Ruby’s big day

Category: ruby's journey | November 1st, 2013

dell children's medical center
Hi! We are mostly back to “normal” now so I thought I’d finally take the time to write up a post about Ruby’s big day with her surgery. I actually wrote up a post a couple of weeks ago, but y’all, it was soooo long. I reread it and realized it was super detailed and no one wants/needs to know all that. Haha. I am saving that post for Ruby when she gets older. :)

Well I would like to start off by saying Ruby is doing amazing now and she’s acting like nothing ever happened. Praise God. But that is a whole other blog post that I will write up about her recovery later. So here’s her “shortened” (not really) version of her day. My hope is that at some point this post can be helpful for other readers out there who might be going through the same thing and find some comfort in learning a little more about what goes on through a parent’s perspective. :)

October 1st will always be a special day for us and a new anniversary to celebrate every year. We didn’t find out the time of her surgery until the day before. We had been planning and mentally/spiritually preparing ourselves for the 12 days since we had known her surgery date, but when we found out the exact time it made it seem real. Since we live so far away from the hospital we were able to drive up the night before and stay at the Ronald McDonald House, which was so nice and a stress reliever for us.

My mom came and took Penelope back home and Travis and I spent some quality time with Ruby and got her all prepped for the next day. I surprisingly slept (a little bit) that night. I was real curious as to how Ruby would respond to the whole fasting thing but thankfully she was able to nurse 4 hours before surgery so I made sure to set my alarm for her just in case. I sat there (half asleep still) and enjoyed that moment knowing it would be the last time I nursed her with her precious little head…and hair.

mama and ru
Since she wasn’t able to eat Travis and I fasted too. Ruby has food jealousy so if she would have seen me eating anything then that would not have been pretty. Ha. We tried to make our morning as normal as possible and when it was time we just walked on over to the hospital. It felt like such a long walk for me even though it only took maybe 5 minutes. I had been holding back so many tears. I just held her so tight and kissed her head as much as I could. There were some paperwork, some questions answered, and some waiting. Ruby had been great the entire time but towards the end I could tell she was getting hungry and tired, which is never a good thing for someone who doesn’t understand what is going on.

After we dressed her in her tiny hospital gown they put this massive heating gown around her. It blew out hot hair to keep her warm and cozy and within a few minutes she was out. She was so peaceful which made me feel peaceful. And then the nurse came in to say it was time and the water works came flowing. I had been so calm the entire time and trusted God. I knew he was taking care of her, but I had held back so many tears that it was necessary and healthy to get it all out…although I was still holding her so I couldn’t go crazy. Lots and lots and lots of kisses were given. She was still sleeping when I had to hand her over to the nurses but as soon as I let go she woke up and started crying. Broke my heart. That was probably the hardest thing I have ever done.

heating gown
After that I seriously don’t have a clear memory of what happened. I was a little out of it. I was tired, and hungry, and crazy emotional. Lol. Travis decided to keep fasting but since I’m still nursing it wasn’t the best idea for me. My mother in law went with me to grab a bite to eat and keep me company. They gave us a pager (like at restaurants) and told us it would go off when the doctors are done, and they would call me to give me updates every hour. I think that is the coolest thing ever. They told us that it could take up to 5 hours for everything. They took Ruby back a little after 11am, and around 12p I got a phone call saying she went to sleep just fine and that they started. That made me feel better knowing that she wasn’t feeling anything.

Then we just played the waiting game. My in laws were with us for support and to help keep our minds distracted, and even my awesome sister came into town and stopped by to say hi. Before we knew it a couple of hours passed and the pager went off. It was a weird feeling. I didn’t know what to do. I was all excited and nervous and clueless at the same time. A nurse came out and said they were done! It had only been a little over 2 hours since they called the first time. If anyone is curious, cranial vault remodeling (CVR) is the procedure her amazing doctors performed.

We went back to talk to her doctor and he gave us the amazing news that she did great and everything went smoothly. I was so excited and gave him a big hug! We had to wait about 45 minutes for them to move her to the PACU (the PICU was full at the moment) and get her settled. I was pretty nervous about this part because I had read many stories about other babies’ surgeries and seen pretty graphic photos. I had tried to mentally prepare myself for what we were about to see, but I don’t think anything can prepare you for something like that.

ruby
She looked so different. She looked older, but not in a number/age way. She just looked like she had experienced so much life already. It’s hard to explain. She looked fake, like a doll. She was so still and pale. She looked so peaceful too…until you got up really close to her and could hear her little moans. She was in pain. Oh man. I don’t know how to describe that feeling. Helpless I guess, when your baby is in pain and there’s absolutely nothing you can do to help…besides pray.

ruby
About 15 minutes later I started feeling really light headed. All the tubes and machines and excess fluid from her head got to me. I was about to pass out. My sister took me to get some fresh air and more food. That helped a lot. I don’t know how you nurses/doctors do it….although it is a little different when it’s your own child.

While we were gone they moved her to the PICU and we had to stay there for 24 hours to be monitored. It had taken the nurses quite awhile to figure out the right amount of morphine to get her comfortable. It was so hard to watch her be in pain and not be able to hold her or anything. We held her hand, kissed her, sang to her, etc. She would open her eyes a few times and we could tell that she recognized us. Sweet girl. She was a little swollen but not bad at all. They said the swelling would come soon.

My mom came by with Penelope and originally we weren’t going to let her see her sister until she was out of the PICU but we thought it would be nice for Ruby. So we covered up as many of the tubes that we could and brought her in to see her. We had talked to her before and tried our best to let her know what was going to happen. She did great. I think she was a little concerned and curious about her head since she had it all wrapped up.

ruby
The rest of the PICU experience was as good as a PICU experience could have gone. The nurses were so nice and informative and I knew they were trying their best to make Ruby feel as comfortable as possible. She seemed pretty hungry so I gave her a bottle (which I was a little nervous about because she doesn’t do well with bottles) but she downed that thing so fast….but then she spit it all up shortly after. They said that’s normal. After that she kept all her feedings down. Travis and I took turns sitting next to her bed. I think we got about a couple 2 hours “naps” throughout the night. Ruby never seemed to be pain free. I mean, that was to be expected from just having head surgery but I just wanted her to be comfortable. They did have to give her another blood transfusion in the middle of the night. Nothing too worrisome but they did it to be on the safe side. (She did have a blood transfusion during surgery as well and they were able to use the same blood).

bottle
Before being transferred out of the PICU into a regular room we realized Ruby was having a reaction to the morphine. Since she was on a higher dose it had made her face itchy and she kept trying to scratch it every 5 seconds. It didn’t help that she had tubes and what not around her hands so after a while she gave herself a few cuts on her face. So they switched her from morphine to lortab (which is acetaminophen and hydrocodone) and that seemed to be much better.

ruby and baby doll
After 24 hours we switched to a regular room and a slower paced atmosphere. It was nice. I even decorated her room (with some help of sweet friends) knowing we were going to be there for a few days. It definitely helped. As soon as we got there they said we could hold her. I wanted to hold her so badly but I was so nervous to even move her! It was like she was a newborn all over again and she was so fragile…..although I felt like she was even MORE fragile. I didn’t know how to hold her because of her tubes coming out of her head. I didn’t want to hurt her. But we figured it out and it felt perfect. She nuzzled into my arms like she normally does and she was happy. We realized that it had been 30 hours since we held her last. That was the longest 30 hours. Ever.

first time to hold herdada and ru
When she woke up they said I could nurse her. I was excited to not have to pump anymore but was nervous all over again about how to hold her. It was a little awkward with her tubes and the angle of her head but we did it. I probably looked so uncomfortable. Ha. Then some friends and family came to visit and we were showered with love and yummy goodies.

We slept a little better that night and by the next morning she seemed a little more like herself! She was wide awake and interacting with us…smiling, laughing, playing with toys, etc. We were so surprised and so happy to see her pep up like that. I was super excited that she didn’t have any more swelling. Her head was still swollen but not her face. I had read so many stories of other babies’ eyes swelling shut. Even the doctors said it probably would,  but thankfully it didn’t happen! The doctors came in to take off her head wrap and I had to take a few deep breathes before looking. It looked awful, but to the doctors it looked great. It was weird seeing her completely bald, but it was so neat to see the immediate changes in her head shape!

incision
ruby
ruby girl
The next two days consisted of lots of vital checks, pain meds, antibiotics, several doctor follow ups, naps, texting, instagramming, facebooking, and lots and lots of hugs and kisses. Everything seemed to be going so smoothly. They finally were able to take out her drain tubes and that made holding her so much easier. She also had to get another cat scan and MRI and she did awesome.

Her doctors came in to check on her one last time and said she is all clear to go….after she poops. Lol. She had passed all the requirements to be able to leave except that. So we waited and waited. The bad thing about her pain meds, lortab, is that it made her constipated. So they gave her a few things to help her out and several hours later…yay! We were so excited for poo. ;)

going home
So we packed our bags and took our craniobaby home. We are so blessed to have such an amazing hospital close by and even better, amazing doctors and nurses and staff. We cannot thank them enough for the work they did on our sweet Ruby. We also want to thank everyone for all the wonderful prayers and words of encouragement through out all this time. We could not have done it without the support and love and prayers. I know for a fact that that is why I was as calm as I was because I could feel all the prayers. We are forever grateful. And of course our awesome family and friends who came to the hospital, brought us food, took care of our oldest, and loved on us. That is a tiny moment in my life that I will never forget. Ruby made it so easy on us. It was hard, don’t get me wrong, but she was/is such a trooper and she is so strong. I can’t wait to see what is in store for her future! God’s got some plans for that child. :)

**Life at home post coming soon.

 

  • Troy

    We just went through the same thing last week, and it was like reading something we wrote. For all the parents out their that are going to go through the same thing, read this, prepare yourself as much as you can, and pray. God will take care of your child, he has a special place in his hear for all of them…

  • holly

    Finally let myself be able to read this… I still cried, but at least I know how well she is doing still after such a major surgery :)