Emergency Surgery

Evelyn was in the hospital for her g-tube/nissen surgery from Tuesday, January 29th until Sunday, February 3rd. I was at the hospital with Evee (24-7) the entire time. It was long, it was lonely, and oh, so very tiring! If you have ever tried sleeping at a hospital, you can understand why I would rather sleep next to a newborn than in a hospital. When we were discharged on Sunday I was ecstatic to be going home and seeing my boys and seeing my bed.
Evelyn and I were both so grateful to be home. We slept like rocks that night. I woke up in such a good and grateful mood. Evelyn....well, she woke up, but she was obviously still healing. She didn't eat much and she was very sleepy or lethargic. She spent many hours sleeping in my bed. When she was awake, I could tell she just didn't feel all that great. She whined a little bit, but not much, not for what she had gone through.

The boys had karate Monday evening. I wanted to just skip it, but I needed to talk to their instructor. Since Evee was awake at the time we needed to leave, I decided that we would go.
A few times that day I had seen liquids oozing out of the bottom of the g-tube button. This did not seem right, but then I knew that part of recovery would have different things occurring.

While the boys were in doing karate, I fed Evelyn and noticed liquid coming out. There was a mom there that I talk with, and with her being a nurse I asked her to look at Evee's button. Surprise, surprise this woman was shocked and very concerned with Evee's breathing. I reassured her that Evee was breathing her normal, baseline breathing, but I did notice this mom check her watch and watch the respirations.
I pointed out the liquid oozing out and the nurse/mom was unsure of what to make of it. The problem is that not a whole lot of people have first hand experience with the healing of a g-tube placement. She did ask me about Evelyn's stomach. It looked big, but I had just fed Evelyn and since she has low muscle tone, whenever I feed her her stomach will expand larger than other babies because the muscle doesn't hold it in. I tried to vent air out of Evee's g-tube, but came up with nothing, then after moving positions which caused her abdomen to contract a little, I heard air escaping from under the button. Weird.
Since I was still feeling a little fatigued from the lack of rest/sleep I had gotten during Evee's hospital stay, I was planning on getting to bed ASAP. After feeding the boys, reading scriptures, and getting Evee's medicine all ready, I told the boys to come up to my room so that I could read to them while I rocked Evee. I left the dishes in the sink, the toys all over the living room, papers a mess, all with the intention of making it an early night and I would just clean up in the morning. I was void of energy and could not fathom staying up any later than absolutely necessary.
I had all the boys in my little sitting room (an extension of my bedroom where Evee sleeps and her clothes are).  I asked them to quietly wait as I changed Evee's diaper. I went to change her diaper and was disappointed in how dry it was. She had not been passing much fluid during the day. But the thing that concerned me more was how big and round Evee's belly was. I had tried feeding her while we read scriptures, but she ate hardly anything. Her belly was way too big for what little food she had taken in. I decided that I should at least call Todd.
I hardly ever call Todd at work, and with Evee just coming home from the hospital the day before, Todd answered very quickly. I asked him what he thought and he told me to text him a picture of it. When he got it he told me it did not look good. He then reminded me that I had her GI doctor's (Dr. Garcia) iphone number, I could text the picture to him and see what he thought.

I texted the picture to Dr. Garcia, asking if this was normal.  He texted back immediately saying that it did not look normal. He asked a few questions, then finally decided to call me. Dr. Garcia has a strong Spanish accent, and if you know me, you know that I have a very hard time understanding foreign accents. Talking to him on the phone prooved to be very difficult.
He did tell me that he felt that she needed to go to the ER. I asked if she could go to the ER near us, the one Todd was working at, or if we needed to go downtown to Rainbow's ER. He said that she could go to Todd's, but that she would may need to be transferred. He wanted her to get some x-rays at the ER, saying it may just well be a bowel obstruction, but it was worth inspecting.
At this point I had put Evee in her bed where she quickly fell asleep, I sent a message to my friend to see if she could help me with the boys, and I turned to my awaiting boys and informed them that we would not be reading. I told them that I needed to take Evee to the doctors. I was met with "Ugghhh!....You mean tomorrow?!" I told them that it was tonight. Then we knelt in prayer and asked Heavenly Father to not only take care of Evee, but also to take care of my boys. I sent the boys to bed as I prepared things. Since Dr. Garcia had mentioned that it may just be a bowel obstruction (constipation), I was hoping that I would be home later that night, but knew that it may be an overnight thing.
I got to the ER and texted Todd. I wasn't sure if he wanted me to sign Evelyn in or to go straight back to him. After about 5 minutes he told me to sign in. Shortly after being signed in I was taken back to the triage nurse.
I had met her at Christmas parties, so when I went in the room with her I told her who I was. She asked if Todd knew I was there, which I confirmed. She called to a nurse in the back to ask if Todd had mentioned that his daughter was coming in, which he had not. After she got off she told me that it was a good thing I said something for they were going to put us in the hallway (since the ER was so full), but now she was going to be putting us in the last room available. As she directed us to our room, she went on and on about how much they all love Todd and what a great doctor he is.

We got settled in our room and Todd stepped in for a second. He assessed Evelyn then told me that he was just finishing up on a couple of his patients (his shift ended 2 before this point) and that he would be right in. Meanwhile another Resident came in and looked Evee over, as well as an Attending.
Todd finally came in (mind you all of this may take a sentence to write, but actually goes on for a long time) and we took Evee over to get x-rays. The x-rays showed some air, but no big bowel obstruction. This baffled everyone.

This entire time I was trying to vent (get air out) of Evee's stomach using the g-tube. Nothing would come out. I was holding her and shifted her when I heard a stream of air, like I was squishing air out of a floatie. Again, the air was coming from under the g-tube. I mentioned this to the doctors, but a new g-tube is not something a lot of people have experience with.
The doctors called Dr. Garcia - I felt so bad giving them his cell phone number for Dr. Garcia had trusted me with it and I know how much doctors do value their privacy, but Todd reassured me that they would not keep his number and plus since this was not the hospital Dr. Garcia works at, it wouldn't be a problem for him.  We were still unaware of what was going on, so Dr. Garcia wanted Evelyn to be transferred to Rainbows.

The Attending, knowing and trusting Todd, gave us a direct admit to Rainbows without having to use the Transport Service. That way we could drive to the hospital ourselves. Unfortunately we had to wait about an hour to get our discharge papers ready.
By the time we got our discharge papers, I was feeling guilty. Evelyn's stomach had gone down, she was sleeping, and she looked much more comfortable. I was feeling guilty that I had "told" on her and now we would have to go to the hospital. Evelyn would have to get poked for an IV, then she would be checked on all through the night and get very little sleep. I was also feeling frustrated for Wednesday was my 30th Birthday and knowing how hospital systems work, I was sure that we would end up sitting around the hospital, give Evee an enema, have her poop, then be discharged Wednesday late afternoon.
We got to the hospital and told the receptionist that we were there for a direct admit to the 6th floor. She called up then told us that we had to "check in" at the ER. We had parked and had all our bags, and the ER is a long walk from Rainbow's reception, and it was around 1 AM. Needless to say, we were NOT impressed.
We got into the ER. They needed to do a quick check up on Evee, check her temp and such before she could be admitted. The nurse first came in and asked about Evelyn's previous medical history. Knowing that I would just have to tell the same thing to the doctor,  I just responded with a "Yes". The nurse looked at me, waiting for me to say something, but then I think my tired face let him know that I didn't want to waste my energy (and really, with Evee's medical history, it takes a lot of energy to go through it all).
We waited again forever. Todd practiced his super power of being able to sleep while sitting up

Evee got some rest

and I remained somewhat responsive

After forever the doctor came in and we were finally sent up to our room.
On the 6th floor we found our nurse to be super cute, nice and helpful. I actually saw her in the hallway the other day and she asked how Evee was doing, said she had been thinking about her.
Around 3:30 AM I finally fell asleep. Todd tried to sleep but was up being his baby's protector. He told me about how terrible everyone was with giving her an IV, that they had to have a whole team come in to give her an IV, that they stuck her many, many times, then they finally got it after 45 minutes of trying.  I explained to Todd that this is how it is every time, that Evelyn even will start crying when she smells alcohol for she has had so many bad experiences with it. Though Todd has tried to be involved with Evelyn's medical care, it tends to be me who does everything, goes to all the appointments, stays in the hospital with her, etc. It's nice to have Todd come realize what I have had to do and have gone through.

Though I had only slept until 7, General Surgery team had already come in. Man, I am glad that Todd is not a surgeon, those people put in SO many hours. According to Todd, they thought that her g-tube looked good and assumed that she had a bowel obstruction.
Around 9 AM Dr. Garcia came in. Dr. Garcia is a great doctor, and an incredibly caring man. He definitely has the Spanish passion for life, and that is apparent when he starts talking, but he also is soft as a bunny. He felt Evelyn and insisted that the nurses put another blanket on her. Dr. Garcia and his team talked about what could be going on. They talked about several things and discussed how they were waiting for many lab tests to come back. They told us they would be back.
After an hour (which in hospital land is really short) Dr. Garcia came back. He wanted Evelyn to get some x-rays, and he wanted her to get a lower GI scan, an x-ray taken while food was being put down the g-tube.
A couple of hours later (yes, remember hospital time takes forever) a transport guy came to take us and Evelyn down to the basement to get the x-rays. Evelyn was tired and you could tell she wasn't feeling the best.

Todd went into the x-ray with Evelyn while I waited in the hallway. When they came out Todd told me that they didn't do the GI scan. He told the technician that it was his understanding that we were to do a GI scan. The tech talked to the Radiologist. Meanwhile Todd sent a text to Dr. Garcia asking him if things had changed, asking if he didn't want the GI scan. The Radiologist assistant came to us and informed us that the Radiologist had tried paging Dr. Garcia but hadn't heard back, so they were going to send us back up to our room and if the order got changed, we would be brought back down. Understanding hospital time, this meant several hours later. Just then Todd got a text back from Dr. Garcia that said, "Why". Todd told the assistant to hold on a moment he just got a text from Dr. Garcia. The assistant was annoyed and said in a very frustrated voice, "Let the communication remain doctor to doctor". If I had been in a nastier mood rather than a desperate one I would have responded with the information that Todd is a doctor.

The assistant went back to talk to the Radiologist while Todd and I anxiously waited for another text from Dr. Garcia. If we were sent back upstairs, it would be another several hours before we could get this test done, rather than the 5 minutes it would take for us to do it now. But without an official Dr's orders, the Radiologist's hands were tied as well.
The Radiologist came out to speak with us. She was in the process of telling us that since we didn't have an order, she couldn't do it when Dr. Garcia blew through the doors. This is one reason I am so grateful for Dr. Garcia. He was probably upstairs, on the 6th floor, when he got the text and instead of sending someone or taking care of it later, he came down himself to make sure it got done.
The Radiologist, Dr. Garcia, and  Todd went into the Radiologist's office to look at the scans that they had gotten so far. Then they came out, took Evelyn into the x-ray room and did some x-rays. The x-rays showed some air in the abdominal cavity (where it should not be). Though the lower GI scan did not show any liquid flowing out of the GI tract into the abdominal cavity, the Radiologist pointed out that there was probably a micro hole for how else could the air get in there.
Todd came out and told me all this. Though we were still unsure of what all this meant, Dr. Garcia told us he would see us upstairs and he left.
We had to wait for Transportation Services to come take us back upstairs. After awhile they showed up. I told Todd I would meet him upstairs after I stopped by the cafeteria to grab some food.
As I was in the elevator back to the room Todd called me. He told me I needed to get there quickly, they wanted to do surgery on Evelyn. My heart dropped. No, not surgery. I thought that maybe someone was jumping the gun, so I got to Evee's room quickly.
Once in there, Todd told me the situation. They felt that she had a bowel perforation (a hole in her bowel) somewhere in her GI tract. This is not good at all.
Returning to my science days of BYU, let me explain something. The human body is very much like a doughnut. We have a hole in the middle of our bodies and this hole does not penetrate inside the body, but rather goes through the center of the body, much like the hole in a doughnut does not penetrate inside the doughnut wall, but goes through it. Our GI tract is this hole. It is how we get food. Our body picks up nutrients from the food and shuffles the waste through the hole. The walls of the hole protect the body from possible infections. A hole in the GI tract means access of infection to the rest of our body.
I started crying. At first in despair that we would have to live in the hospital for another long and lonely week (yes, I have very selfish moments, but until you have spent any length of time in a hospital, you cannot understand, it's hard on you, it's hard to see your baby in pain, it's hard to not be able to hold her), then as Todd explained to me some of the things he knew, some of the possible outcomes or complications of the surgery I started to cry more for Evelyn. 
Just then the surgeon came in. Great moment when your eyes are red and puffy.
The surgeon, Dr. B, (I really liked him), who had performed the g-tube surgery was out of town. This other surgeon, Dr. D would be performing it. Todd asked when the surgery would take place. Dr. D told us that the OR was open and we could do it now. We were stunned by this news, then seeing this Dr. D explained that since Evelyn wasn't symptomatic (no fever, no signs of infection) we could wait to see if she becomes symptomatic. But then he did say that it was opinion that surgery was necessary and why hold off. We agreed and he left.
When we had first gone to the hospital, I had let my family know we were going there. I didn't think that there was a big problem, but I just didn't want them finding out later and wondering why I hadn't said anything. My mom told me that if I needed her to, she would fly out and take care of the boys. After finding that we were going to do surgery I just sent a text that read "Evee has to have surgery. Mom, I need you to come out". Todd, being someone that hates asking for help, told me that we didn't need her to come, that we could do this by ourselves. I told Todd that it was okay for my mom to come, and if she didn't come that would just add stress to me. My dear friends were taking care of my boys, all without requiring anything from me, and I really appreciated it. But I needed my mom to come out so that there could be a continuity of care for my children. This was a stressful time and my boys also needed some sort of normalcy.
I held Evee in my arms. I knew it would be awhile before I would be able to hold her again and I wanted to soak up every minute. As I held her close to me I wondered what we were to do, if we should go through with the surgery. I inhaled her sweet smell and a calm feeling came over me, letting me know that doing the surgery was the right choice. I felt peace within this tumultuous time and knew that was the choice to be made even though I did not know the outcome or what it may bring with it.
Dr. Garcia came in. The lighting in our room was off and the darkness matched the mood. He felt badly about what was going on. He too mentioned that we could wait and see if she got symptomatic. I then asked him what his opinion was. He tenderly stated that if Evelyn didn't have the shunt, then we could wait, but if there was any infection we didn't want to wait until it spread for it could spread to the shunt tubing and go into her brain. He recommended that we go through with the surgery. We agreed and thanked him for his help.
Just a little later the Transportation Services came to take her to Pre-OP. We walked into the room that we had been just a week earlier. This time, though Evelyn was probably starving again, she was more quiet, more tired. We had some quick Pre-Op questions. The Pediatric Anesthesiologist was very kind and introduced us to his colleague that would be taking over for him later in the surgery. Then, it was time to have Evelyn taken away. Todd and I both gave her tender embraces and kissed her little head. It was a scary time. The thought crossed my mind several times, "What if I don't see her alive again?" Not a great thought. A sucky one as a parent.
Todd and I went into the OR waiting room. Neither of us wanted to talk too much. Our hearts were heavy. We were scared. We were exhausted. It. was. hard.
Dr. Garcia came in and talked to us for a bit. Then after some words of encouragement he said he was going to go watch the surgery.
We were left to our thoughts.
I kept thinking back. Questioning if we had made the right decision with having her get a g-tube in the first place. Did she really need it? Couldn't I have tried harder to feed her? Would we be in this mess if I had just pushed a little more? But then I remembered how she was before we brought her to the hospital for the NG tube. She needed food and was not eating enough. I tired to get her to eat more, but she wasn't taking it. Letting it spill down her chin.
Then I remembered how her pediatrician had said that he felt that she would need a g-tube, but not necessarily yet, he felt that we could push it back if we wanted. Had I been hasty to make a decision? But then the memory of how I would have to shut off her feed with the ng tube off for she was choking on them. She needed the Nissen to help her reflux, otherwise she couldn't use the ng tube. She couldn't get the extra nutrition that she needed.
In those moments, I became grateful. Grateful for our experiences. As hard as they had seemed at the time, they gave me reassurance that we made the right decision to have Evee get the g-tube. I now feel as though God gave me those experiences so that I could have something to remember when I questioned my choice - and believe me, even with those experiences I still question myself.
I feel that whatever happens, it is in God's hands. He had given me impressions, given me directions, I had followed them, I had taken into account the information that I was given and made decisions based upon that. Having said that though, in the end, whatever the outcome, it is God's will. Even though I would love to control the situation and make things be how I want them to be, God knows best. I cannot even fathom his knowledge and understanding. He wants what is best for Evee, and He knows what is best for her. He loves her infinitely more than I do, so who am I to say that I should be in control?
I was exhausted and tried to fall asleep in the waiting room, but I just do not have Todd's superpower of sleeping while sitting up. After a couple of hours of waiting, I reminded Todd that we needed to pack up our things that were in Evee's room on the 6th flood...plus we could take a nap in there as well.
We got up to go to the 6th floor.
As we were waiting for the elevator, a Resident came running up to us holding a piece of paper. The Neurosurgeon wanted to externalize the shunt (take the tubing out of her abdomen and have it hanging out of her body) and needed us to sign a consent form. Todd asked why this procedure was needed to which the Resident looked helpless. Todd signed the form and off went the Resident. Todd sympathetically said to me, "I know how he feels...I've been there before".
We got to the room on the 6th floor. It was still dark and just how we had left it, except for the crib was gone. In just a few minutes we were able to get everything packed up. Then I lied down on the couch and rested my feet into Todd's lap.
It took a little to push all thoughts out of my mind so that I could sleep, but soon sleep did find me. I woke up about an hour later, in the dark room, somewhat confused as to my situation. But once things started becoming recognizable, I remembered. I felt a sick thump in my stomach as I realized that Evee still was not done, she was still in surgery. I was worried. What did that mean. I woke up Todd and we quickly went downstairs to the waiting room.
The waiting room was empty, even the receptionist was gone. But then, it was after business hours. It felt cold and lonely sitting in the empty room, on the cold chairs, waiting. Not being able to tolerate the emptiness for very long and realizing that I was very hungry, I recommended that we go down to the cafeteria to grab some dinner. Down we went.
We were looking at the overhead menus, trying to decide what we were going to have when someone put their hand on Todd's shoulder.
It was Dr. Garcia and Dr. D, the surgeon. It was weird to see them there. Dr. D looked flushed. They had been looking for us. They had another consent form that needed to be signed. The surgery, though it had been long, had been successful. They had looked around her stomach for awhile, then they had finally found the hole. They were able to do most of the surgery laproscopic, but they did have to make one big incision on her belly. There was fluid that spilled into her abdomen cavity that they sent to the lab to test for infection. Since the fluid was in the abdomen, they decided to externalize the shunt tube for the tube goes up to the shunt, which goes to her brain. If the tube were to get an infection in it, it could go up to her brain. That would be really bad. They washed out her abdomen, closed off the hole, cleaned out her stomach, and just needed to finish sewing/cleaning up. They told us they would be finished in 20 minutes, so we could enjoy our dinner then be ready to go to the PICU (Pediatric Intensive Care Unit).
We were thrilled. Dr. D mentioned how it was so fortunate that we did the surgery, there could have been some really bad consequences if not. Dr. Garcia gestured towards me and said, "You did it, you knew when something wasn't right". I got chills thinking that in that moment last night, when I thought I may just be overly dramatic "telling on" Evelyn, it had saved her. But I couldn't take the credit. Dr. Garcia was responsive and had us go to the hospital. But most of all, it was for the little directions of the Lord. He had me take the boys to Karate so that my friend could point out her belly, something that made me take notice of it and be more aware of how it was doing. Then, many months ago, He made sure I had my doctor's iphone number so that in that moment I could text it to him. I can tell you right now that I may not have taken her to the hospital just because her belly was bloated. God had allowed us to get her x-ray, but then have the lower GI screen done with 3 doctors in the room so that they could discuss what could possibly be going on. There were so many tiny details that helped get Evelyn where she needed to be, and all of these were beautifully orchestrated by a loving Heavenly Father.
Again, I know that this is all in God's hands, for without Him, it could have been so much worse. If He ever chooses not to heal her, I cannot question for I did not question when He did heal her or when He did save William or any other situations when He healed/saved my other children. The Grace of God is a funny thing, one that we can always learn more about. We must learn to trust Him completely, something that I am still trying to learn to do. Whether it seems unfair or cruel, Christ's Atonement will make up for any injustice, any pain that is felt. In the end, we will see and understand that God is just, and more that He is merciful. That God is good. He is a tender parent that loves us more purely, more completely, than we can understand.
When we finally were called in to see Evelyn, I almost ran to her room. I was shocked with how terrible she looked, but I was so grateful that the surgery had been successful. Evelyn was swollen, intubated (tube in throat), sedated, laying still. I was so happy to touch her, to smell her. I kissed her forehead and inhaled her. Though I was met with a strong post-op surgical smell, I still was able to smell her. That day, that long tiring day, we had been through a lot. But in the end, we had won. It had been a good day. My baby had been saved.

God is good.