My kids can be known to leave their things out, neglecting to put them away, at times leaving them in terrible places. As you can imagine, this can be incredibly frustrating for me, and them.
Just yesterday, Todd had accidentally broken something of Roger's because it was left it on the floor of the garage. Roger was upset, but I hoped that it would be a good learning lesson for him.
When Roger left his headphones on the floor of the garage today, I knew that my hopes were not fulfilled. Todd asked Roger to move his headphones, only to find later that Roger only moved them to where the door lead into the house. Frustrated, Todd hid the headphones and came up with a plan.
Todd decided to tell Roger that he had stepped on and broken his headphones. Though it wasn't truthful, I supported this plan for I hoped that it would help Roger learn.
Roger's reaction to the news of his headphones being broken was, as I had anticipated, very dramatic. He wailed and cried. It was the worst news ever.
Todd and I both calmly had discussions with Roger, discussions that helped Roger to see that the accountability of the broken headphones rested on him for not putting them away. Eventually Roger calmed down, and though still sad, understood it was because of his own folly. He started going throughout the house, picking up his things, not wanting them to be destroyed.
Because of his change of attitude, we decided that it was time to let Roger know that his headphones were actually not broken. Todd gave Roger his headphones as he explained that he had done this to teach Roger a lesson.
Without malice, or any sort of attitude or teasing, Roger sincerely and lovingly inquired, "When are you going to repent?" concerned about the lie Todd had told.
Lesson learned.
Saturday, December 28, 2013
Tuesday, December 24, 2013
My Bro Roger
My oldest brother (and sibling) is Roger. He was named after my grandpa, as was my Roger, but at the same time, my Roger was also named after my brother Roger. As a young girl I always liked his name and actually thought I would name one of my boys Roger, but then realized he would probably want to name one of his kids Roger. He did, but only as a middle name, so I was in the clear to use it.
Today, Christmas Eve, is Roger (my brother)'s birthday. He is always the hardest person to ever shop for, and especially since his birthday is so close to Christmas, it sometimes gets passed over. So, I wanted to take the opportunity to document, publically, my thoughts, feelings, and gratitude for this great man.
Being the oldest child cannot be easy. You are the guinne pig of the family, and such was the case with Roger. God knew what He was doing when he sent Roger to my parents for he was always a pretty good kid, and a good example and protector of his siblings. I always wanted to have my first child to be a boy because of Roger.
Roger is very easy-going, he rolls with the punches very well. There are only a few things he is particular about, but for the most part he makes life easy and pleasant for those around him.
Roger is a good husband to his wife, Tavia (whom I absolutely adore). He has supported her in going back to school, having more kids (well, he was more than supportive of that one, he loves babies), and even running ultramarathons and Ironmans. He allows her to do and be what will make her better and happier.
It is always fun to see your siblings as parents, and Roger is a good one. He spends time with his boys, doing what he and they enjoy. He encourages his girls, and though they have him wrapped around their fingers, he still is able to hold his ground and tell his kids "no" when it is appropriate. He sets good boundaries for them, boundaries that will help them become better people. I remember him saying (before I had kids and his oldest was about 2) that you can either "fight" with your kids when they're 2 and win, or you can "fight" with your kids when their 15, and loose. Basically saying that you cannot be afraid to parent your kids, or else you will never be able to parent them when they really need it.
Roger is a computer programmer (or something with computers), but his interests are not limited to that. He loves to hunt, to play basketball, to dress stylishly, to exercise, to go to movies, to travel. He gets along with most anyone, and everyone that knows him, likes him. He finds common ground and he validates people.
Growing up, Roger was not the most natural basketball player, but he loved the game. He spent many, many hours in our driveway, working on different basketball drills. I remember the outside lights being on and listening to him dribble the ball just outside my bedroom window at night. Roger has always been willing to work hard, does not shy away from it. My boys love hearing the story of one year on Roger's birthday he helped my other brother get the 6-wheeler out of the creek, getting wet and totally destroying his pants in the process.
Roger is a great man, one that I am proud to say is my big brother. I am grateful to him for all that he has done for me, in my life, and the example he has set. I love you Roger. Happy Birthday.
Tuesday, December 10, 2013
Tumor Surveilance
The day before Iralee was born, Evee had an appointment downtown with the Urologist. We had never been to a Urologist before. The reason for our visit was to check out Evee's bladder, to see if it was working well. This is all because her MRI showed that she has a tethered spinal cord. Her Neurosurgeon thought it would be best to have Evee see a Urologist, for a tethered cord could cause trouble with the bladder. As the neurosurgeon asked me if I was okay with Evee seeing another specialist, my mind was screaming, "What! No! She already sees too many specialist", but my mouth said, "No problem, especially if you think she should". In all honesty, I will do all that I can for Evee, take on many more specialist, but there are moments that you just want to hide away from the entire medical community and pretend that there is nothing amiss with your daughter...that is until her heart rate starts going all over the place and your nerves are worn thin.
My only concern about this Urology appointment was my pregnancy. The appointment was scheduled several days after my due date. I thought for sure that the day of the appointment would be the day I would go into labor. I did have a back up plan in mind, so that is probably why I didn't go into labor....well, that and I feel that it was Divinely orchestrated.
For the appointment we first went to the imaging department in the basement where Evee got an ultrasound of her abdomen, most specifically her bladder and kidneys. The tech spent some time getting pictures, then when she was finished she told us to sit tight as she conversed with the Radiologist, to make sure she got all of the right pictures.
After the tech left the room, Todd joked that we don't fall for that trick anymore. It usually is not a good sign when the tech needs to "consult the doctor" before you can leave the room. But hey, what could be wrong, so I just lied on the bed next to Evee for I was one tired prego mom. It was hard to be left in that room, with an ultrasound machine and a doctor (Todd) who knew how to run it, and not have him use it to find out the gender of our baby. But I figured I had waited this long, I can wait just a little longer.
After what seemed forever, the tech came in and said that she got all that was needed and that we could go up to our appointment.
All of this was done at Cleveland Clinic. If you need to know where something is at Rainbows/University Hospitals, I can show you around, I can get anywhere there. But at Cleveland Clinic? No way. I do not know my way around that place very well, yet.
As we were walking the halls of the basement, attempting to follow the directions the tech gave us, we passed a nurse in scrubs. Seeing that we didn't look confident in where we were going, she turned around and escorted us to our destination. I was incredibly touched by her kindness for she went way out of her way to take us to where we needed to be.
For Evee's appointment she had to do some bladder tests, which included x-rays. Because of this, I chose to leave the room and have Todd be with her. After everything was done, the Urologist, Dr. R, escorted me back into the room.
Dr. R showed us the results of the test, which included a lot of squiggly lines that made no sense to me. Dr. R said, "So the bladder is working fine." But then she followed that with, "that's the good news"
X-CUSE-ME!
Not really sure of what she was going to say, and seeing that I not only have gotten really good at taking bad news but tend to under-dramatize things, I listened to what she had to say next, but I didn't put a whole lot of stock into it.
Dr. R explained that they found a mass on one of Evee's kidneys. She quickly said that it most likely was an AML tumor, something that is not a big deal at all, that usually just is monitored but doesn't usually cause any problems. Dr. R mentioned that she looked at Evee's MRI from August and was able to see the tumor in one of the shots, but the Radiologist missed it most likely because he was focused on the head and spine. Dr. R said that an MRI would give us the most information about the tumor, and that she was fine with waiting until Evee's next scheduled MRI (in February) to take a closer look at it.
Then she mentions that the only thing we must be careful about is the fact that because of Evee's genetic syndrome she is more predisposed to getting Wilms tumors, even though Dr. R was fairly certain it was an AML tumor (much better). When Dr. R mentioned the Wills tumor I realized that this was something I would need to talk to Evee's oncologist about, that the Wills tumor was something that we screened for by ultrasound every 3 months. I mentioned this to Dr. R and Dr. R offered to call the Oncologist, which I was grateful for for I wasn't sure I could relay all the information correctly.
Todd and I left the office, me feeling fine and Todd with his head down. I asked Todd why he was so upset. He said, "Because our daughter has a tumor"
"No, she only has a mass" I replied.
Todd looked at me, "Same thing".
Oh, I guess I knew that, but the word "tumor" just sounded worse to me.
The next day, after I had gotten home from the midwife's appointment but before my water broke, Dr. R called us. Todd had answered the phone. When he got off, his spirits were low.
After talking to the Oncologist, Dr. R's tone had changed. Though she was hoping for the tumor to be an AML tumor, it was more likely to be a Wilms tumor. According to Todd, Dr. R seemed much more concerned and there was an urgency in her voice. She said that Oncology would be contacting us and that they would be wanting to see Evee that week.
As Todd and I discussed what was said, I mentioned that Evee had her ultrasound screen just in July, they had seen nothing, and in just one month's time, it was showing up on the MRI. As all of this sunk in, we began to cry. We hadn't given up hope that it just may be nothing, but the realization that Evee was still not "out of the woods" hurt. We tried comforting each other as Evee was in our laps. We were comforted, but dealing with the unknown can be difficult.
Less than fifteen minutes before I delivered Iralee, Dr. M, the Oncologist, called. It was really difficult to deal with the physical, emotional, and mental pain of labor and yet try to have this important phone call come through. As I listened to Todd, I was not comforted by Todd's question of "Why the urgency?"
Dr. M wanted Evee to get an MRI. He wanted one the next week. We couldn't get one the next week, and had to settle for one the following week. We need to have a better idea of what we are dealing with, and an MRI should show whether it's an AML tumor or a different type of tumor.
While in discussion with one of Dr. M's fellows, Dr. P (love her), Todd asked what the course of action would be if it was thought to be a Wilms tumor. Dr. P said that the good news is that Wilms tumors usually respond well to chemotherapy, so that would be our first plan of action. I was very disturbed when Todd told me this. I asked about surgery and Todd pointed out that surgery may end up hurting her kidney more than necessary.
I do not like the idea of my little girl going through chemo. I have two aunts that had breast cancer and I know the chemo was the worst thing about the whole ordeal. I remember visiting one of my aunts while she was going through it. She was so weak and sick. And she was a grown woman! I can't imagine my little girl going through the same thing.
October 16
Yesterday Evee had her MRI to check out the tumor. The MRI was downtown, had to be there in the morning. The boys also had a homeschool class at the Natural History Museum just a mile away from the hospital at 1, so we brought the boys with us. While we were checking in and getting everything taken care of, the boys watched some shows on the iPad in the lobby. I was very happy for their behavior was awesome. I had many people compliment the boys on how good they were.
Checking in and getting ready for the anesthesia and MRI was pretty painless. I was impressed with how well Evee did, especially since she was fasting. Iralee was really good, pretty much just slept, ate, and pooped all day.
After Evee was finally taken back, around 11 AM, we took the boys to eat at the cafeteria and then explore the huge hospital grounds. Just before 1, Todd took the boys to the museum as I continued to wait for Evee to be done. A short time later, I was called back to the recovery room.
Evee looked great. She was tired and hungry, but good. She fell asleep a couple of times, I was grateful that she was getting some peaceful rest and it gave me the opportunity to feed Iralee without any problems.
Around 2 PM we were getting ready to be discharged. I had signed the discharge papers and all that was left was waking up Evee and pulling out her IV. I had just finished feeding Iralee when I noticed how flushed Evee was looking. She also felt hot. I asked the nurse to take her temperature. 102 degrees. Not good.
It was speculated that some bug was just manifesting itself, that Evee was getting sick but it just didn't show until that moment. This actually was quite fortunate for the nurse even said that if Evee had been scheduled for the MRI the next day she would not have been able to get it because of the fever. This made me a little nervous.
I was grateful that Evee was able to get the MRI, but it also felt as though it was a tender mercy from the Lord that she didn't get the fever beforehand. I felt that timing with the MRI, the ultrasound screen, the appointment with a urologist, had been put into place by the Lord to help us discover the tumor. I'm not sure of the outcome of everything, but I do know that He put into place the steps necessary for us to find out this information.
They gave Evee some Tylenol, then waited to see if her temperature would go down. If not, it could be a sign of some sort of problem- so they wanted to be sure.
It took longer than they would have liked for her temp to go down, and when it did start to go down, it wasn't very significant. Evee was also on oxygen, but every time they would try to take her off of it, her pulse ox would go down. The anesthesiologist was debating whether to keep Evee overnight, even just for observation. Her biggest hold up was the fact that I had Iralee. I was grateful that the doctor was mindful of our situation, but she even said that ultimately she wanted to make sure that Evee was okay. Very good doctor.
Just after 4 o'clock, the doctor wanted to take some blood samples to test for different things. We had to take Evee into the sedation room to do this. Since it was just a few doors down, I left Iralee in Evee's room. While we were gone, Todd had gotten back to the hospital. When he found Evee's room empty, and Iralee still in there, he feared the worse. Evee sure has done a number on our nerves.
Fortunately Todd soon found us. Our Oncologist had asked that we bring the MRI images to her office before 5 so that they could look at them. After discussing Evee's situation with Todd, I ran the DVD with the images over to UH hospital to Dr. P's office. I felt hurried and stressed. I was hoping that Evee's temp would improve and more that the MRI would show a tumor with a lot of fat cells.
When I got back to the CCF hospital, I went to Evee's room and found it empty, bed stripped of sheets and all. I finally located the nurse that was helping us, and she told me that Evee was taken upstairs for just a little more observation. Since I was unsure of the directions, this kind nurse escorted me.
When we got to the front desk upstairs, the women at the desk informed me that my boys were in the children's waiting room just off to the side. Then they went on and on about how impressed they were with how good and patient the boys were being. I was happy that the boys were being mature and cooperative during this whole thing.
I got to Evelyn's room and discovered that the Princess was doing very well. She was happily eating a bottle and interacting with Todd as she normally does. Her temp had gone down, and after the doctor checked on her again, we were being discharged.
We left the hospital around 6:30. It had been a long day, a day where our boys had to be patient, and they were. A day where I felt as though I was going between the two girls, nursing one then comforting the other. I was ready to be home and to have a relaxing tomorrow.
On the drive home, Evee's breathing wasn't sounding good. It was more labored and she was wheezing. This continued through the rest of the evening.
Shortly after sending the boys to bed, I rocked Evee to sleep. Most of the time, Evelyn will stay awake for awhile during the rocking, but this evening, she quickly fell asleep. It was just after nine when I put her into her crib.
I put the pulse ox monitor sensor on Evee's foot as usual, and turned it on. For about a minute it read that her pulse ox was in the high 90's, but then it steadily went down.
Evelyn's pulse ox is known to go low, and I usually set her monitor to alarm at 87% so that I am not constantly being alarmed for a momentary low pulse ox. But this evening, her numbers went lower, and they didn't just pop into them for a second, they stayed low.
I called Todd into her room and inquired him about her pulse ox being in the low 80's or high 70's. He said that was not okay. Though she didn't sound like she needed it, we suctioned her many times, dropped a lot of saline bullets down her trach, but did not see any improvement. Todd finally decided to "bag" her. After having air forced into her, Evelyn's pulse ox would raise 5-10%, but then immediately would drop back down. Todd later told me that he was also concerned for when he "bagged" her, she didn't fight him and her heart rate stayed the same, that is not a good sign and could mean that her body didn't have enough energy to fight it, that she was shutting down.
Todd turned to me and said that we needed to take her into the ER. He told me that we would worry about the other kids later, but to just grab Iralee and go. Now.
I was glad that Todd was home, for I would never have known what to do, or when to call it. When we got to the ER Todd took Evee in while I parked the car and brought Iralee in with me while I tried to figure out who to contact about our kids.
I had previously warned my neighbors that this type of situation may occur, and they relieved me by saying that I could call them, but I got no answer from their phones. I was unsure of what to do next. I felt comfortable that my kids would be okay physically, they're all pretty independent, but I was worried about their emotional welfare if they were to discover Todd and I missing. I was not sure if they were still awake or had fallen asleep yet. I imagined one of them running out into the front yard, searching for us in the rain and darkness. In that moment I wished that we lived close to family. It was almost 10 o'clock on a school night, and I couldn't think of anyone that I could contact, that doesn't have kids, that I could call that late. I finally decided to ask my friend Melissa if she could help me find someone to go to my house. Though she has kids, Melissa decided to go to my house herself. I was so relieved and grateful. Melissa has enough that she has to take care of, but she was more than willing to help me.
When I came into Evee's room in the ER, I was surprised to see so many people. Many of the doctors and nurses that Todd works with came in to check on his little girl. Once in the ER, Evee started looking a lot better. Of course Todd claims that this is Evee's way to mock him, make him look like an idiot, but I saw how Evee was doing before we got there and I knew that things were not good nor normal.
A chest x-ray showed that Evee had Pneumonia. Great! They gave her some IV antibiotics. The doctor, obviously knowing Todd, let Todd choose what we were going to do. Normally a child coming in with pneumonia would need to stay at least overnight for observation, but because of her trach, Evee couldn't stay at that hospital's pediatric unit and would have to go downtown to the UH hospital. The doctor would normally send Evee downtown no matter what, but since he knew Todd and knew Todd's abilities, he felt comfortable sending Evee home to be monitored there as long as Evee's pulse ox improved.
If we had family in the area to help with the boys, we most likely would have gone downtown, but since we don't, and Todd had to work at 7 AM, and Evee was improving, we decided to bring her home. She got home around 1:30. Really. Long. Day.
The urologist called at 7:30 AM the next morning. Todd knew it wouldn't be great news, for they never call that early if it's good news.
The tumor does not have fat cells, so it is not the AML (good) tumor. According to the urologist, because of it's placement on the kidney, it would be a very invasive surgery, Evee would need cardiac and pulmonary clearance. The surgery would need to have a urologist involved because one small little nick in the wrong direction and Evee could loose her kidney. She went on to say that it needed to come out immediately. Todd inquired on how soon, letting her know that Evee was just diagnosed with pneumonia, and she replied with, "It doesn't have to be this week, but by early next week it needs to be done." Not comforting news.
Thursday morning we had an appointment with the Oncologist. Just when we were about to leave the house for the appointment, Dr. P, the oncologist, called. She had sent over the MRI results and information to the Pediatric General Surgeon, Dr. B, (who has done surgery on Evee before and we love him), and to the UH Urologist. They have never dealt with a situation like this, with a tumor being discovered this small (good news), so they wanted every one's input. Dr. P is a Fellow (finished Residency and is now in a Fellowship where she is specializing in a field), and her Attending (finished with all training), who is quite mature in years, said that if this turns out being a Wilms tumor, it would be the smallest Wilms tumor he has ever seen. Dr. P told us to not worry about coming downtown for there was nothing that she couldn't tell us over the phone. She didn't have any other news until Urology and Surgery had looked at the case.
We waited and waited the next many days for an update. I'm not sure of what to say I was hoping for. I didn't necessarily want surgery, but then I don't understand tumors enough to say that I would feel comfortable just "monitoring' the tumor as well. There are so many things we are "monitoring" with Evee that sometimes it feels very overwhelming. And the word "tumor" is never one that I like to keep around and hear a lot.
I have been concerned about Evee having a tumor, but at this point, there's nothing I can do about it, so I have tried to not let it overwhelm me. There are moments I succeed, there are moments the tumor succeeds. Though there is a lot of worry, concern, and fear, I do feel at peace knowing that whatever is to happen is in the Lord's hands. I feel as though we are being guided through something, something that I am not sure of the outcome nor the route, but that we are in motion of what the Lord has in store. He is mindful of us, none of this is a surprise to him. I'm not sure if I am adequately expressing my thoughts and feelings, but while talking to Todd about them, we discovered that we both felt the same way. We are not trying to control the situation nor avoid it, but rather accepting it with blind faith.
A week later Dr. P called. The UH Urologist agreed that the placement of the tumor warranted it's need to be removed. From what Dr. P was telling me, it seemed to be that it would be a minor surgery (hoping for that). But because this was something that they had never encountered, the Urologist wanted Evee's case to be presented at the upcoming tumor conference the next week. A tumor conference (from what I understand) is some sort of staff meeting where different doctors get together and discuss cases that were puzzling or needing some input from different specialists and experiences. Dr. P said that the Urologist didn't feel as though this was an emergency surgery so we had the luxury of waiting for this conference. Not an emergency surgery, that sounds awesome. I then asked Dr. P what should I expect as far as a timeline, would this surgery be done in the next couple of weeks, next couple of months? Dr. P informed me it would be in the next couple of weeks.
So now we find ourselves, we know there is an impending surgery in the near future, but when? Not only do we not have a date, we don't have a lot of information as far as what to expect for the surgery, how the recovery would be, and we won't know any more until we hear of what was discussed and decided at the conference.
October 25th
The tumor conference occured. The Oncologists, Urologist, and General Surgeon were all there. They had decided that the risks involved in taking out her tumor outweighed the benefits, so at this time they were going to just monitor it, by ultrasound, every 8 weeks.
I could not believe how much lighter I felt. I did not realize how much this had been on my mind and how concerned I had been about it. Everything in life seemed to be better. It was the right choice, I hope.
December 10th
Evee's Pediatrician had explained to me that usually, if they had found this tumor in a completely healthy child (one with out complications), they would have removed the tumor without any hesitation. He said this was because even though the tumor is small, it poses a risk of spreading. But when you have a case like Evelyn, with already having several abdominal surgeries, history of surgery complications, and a trach, the doctors aren't so apt to just get the knife out, but if the tumor gets much bigger, we'll have to do the surgery.
Evee had her first ultrasound screening since the Tumor Conference. I was very anxious about this ultrasound. What if we had made the wrong decision and the tumor had grown and spread? It was nothing less than an internal celebration when I was told that the tumor had not grown. Best. News. Ever. I felt so happy, so relieved. Again I had found myself, trying to prepare myself for a possible upcoming surgery, but now felt as though we can continue without too many worries. We could celebrate Christmas without the gloom of surgery hanging over our heads.
I realize that at some point this tumor will probably need to be taken out, but the time is not yet. I am grateful for great doctors that are not so quick for physical intervention, but are really looking at the complete picture. Things are good.
My only concern about this Urology appointment was my pregnancy. The appointment was scheduled several days after my due date. I thought for sure that the day of the appointment would be the day I would go into labor. I did have a back up plan in mind, so that is probably why I didn't go into labor....well, that and I feel that it was Divinely orchestrated.
For the appointment we first went to the imaging department in the basement where Evee got an ultrasound of her abdomen, most specifically her bladder and kidneys. The tech spent some time getting pictures, then when she was finished she told us to sit tight as she conversed with the Radiologist, to make sure she got all of the right pictures.
After the tech left the room, Todd joked that we don't fall for that trick anymore. It usually is not a good sign when the tech needs to "consult the doctor" before you can leave the room. But hey, what could be wrong, so I just lied on the bed next to Evee for I was one tired prego mom. It was hard to be left in that room, with an ultrasound machine and a doctor (Todd) who knew how to run it, and not have him use it to find out the gender of our baby. But I figured I had waited this long, I can wait just a little longer.
After what seemed forever, the tech came in and said that she got all that was needed and that we could go up to our appointment.
All of this was done at Cleveland Clinic. If you need to know where something is at Rainbows/University Hospitals, I can show you around, I can get anywhere there. But at Cleveland Clinic? No way. I do not know my way around that place very well, yet.
As we were walking the halls of the basement, attempting to follow the directions the tech gave us, we passed a nurse in scrubs. Seeing that we didn't look confident in where we were going, she turned around and escorted us to our destination. I was incredibly touched by her kindness for she went way out of her way to take us to where we needed to be.
For Evee's appointment she had to do some bladder tests, which included x-rays. Because of this, I chose to leave the room and have Todd be with her. After everything was done, the Urologist, Dr. R, escorted me back into the room.
Dr. R showed us the results of the test, which included a lot of squiggly lines that made no sense to me. Dr. R said, "So the bladder is working fine." But then she followed that with, "that's the good news"
X-CUSE-ME!
Not really sure of what she was going to say, and seeing that I not only have gotten really good at taking bad news but tend to under-dramatize things, I listened to what she had to say next, but I didn't put a whole lot of stock into it.
Dr. R explained that they found a mass on one of Evee's kidneys. She quickly said that it most likely was an AML tumor, something that is not a big deal at all, that usually just is monitored but doesn't usually cause any problems. Dr. R mentioned that she looked at Evee's MRI from August and was able to see the tumor in one of the shots, but the Radiologist missed it most likely because he was focused on the head and spine. Dr. R said that an MRI would give us the most information about the tumor, and that she was fine with waiting until Evee's next scheduled MRI (in February) to take a closer look at it.
Then she mentions that the only thing we must be careful about is the fact that because of Evee's genetic syndrome she is more predisposed to getting Wilms tumors, even though Dr. R was fairly certain it was an AML tumor (much better). When Dr. R mentioned the Wills tumor I realized that this was something I would need to talk to Evee's oncologist about, that the Wills tumor was something that we screened for by ultrasound every 3 months. I mentioned this to Dr. R and Dr. R offered to call the Oncologist, which I was grateful for for I wasn't sure I could relay all the information correctly.
Todd and I left the office, me feeling fine and Todd with his head down. I asked Todd why he was so upset. He said, "Because our daughter has a tumor"
"No, she only has a mass" I replied.
Todd looked at me, "Same thing".
Oh, I guess I knew that, but the word "tumor" just sounded worse to me.
The next day, after I had gotten home from the midwife's appointment but before my water broke, Dr. R called us. Todd had answered the phone. When he got off, his spirits were low.
After talking to the Oncologist, Dr. R's tone had changed. Though she was hoping for the tumor to be an AML tumor, it was more likely to be a Wilms tumor. According to Todd, Dr. R seemed much more concerned and there was an urgency in her voice. She said that Oncology would be contacting us and that they would be wanting to see Evee that week.
As Todd and I discussed what was said, I mentioned that Evee had her ultrasound screen just in July, they had seen nothing, and in just one month's time, it was showing up on the MRI. As all of this sunk in, we began to cry. We hadn't given up hope that it just may be nothing, but the realization that Evee was still not "out of the woods" hurt. We tried comforting each other as Evee was in our laps. We were comforted, but dealing with the unknown can be difficult.
Less than fifteen minutes before I delivered Iralee, Dr. M, the Oncologist, called. It was really difficult to deal with the physical, emotional, and mental pain of labor and yet try to have this important phone call come through. As I listened to Todd, I was not comforted by Todd's question of "Why the urgency?"
Dr. M wanted Evee to get an MRI. He wanted one the next week. We couldn't get one the next week, and had to settle for one the following week. We need to have a better idea of what we are dealing with, and an MRI should show whether it's an AML tumor or a different type of tumor.
While in discussion with one of Dr. M's fellows, Dr. P (love her), Todd asked what the course of action would be if it was thought to be a Wilms tumor. Dr. P said that the good news is that Wilms tumors usually respond well to chemotherapy, so that would be our first plan of action. I was very disturbed when Todd told me this. I asked about surgery and Todd pointed out that surgery may end up hurting her kidney more than necessary.
I do not like the idea of my little girl going through chemo. I have two aunts that had breast cancer and I know the chemo was the worst thing about the whole ordeal. I remember visiting one of my aunts while she was going through it. She was so weak and sick. And she was a grown woman! I can't imagine my little girl going through the same thing.
October 16
Yesterday Evee had her MRI to check out the tumor. The MRI was downtown, had to be there in the morning. The boys also had a homeschool class at the Natural History Museum just a mile away from the hospital at 1, so we brought the boys with us. While we were checking in and getting everything taken care of, the boys watched some shows on the iPad in the lobby. I was very happy for their behavior was awesome. I had many people compliment the boys on how good they were.
Checking in and getting ready for the anesthesia and MRI was pretty painless. I was impressed with how well Evee did, especially since she was fasting. Iralee was really good, pretty much just slept, ate, and pooped all day.
After Evee was finally taken back, around 11 AM, we took the boys to eat at the cafeteria and then explore the huge hospital grounds. Just before 1, Todd took the boys to the museum as I continued to wait for Evee to be done. A short time later, I was called back to the recovery room.
Evee looked great. She was tired and hungry, but good. She fell asleep a couple of times, I was grateful that she was getting some peaceful rest and it gave me the opportunity to feed Iralee without any problems.
Around 2 PM we were getting ready to be discharged. I had signed the discharge papers and all that was left was waking up Evee and pulling out her IV. I had just finished feeding Iralee when I noticed how flushed Evee was looking. She also felt hot. I asked the nurse to take her temperature. 102 degrees. Not good.
It was speculated that some bug was just manifesting itself, that Evee was getting sick but it just didn't show until that moment. This actually was quite fortunate for the nurse even said that if Evee had been scheduled for the MRI the next day she would not have been able to get it because of the fever. This made me a little nervous.
I was grateful that Evee was able to get the MRI, but it also felt as though it was a tender mercy from the Lord that she didn't get the fever beforehand. I felt that timing with the MRI, the ultrasound screen, the appointment with a urologist, had been put into place by the Lord to help us discover the tumor. I'm not sure of the outcome of everything, but I do know that He put into place the steps necessary for us to find out this information.
They gave Evee some Tylenol, then waited to see if her temperature would go down. If not, it could be a sign of some sort of problem- so they wanted to be sure.
It took longer than they would have liked for her temp to go down, and when it did start to go down, it wasn't very significant. Evee was also on oxygen, but every time they would try to take her off of it, her pulse ox would go down. The anesthesiologist was debating whether to keep Evee overnight, even just for observation. Her biggest hold up was the fact that I had Iralee. I was grateful that the doctor was mindful of our situation, but she even said that ultimately she wanted to make sure that Evee was okay. Very good doctor.
Just after 4 o'clock, the doctor wanted to take some blood samples to test for different things. We had to take Evee into the sedation room to do this. Since it was just a few doors down, I left Iralee in Evee's room. While we were gone, Todd had gotten back to the hospital. When he found Evee's room empty, and Iralee still in there, he feared the worse. Evee sure has done a number on our nerves.
Fortunately Todd soon found us. Our Oncologist had asked that we bring the MRI images to her office before 5 so that they could look at them. After discussing Evee's situation with Todd, I ran the DVD with the images over to UH hospital to Dr. P's office. I felt hurried and stressed. I was hoping that Evee's temp would improve and more that the MRI would show a tumor with a lot of fat cells.
When I got back to the CCF hospital, I went to Evee's room and found it empty, bed stripped of sheets and all. I finally located the nurse that was helping us, and she told me that Evee was taken upstairs for just a little more observation. Since I was unsure of the directions, this kind nurse escorted me.
When we got to the front desk upstairs, the women at the desk informed me that my boys were in the children's waiting room just off to the side. Then they went on and on about how impressed they were with how good and patient the boys were being. I was happy that the boys were being mature and cooperative during this whole thing.
I got to Evelyn's room and discovered that the Princess was doing very well. She was happily eating a bottle and interacting with Todd as she normally does. Her temp had gone down, and after the doctor checked on her again, we were being discharged.
We left the hospital around 6:30. It had been a long day, a day where our boys had to be patient, and they were. A day where I felt as though I was going between the two girls, nursing one then comforting the other. I was ready to be home and to have a relaxing tomorrow.
On the drive home, Evee's breathing wasn't sounding good. It was more labored and she was wheezing. This continued through the rest of the evening.
Shortly after sending the boys to bed, I rocked Evee to sleep. Most of the time, Evelyn will stay awake for awhile during the rocking, but this evening, she quickly fell asleep. It was just after nine when I put her into her crib.
I put the pulse ox monitor sensor on Evee's foot as usual, and turned it on. For about a minute it read that her pulse ox was in the high 90's, but then it steadily went down.
Evelyn's pulse ox is known to go low, and I usually set her monitor to alarm at 87% so that I am not constantly being alarmed for a momentary low pulse ox. But this evening, her numbers went lower, and they didn't just pop into them for a second, they stayed low.
I called Todd into her room and inquired him about her pulse ox being in the low 80's or high 70's. He said that was not okay. Though she didn't sound like she needed it, we suctioned her many times, dropped a lot of saline bullets down her trach, but did not see any improvement. Todd finally decided to "bag" her. After having air forced into her, Evelyn's pulse ox would raise 5-10%, but then immediately would drop back down. Todd later told me that he was also concerned for when he "bagged" her, she didn't fight him and her heart rate stayed the same, that is not a good sign and could mean that her body didn't have enough energy to fight it, that she was shutting down.
Todd turned to me and said that we needed to take her into the ER. He told me that we would worry about the other kids later, but to just grab Iralee and go. Now.
I was glad that Todd was home, for I would never have known what to do, or when to call it. When we got to the ER Todd took Evee in while I parked the car and brought Iralee in with me while I tried to figure out who to contact about our kids.
I had previously warned my neighbors that this type of situation may occur, and they relieved me by saying that I could call them, but I got no answer from their phones. I was unsure of what to do next. I felt comfortable that my kids would be okay physically, they're all pretty independent, but I was worried about their emotional welfare if they were to discover Todd and I missing. I was not sure if they were still awake or had fallen asleep yet. I imagined one of them running out into the front yard, searching for us in the rain and darkness. In that moment I wished that we lived close to family. It was almost 10 o'clock on a school night, and I couldn't think of anyone that I could contact, that doesn't have kids, that I could call that late. I finally decided to ask my friend Melissa if she could help me find someone to go to my house. Though she has kids, Melissa decided to go to my house herself. I was so relieved and grateful. Melissa has enough that she has to take care of, but she was more than willing to help me.
When I came into Evee's room in the ER, I was surprised to see so many people. Many of the doctors and nurses that Todd works with came in to check on his little girl. Once in the ER, Evee started looking a lot better. Of course Todd claims that this is Evee's way to mock him, make him look like an idiot, but I saw how Evee was doing before we got there and I knew that things were not good nor normal.
A chest x-ray showed that Evee had Pneumonia. Great! They gave her some IV antibiotics. The doctor, obviously knowing Todd, let Todd choose what we were going to do. Normally a child coming in with pneumonia would need to stay at least overnight for observation, but because of her trach, Evee couldn't stay at that hospital's pediatric unit and would have to go downtown to the UH hospital. The doctor would normally send Evee downtown no matter what, but since he knew Todd and knew Todd's abilities, he felt comfortable sending Evee home to be monitored there as long as Evee's pulse ox improved.
If we had family in the area to help with the boys, we most likely would have gone downtown, but since we don't, and Todd had to work at 7 AM, and Evee was improving, we decided to bring her home. She got home around 1:30. Really. Long. Day.
The urologist called at 7:30 AM the next morning. Todd knew it wouldn't be great news, for they never call that early if it's good news.
The tumor does not have fat cells, so it is not the AML (good) tumor. According to the urologist, because of it's placement on the kidney, it would be a very invasive surgery, Evee would need cardiac and pulmonary clearance. The surgery would need to have a urologist involved because one small little nick in the wrong direction and Evee could loose her kidney. She went on to say that it needed to come out immediately. Todd inquired on how soon, letting her know that Evee was just diagnosed with pneumonia, and she replied with, "It doesn't have to be this week, but by early next week it needs to be done." Not comforting news.
Thursday morning we had an appointment with the Oncologist. Just when we were about to leave the house for the appointment, Dr. P, the oncologist, called. She had sent over the MRI results and information to the Pediatric General Surgeon, Dr. B, (who has done surgery on Evee before and we love him), and to the UH Urologist. They have never dealt with a situation like this, with a tumor being discovered this small (good news), so they wanted every one's input. Dr. P is a Fellow (finished Residency and is now in a Fellowship where she is specializing in a field), and her Attending (finished with all training), who is quite mature in years, said that if this turns out being a Wilms tumor, it would be the smallest Wilms tumor he has ever seen. Dr. P told us to not worry about coming downtown for there was nothing that she couldn't tell us over the phone. She didn't have any other news until Urology and Surgery had looked at the case.
We waited and waited the next many days for an update. I'm not sure of what to say I was hoping for. I didn't necessarily want surgery, but then I don't understand tumors enough to say that I would feel comfortable just "monitoring' the tumor as well. There are so many things we are "monitoring" with Evee that sometimes it feels very overwhelming. And the word "tumor" is never one that I like to keep around and hear a lot.
I have been concerned about Evee having a tumor, but at this point, there's nothing I can do about it, so I have tried to not let it overwhelm me. There are moments I succeed, there are moments the tumor succeeds. Though there is a lot of worry, concern, and fear, I do feel at peace knowing that whatever is to happen is in the Lord's hands. I feel as though we are being guided through something, something that I am not sure of the outcome nor the route, but that we are in motion of what the Lord has in store. He is mindful of us, none of this is a surprise to him. I'm not sure if I am adequately expressing my thoughts and feelings, but while talking to Todd about them, we discovered that we both felt the same way. We are not trying to control the situation nor avoid it, but rather accepting it with blind faith.
A week later Dr. P called. The UH Urologist agreed that the placement of the tumor warranted it's need to be removed. From what Dr. P was telling me, it seemed to be that it would be a minor surgery (hoping for that). But because this was something that they had never encountered, the Urologist wanted Evee's case to be presented at the upcoming tumor conference the next week. A tumor conference (from what I understand) is some sort of staff meeting where different doctors get together and discuss cases that were puzzling or needing some input from different specialists and experiences. Dr. P said that the Urologist didn't feel as though this was an emergency surgery so we had the luxury of waiting for this conference. Not an emergency surgery, that sounds awesome. I then asked Dr. P what should I expect as far as a timeline, would this surgery be done in the next couple of weeks, next couple of months? Dr. P informed me it would be in the next couple of weeks.
So now we find ourselves, we know there is an impending surgery in the near future, but when? Not only do we not have a date, we don't have a lot of information as far as what to expect for the surgery, how the recovery would be, and we won't know any more until we hear of what was discussed and decided at the conference.
October 25th
The tumor conference occured. The Oncologists, Urologist, and General Surgeon were all there. They had decided that the risks involved in taking out her tumor outweighed the benefits, so at this time they were going to just monitor it, by ultrasound, every 8 weeks.
I could not believe how much lighter I felt. I did not realize how much this had been on my mind and how concerned I had been about it. Everything in life seemed to be better. It was the right choice, I hope.
December 10th
Evee's Pediatrician had explained to me that usually, if they had found this tumor in a completely healthy child (one with out complications), they would have removed the tumor without any hesitation. He said this was because even though the tumor is small, it poses a risk of spreading. But when you have a case like Evelyn, with already having several abdominal surgeries, history of surgery complications, and a trach, the doctors aren't so apt to just get the knife out, but if the tumor gets much bigger, we'll have to do the surgery.
Evee had her first ultrasound screening since the Tumor Conference. I was very anxious about this ultrasound. What if we had made the wrong decision and the tumor had grown and spread? It was nothing less than an internal celebration when I was told that the tumor had not grown. Best. News. Ever. I felt so happy, so relieved. Again I had found myself, trying to prepare myself for a possible upcoming surgery, but now felt as though we can continue without too many worries. We could celebrate Christmas without the gloom of surgery hanging over our heads.
I realize that at some point this tumor will probably need to be taken out, but the time is not yet. I am grateful for great doctors that are not so quick for physical intervention, but are really looking at the complete picture. Things are good.
Friday, November 15, 2013
Life's Mysteries
We have solved the age-old question of what came first, the chicken or the egg. Yep, we are just that awesome that we could figure this out. This is how the truth unfolded to us:
While eating eggs at breakfast, Todd asked what Ma from Little House on the Prarie had made for breakfast each morning. I told him the couple of things that were mentioned in the books.
"Didn't they eat eggs every morning?" Todd asked.
"No." I replied.
Before I was able to tell Todd that they didn't own any chickens, Grant responded with, "Besides, don't you know that eggs weren't even invented yet!"
There you go- chickens were mentioned in the Bible, but no eggs in Little House on the Prairie. Obviously the chicken came before the egg. But then I do wonder just when the egg was invented.
While eating eggs at breakfast, Todd asked what Ma from Little House on the Prarie had made for breakfast each morning. I told him the couple of things that were mentioned in the books.
"Didn't they eat eggs every morning?" Todd asked.
"No." I replied.
Before I was able to tell Todd that they didn't own any chickens, Grant responded with, "Besides, don't you know that eggs weren't even invented yet!"
There you go- chickens were mentioned in the Bible, but no eggs in Little House on the Prairie. Obviously the chicken came before the egg. But then I do wonder just when the egg was invented.
Thursday, October 31, 2013
Happy Halloween
1- Ward Trunk-or-Treat
2- Homeschool Hangout Halloween crafts (Thanks to Jenn)
3- Halloween Hayride at Lake Farm Parks (Awesome. The girls and I stayed home this year while the boys went. Good thing too for it was windy and sleeting and freezing)
4- Trick-or-Treating in the neighborhood
Okay, that may have been more than I thought we were doing
Not wanting to worry about my kids' costumes after having a new baby, I attempted to get all of my kids' costumes picked out before I had Iralee. I say attempted for I was successful, kind of.
My mom had gone shopping with Mikey and Roger to pick out their costumes. Mikey had picked out a dinosaur costume. But once he was home and tried it on, it was awkwardly too small. Mikey liked it, so I tried being accepting of it. But I eventually decided that Mikey was too old to go around looking awkward. Just before the Trunk-or-Treat, we went to the store and got him a new costume.
This year for Halloween we had:
A Jedi Knight
 |
| It was windy and raining during Trick-or-Treating |
It was scary
Evee sat in her Bumbo-like seat for over an hour!
After we were all done with Trick-or-Treating, the boys got out of their wet costumes and into their pajamas. Our tradition is to watch a movie while the kids have free-reign to eat all the candy that they want in hopes that we won't have candy around our house for the next year.
This year we watched the 2nd Harry Potter. The boys were super excited about this, especially since the older three have read it. William just finished it yesterday so it was still very fresh in his mind. The three younger boys got a little nervous near the end, but then Grant exclaimed "This isn't even real! You can't turn people to stone and have them not turn gray!" Wow, glad he has a good grip on reality.
Tuesday, October 29, 2013
Lawn Service
Mikey (though I should say Mike or Michael as we are trying to get away from "Mikey") has always been a very obedient boy. It is amazing how good he is at making sure he gets his chores done. If I ask him to do something, he'll do it. He was sent to our family to help us, to be a good example.
Todd was doing yard work and decided it was time to start teaching Mikey about mowing the lawn. He wasn't going to have Mikey actually mow the lawn, just help.
Imagine my surprise when I look out the kitchen window and see this
Way to go, Mikey!
Todd was doing yard work and decided it was time to start teaching Mikey about mowing the lawn. He wasn't going to have Mikey actually mow the lawn, just help.
Imagine my surprise when I look out the kitchen window and see this
Friday, October 25, 2013
Newborn in Our Home
A short time later, Grant came in. As he was rubbing the sleep from his eyes, he too asked about Iralee. I pointed her out to him. The look of love on his face was amazing. He leaned over to kiss his new little sister. He was more giddy than he has ever been for any Christmas or birthday. It was so nice having Iralee at home, so wonderful having the peaceful moments of joy of seeing my children overcome with excitement because of our new little angel.
I have to admit that I may be in some sort of denial. I think that the nights aren't that bad, that Iralee lets me sleep a lot, but then I remember that last night I was up for almost two hours with her. Todd says that I'm just taking after my Grandma Wilma, who was known as being unbelievably, and sometimes inappropriately, optimistic.
Even with the sleepless nights, I really enjoy newborns. I love how much they slow down your life. I love how little and fresh they are. I love how I, as a parent, have made very few parenting mistakes with a newborn. I love how they smell. I love how soft they are. I love how solemn they are. Though I am the one waking up throughout the night, and even though I am the one with a sore chest and body, I feel badly for Todd and feel fortunate for myself. No one gets to hold their newborn as much as a mother does. With all of the feeding and such, I get a guaranteed 20 minutes every couple of hours to hold this angel. Everyone else has to wait between feedings, changings, and naps.
Iralee has really been quite an easy baby. I do realize that a lot of the ease is because she's my sixth, not my first. With my first, I ran to every squeak, ended up waking the poor baby, then wondering why he didn't sleep very much. With Iralee I am much more calm, though I keep moving her blanket to uncover her trach only to remember that not all baby's have trachs.
There have been a few times, especially in the evenings, when Todd's at work and Evee doesn't have a nurse, when I have had a difficult time caring for both, especially when their hungry and/or tired. I have had to go between babies, each having to cry more than I would like because my care for the other one takes time as well. So far, I have survived, and last I checked, so did my sanity.
Evee is warming up to her sister. She still doesn't welcome her with open arms
...in fact, she elbowed Iralee in the head today (on accident, hopefully),
One evening, when I was on the couch with both girls, one in each arm, they both fell asleep as we were waiting for the night nurse to arrive. I couldn't move for either girl would not be able to hold themselves. I finally discovered that if I nudged a pillow into place, I could get my arm out from under Evee. Once free I decided to place Iralee in Evee's arms. The outcome was beautiful.
The next morning I told Evee about the whole thing, told her that I caught her holding her baby sister, to which she responded with a shake of the head, denying everything. Okay, she shakes her head at everything, so that's no real surprise.
Iralee planned the timing of her birth perfectly. My mom was able to come and spend a few fun days with us beforehand, then was here for a week afterwards. I am really grateful for her visit, not only did we have a great time being with her, but she was very helpful. She cooked, she cleaned, she played with the boys, and she let me rest. I was really sad to see her go, but felt that she helped me when I needed it the most and that I could do it from that point.
I have really enjoyed having my new baby girl. It's great to have a baby that the boys can actually hold for they were never really allowed/able to hold Evee much. The boys love both of the Princesses in our home, and they have shown it.
I am always telling my kids to stop growing. While having a discussion with Mikey about this, I told him that he's my baby, and though I love seeing him progress and grow, it still makes me sad that he's not a baby anymore. He told me that it was a good thing that I had two babies. I pointed out that though I had two babies, neither of those babies is Mikey, that each child is very special to me regardless of how many others I have.
Mikey then said to me, "Mom, I think I understand how much you love your kids".
"Ya? Why is that?"
"When you popped Iralee out, you were so happy, you were crying, and you kept saying 'My baby. My baby', you love Iralee... a lot."
"Yes, and I have that same love for you."
It was awesome to see that Mikey understood to some extent my love for him, that he got to see some very real, raw emotion from me about my feelings towards my children, that he got to see that he is special. And the truth is, they all are special. Even though Iralee hasn't been in our lives for very long, I love her just as much as I do any of the others. Even though we've given Evee a lot of extra special attention, my love for her is the same. My love and relationships with each child is different, but the amount of love, the amount of sacrifice I would give for them, it is very much the same.
Being a mom is hard, it is frustrating, it is tiring, it can be very boring, but it is also the most incredible experience. I am so grateful, even though I do not always act that way, for this experience.
We also decided to spell Iralee's name with a lower case L, we feel it looks better and causes less of a pause between Ira and Lee, for it is one quick Iralee.
Subscribe to:
Comments (Atom)
