The second day was probably just as hard as the first, if not harder. When I got back to the room after trying to sleep for a couple hours, Dillon was by her side as I said and reported that she had an awful night. She was still in some pain and very irritated and thrashing around. She had socks over her hands to keep from pulling the wires and oxygen from her nose, and to protect her face from all the itching she was doing. She was so so terribly itchy and it was making her so miserable. Her face was starting to get red and puffy just from scratching it so hard and so often. This was at 10:30 am. She had just gotten her catheter out.She thankfully kept down some pedialyte that morning and and so I was able to feed her 4 oz. of breastmilk also at 10:30. My sweet brother-in-law Greg came by in the morning with some food for Dillon and I and said he would come by later that day. The rest of the morning and early afternoon were spent trying to help her be comfortable. We were moved out of the room where one nurse was watching only her and into a shared room divided by a curtain where the nurse was watching over just her but there was no one on the other side of the curtain. The nurse sits outside the rooms at a table and just helps two patients. We were moved to room 16. We were still unable to hold her at all, which was so hard when all I wanted to do was scoop her up and smother her in kisses and snuggles. But as long as all those wires were going to her heart, we were not able to hold her because it would be super bad if they were pulled out before it was time. They make the wires going to the heart really quite easy to pull out so they don’t have to do any drastic measures to take them out, so it makes sense that they don’t want to take any risks, especially if the wires tell them things that are so important to know in their recovery. 12:47 pm:1:20 pm. You can see from the pictures how miserable she felt. She was still on all sorts of medicines and they were trying to figure out the right combination of pain medicine with benadryl or something to help with the itching but it was a hard balance because she needed morphine but that in turn was making her miserably itchy. It was frustrating for everyone (of course the most for poor baby girl).My mom stopped by to give me a little break while I went to eat some lunch. Dillon had taken off for just a couple hours to do some work (which by the way he absolutely hated doing, but since she was stable felt like he was able to). Ruby was so cute and just stared and stared at her. I snapped a picture of this tree in the waiting room to show my other kids when we got home. I got back up to the room and my mom headed out and Dillon came back. (I found it fitting that the words on the crib were HARD).At about 2:30 pm, they decided that they were going to take out her RA line (IV going into her right atrium). It’s interesting how a few people always showed up for bigger “events” like taking out wires and chest tubes. They don’t tell you things can go wrong, of course, because they don’t want you to worry. So I wasn’t too worried about this part either when a couple people showed up while the RA line was pulled. They give them some pain medicine right before and since the line is held in with a stitch, they pull the line and tie the threads from the stitch so it closes the hole. She only fussed for a minute but the chest tube instantly filled with blood. Since it acted like a vacuum and shows how much drainage is coming from the heart, and how much of it is just clear fluid (ok) and how much is blood, they have to strip it a lot, meaning they don’t want the blood to start to clog up the drain and build up pressure, so stripping involved holding and pinching the tube with thumb and forefinger on the end close to her skin, and then with the other thumb and forefinger, pinching the tube and pulling the fluid away from her body so it suctioned down into the machine on the ground at the foot of the crib. The tube was just filled with blood—over and over. She bled and bled. An hour passed and the bleeding didn’t subside at all. We noticed the uneasiness of the nurse and the concerned talking outside our room. Ruby was pretty lethargic compared to what she had been the couple hours before. Just not moving near as much despite them still not giving her much morphine because of the itching. My brother-in-law Greg came back just when things were starting to get more pressing. Soon there were 7 or more people gathered in the room. Greg waited outside the room while Dillon went to talk to him. They mentioned that the bleeding was not slowing down and one of the male doctors wanted to order her some platelets to help the blood clot and also a transfusion. He ordered platelets probably at 3:15 pm. They had a radiologist come in with an echocardiogram machine to make sure that they could see if anything major was going on inside.During this time of basically chaos, one of the doctors out of the 7 or so people in the room came up to me and said, “She’s losing a lot of blood and the bleeding is not stopping. We’ve paged Dr. Eckhauser. The RA line tore her heart when we took it out and we are going to have to go back in and fix the tear.” I was so terrified. I immediately went out into the hall, in tears, and told Dillon and Greg. Dillon came in and Dr. Eckhauser was there with a couple men from his team. He looked at the volume of blood that was in the machine and looked at her machines and all the numbers and just looked right at me and said, “There is a tear in her heart. If it doesn’t stop in the next 20 minutes, I want to be operating on her in 30 minutes. I’m not going anywhere—I’ll be back to check on her in 20 minutes.” I tried to stay composed. Dr. Eckhauser turned to talk to the others in the room and Dillon and I looked at each other. I just mouthed the words, “Pray!” to him. He went out to tell Greg, himself in tears. While Dillon was in the hall with Greg, Dr. Eckhauser again turned to me and said, “I know it sounds bad, but it’s really not as scary as it sounds—I just have to reopen her where we already cut, untie the wires and sew up the hole. It’s not nearly as much as what we have already done.” And sure, it very well might have been just fine, but in my mind I kept thinking, “She’s already been through so much. This is just going to set her back to the beginning all over again.” and in my mind I just kept praying to please please, help her to not have to endure another surgery. They called over and over trying to get those platelets and they still hadn’t come at this point. Once the room was a little cleared of people (they just moved outside her room at this point), Dillon and I knew she needed a blessing. And of course we could have asked and found an LDS Priesthood holder in no time at all, but Greg was there. So it was just so perfect. Dillon and Greg blessed her with oil and then a blessing of healing. I cried silently but felt such power in that squished little hospital room. The nurse went to strip the tube right after the blessing, and much to our amazement, the bleeding slowed down immediately. It slowed and not only that, the fluid in the drain was thinner—which was a good thing. One of the doctors came in 5 minutes later and said, “Oh Ruby—giving us a scare there! That always happens. It gets all serious and we think something major needs to happen and then they just improve.” Dillon and I just looked at each other and smiled. And I’m pretty sure the man knew too, because he was LDS, he just couldn’t talk about it :). Dr. Eckhauser came in and said that the fluid was looking better and she still wasn’t for sure ok, but that it wasn’t looking so urgent anymore either and he’d check on her in a bit. She finally got platelets at 4:15 but by that time she was doing better and they were not going to do surgery. I was so happy. It really was such a huge blessing. 5:10pm. You can see the blood in the tube pretty well, and that was after it had slowed down so it wasn’t as thick or dark red. 5:45 pm: 6:00 pm she woke up for a bit. At 7:15 pm her blood transfusion finally made it to her room as well—up until this point they were giving her her own blood back through her foot. So this was from a donor and I will forever be thankful and feel obligated to give blood after her surgery and Bailey’s surgery. At 7:15 I wrote, “Poor baby had a long day. Still so itchy, still in pain and just very irritated and thrashing around. She’s itching her face so much it is bright red and puffy. When they took out the right atrium line from her heart, it bled and bled and bled. So much that the surgeon came in and said he would probably have to go back in and open her up to fix that because it probably tore her heart. Dillon and Greg gave her a blessing and there was immediate improvement. It was awesome. So so thankful my baby girl didn’t go back in for surgery. She lost a lot of blood from the ra line coming out and bleeding, so she’s got some platelets and she also is getting blood right now. Platelets were about 4:15 blood 7:15. She’s not wanting to eat much. They’re still trying to stay on top of her pain, itching, and she’s irritated still. But she is sleeping and trying to get some rest. Hopefully we can hold her tonight. I can’t wait!” She was pretty sad about this time too. I tried to play her some music on my phone. I kept playing Sara McLachlan Christmas because her voice is so soothing. And it actually did calm her some.I went to pump about this time and noticed this wonderful poem up in the room. Made me cry. I went downstairs to eat in the cafeteria and I was just so overjoyed and so overwhelmed with an immense amount of peace and happiness. My baby made it! She was ok! She didn’t have to go back in for surgery and she was on the mend!! I wanted to shout to the world how good God was. I couldn’t help but smile at everyone I saw. On my way back up to the room after eating, I saw the African man that was always cleaning the CICU and thanked him for keeping the CICU so clean for my baby and told him how wonderful it was to know it was a clean place for her. He smiled and told me in his wonderful accent “your welcome!”. As I passed the rooms with the other heart babies, I was totally reverenced by the hospital. The CICU, and the whole hospital for that matter, is so sacred. These kids are so amazing. The staff and doctors are so amazing. Miracles are occurring there every hour. It is just a wonderful place and I’m so truly thankful for the people who work there. These people are heroes. This hospital has angels throughout it—whether it be the form of nurses and doctors, or angels on the other side. I believe that with all my heart. I got back up and we hung out for a while longer and finally, she was stable. and although some people have to go much longer than 2 days without holding their baby, I never have. Laura helped us get her all situated with all the wires—we still had to be very careful not to pull anything out! And at 9:00 pm I got to hold her and I wrote, “I am holding my baby and suddenly everything is right in both of our worlds. SOOOO SOOOO happy to hold and nurse her. She is so much happier now. Me too.” I held her for probably 2 hours :). It was the best. I sent Dillon home about 9:30 to go sleep—he was tired and there was no point in both of us being exhausted. Since I could hold her and nurse her, I figured if she was sad I was going to be the one holding her and comforting her. And I was lucky and was able to get a room that night (though I did offer it to the people next to us but the nurse wouldn’t let me give it to them). Speaking of the people next to us, I did want to include this other detail of the day—around noon-ish a baby was life-flighted from Idaho that was just born that morning. The poor mother had her baby there, and she was deaf. They knew of no heart defect before birth and she was having to drive all the way from Idaho after just giving birth, probably terrified of what would become of her sweet new baby. My heart was aching for her! She showed up later that night—with her husband and her parents. I was SO happy when she was there and I walked past to see her holding her baby!!! The baby was thankfully able to have a shunt placed through a vein the next morning and the procedure worked!! The baby will have to have OHS eventually but the shunt will help delay the need for that for a while. They didn’t really say much other than she had pulmonary stenosis. And whoosh! That’s the end of day.
Originally posted on my family blog in 2013.