Dear Mr. Sparks,
Hi, my name is Victoria Grover and found out I was pregnant on May 25th 2011. This was to be my fiancé’ (Kyle) and my first child. Kyle and I decided to start trying to have a child after I acquired custody of my niece and nephew six months prior. We thought “why wait anymore”? We had been together for about eight and a half years and were the only people out of all our friends with no children (of our own at least). I woke up the morning of May 25th extremely nauseous and decided I needed to take a pregnancy test. After what seemed to be a very long three minutes it was positive. I was so thrilled! The next day I immediately called my obstetrics and gynecology office in the town I lived in and made an appointment. I had no clue how far along I was, so the anticipation was killing me to find out.
At the end of June I went into the doctor’s office for lots of blood work and my first ultrasound. I was extremely excited to be able to see my child for the first time. When she brought him up on the screen I can just remember how very tiny he was. That is when I found out that I was about 10 weeks and 4 days along. I left there with the biggest grin on my face. I was to be a mother, and there was nothing else that I wanted more.
The next couple of months were extremely routine. I decided to have all the necessary tests done to make sure he was perfect in every way. All of the tests proved so. On August 30th I went into the doctor to find out if I was having a boy or a girl. The emotions that morning were running through me with a fierceness I had never felt before. I had so many butterflies! We got to the doctor’s office and had to wait for what seemed like forever to get in. When she finally called my name my heart started to pound. We walked back into the ultrasound tech room and began. Everything was going great, and we found out we were having a boy! I was overwhelmed with joy! The next thing we heard, though, was far from happy news. She proceeded to tell us that there was a dark spot in his chest. She didn’t want me to panic because she wasn’t exactly sure what it was (fluid), so she wanted to show the doctor and get his opinion on if I needed to go and see the specialist in Grand Junction, Colorado. Walking into the waiting room I couldn’t help but cry. While we waited all I could think to myself was “please god let everything be ok”. The doctor came in a couple minutes later and told us he wasn’t quite sure what the dark spot was. He said it could be either fluid or a hernia. At the time the words “hernia” did not seem so severe to me, I’m not sure why. He told me I should see the specialist in Grand Junction (about an hour away from the town I live in) and made the appointment for the very next day. I didn’t sleep well that whole evening. I woke up numerous times asking and pleading with god for everything to be fine. I just wanted to go see the specialist and have him tell me it was nothing severe, but that is exactly the opposite of what happened.
After not sleeping well all night, I got up that morning and proceeded to get my niece and nephew ready for school. I was extremely nervous for what was to come, but new that he could feel my every emotion. With that in my head I tried to remain as calm as possible. When we pulled up to Saint Mary’s Hospital in Grand Junction I was scared. We got into the elevator, went up to the fourth floor, and proceeded down to the Maternal Fetal Medicine office. I checked in, gave all my insurance information to them, and sat down to wait. Waiting is something I have a hard time doing. I would rather know right then and there what’s going on. When the nurse called my name I felt a sigh of relief come over me, because I knew I would finally know what was wrong with my baby. After taking my blood pressure, they asked me to lie down on the bed. The nurse went ahead with putting the goop onto my belly and started to take measurements of everything. I was so thrilled to be seeing my baby again. About ten minutes later the doctor came into the room and introduced himself as Dr. Scott Grey. To this day I will always remember the compassion and empathy he showed me. After reviewing the pictures of measurements the nurse had taken, he took the wand and took a couple more. All throughout this whole process he talked to me. After a couple of minutes of looking at things he sat me up and told me in the best way that he could that my son had something called a Congenital Diaphragmatic Hernia. I was perplexed as to what that was, but as he was explaining everything I started to cry. He told me that we could do an amniocentesis to check his DNA strain to make sure there were no abnormalities amongst it. I needed to get some air, after being told that my child had a 50/50 chance of surviving. My mother, father, and fiancé were with me. We all went outside. We were all crying. I remember holding my fiancé telling him that everything was going to be okay. I told him that our son was a fighter and he could do this, and beat this. After a moment of thinking I decided to go ahead with the amniocentesis. We went back up stairs and told the doctor. I went back into the same room, lied on the same bed and waited to be poked in the stomach with a needle. I hated needles. After a couple of minutes he came in did his prep work to sterilize everything and we went ahead with the procedure. The pain wasn’t too bad, but I never once looked at the needle. After this he told us how extremely sorry he was, and that he would do everything in his power to make sure my son survived. I couldn’t thank him enough for that. We made an appointment for a month later and began our drive back to Montrose. The drive was filled with lots of crying, and my parents told us that the kids could stay with them for the night. We went home and just sat in awe, and fear as to why this was happening to our child. Of course I couldn’t help but look up CDH on the internet and found some amazing sites that gave me information I am extremely grateful for. I wanted to be prepared for the next time I saw the doctor, so that I could ask as many questions as possible.
That month seemed to go by extremely slow. When we saw the doctor again that day he commented on how much he had grown, and how much better he could see everything. After another ultrasound he took us into the other room and proceeded to tell us a little bit more about CDH, and about how severe our son’s case was. After explaining everything he told us that we would have to deliver at either Denver, Colorado or at another hospital in Utah. He also told us about CHOP in Philadelphia and told us what amazing doctors they had there. He said they were extremely specialized in CDH cases. I believed him and after a short talk with my fiancé we decided that CHOP in Philadelphia was a place that we wanted to go. We wanted to get the best care that we could for our son. After about two weeks of talking about what was going to get paid for by my insurance everything was planned and we were set to leave for Philadelphia on October 7th, and was to return on the 8th. I was extremely nervous, but excited that maybe I would finally get some good news from somebody. As I went to sleep I remember whispering to Kage that mommy and daddy would take care of everything, and that he would be just fine.
The flight to Philadelphia was extremely frustrating. I guess me and planes do not go together when I am pregnant, because I was uncomfortable the whole time. No matter how I sat. When we arrived at the airport we called the Ronald McDonald house, and they sent a van for us. Being there, for me, was a real eye opener. It hurt to see all these children around me sick, or recovering, or paralyzed. It was hard to not cry when looking around. I went to bed early that night as the next day was filled with tests.
When we arrived at CHOP it was about 6:30 in the morning. My appointments didn’t start till around 7 am so we just sat in the waiting room watching the television. We were the only people there. After we got started the day went by very fast and was very busy. It started with an ultrasound, then an echo. After the echo I went in for an MRI. He moved around the whole time I was in there so it was hard for them to get a good picture. After laying there for about 2 hours they had taken enough pictures for the doctors to see exactly what was going on inside of him. After that we ate lunch, and then back to one of the most crucial appointments of the day. We were going to tour the NICU. We ate quickly, and headed back upstairs. We met with the woman who was going to show us the NICU and began our tour. It was extremely hard to see all those poor babies in there, having to fight for their lives. She showed us a baby who was on ECMO, and another baby who had just had their repair surgery. I cried a lot throughout the whole tour. I couldn’t handle knowing that that’s what my baby would look like. Wrapped up in cords, and stuck with their little IV’s. It was hard to bear. After touring the NICU, we met with the nurse, surgeon, and obgyn. He told us that our son had one of the worst cases of CDH that they had ever come across. He had RCDH. He had a little piece of diaphragm on his left side, and only his liver and some of his intestines were up. They told us though, that the reason his case was so severe was because of the placement of his liver. It was kinked up against the diaphragm he did have, and as we know the liver is what processes your fluids. He was not processing fluid correctly, which in return was causing me to produce extra amniotic fluid. The doctor then told us that by all the tests they did (LHR, etc.) that our son had a 5% chance of survival when he was born. Hearing this news was devastating. They told us we pretty much had three options. We could either not continue with the pregnancy, continue the pregnancy and just spend what time we could with him when he was born, or we could continue the pregnancy and do everything we could for him. It didn’t take long to know that I was not going to give up on my son. After leaving the hospital we knew that our son had a very little chance of living, but still the hope remained in our hearts that he would be alright. The trip from Philadelphia back home was filled with much sadness, as I wished in my head that we had gotten different news.
After getting home we continued with our normal routine for a couple of days. I made an appointment with Dr. Grey as usual. When we saw Dr. Grey at our appointment we noticed that Kage looked extremely swollen to the last time we had seem him. It had only been three or four days. Dr. Grey looked at these pictures and told us that he was becoming extremely water logged and that was why he was so swollen. He told us that it was possible that Kage’s heart could give out at any time. I felt so bad for my poor baby. Dr. Grey told us he was going to contact the doctors at UCH and see what they wanted to do, and that either he or they would get a hold of me. That same evening Dr. Schwartz contacted me and told me that they wanted to do what they call a “shunt” procedure on Kage. These is where they take a large needle and place a smaller tube inside the needle, stick it into my stomach, push the smaller tube into his side so that the fluid could release back into my amniotic fluid. They were hoping to relieve some of the pressure on his heart. We told Dr. Schwartz that we wanted to do anything we could and made the appointment for that Friday November 19th.
When we got to UCH on that Friday I was extremely nervous. I wasn’t sure what was to come. After meeting the nurses, and getting ready to do an amniocentesis (to determine whether or not the fluid inside of him could go back into my amniotic fluid) I met the anesthesiologist. Everybody was so nice. We went in for the amniocentesis and all I remember is laying on the bed in the Operating Room scared as could be. The pain wasn’t bad until they pulled the needle out, then I started to have minor contractions. They went away after about ten minutes though. Now it was time to wait and see if we could proceed on with the second procedure of the day. When the news came back that the fluid could be drained back into me I was very happy. We went back into the same OR room and before we made it there Dr. Gien stopped me and wished me luck. I then got into the room and was placed on the OR bed again and they started the second procedure. After about an hour they were finished and happy with what went on. It went very successful, and now we just had to wait to see if his swelling was going to go down. The very next morning Dr. Schwartz came in with another doctor and did and ultrasound. Turns out his swelling had gone down a lot! It was great news to my ears! He told us that he wanted us to do an MRI before we left to go back home. They released me from the hospital and we went back to the Ronald McDonald house in Denver where we were staying. When Monday came we went in for my MRI. After about another two hours I was down and we started to make our way back home. We got about an hour and half from being home and Dr. Schwartz calls to tell us that from the looks of the MRI results the shunt was falling out, and they wanted us to go back up there to try another procedure. That was heart wrenching to hear, but I knew I needed to do whatever I could to save my son. We decided to leave that Wednesday (the day before Thanksgiving) to go back up to Denver. That Thursday morning we went into the hospital for the second shunt procedure. They found that the previous shunt had not fallen out, but wanted to still relieve more pressure from his heart and put another shunt in his other side. We consented and we were back in the Operating Room again. Because of the pain I had experienced with the first procedure they decided to give me a spinal. They went ahead with the same procedure, but this time my little man was more resilient. He would not stay still for anything and I knew something was going on because this operation lasted a lot longer than last time. They finally got it where they wanted it on his chest, and when they went to put the shunt in he rolled and it went all the way into him. You could tell my doctor was completely disappointed with himself. They decided that they were done poking me anymore, and we were okay with it. Later on while recovering, and the spinal was starting to wear off it got harder for me to breath. I told my nurses that and they immediately brought in the doctor on duty, and grabbed an ultrasound machine, and looked in my stomach to find that I was bleeding internally from the first surgery that day. My doctor rushed back to the hospital, and we were back in the OR. That was one of the worst pains I have ever felt before. This time they gave me an epidural, so that depending on how long the surgery took they could give me more pain medication if needed. Everything went good, and they stitched me up and I began the healing process all over again that night. They watched me for two days, and then released me to come back home. We left that Sunday morning for home. Monday came, and it was time for me to make an appointment to see Dr. Grey. We went up for my appt. on Wednesday and it turned out I had developed preeclampsia. My doctor said it was only minor, but wanted to check with the doctors in Denver to see what they wanted me to do. Turns out they wanted me to be in Denver, so that they could monitor me, and wanted us to leave the next day. I remember feeling sad because I wanted to stay home for just a little while longer, but knew that this was the best thing for me and my little man. So we planned to leave the next morning. Turns out my water broke at 2:45 am Thursday morning, and they rushed me to the hospital in our town, they Flight for LIfed me to Denver. Thank god Kyle got to go or else I don’t know what I would have done without him. We got to Denver and they got me into a room. They checked me to see how dilated I was and I was only at a 1 or 2. So they gave me antibiotics (because my water broke) and we were trying to see how long I could keep him in. This was at about 6:30 am. Throughout the day I could feel my contractions getting worse, but never being in labor before compared them to my cramps (which are horrible for me) and underrated my pain. At about 3 o'clock my doctor came in and I asked for an epidural. He knew that I had to have been in some pain to ask for an epidural, and told me that if I had one we would have to go along with the process of having my baby. After about an hour of thinking, trying to deal with the pain and talking to the doctor I decided I couldn't take the pain anymore and asked again for the epidural. I felt like I was giving up on my son for asking for something for the pain. The doctor wanted to check me to see how dilated I was, and found out I was dilated at 9 cm. They hurried to try and get the anesthesiologist in the room to give me the epidural, but when it was all set up and ready to go I knew I had to push. Doctors were running around everywhere trying to get things, and all I remember is my doctor coming in and telling me to not pay attention to the 10 or 15 other doctors in the room, waiting for my baby to be born. After pushing for about 10 minutes his heart rate started to drop and my doctor knew he had to get him out. So he grabbed the forceps. Two seconds later I remember feeling some pressure relief and looking down to see my beautiful baby boy, trying to open his eyes. They immediately rushed him over to the other doctors, and my doctor started to stitch me up (I lost a lot of blood). After about an hour they let me go see him. They were trying to get him stable enough to be transported over to the Children’s Hospital. I remember seeing him, and wanting to hold him so badly, but knew that I needed to let the doctors do their job. They got him stabilized and ready to go and I remember telling him I loved him so much and to hold on. Dr. Gien came back over to the hospital at about 10 o'clock and told me he was stabilizing well, and fighting the fight. I remember feeling so happy, and thinking to myself that my son will make it. I went to sleep that night feeling happy. At about 5:30 the next morning Dr. Gien called me and told me that they were releasing me for a little while to come be with Kage, because he had taken a turn for the worse. I felt devastated and Kyle and I prayed for him to hold on. When we got over to CHC it was about 6 am and his condition had not gotten any better. We knew that our time was probably going to be short with him, but still I whispered for him to hold on and fight. Half an hour later his doctor told me that they think he had blown a hole in his premature lungs, and that they could try and put another tube in but couldn't guarantee that it would even help him. Making the decision to not put more tubes in him and to hold him before he passed was the hardest decision I've made in my life. I held him first, and then let daddy hold him for a little while while he was still alive. After daddy held him I took him back. I'm not sure when he passed, all I remember is the doctor coming over to me and whispering in my ear that he was gone. He died in my arms. I was singing “you are my sunshine” to him when he passed.
This is the story of my beautiful angel who went to live with god on December 2nd 2011. Fly high baby boy, mommy and daddy love you always and forever!