, and I’m so thankful for that. We woke up and rushed around trying to finish packing and getting Ruby ready. My mom showed up at 5:30 am so we could get to the hospital by 6:30. I needed to swab Ruby’s nose again and wash her down with the special wipes once more in the morning and she was pretty loud with her protests, but that made the boys wake up so they got to say goodbye once more. I was glad my mom was there to help with Ruby so she wasn’t crying while we got ready. We hugged the kids and my mom goodbye and on the drive there I said a prayer for us all. I was feeling pretty nervous and scared for Ruby and was fighting back tears the whole way there, yet we were also being blessed with peace, once again. She was a little sad on the drive as she was hungry and woken up early. But she fell asleep. It was really foggy driving there, so between the fog, rushing and running a little behind, we were about 15 minutes late and arrived at 6:45 am. Dillon dropped Ruby and I off and went to park and then we all headed upstairs to surgery and checked in. The waiting room was packed full of people with their children waiting to have surgery, but Ruby being so young and having a long surgery ahead had priority. So even though we were the last ones in there they called us back after only 5 minutes or so. All these sweet little kids in there made me wonder what they were having surgery for. They took us back and had us change her into a little gown. She did pretty well with everything. We took a couple pictures–she was super interested in the nurses and doctors and kind of just fussing every now and then and wanting to nurse. They took us across the hall into another waiting room area, which is the same waiting room we waited in for Bailey’s head surgery. They sat us in the far left hand corner close to the desk with all the nurses. A TV was on with the news and we waited there for probably 15 minutes in the rocking chairs they had there. Ruby wanted nothing to do with us sitting down so we took turns holding her and rocking her. A girl came back and asked if they could include Ruby in a study where they only had to swab her nose while she was out and test for other viruses or illnesses. Since it wasn’t a big deal we figured it was fine. So that helped pass the time a little bit. I saw the surgeon who did surgery on Bailey’s head when she was 2 months old. That, and just being in the same room, brought back a lot of memories! Some of the parents in there were totally ok, and some were having a hard time fighting back tears. I can’t remember the anesthesiologists name, but he came back and talked with us first about everything he would be giving her. He left and we waited a bit longer and then her surgeon, Dr. Eckhauser came and talked with us about everything he was going to do and the risks of it all. He explained that he would patch the VSD with a plastic material that is also breathable and kind of like fabric in texture, close her PDA, partially patch the ASD, and shave off some of the right side of her heart as it was pretty thick. He said to plan on about 4 hours of surgery time. Dr. Jou had quoted us a much shorter time. But we figured it would be longer than what Dr. Jou told us because of what we’d heard and read. Dr. Eckhauser was really great–super informative and down-to-earth. I instantly liked him and felt like he wanted the best for her and that she was in good hands. It was a little hard to talk about the risks of her being on bypass and the risk of her having a stroke or things like that. You know, the 5% that don’t make it. Dillon probably won’t love me writing this, but since we hadn’t had breakfast and he had an empty stomach he was a little off anyways, but when Dr. Eckhauser was talking about the risk of stroke while she was on bypass, Dillon said he felt a little light-headed and took a step back. Well, that made him trip on the chair behind him and he went down on his bum, eyes kind of rolling back into his head and everything. It was crazy. I was glad I was the one holding Ruby! So a nurse rushed over and he tried to stand and said something about tripping and the doctor was like, “No, you better sit down, I saw your eyes roll in the back of your head.” to which I agreed. :) So he sat down. He probably would have been totally fine had he eaten breakfast. But he said since the doctor was pretty detailed in his descriptions and next thing he knew he was getting light-headed. After the surgeon left, the anesthesiologist called us back and walked us out the room, down the hall, and to the doors where we would part ways. Bailey was so small she could care less what was happening, really–she was hungry and tired but she didn’t really care who was holding her. It was hard, you bet. But a little different because Bailey was younger. Handing Ruby over to this man she didn’t know was also very hard. Because she looked at us like, “What are you doing handing me to him?” and started to fuss a little. We kissed her and hugged her and handed her over, said goodbye and 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. 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 with him. 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 again. We walked back to the corner and I texted my mom and told her to give my kids a hug and she texted back that they were going to say a prayer right then. She texted me a little later with my kids in their heart shirts I had made them for the day. 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. 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. This was a good thing to keep me busy for a bit–seeing the wonderful kindness coming from my friends that had set it up (Thank you Sabra and Susan!) I was totally overwhelmed by the love that seemed to be pouring in. WE were both overwhelmed by it. People are so good. It really did help me throughout the day, seeing the hearts people posted and the kind words. Dillon really thought it was awesome too. Totally awesome. I plan on making a tiny little book that has the hearts everyone posted–one for me to keep forever and one for Ruby. I commented to Dillon how I know people were cheering us on and praying so much for Bailey, but social media has come a really long way in such a short time. Ruby is lucky that we were able to see so much love through that social media. But I don’t want Bailey to feel like she didn’t get the same–it was just different. Still so very touching and amazing how blessed we were to have an overwhelming amount of love and goodness shown our way with Bailey. 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. Dillon went back into distraction mode and was trying to help me be distracted and he apologized at one point and I told him it was ok. If he wanted to distract himself that was great, but I wanted to just think about Ruby. 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. Not that I fault at all what Dillon was choosing to do—everyone has different ways of coping. I just 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. I remember the same thing happening during Bailey’s surgery. 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. 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. 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! 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, 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 a PDA but they close 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 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 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. He left and 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. She 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. We walked to the room. Anxious. Nervous. So glad she was done with surgery but knowing she had a rough road 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 at each other. 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. These pictures were not shared on instagram or facebook–yes I know people will likely come here from FB, but these pictures I do not share lightly. They are so very sacred to me. Here is the first picture we took of her—Dillon took it while I was holding her hand (I have the pink wrist-band on and the nurse is on the other side). 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. 2:20 pm3:30 pm:The Main Arterial Line: measures blood pressure the most accurately Pacing Wires: Atrial and/or ventricular pacing wires are to make sure the rhythm of the heart is ok, and if needed they can provide electrical stimulation to fix abnormal rhythms RA Line: and IV going directly into the heart (RA stands for Right Atrium) giving the heart medicine Chest Tube: drains all the fluid that builds up around the heart. Hooks up to a machine and acts as a vacuum. It goes in below the heart and wraps around the heart. Has little holes in it to suction the fluid out. Catheter: obvious :) Breathing Tube: again, obvious—goes clear down her throat Blood through Left Foot: she was originally getting her own blood back IV in Right Foot: just to give her all the medicine 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 because” 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 to take more pictures but it didn’t feel right…that’s the only way I can explain it. Sheila stayed for just a short time afterwards and left to get the kids from my mom. It was nice that she could be with us for a bit. I know I keep comparing things with Bailey’s surgery, but it was all we had that came close to what we were going through. With Bailey, they had a hard time getting on top of her pain medicine and it was so super sad. I was worried the same would be true with Ruby. And 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. I don’t know what it is about my kids and sedation, but even Devon woke up much sooner than anticipated with his three surgeries he’s had (appendix, tonsils, and arm surgery). Bailey was not in a restful state after her surgery and Ruby was most definitely not restful after this surgery. Which I guess we should have known was a possibility because she woke up earlier than anticipated with her sedated echo as well in November. But I was sure hoping. 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. And then I’d go to eat lunch or dinner in the cafeteria or to the pumping room, and I’d lose it then. 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. 7:00 pm:That evening my mom and Karl came to see us. It was good to have a visit from them. Dr. Jou came in while they were visiting and Karl chatted with him a bit. He asked him where Ruby’s case fell on the range of heart defects, and he said in the middle. And this I do know from being on the Facebook Heart Group (Intermountain Healing Hearts). There are some pretty 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. He said they can have DiGeorge without looking like it. So I guess we’ll see. Mom and Karl left and we took turns eating dinner. 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 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 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!!!” 11:00 pm: 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. (and if she was awake I was trying to comfort her, not take pictures) Midnight: 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 one the most as we knew we’d be taking it to the hospital. 2:30 am: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 people at the hospital. I came back 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. Poor baby. Which I guess means we’re actually on the next day.
Originally posted on my family blog in 2013.