In the October 2012 General Conference Neil L. Andersen gave a talk, "Trial of Your Faith". "Like
the intense fire that transforms iron into steel, as we remain faithful
during the fiery trial of our faith, we are spiritually refined and
strengthened."
Sometimes things happen when we least expect them. We don't understand why they happen, but they do. We may think at times the journey is too long with out an end. We may think it is hard to walk the straight and narrow path. At times we feel all is lost and we can't go on any longer. You can either lose hope or fight for it. We may waiver at first but we must stand firm, steadfast, and immovable.
Sometimes things happen when we least expect them. We don't understand why they happen, but they do. We may think at times the journey is too long with out an end. We may think it is hard to walk the straight and narrow path. At times we feel all is lost and we can't go on any longer. You can either lose hope or fight for it. We may waiver at first but we must stand firm, steadfast, and immovable.
It's like any other Sunday, except we are just in time. Not early enough so we have to sit in the very back. That's a little disappointing since Eliana loves to run around the gym and it's difficult to get her to sit down. She's just a very hyperactive child. We block her off with chairs and give her snacks. We just hope it's enough to hold her down. Liam like always is asleep and being a good boy but I thought by now he would be crying. It's time for him to eat. It's been 45 min and sacrament is almost over. We check Liam because he's covered with a blanket. He's awake and hadn't made a sound. So I take him out and take him to change his diaper and feed him.
I walk into the mother's lounge and there is another sister feeding her baby. So I do the usual to prep to feed him. He begins to cry as I lay him in my lap. The usual. After I am done feeding him he seems happy. I am walking towards the door when the other sister picks her baby up to burp him and the baby coughed right in Liam's face as I walk past them. Great! I think. I feared he'd get sick at church.
When I make it back to our seat, sacrament is over and I tell Casey what happened. "If he gets sick we'll know why." The rest of the afternoon Liam just seemed fussy. He wanted to be held and not laid down. I get it. I'd be very angry if I wasn't being held. I mean come on I can't do anything for myself. I pick him up, a lot.
I went to bed worried about the cough and I mentioned it to Casey many times. "I have a feeling he is going to get sick Casey."
It's Monday morning, 2 am to be exact and Liam begins to scream out of no where. He's a baby, so like every parent and baby we think he's hungry. Casey has helped a lot even with school and work, he's just an awesome husband and dad. He fixes Liam a bottle. I usually breastfeed him in the middle of the night but I was too tired to move. As Casey brought Liam up to burp I heard a sound and Casey said "AUGH!" I jumped out of bed like never before and turned the light on. Liam had projectile vomited what he had just eaten. All of it. I had some on myself, the bed sheets were soaked and we had to change them. Casey changed every clothing piece on himself because he was drenched. The carpet had some as well. Luckily Eliana was not woken up. We thought maybe we over fed him. Casey did fix him more after he had finished the first bottle. I also brought up the cough from earlier.
Liam ate a couple of times more after that but didn't have the same reaction. Maybe we overfed him or the milk was too warm for his taste. Casey left for school at 8:30 am. The usual thing happened. Casey asked if I could get on the computer and send him a file he needed. So at about 10:20 am I fixed Liam a bottle and fed him while I searched for the file. Eliana was playing with her toys and watching Mickey Mouse Club. Then I heard a sound and at the same time I was hit in the face with vomit. Liam had just projectile vomited through his nose. That's not normal. I text-ed Casey "call me asap." Casey called and I explained what happened. He came home early. I tried calling my mom. I know she is busy so it doesn't surprise me that she didn't answer. I call my dad several times, he usually answers but nothing. I called my brother, no answer. I call their home, nothing. Casey called his mom at the same time I text-ed asking if she had gone through this before. She suggest calling the Dr.. Casey was on top of that like the great husband and dad that he is. The lady that answered suggested to just keep an eye on him, feed him 2 oz every two hours to keep him hydrated. My dad finally called me and I explained what happened. He suggested changing the formula. We did have many kinds so we did what they suggested and changed the formula. I also gave him Pedialyte. Liam was able to keep the formula down but it didn't go so well with the Pedialyte.
After another feeding Liam vomited the
formula. But this isn't normal. It's not just spit up, it's not just
throw-up, it's projectile vomit. He had never done this before. I check
him but there is no fever. He looks fine though. My mom thinks it could
be a tummy ache or some kind of digestive issue. Casey helped while I
begin packing things. We have been so stressed with Casey waiting to
hear back from Dental School. We may hear from them this week. I don't
like packing last minute, it's just so stressing so I am beginning to
pack things we no longer use and getting ready to move to Texas. The rest of the evening I hear Liam vomit
only 2 or 3 times. Again I bring up that maybe it was the little boy
that coughed. He is a month older than Liam and he was having a cough
attack in there. But still no fever. He's acting pretty normal to us.
Just wants to be held. I don't blame him if he's not feeling too well. I
begin to think maybe it's the formula. His tummy may just be tired of
it. I'm going to try to breastfeed exclusively. I may not have enough
but if it's the only way that will help him stop vomiting then so be it. Maybe we'll have a
better night.It's Tuesday 2 am and Liam is crying again. It's all of a sudden though. There's no fussing just straight up cry. I bring him to bed with me to breastfeed him and he falls asleep. No vomit. So far so good. The rest of the night we hear a high squeal but he falls back asleep. One of the times, by the time I brought him to bed with me he had fallen asleep again. Casey goes to school in the morning. Liam was doing great. So far no vomit, until about mid day. He begins to vomit once again. It's getting worse. His vomit doesn't come out at once. Now it's vomit vomit vomit. Then he falls asleep. I have noticed he seems very tired. He's usually kicking and flapping his arms. I begin to worry that he is going to get dehydrated. So we make an appointment with the Dr but it won't be til tomorrow and it will actually be with the Nurse Practitioner. She saw Eliana exactly a year ago and diagnosed her with Torticollis, so we trust her. Now all we can do is wait and hope he doesn't get worse.
It's Wednesday and he is still vomiting. It's a shorter distance that the vomit is traveling but they are becoming closer. They are now every other feeding. He seems so sleepy and he won't stay up very long. Usually we have to put him to sleep ourselves but he is sleeping on his own. No matter where we put him. This isn't him.
10:20 am and we are at the Dr office waiting. He's been asleep and it's almost time to eat so I take him to feed him. He kept the breast milk in until he was checked. It wasn't projectile though. It almost just seemed like a slow throw up. The Nurse Practitioner asks me what "projectile vomiting" meant to me because to them it has to hit the wall from across the room. To me it means vomiting in a non normal way hitting my face through his nose. The entire time he has vomited it's not like cottage cheese it is exactly how it goes in. Almost like it's not going into his stomach. He's beginning to look pale. We change him since he soaked his clothes but he is crying almost like he's in pain. But we are not hurting him. She checks him everywhere and says he seems fine. It sounds like he may have Pyloric Stenosis. It is more common among boys than girls and symptoms begin at about 6-8 weeks after birth. She doesn't feel anything that may indicate he has that but she says they can't always feel it. Sometimes it's there and they can't tell. She gets on the phone with the Dr. When she comes back she advices us to just keep an eye on him, if it gets to where he is vomiting every feeding take him to the ER. That's it?! You can't find anything wrong with him and you just send us home. He's sick and I know it. There has to be something they can do. He is not himself anymore. He won't stay awake very long. What can I do? Wait. Just wait. Heavenly Father what can I do? This doesn't feel right. Help me.
At home, things begin to get worse. He is vomiting every single time he eats. Sometimes it will be immediately after, other times he'll keep it for 2 hours. He has only had 3 wet diapers since we saw the Nurse Practitioner this morning and we're getting ready for bed. That's not good. I want to keep an eye on him so I decide Casey and I take turns watching him tonight. His movements are becoming different. He is very very sleepy and has no energy. He vomits every time he eats and falls right back to sleep. Then it's like he gets uncomfortable and begins to almost twitch. Maybe he has gas. Wait. He hasn't had a poopy diaper in a while. Maybe he is constipated. I sit and stare at him. I feel so sad that I can't do anything for him. I can't help him keep food down. He looks like he's losing a little weight. Heavenly Father help me find what's wrong with him. This isn't normal. Did he catch something from the other baby? What is it? I rub his head and just feel his hair. He slept for hours in my arms but I am tired and need sleep or at least lay down. He won't let me move. If I do he will squeal like he's in pain. I lay him on his sleeper and he is fine. So I lay down but keep watching him. Father, please help him. Help him keep something down. What can it be? He'll make some kind of sudden movement almost like he is startled. It's not new. He does that a lot, but now he squeals right after and falls straight to sleep. It's 4 am and I am tired so Casey gets up to keep an eye on him. I fall asleep.
It's Wednesday and I
feel like I've already lost track of time and days but things are
getting worse. Liam is no longer having normal wet diapers. I only see a
dime size spot of pee. He only had that a couple of times over night.
He no longer wants to stay awake. We get things ready and head to the
ER.It's 10 am and we walk into the ER. Besides us we only see one other person. They take our info and ask us to take a seat. Before we could sit our name was called. That was quick. They take his measurements and lay him to see his weight. He barely opens his eyes for anything. We are then taken into a room. It's 11:00 am and finally someone comes in and sees him.I show them the diaper where his pee has become concentrated, it almost looks like we drew on the diaper with a wet orange chalk. The nurse shrugs it off and says yea he may be dehydrated. Maybe?? The Dr. checks him and also says he MAY be dehydrated. Again maybe? They say his soft spot should be sunk in. I feel it. I don't feel a soft spot. It's pretty solid. He's not keeping anything down though. He wants to get Liam x-rayed to check for any kind of blockage that may be causing him to vomit but in the mean time they give him nausea medicine. He hasn't eaten and doesn't want to wake up. So I take him and try feeding him but he seems uninterested. Maybe he's not hungry yet? He eats but not a lot. At 11:20 they take him to get x-rayed. They x-rayed his chest and abdomen. For 2 hours no one came in except to check his vitals which were fine. Then I noticed his eyes were almost like bulging. So I point it out to the guy checking him and all he said was "Oh yea?" and kind of giggled it off. That didn't make me happy. We were thinking about calling the sister who was in the mothers lounge with the coughing baby. Maybe she can give us an idea of what to look for. The Dr. finally came in at around 1:30 pm. That was the longest two hours I have waited. All he said to us was "So we found something odd on the x-ray but we're not sure what it is. He may have whooping cough so we are going to give you a prescription that may help and the rest of the nausea medicine. We talked to your pediatrician and he will see you in the morning and check him."
We go to Walgreens to pick up his prescription and head over to get something to eat. "Casey...is the car empty on gas?" "Yeaaa I'll just fill it up tomorrow when I go to school." "No we are getting gas right now that we are out. You just never know when we run into an emergency." "Good point." I had obviously not taken a look at how much gas we had in a while. So we head home after filling up.
Liam is no longer interested in eating, he doesn't want to wake up, so we leave him on the bouncer in front of us and watch a movie. I still couldn't stop thinking about him. I was uncomfortable during the movie. I can't remember what we were watching. All this and I had forgotten it was my brothers birthday and Valentine's Day. So we eat while we watch the movie. Liam begins to vomit. But he's not stopping. It's not letting him breathe and he's now dry heaving. My heart starts to pick up it's pace. What can I do? The Dr. can't find what's wrong with him, my mom has no idea, and the ER sent us home. This isn't normal. Heavenly Father why can't they find what's wrong with him? We forget about the movie, don't even stop it and just take him into our arms and put him in a position where the vomit comes out instead of staying in or causing him to choke. Our carpet, our couch, many blankets, his clothes and both Casey and I have been vomited on. Right now none of that matters. What matters is what are we going to do, what can we do? This didn't happen with Eliana. It's the first time this has happened to us. We lay him on his sleeper and I am on the couch I hear him squeal, Casey comes out from the kitchen and says "Oh my gosh! How is he doing that?!" I immediately get up when I see it. It almost looks like he was making a "U" shape. He was on his left side, head back, back arched, arms stiff by his side, and legs arched back. I thought maybe his tummy is really bothering him because he's constipated. But that was something you see in a scary movie. Almost like he was being possessed.
Casey takes Eliana to bed. I can't stop staring at the little man and see that he is suffering. He is only comfortable in one position so I hold him for hours. He is beginning to open his eyes, but they are different. This isn't him. I change two dirty diapers in 15 minutes. Both have what look like the wet chalk and a blood clot. It's not blood. It's poop but the consistency of a blood clot. I call my mom and send her a pic. This is not normal. I get the feeling to search for "Brain Tumor". I do but don't want to think that's what it is so instead I search using 3 words. "constipated baby vomiting" and the first thing I see is "Brain Tumor." (I am not sure how I got to that site but I have been trying to find it once again and I can't.) I turned off my phone, lay him on the bouncer and go to the restroom.
I come back from the restroom and my aunt Imelda calls. Asks how Liam was doing. She said everything will be alright and I get off the phone. Then Liam's eyes are doing it again. They are bulging out, he's stiff. I pick him up and his back arches and both arms go back and his legs lift back and he squeals loudly. It stops and he falls asleep. I'm staring at him. He is pale white. I can tell he has lost weight, I can feel his ribs. His stomach is sunk in and his calves are nothing but bones now. I begin to feel fear. Fear like never before. He stops breathing, his body is loose. I move him. "Bubba?... bubba?" He almost looks startled for a couple of seconds. He begins to breathe. He opens his eyes, they look sunk in. His eyes go cross eyed, cock-eyed, or only one moves, and he can't seem to straighten them back. I call my mom "Mom his eyes are going cross eyed. Is that normal?" I lay him on the couch. He almost looks like he's no longer there. His breathing slows down. I can't help but begin to cry. "Mom he can't control his eyes, he's weak, what can I do?!" "Crystal, it's ok. He's weak. It's because he is weak." "No mom, this isn't normal. It's not normal. It's more than just because he is weak!" "Crystal you need to take him to the ER NOW!! Get Casey and leave NOW!!" I scream "CASEY!" but he had fallen asleep. "Casey we need to go to the ER NOW! Something is wrong with him!" I'm in tears. Casey jumps up and we go to the living room. I pick Liam up, he is so lifeless. I can tell I was losing him. He was going in and out. His eyes crossing, "Look at him!" while in tears. He's so pale and looks like he has a yellow pale color to it. I can't stop the crying. I can tell if we don't get help something terrible will happen. Casey calls the Dr. after hours. I begin to yell at him in my head.....Casey what are you doing? Can't you see we have no time?!! We get everything ready and head to Timp where we were told to go. Poor Eliana was just beginning to fall asleep. We get to the after hour clinic. After an hour they finally get us in a room. By the time the Dr. comes in, my Aunt Imelda had arrived to the hospital with her daughters and began waiting with me. She takes him into her arms. She sees him and tells me everything will be alright. He'll be ok. A part of me wants to believe it, but a part knows something is terribly wrong. I tell Casey in a soft voice..."If something happens to him and it permanently damages him I am suing those who sent me home."
The nurse checks him and agrees he doesn't look well. She gets the Dr. I tell her everything.
Liam by now has no control of his eyes, his body doesn't move, and it's
like he gets startled. At times only one eye moves. She looks at me (
I have tears in my eyes, I can't stop crying) "You need to get him
hospitalized. He is having seizures. He's definitely dehydrated. He has
no control of his eyes whatsoever...I'm afraid it's something
neurological." Tumor. Cancer. I begin to think. I cry even more. I knew it. I knew it was this bad. By
then he was having seizures every minute to two minutes. The Dr. puts
her hand on my shoulder. "I'm sorry. I know this is hard." After another
10 minutes, that felt like an eternity, we head to the ER
downstairs. They won't open the door. Casey has to run outside, around,
and open it for us. We are taken into a room where a lady walks in and
says "We need you to fill out some paperwork." Paper work? My son is
dying and you want me to fill out paper work???? Another nurse comes in
and takes us to another room where they cut his clothes off, do a spinal
tap, and draw some blood.There he was on the table. Very weak and I can't do anything for him. I still can't stop crying. The tears are just running down my cheek, one after another. He's being pricked in what feels like every single part of his body. I feel his pain. He's crying. A very weak cry. They ask if I want to sit. Only for a while. I can't take any more of it. The tears just keep drowning my face. Casey is there with me. My aunt and my cousin as well. There's so much going through my head right now and it's not letting me think. The Dr. comes to us " I know this is hard. I am really sorry. I think he may have Meningitis." Meningitis? The rest of what the Dr. says is just a blur. Meningitis? I have heard of it and I know that it can't be good. What's next? We are asked if we have family that can take care of Eliana. She's not allowed to be at the hospital. I am not allowed to fly with him. We have to meet them there. So many things are going through my head. Eliana. She hasn't stayed anywhere without us. I have never left her with anyone besides my parents or Casey's parents. What am I suppose to do? We finally figure things out even though my head is just not thinking straight.
It's 11:45 pm and I call my mom as
we are heading towards the car and explain what I was told. "But how
Crystal? He was fine." I can't stop crying. Before we get to the car I
fall to my knees. My boy. My baby boy. How can this be happening. Casey
helps me to the car, puts Eliana in the car and we head to our
apartment. In a hurry we grab everything and head to my aunt Imelda's
home. I begin to hyperventilate. It only
takes me seconds to realize I have a 15 month old in the back seat that
can't see me like this and a 3 month old that needs me. It is the first
time I manage to avoid passing out. Eliana was asleep when we got there
but as soon as I laid her down she woke up. She sensed we were leaving
her and began to cry like never before. It hurts me but we must leave.
On
our way to the hospital I have plenty of time to think. I can't stop
crying. The tears and the pain won't go away. My faith begins to
crumble. How can this be happening? He was a healthy baby. Why? Why me?
Why HIM? He is only a baby. He has so much to live for and I look
forward to it all. "Why Casey?" "I don't know baby." I can't stop crying
and it's becoming more and more. My heart is torn. I just left my baby
girl in an environment she is not used to. I am miles away from my little
man that is suffering and I can't do anything about it. I begin to
remember how much we were looking forward to his birth and having him in our arms. I
begin to remember the day he was born, Casey cutting his umbilical
chord, and receiving love from his sister. I begin to think the worst
and prepare myself. I don't want to lose him but I can
already feel a phone call and I prepare myself to say good-bye. We are
only half way there when we get a phone call. It's 12:30 am and they
arrived and are waiting for us. The next half of the drive felt like
hours. I felt like we were driving the opposite direction. "Casey what
else can it be? Besides meningitis?" Right now I think I prefer
something else over that. "I don't know baby. Some kind of blockage."
Tumor. Cancer. The tears are just coming and I wipe my tears away
and more follow. I felt alone. "How much longer Casey?" "25-30 min"
What? Anything can happen in that time. I can already hear them telling
us we are too late. All I can do is prepare myself for the worst.
"Casey, if I don't come home with him I don't know what I will do." He takes
my hand but I feel numb. I can't feel anything. If I come empty handed I
have to be strong. I have to move on. I have to be there for Eliana. Be
strong for her. But not now. Casey is the only one around. I'm allowed
to cry. I begin to think about my cousin who lost a 5 month old baby a
couple of years ago. I respect her for her strength and I told Casey at that time, "I
don't know what I would do if something like that happened to me." All I
could do now is thank my Father in Heaven. Thank you Heavenly Father for blessing me with Liam for
the 3 whole months he was with us. If it is time for Liam to return to you, I will accept it.
I was just afraid I wouldn't make it in time to say good-bye and tell
him once more how much I loved him. I thought about his smile and the
only
time I heard him giggle. I was blessed to be able to care for him during
this time. I don't want to let go but if you are ready
for him to return then all I can do is accept that and be grateful
for the time he was with us. I was looking forward to seeing him grow.
Watching him walk, run, talk. Learn to eat. Boy scouts. Sports. Watch
him pass the sacrament in his white and black suit for the first time.
Serve a full-time mission. Get married. Grand kids. Now all I can do is
hope that you give me the opportunity to see him smile
again.
The last road we were on felt like
forever. We arrived at 1:10 am and were asked for our information. Casey
was the one to do it. I hardly had strength to talk. A social worker
came and took us to a room. The room was big and bright. I felt a spirit
comfort me. There he was on a surgery like table. So small. So fragile.
His back was to us. He was laying on his right side. They brought me a
chair and asked for me to sit. I don't want to sit. I already know it is
bad. But I sit anyway. There are 4 other people other than Casey and I
in the room. I'm the only one sitting, but I am not surprised when I
hear the words. "We gave him a CT scan and we found that Christopher has
a brain tumor." Tears again flow down my face, but I am not surprised. I
cry because I may have already held him in my arms for the last time. I
compose myself and walk to a computer where he shows us. There it is.
The tumor. The thing that had been making my baby boy suffer for the
last week. It was quite a size. The Dr. explains he needs surgery. "If
there is a place that I want my child to be, it's here. We have the
best Dr.s" We kiss him on the head. I don't want to leave him but I have
to. I don't want to see his face because I want to remember the last
time he smiled and not like this.
We are
walked to a waiting room to wait until someone takes us to see
him. The social worker asks us questions and makes conversation. I still
can't help my tears. While we wait in the room alone I tell Casey that I
already knew. I am not surprised. He was.
During the shower I couldn't help but to cry. My cheeks are sore from where the tears have been flowing. The edge of my eyes are sore as well and it all burns. The tears are burning. I have salt stains down my neck. Liam doesn't look good. In several hours they will be taking him to get an MRI and we will be getting a phone call. We have to rest. My heart is broken. The night is so quiet. I miss the middle of night cries. The feeding Liam in bed with me. Eliana waking up in the middle of the night and giving me her arms to pick up. I miss the cuddling her between us. All I have is Liam's blanket. I smell it and feel him with me. I want his warm little body by me. A lot of people would prefer this night. Not me. Tonight we sleep without kids and I can't do anything but cry myself to sleep.
It's Friday February 15, 2013 6:30 am and after only sleeping 2 hours we get a phone call that Liam will be taken to get his MRI soon. We head to visit him. There he is. We can tell he is much more hydrated, but still asleep. He is starting to look like a chunky baby. He won't open his eyes. He's sedated but he can hear us. I can't speak to him. I choke. Casey says to sing to him but it's like I've lost my voice. All I can do is touch him. I miss holding him. I miss his cry. Heavenly Father let me keep him. Please. I promise to take better care of him. I wish I would have taken advantage of him. Held him tight, kissed him more. I wish I would have just left the mess at home and not worry about anything else. I know I may not be able to have that opportunity anymore. Please let me keep him. I don't want to go against you, so I must accept what you give me. Eliana. I wonder if she slept. Wish she was here. Wish I could hold her, hug her, tell her how much I love her. Since Liam is sedated we are suggested to go eat. Eat? I haven't done that for at least 16 hours. Casey points out that my lips are chapped. I hadn't even had a drink of water. I don't want to leave him, but I have to. Liam was suppose to go for his MRI at 7 but it seems like they will be late. He won't go until 8. Shift change is from 7-8 and no one is allowed during that time. We were told we would be able to see him before his MRI. We headed for the cafeteria. I am not hungry. I have lost my appetite. While I'm eating I can't stop crying. This just doesn't feel real to me. People are staring. I can see them so I look away. Even the cashier lady has her eyes fixed on me. Can't a mother cry? I don't expect people to know what I am going through, but that makes me uncomfortable. I am eating but feeling sick. I want to throw up everything I have eaten. I stomach it. When we are done we head upstairs but no one lets us in. I guess all there is to do is wait.
It's 9:30 am and it's time for us to head over to pick my mom up at the airport. We didn't know but she was planning on taking a cab. We were already there. She was just a bit lost. On our way back to the hospital we have a conversation where even Casey couldn't hold his tears back. I needed to see this side of him. I know he is trying to be strong, especially for me but he also needs to let it out. "But Crystal, you asked for this. Don't you remember what you said to me before." (my mom) Before she said anything else I remembered and replied "Yes. If the Lord is going to send a baby that needed extra caring for or had a disability I want him to send it to me. I will take care of that baby." I had seen cases where babies were not treated well or given up for adoption or just left alone because the parents didn't feel like they could handle it. Then I remembered when Casey and I were dating, not even engaged, he asked me a question. "What do you think about babies with disabilities?" To what I responded "They are blessings. If the Lord is going to send a baby with a disability or that needed extra care I would like to be the one to receive it. I prefer he send it to me because I will take care of him and not to someone who won't ." Casey agreed. She was right. I asked for it and Casey agreed with me. The Lord didn't give me this experience because I asked for it but he gave it to me during a time that I began struggling with the past. Things that are so little. Now nothing matters. I threw everything out the window and I have dropped the heavy back pack full of rocks that I carried for so many years. The Lord knew this was the right time and that Casey and I needed it. Now I was officially ready to say good-bye. I was blessed with a little angel that taught me love, caring, and how precious life is. I am ready even if it is not something I want. Sometimes we have to make sacrifices. Big or small.
Down the street from the hospital the Neuro-surgeon called. He wanted to talk to us about the MRI results and Liam was switched from room 12 to 7 in the PICU.
It's 1:30 pm we say goodbye and we head home. We miss our little girl. We are at my aunts house. I feel so sad. I am so happy to see Eliana but I miss my little man. My aunt invites us to eat. While she fixes lunch we wait and we play with Eliana. I missed her little craziness. My aunt repeatedly said everything will be fine. I have faith that the Lord will do what he feels is right. I still think about what could happen. When I become comfortable and forget what is happening, I laugh. I am laughing and having a great time. What am I doing? I feel guilty. I shouldn't be laughing and having a good time. My little man is sick, I can't do anything for him and here I am as if he doesn't exist or is gone already. Maybe I'm preparing for if he does leave, that I will be ok. I have Eliana and she is also special and I should be grateful for her. It's 3:20 pm when the nurse, in the surgery room, calls and informs us Liam is just beginning to be prepped for surgery. They just want to get him comfortable and in the right place for surgery to go as planned. I don't mind that they are taking so long to prep. I am beginning to receive messages about our situation. Friends and family telling us to keep our faith strong and they will pray for us. I do have faith. I have faith that it will be a success if the Lord allows it. All I can do is leave it all in His hands.
It's around 3:30 pm in Utah when I see that my Aunt has begun a chain of prayer. She has messaged a lot of people and asked that at 5 pm (4 Utah time) everyone pray for Liam. He was supposed to be in surgery by now but isn't. At that same time, 5 pm, people are attending the temple and putting our name in the prayer roll. I begin to feel the love from everyone and how much people truly care. I don't feel alone anymore. People ask me to keep my faith up and to never lose hope. At times I think it's easier said than done. It is definitely something that I struggled with when this all began. Now. No. I trust in my Father in Heaven. Liam may have already accomplished his goal and is ready to go back home. There is the possibility that I will come home empty handed and I have to accept it. I have to be ready for that news as well. At exactly 5 (4 pm Utah time and everyone is praying at the temple or home or work) we prayed for our lunch. Amazing how things line up. I feel the spirit of comfort. Preparing me to get any kind of news. Good or bad. I will either keep Liam and love him more than before and love Eliana equally or I will have Eliana to take advantage of and love and just remember how much stronger Liam made me. I must accept what decision the Lord makes.
We head to the apartment to leave Eliana and my mom. We also pack our things to head to the hospital for a stay of at least a week. When I walk into the apartment I'm already missing Liam's presence. I walk into our room. Our closet is open. There, his clothes are hanging. I can't help but begin to cry. I stand there for what was the longest 30 seconds of my life. What if I come home empty handed? I close the door. Daniel and Lucy call me. I feel comfort in their words. A lot of people don't know that I am prepared to say good bye. All I can do is tell them I'm fine. I am. But this only feels like a nightmare that I can't wake up from. It's 5:27 pm when the nurse in the surgery room calls again. Liam has been in surgery for about 20 minutes. We have to leave now. Yuli visits as we head out the door. Another long drive. I still cry and am waiting for the phone call that will tell us we are too late. Something went wrong. He didn't make it. I have to prepare myself for the worst. This doesn't mean I've lost hope or faith. I just have to be ready to accept if I must let him go. I have to be prepared.
The drive seems longer than the last one. Why is the car so slow? Did the roads become longer? Heavenly Father please let me keep him. I understand if it is his time to return to you. I wish I could have known and would have been able to do something sooner. Why did I worry about the dirty dishes in the sink? Why did I lay him down instead of carry him and just stared as he slept? Why did I worry about the laundry? I am sorry that I didn't carry him every time he wanted me to. I should have known. What could I have done? He was such a happy baby and I understand if you need him in your presence. Sometimes we must sacrifice what we love most and if I must sacrifice him then I will. Please make it quick. I don't want him to suffer anymore. He has suffered enough. I love you little man but I am ready to say good bye if you are ready to go. You are free, don't let me hold you back. You will be in a better place.
It's 6:27 pm we're half way there. Casey's phone rings. It's almost like the world stopped. My body is numb. This is it. I take a deep breath. My face feels really warm. Casey is not saying anything. The phone is blocking his face. I feel nauseous. I'm ready to accept what comes next. All I see is his eyebrows shoot straight up. I feel a tear down my face. My ears feel like they plugged. I can't hear what Casey says during the call. "What happened?" I ask "They are all done. They got the whole tumor out!" I call my mom. I can't stop crying. Tears of joy stream down my face. My mom asks "Are you crying because you are happy?" "Yes." But it's not over yet. Anything can happen.
The rest of the drive seemed even longer but we finally made it. Before we arrived Casey's uncle Jim was there and called us to let us know he was there, as well as our friends. Friends? No one told us they were going to be there. Lupita and Karl were there. We were so happy and surprised to hear that they were there. Confused as to how they got there when we thought they were in Texas. I hope they didn't fly for us, although that would be awesome. We arrive at the hospital at 7:10 pm We walk towards the hospital and it feels like the hospital is further than it was before. I want to see him. We walk in and see Karl, Lupita, and Casey's uncle. We give them the news and we head upstairs. While we wait in the waiting room for the Dr.s to arrive, we talk. I don't remember much of that conversation since I was thinking about Liam and what the Dr.s could possibly tell us. It feels like hours when we are waiting. It's 7:25 pm when the Dr.s finally come and speak with us. I can't remember what they said since I kept thinking about Liam. Was he ok? Is it truly all out? Could they have missed a tiny thing?
For months before I had Liam, I had a bad feeling something bad was going to happen. I wasn't sure when, where, what, or how. I didn't want to go out because I had that strange feeling. I told Casey in many occasions of this. I feared for children that walked home from school. The intersection by our apartment is terrible. It's almost like people try to race you or the train. I always have to tell Casey to be careful. Every time we drove over the tracks I feared the trains. In the past the train arms wouldn't come down and we have passed over when a train was close, twice. A man was run over by a train and Friday another man lost his life. When we were in our car I always got panic attacks because I knew something was going to happen. Never did I think that the danger was with my little man the entire time.
At 8:40 pm our friends join us while we head downstairs to eat. I am getting my appetite back. I still feel a little sick, almost like my body doesn't want to take the food. But I manage to stomach it. We have been blessed with great friends. They stayed with us for over an hour. It felt much longer. It was company that we were in need of. They made us laugh and remember some old memories. For a little I felt guilty again. Little Lima Bean is still upstairs. We don't know what will happen next. Will he be alright? After our friends left we headed upstairs to say good night to the little man before we headed to bed. Again sleeping without the kids. Silent night. Not the good kind. Oh how I miss them.
It's Saturday February 16, 2013. It's real. This is happening. I
went to bed at 1 am responding to emails, texts, messages, and calls.
It's all real. The only good thing about this is we had a good 9 hour
sleep. Casey was asleep before me so had 10. There was obviously no new
news. We didn't get a wake up call. I noticed my phone was full of
messages of every kind. I couldn't respond. There is terrible reception.
We go say good morning to the little man. Last night we were told he
would be more swollen today. Nope. He was already looking much better.
They said his eyes would become bruised. Nope. Maybe in the future. He
had just gotten back from an MRI. We can't do much. Liam is sedated. All
we can do is spend time near him.
Talk to him. I think I may be done
crying. Either that or I just ran out of tears. At about 11:10 am they
begin a trial. They want to see how Liam does breathing on his own.
While we wait Casey and I begin talking about support groups. Joining
awareness teams. Possibly changing Casey's educational goals. When Liam
was done with his trial at 12:13 pm they said he did great. They may
take his breathing tube out today. About 15 minutes after Casey's uncle
Jerry and aunt Susan were in the waiting room. It's 1:16 pm and the team is prepping to take the breathing tube out. I feel so terrible. My poor little man. He must be super uncomfortable. Four minutes later the tube is out. I can hear his cry. Hoarse. How I missed his cry. I teared up. It was like music to my ears. They gave him his meds and he fell asleep quickly. 2:18 pm and Casey receives a call. I saw him hang up. "Who was that?" The hospital that we had taken Liam to first. The ones that sent us home. They called. Liam may have a common cold. Really? I'm glad they sent us home. Who knows if they would have done what the other Dr. did. Brother Russell & Sister Russell are in the waiting room as well as my moms cousin, Noe Martinez & Clais Martinez, his wife. They have brought us food. FOOD! No more having to buy. It's hard enough Casey hasn't been able to go to work. Casey stays with the Russells while I take the Martinez to see Liam. I can see they sympathize with me. Before they leave Noe offers a prayer. I feel peace. Before we take The Russells to see Liam, Brother Russell offers to give us a blessing. Hm. I didn't think of us getting a blessing. What a great idea. The spirit was strong and the feeling of peace came over me. He reminded us that our Father in Heaven had a son that suffered as well. He too knows and went through the pain of seeing his son suffer. I was already feeling much better. I was a little more prepared for whatever happened next. 4:35 pm the MRI is back. They say everything looked great. Didn't look like there was any tumor residue. Are they sure? I know they are Dr.s and they know what they are doing but maybe there is a tiny piece they may have missed. Liam was getting an IV flush when he began to cry loudly. His IV had gone out. His poor little hands and feet are all bruised from them trying to get it in the right spot. He has to get a new one.
It's Sunday February 17, 2013. We fed Liam at 2 am. We went to sleep. I wake up because I feel someone else is in the room. It's around 3:40 am, less than 2 hours ago we were awake. I'm trying to focus my eyes. My ears felt muffled. When I finally focused my eyes and was able to hear fine I became worried. His monitor was beeping and there were nurses around him. I stood up, disoriented, couldn't walk straight. They had a blow-by oxygen. Apparently his respiratory rate had gone down and needed assistance with his breathing. After a while they took it away but 45 minutes hadn't passed when it happened again. The nurse we had was on top of everything. She was very meticulous. I liked that. I am very grateful for her. She called the Resident Neurosurgeon. 5 am and he is back to having oxygen tubes to help him breathe. The Resident Neurosurgeon finally comes in. He is checking Liam but feels he looks fine. He asks to just keep an eye. Casey and I feel and voice our opinion that he may be having seizures. The Resident Neurosurgeon says that Liam looks fine, he's not seeing seizure symptoms. "Just keep an eye." Funny. I've heard that before.
5:45 am he is taken for x-rays. It may be his lungs. Great. It just keeps getting better.
Yay! 8:50 am and he has his first poopy diaper. Poor little man. Days without having a bowel movement. The rest of the morning Liam is still having problems with his respiratory rate. It's 10:40 am and the Dr. comes in
It's 11:50 am, Nancy is visiting when they begin to prep him for the EEG. She leaves while they begin.
I want to cry. I feel pain and it feels like my heart skips a beat when they press against the incision area. I can hear his cry of pain. Again I'm wishing it was me and not him. I can almost feel pain on my head. They finally get all the wires on him but the wires near his incision aren't staying, so they press a tiny bit more. It's already as if he has a broken skull, pressing on it does not feel any better. I wouldn't know, but I can hear pain in his cry once again. They bandage his head. He looks like a little war patient. He is. He was battling a tumor that we weren't aware of. Our small soldier. A small body but such a strong spirit. It took 45 minutes to get him ready for the
"Do we know our child or what?" Casey walked into the room. He had stepped out for a minute. "What happened?" I ask. He overheard the nurses in charge of the EEG test call Liams nurses to change his medication. Liam was having seizures just like we, his parents, thought. This was only about 20 minutes into the test. All we could do now is wait. I am just glad that the Lord has blessed Liam with the nurses that have taken care of him. I was a little afraid, still am, that the nurses would just be "doing their job."
When I took a shower this morning I had plenty of time to think. When will this be over? When can we go home? When will he get better? Will he get better? Maybe the Lord is letting me spend a little one on one before He takes him back to his heavenly home. I can't help but cry again. I'm alone. I'm allowed. I can't tell if it's because I'm showering but no tears come out. Maybe one or two. I think I've just run out of tears.
Life is so precious. Sometimes we focus too much on things that don't matter. For so long I have held grudges. For so long I keep replaying things that people have done to me. Things that changed who I was. I began to criticize people. Shut myself from everyone that even tried talking to me. I was too busy thinking about people that didn't matter, that I didn't take the time to allow people in. All of a sudden I have forgotten all of that. I can't remember why I was mad at who. I'm beginning to feel like I am carrying less on my shoulders. All that matters is the here. The now. My son. My family. His future, if there is one.
It's 6:30 pm when a Pediatrician comes in to check Liam. After checking Liam he asks us questions about passed health history. The Dr said Liam had what is called an "Innocent Heart Murmur". He says for Liam it's normal, nothing to worry about. He will outgrow it. Family members call when they are in the waiting room. They brought us food. Just in time. They stayed a little bit and offered a prayer before they left. Such a great feeling of peace.
Now that Liam is in the hospital and Eliana isn't with us, Casey and I have plenty of time to think. There isn't a whole lot of talking. I usually end up crying. Casey's school and work are beginning to worry me. If he doesn't work, we don't have money. I am just glad that Casey was blessed to have a job and that his "boss" understands. We know Liam is more important than anything right now. Anything can happen in the blink of an eye.
Monday February 18. Presidents Day. No Dr.s work = no biopsy result. The only thing that we look
Since Liam no longer is taking the EEG test, we are allowed to hold him. "He's smiling. Come look!" Casey was holding him. I look over his shoulder. There it is his smile. The smile that I once thought I would never see again. Casey and I can't help it, we begin to tear. A couple of tears of joy run down my face before I think to record him. For the next hour we try to make him smile as much as we can.
It's Tuesday February 19. Tomorrow Eliana turns 16 months. We want to see her and miss her so much but we can't leave Liam. I have a feeling, even though the nurses are great, that they take care of Liam better when we are in the same room.
Nothing happens today. It's just a day of waiting. Pacing. We are suppose to hear about the biopsy, but no one comes in. No Doctors today. It almost feels like this day isn't going to end. Being in a closed room for days, no where to go, can be difficult. I am beginning to question again. Why? Why this? Why us? Why HIM? I hear of stories of how women hold their babies close as soon as they give birth. Why couldn't I do that? Why did both of my babies end up in the NICU? Why can't I have an experience like those women? Lord I am not as strong as you think! I can't do this! Only lasts minutes. I manage to stop myself before it gets worse. I am blessed. This experience is happening to me because I was chosen. I may not think I'm strong enough but he knows my strength.
"These fiery trials are designed to make you stronger, but they have the potential to diminish or even destroy your trust in the Son of God and to weaken your resolve to keep your promises to Him. These trials are often camouflaged, making them difficult to identify. They take root in our weaknesses, our vulnerabilities, our sensitivities, or in those things that matter most to us. A real but manageable test for one can be a fiery trial for another."
The rest of the night felt so slow so we finally turned the TV on, and just watched whatever was on. Liam began to cry. He's in pain. I can hear it. I can feel it. We have another nurse. It's after shift change around 8 pm. I ask the nurse if she can give him his "oxy." (pain medication) She checks to see when he last had it. "Yes, I will give it to him now. Apparently the nurse had not given it to him all day." What?? I would like to see her with brain surgery and not ask for pain medications. This is a baby. He is not going to ask for it. Shouldn't these nurses be on top of this? I have learned to ask about his medication, when they give it to him, and remind them when they should be given. I understand you are trying to wean him from it but you can't completely take it away.
Wednesday February 20, 2013. Eliana is 16 months today. It's sad we don't get to see her. She isn't allowed in the hospital. It's RSV season. They don't want her to catch what the other kids have. I miss her. Casey misses her and suggests someone bring her. But who? I don't want anyone to go out of their way to make such a long drive.
When you end up in the hospital with a sick child you forget about the world. You forget about bills, school, and only hope you will be understood. Casey and I realized that just because we stop doesn't mean the world does. We had to take care of some things.
Liam is already fulfilling his baby blessings. He has reminded me of how blessed I am. He has taught me the Power of Prayer. I asked the Lord to help me become the person I wanted to be. I am not that person yet but with this experience I am a step closer. Liam has taught me about love, family, and friendship. I am not alone. I can feel friends and family sympathize with me. Something that I needed to know. Liam is my little superhero.
None of the Dr.s came in until late night. The Neurologist would take a look at the CT Scan and if he saw anything he would let us know. The bishop and his wife, Relief Society President, came to visit. That was nice. We enjoyed their company and the little laugh. By the end of the day we were ready to sleep. But his fever worries me. They have been giving him Motrin and the fever subsides but it returns. It is higher every time. If it keeps going they will have to take a sample of his blood from the EVD tube.
My mom calls me and we speak for about an hour. We talk about Liam's fever. "Mija have you thought about what if something goes wrong?" My eyes become watery. This entire time I have thought about it. I try not to get myself excited about his recovery. One just never knows. In the past I felt guilty because I was so worried about small things that I feel like I didn't spend time with Liam his first month. Now I feel worse. Maybe the Lord is giving me this chance. Maybe Liam will leave soon and the Lord is giving me a short time and opportunity to spend this time with him. Maybe he is waiting for me to truly be prepared to say goodbye. Tears run down my face. I don't let my mom know or even let her think that I'm crying. "Yes mom. Whatever the Lord decides I know that He knows best. If He takes him all I can do is be grateful for the wonderful 3 months that I had him with me. If he lets me keep him, I can only love him, take care of him, and be grateful with my Heavenly Father every day." Do I really feel this way, or am I trying to prevent people to see that I am actually not as strong as they think and say? I am still not prepared but I try to convince myself that I am. I have to be prepared. I can only have faith, wait, and trust that the Lord knows best. Casey and Liam are asleep. It's dark and I'm off the phone. I cry a little more. It's ok. I'm a mother who is still suffering seeing her baby boy in pain. I'm allowed.
Thursday February 21, 2013. I am still a little disoriented as to what day it is. It's 3:30 am and the nurses are taking a sample of his blood. He still has a fever. We are hoping that it isn't, but they want to test it for an infection. I can usually fall back asleep but this is worrying me. I don't go back to sleep. They finally text the Neurosurgeon. It's 9:45 am when the Neurosurgeon stops by. We talk about his fever. We still haven't received the results of the blood work. He asks that they take a urine sample and send it off as well. I am still a bit worried. I'm not going to lie. So we ask him about the biopsy results. When he returns to talk about the biopsy I feel no fear but I do worry. Cancer? No? Will it come back if so? He explains the different explains that there are 3 different types of Choroid Plexus tumor. Grade 1, 2,3. Grades 1 is definitive. It's benign. Grade 3 is definitive. It's cancerous. Grade 2 is indefinite. It's not cancer but not benign. From what I understand it have cells that are both benign and cancerous. He says this is the first case. Never happened before, so he will inform the Oncologists who will get back to us as to what is the next step. I'm having mixed feelings. Sure the tumor is out but it could come back. Relief that it isn't fully cancer but worried that it is not completely benign. All I can do is pray that the worst is over and wait.
One of my great friends is willing to "babysit" for us during the time we run some errands. Last minute decision, she also brought Eliana and my mom. Eliana. As soon as the elevators opened and we walked into the lobby I searched for her. That sweet little girl. There she was. Again, she looked so far away. I only saw a tunnel that led to her. I wanted to cry as soon as I saw her. I think I'm all out of tears officially because nothing comes out. She's happy to see us. She hugs me and kisses me. She hugs and kisses Casey. I wanted to hug her and never let go. This experience has made me appreciate having two beautiful, intelligent children and a wonderful supportive husband. I can't stop looking at her. Her hair has gotten longer. She looks older. It's only been a week but it feels like months. Her voice has changed. She sees a dog "DOG!". Wow she said dog. She has said it before but it's clear now. We head over to eat first. We take them to Wendy's. I still can't help but stare at her. She is so beautiful. Hey bright eyes remind me of the first time I saw her. I can't believe how much she's grown. I don't want to leave her again. I want her to stay with me, but I know she can't. I must say good bye and hope to see her again soon.
When we are done, we must get back. I miss the little man and feels he needs me. For the first time I am not afraid to hold him. I'd held him before but I was afraid. Afraid I'd hurt him. His incision. His head. I'm holding him against me. Oh the warmth of my baby. I longed for it. He's so small so fragile yet so strong. I feel him breathing on my neck. I was afraid I would never feel that again. I don't want this to end.
Friday 22nd. Liam has been having a fever for several days now. At first I was a little worried but the Neurosurgeon said it was normal. 3 am and the nurses are still seeing a fever. They have drawn blood, urine, took a sample of blood from his EVD and sent it to get tested but found nothing wrong. I am beginning to worry and I don't think I am the only one. At 9:50 am Liam was taken to get a CT Scan, ordered by the Neurosurgeon. They are worried it may be something else. He is such a brave little man. Little man you have no idea how many people are praying for you. Asking about you. Worried about you. You have no idea how much you have taught me. Patience, Love, Power of Prayer. How many hearts you have melted with that beautiful smile and spirit. Lord please let this fever pass. Let all the results be negative and help him recover from this. Help me with more strength and be more optimistic. I have faith that you know what is best.
The Oncologist comes in. He wants to ask us questions. Does our families have past history of Cancer? Children passing away at a very young age, and why? These are things that neither of us really know. He tells us they are not sure yet of what may come next. What treatments. We should find out Monday. Monday? Again waiting, pacing, sitting. In the end another Oncologist came. She would be in charge of Liam. She said all that mattered was parents and grandparents. No. None of that.
It's Saturday 23rd around 3 am. Nurses are coming and out. At times I feel so embarrassed when people walk in while I sleep but I am too tired to care at this point. I am so tired everything is a blur and all I remember is nurses smiling at me. I can tell they are taking good care of Liam. I fall asleep again. At 9 am the Dr comes in. I am still way too tired and it's all a blur. I just hear something about Liam starting a Clamped EVD Trial or getting it removed. I kind of hide behind Casey. I'm having slurred speech. I feel like going back to sleep but I have to plan some things for the day. We head down for breakfast because we may have missed the morning cart of muffins, milk, and juice. It's ok I've been wanting to have something besides chocolate. I ask Casey about what happened in the morning with the Dr... O good! I understood most of it. We are now able to pick Liam up as we please. We always had to call the nurse in and wait for them so that we could feed him (mainly Casey, I'm scared to hurt him) in our arms. Yes I feel like a terrible mom because Casey holds him more than I do. Don't judge me. I am always afraid to hurt him.
I miss Eliana it's been too long. A family member has offered us a space in his home if we need it. I think we are going to take advantage of that. Our plan is for Casey's mom to spend the rest of the nights with Liam while Casey and I spend them with Eliana at our family members home. Then during the day we'll switch. Hopefully well get news soon that we can go home.
I wonder what people think. Of us. This situation. What we are going through. It wasn't that long ago when I would find myself watching commercials of children with cancer. I was seeing so many Facebook posts of "1 Like = 1 Prayer" of children that were sick. Cancers and other kinds of illnesses. It got to the point that I tried ignoring them and changing the channel when the commercials were on. No I wasn't getting sick of them. No I wasn't "hating" on them. Nothing against the whole thing. I just felt pain. I began to think, What if I was that mother? What if that was Eliana or Liam? I don't think I could be that strong. I don't think I could deal with that much pain. I don't think I would get out of it fine. I can't have a child with needs. Sure I may have thought I could in the past. But now? I don't think I am strong enough. So I wonder, what do people think of this situation. Of us. I am finally all together I think. I haven't cried. Never once did I feel sorry for myself, or thought of this as a punishment. Sure at first I asked why. I am sure a lot of people in this situation have done it as well. I am so grateful for the family and friends that we are surrounded by. For the love and support that they have showed us through this tough trial. I know that we will always be tested but I hope this is a story that will not repeat itself.
Sunday February 24, 2013. It's 6:00am. Eliana wants to get up and moving. We are so tired. We've been sleeping in the most uncomfortable bed. We are finally in a comfortable bed. I feel stuck to it. I get a feeling I need to get up and head to the hospital. It's not a terrible feeling so I just lay there.
Casey gets up to give Eliana snacks while I shower. It's 9:00 am and we receive a text from Casey's mom, who stayed at the hospital over night. Liam had his EVD taken out. I knew it. I had a feeling I needed to go. I was tired but I really wanted to be there for that.
After we have "real" breakfast we get our things ready and head to the hospital. We have lunch with Eliana in the cafeteria. O how I have missed her and she's grown a bit. I want to take this time in. I want to live in the moment. Just watch her. Record her.
I head upstairs while Casey waits for his mom to take them to the place we are staying near the hospital. I take Liam in my arms. 2 hours exactly. It seems it's the longest I have ever carried him. I hope this is almost over. I hope soon we can go home. I have plenty of time to think. The nurses don't come in unless it's necessary, and who knows how long Casey will be gone. I sit and rock him. He was crying until I asked for his gas drops. While he was falling asleep I just stared. His warmth. How I really needed that. Looks like he was in need of it as well. I can't help but to shed tears as I watch his incision closely. Following the track just like the stitches on a baseball. I can't imagine how painful it must be. Sure everyone says He's just a baby he won't remember. He's just a baby? He is a baby. He is my baby. So small. So fragile. He feels pain now. To me it doesn't matter if he will or won't remember. To me it matters if he is in pain. I suffer if he suffers. I will remember.
His skin. So soft. Either it has become softer or it's been so long I can't remember if it was that soft. I love smelling him. I rub my cheek and chin from his forehead to his cheek. Like I've seen lionesses with their cubs. He is so warm. The perfect warmth. He's smiling in his sleep and almost giggling. It's too cute. Eliana. My precious girl. I miss her already. She needs me too. Only 16 months and away from mommy. I miss her hugs and kisses. Tears run down my face. Torn. Wishing I could be with both of them cuddled in bed. Like before. When I couldn't move because I was sandwiched by them. Eliana cuddled against my back and Liam against my chest. They are my blanket. Casey wipes my tears, but they are continuous. I close my eyes and just take this moment in. Take advantage of it. One just never knows what may happen next. "Hey bubba let's give you the same scar on your left side. Then you'd look just like a baseball." Trying to stop the little pain I feel. Casey laughs.
Casey had been back for a little bit when I laid Liam in his crib. I was falling asleep when I get a phone call. My dad was thanking everyone for the fundraiser and everything everyone has done for us. I can't help but to cry as he repeats words I said to him before "Daddy, if the times comes I am ready to say good bye. I am willing to let go of him and let him return to our Heavenly Father." I do appreciate the hard work and prayers that everyone has done for Liam, but this isn't over yet. Liam may still have complications that will require other surgeries.
The roads are pretty snowed on so I decided to stay with Liam and Casey go to where Eliana and his mom are so that he doesn't have to keep driving back and forth. Besides the nurse, it's just me and the little man.
Monday February 25th. We have been in this hospital 10 days already. Going on 11. I am ready to go home but if Liam needs to stay I am not going to fight it. He needs to recover and this is not something that will recover or heal quickly. I spent the night tossing and turning. The bed didn't magically become comfortable. The monitor kept beeping, making me look every time. I was worried the nurses wouldn't give him his medication on time. It's happened. It's 8:15 am and Liam's neurosurgeon came in to talk to us. I am not the brightest person so I worry that it is only me. Casey understands more than I do. My vocabulary is not that great. He checks Liam and says he is looking great. I can only hope they don't need to put a shunt. We were told it was a possibility that he needed one. This would require another surgery. Something that I don't want Liam to go through again. So the Neurosurgeon asks us to make an appointment in the future for another MRI. I believe that will be in a couple of weeks. About five minutes after the Dr and his Nurse Practitioner leave, Casey walks in. He went to the store before coming to the hospital to buy Liam a "going home" outfit. My minds a little unorganized since it is thinking about so many things that need to be done before we actually go home.
They had been giving Liam sodium chloride replacement because it has been low. It doesn't matter how many times they give it to him, his level isn't changing. The Nurse Practitioner comes back to tell us we need to stay at least one more day. They want to wean him from two to one dose of it a day, see how he does, then send us on our way. She later returns to ask if during my pregnancy ultrasound they informed us about a problem with Liam's kidney. Kidney? Now what? I do remember them saying he had some fluid in his left one. I don't want to say it's exactly what they said. She leaves and the Urologist comes in. He informs us that when they did Liam's MRI he noticed that Liam has his left kidney swollen. He asks for kidney problem history. We make calls. He returns. The problem Liam has could mean there is a blockage that is causing Liam's kidney to not function properly or a reflux. His urine could be going back up instead of out. This is something that can be fixed with surgery in the future. Surgery? Again? My poor little man. He follows by saying that this is something that he could have been born with. He could grow out of it. One can only hope. Ophthalmology will see him outpatient. We were told they would see him here but no. Since he lost his left peripheral vision and he will have trouble controlling his eyes. They said this will take time. He is most likely going to need vision therapy. Neurology didn't come in but they called to let us know they want him to keep taking the "keppra" and "phenobarbitol" for his seizures. We will keep bringing him in, in the future, to check his seizures. They are still not sure if he will be on the medication for weeks, months, years, or for life. We can only hope and pray for the best. It's 1:15 pm and Oncology comes in. This is what we have been waiting for. Liam was diagnosed with Choroid Plexus Grade II Brain Tumor. This was the Neurosurgeons first case. To the Oncology team it was a rare tumor, therefore taking them time to decide what treatment was right for Liam. We were informed that Brain Tumor in babies are rare. Liam's Brain Tumor Grade is rare. Now they tell us that in this case it is rare that the tumor will grow back. My brain is thinking millions of things per second. Chemo? Please Heavenly Father no chemo. No chemo. "We have been studying the different literature's that there are about Christopher's case. There really isn't a whole lot because it is a rare case. We decided that we are just going to keep watch of it......" My shoulders are no longer tense. Relief. "We are just going to ask that you bring him in every three months for at least a year, and just get an MRI. We want to make sure that the tumor has not returned. We think he is just so little and well... chemo can be too much for him." That was music to my ears. If Chemo had to be done I was willing to take him through that. Anything that will benefit him. I didn't want him to go through such harsh treatment. I finally feel like I can breathe better. Home feels closer.
Tuesday February 26. It's been a long journey. It almost feels like it will never end. I already feel like I live in the hospital. I miss none of the material things. This means I will be selling a lot of things that we don't need and taking up space.
Last night it was the little man and I. Casey left to go take care of Eliana for the night. Put her to sleep. Yesterday we were switched to another room for other reasons. The nurses do things differently here. I took care of him the entire night. After getting off the phone with my mom, I went to sleep at about 11:30. I was up at 12 am. The nurse was not informed or she didn't read that Liam's seizure medications were being moved. Instead of 11 she gave it to him at 12 because that was when they gave it to him last. We will have to do that at home anyway. I fed him. Back to sleep. 2 am. I asked for Tylenol and I fed him. Sleep. 4:30 am fed. Sleep. 5 am lab came by and drew blood. My poor little man was crying from the pain. They needed to check his sodium levels as well as other kinds of level.
7:30 am. I feel a tap on my knee. My eyes feel heavy and stuck. It's blurry. It's one of the Oncologist. I think. I can't remember who's what anymore. "Good morning. So Christopher's blood tests are back and everything looked great." Either he said that or that's what I wanted to hear. "Is there a reason why you think you shouldn't go home?" By now my eyes are wide open. "NO!" What kind of a question was that? Of course not. I should go home. I need sleep. My back hurts from the so called bed. I have a headache and have been feeling nauseous for days. O wait! Liam. We're talking about Liam here. I'm not the patient. What lack of sleep does to one. "Ok do you have any questions for me?" I probably did. That's why Casey should be here. My mind feels like I was hit hard by something. I still can't think straight. I may remember later. I just nod my head. I just want sleep. By now I'd be embarrassed by how I look but eh I am way too tired to care. "Ok well (something about a Dr. I think) will come in and talk to you and ..(I'm pretty sure he said we'd be good to go.)"
It's 8:21 am and he still sleeping. I wouldn't doubt it if all the crying from blood being drawn wore him out.
I can't sleep. I need a shower. I'm hungry. I'm glad I packed everything last night and sent half of it with Casey. We have so many things here. Of course we were here almost half a month. We brought more than we pack for a trip to Texas.
"How do you remain 'steadfast and immovable' during a trial of faith? You immerse yourself in the very things that helped build your core of faith: you exercise faith in Christ, you pray, you ponder the scriptures, you repent, you keep the commandments, and you serve others." "Peter described these experiences as 'much more precious than … gold.'"
I am just glad we are finally going home after all of this.
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