This kid is going to be trouble when he gets bigger

Our youngest little guy is teething right now. And I have to say, that he has been thee WORST kid to deal with so far. I look at him funny and he yells at me. I don't look at him at all and he follows me around the house crying at my feet. He refuses to eat anything that doesn't look like baby food. Although, that might just be him being picky. Either way, he's been rotten and nasty and sensitive the last few days. Today.... our beautiful Sunday, seems to be no exception. Daddy was sitting in the recliner while baby A played all over him. Unfortunately Daddy M is sick and this kind of fun, isn't really all that fun. Imagine having a mini earthquake that rolls all over your body while you are nauseous. No good. So.... Daddy M relocated to the ground so mr. baby could have the recliner. Seeing as baby A is especially sensitive, he was not ok with Daddy getting off the recliner and going to lay on the ground. This was when, in his tiny little fury, he looked around room and found his foam sword. Then found Daddy M's head and smacked him while yelling at him. So, M poked his belly. Standing tall at a threatening 2 feet.... or less, off the ground, A yelled at Daddy and swung his little sword at his head again. And got poked again. Eventually, since his little legs aren't adept at keeping him balanced, he fell over from a well planned poke and stayed sitting while still hitting Daddy M with the sword, still yelling in protest. At some point he was poked hard enough that from his sitting position he toppled over and stayed down. Halfheartedly trying to hit M with his sword still. He fought a good fight and as far as he was concerned this was as far as it needed to go. Although, a few minutes later he did abandon the sword and sat on Daddy Ms head. Perhaps acting as though this was his victory kill.

Either way both baby and Dad were worn out by the "fighting". One took a nap and the other wandered around looking for food. You can decide who was who. :)

All about my cute middle kid

My son E is not lacking for entertainment ever. Most of you that know him and his energetic spirit, know this already. He does things that make me wonder what he was thinking. And usually- I really don't think he's thinking. He's 4.... so in his defense, thinking is not the most important thing to do. Trying new things out and experimenting is how it goes for him. I envy his courage. I am not like this. I am a thinker first and foremost.

For example.

We went on a hike over the summer to a pretty little waterfall. It was small enough that if you wanted you could stand right under it. However- it's glacier water and FREEZING cold. So of course, Daddy thought it would be interesting to see how far our kids would go to be able to play their game-boys. (We rarely let them play, so this offer is like gold to them.) Daddy said that if they could stand completely under the waterfall, they could play when we got back. Our oldest boy, A, was very excited by the idea-- well, both boys were. So, A wandered close to the falls several times. At one point he did get close enough to have some of the water splash on his head. This was good enough for him. Buuut, not good enough to be able to play his game-boy. He was heartbroken, but not willing to get more wet. His brother however-- totally hyped up by watching his older brother make an attempt, ran up to the falls and after a few looks at his challenge, he ran full on under the waterfall.

I was shocked.

At first he was so taken aback by the freezing cold that he couldn't make a sound. He sucked his breath in and frantically began to run away from the water. Rocks are slippery when wet, in case you didn't know, so naturally he slipped at least once. And, just like he was being chased by the Texas Chainsaw murderer himself, he was up again and running. No place in particular. Just away. He finally let out a death wail straight from hell, slightly oriented himself to where we were, and came toward us. This wasn't too difficult since I was already coming to him to rip off his ice cold shirt and get him in the sun. Once in the sun he stopped shaking and found another thing to distract himself with. Not even myself or Dad could go under the falls. I honestly didn't try, I got close enough to feel the icy water on my hands and that was enough for me. What a crazy kid.

So.... some of you people might think this was mean. Let me stop you right there and remind you, he had every bit of freewill to do what he wanted. And he made his choice. He was fine about 30 seconds after I took off his cold, wet shirt. And he was excited to play his game-boy. It was worth it to him.

Example # 2.

This next story, is only funny, because it ended well. This is a shining example of a time that little E tried first to see if something was a good idea. Learned that it was not. And I am certain he will never do it again. (I hope) A and E are the best of buds and they play a lot together. It just so happened that a few days ago they were playing upstairs in their room. Being boys. And after about an hour of playing, Daddy and I hear a shrill scream coming from E, neither of us even batted an eye-- mostly because he screams like this ANY time that is big brother does something he doesn't like or hurts him in some way. But then A came running down the stairs and said frantically, "E is stuck on my bed! He can't get down." So of course, I'm thinking, 'great, he's probably hanging upside-down on the ladder or too scared to get off the top bunk.' Daddy ran up the stairs with A to help E down. Then I hear Daddy tell A, "Go get your mom, quick." That's when I jumped up and ran upstairs to see what the trouble was. I come into the boys' room and see E, hanging there between the wall and the bunk bed. I couldn't see his head, just his body wiggling wildly, trying to get his feet on something for leverage, hollering like a wounded animal. Daddy was under the bed, supporting his weight by this time. This did not mean that the frantic wiggling stopped. My mind went straight to thinking, 'I have to move the bed away from the wall. I need to get his head out of there now.' I tried once with Daddy still on the bed. Couldn't get it to move. I mean.... I'm not very big and he's a guy- he's not exactly small, plus our bunk bed is old and heavy. He told me to wait, he would get off, he just wanted to find something for E to put his feet on. I didn't want to wait that long. So I tried again and pushed the bed away from the wall enough for him to slip his head down. This meant like an inch. I felt like the Hulk. haha

After all the excitement- I couldn't help but laugh a little. Of course of ALL my kids, it would be E that would get his head stuck trying to climb down from a bunk bed the wrong way. Knowing that he was going to be OK, I was able to go back in my memory and relive what I saw initially and see the humor in the situation. Scary yes, but he tried something. Thank heavens he was able to learn from his mistake and it wasn't more serious than some sore ears and a legitimate fear of the bunk bed and the wall. :)

Example # 3.

Last one. A little more light-hearted for everyone. I asked A to take out the garbage for me at night. So, it's dark. And the garbage bin is back in our driveway away from the house and there's no lighting over there. A has a healthy fear of the dark. I'm not sure why or what he's got in his mind that has convinced him the dark is terrifying. It's rather inconvenient when you're trying to get chores done and your helper stands at the door, with it open, letting all the cold in moping because he doesn't want to take the garbage to the dark trashcan. So E who is also deathly afraid of the dark has a moment of bravery and tells A, "it's OK. I'll show you. It's not scary at all." And he bravely grabs the garbage and took it out. I was so proud of him! He took on a scary thing for himself and conquered it! And of course he waltzed back (or rather ran- because he was still scared) and told A, see, "You just go like that. It's not scary."

E constantly reminds me it's ok to do things with a squiggly line instead of a straight one. And I love him for it. And sometimes, I have to admit, it stresses me out to the max. It's not easy to parent someone that really doesn't care for your idea that he needs to be parented. I have a feeling that E and I are going to have to learn a lot over the next decade or two on how to understand each other. Why can't my children just come out thinking just like me????

The end of baby A's story with Primary Children's Hospital

After they re-intubated baby boy, we were grateful to find that the staff was more cautious with getting it removed. He had a machine sitting next to his bed that monitored when he was actually breathing on his own and when the machine was breathing for him. Initially the machine was doing most of the work. This was somewhat concerning for us at first. If he needed so much help breathing on his own even after surgery what did that mean? The thought never occurred to me that he might always need help breathing. I'm glad that was never a stress I had. It was mostly concerning for us, because it meant our little boy was struggling. He was still on dilaudid at this time and that had a lot to do with his depressed breathing.

We had made it to Tuesday! I think I finally showered. We finally asked for a razor so I could shave my legs and look less amazonian. Baby boy, by the end of the day was getting much better. He still had not eaten or at least not the way you'd normally eat. He didn't really have a feeding tube though. It was kind of strange to me and a bit upsetting. The one thing I could offer him normally was food. And now I wasn't allowed. I was a pumping machine though. Which, for the first time in my life, pumping wasn't annoying. It was a welcome distraction from everything that was happening.

Wednesday rolled around and I think this was the day they extubated him. He was finally breathing more on his own than not. He still needed an oxygen tube in his nose though. We thought we were close to going home or at least getting out of the PICU! But they were being cautious and he was still struggling a bit. So we stayed.

Being extubated also meant he got to eat!!! It had been 5 days. Poor little boy had gone from eating 4-6 oz of milk to barely being able to tolerate 2 oz of pedialyte. But he was eating! He was eating!

I think I've said it already in past posts, but we were still in the mood to take our victories where we could get them. 

Baby boy, for the first time since we came to Primary's, finally fell asleep in his daddy's arms after his 2 oz's of pedialyte.

Later that night (Wednesday), I got to nurse him! I wish I could explain the connection this offers between mother and child. But I can't do it justice. For those who aren't married, it's like falling in love for the first time and you can feel it; you can feel it in your whole body. It's that moment when the love of your life kneels down and asks you to marry him. It's the moment when you find out you're pregnant and your whole body tingles. This is what nursing is to me. It's a sacred connection I get to have with my perfect little angel and I missed it. It was pretty emotional when I was able to finally nurse him. He was still connected to about a thousand cords and machines, but we made it work. He didn't nurse long, but I was finally able to do something for him!

I remember seeing several of the doctors and other staff come through excited to see baby boy breathing on his own and eating on his own. We had lots of eyes peeking in. It felt like they were almost as excited as us to see him improving.

I started to feel better about his prognosis. I became to feel like he'd be ok. We'd get to go home and he wouldn't have cancer. Sadly, their pathology team would come to us in the PICU and later on med/surg with the news that they still did not know what the tumor was. While in the PICU, we were told that they had sent parts of his tumor all over the country to the "best of the best" to read the stains. So far, we had them all stumped. They sent it further. And we still had no answer.

We were in the PICU until Thursday night. He spiked a fever a little before we left. Tylenol was given and luckily the fever left. But this also meant that once we got to med/surg we had to stay for at least 24 hours. He was still on oxygen at this point and couldn't leave because of that anyway. But he was well enough to make it to the med/surg floor! My mother was flying in on Saturday to help with our other two sweet little boys. And we were finally feeling like we could go home.

last night in the PICU

While we were on med/surg, we were given a little present by our baby. He gave us his first smile! It was perfect and just what I needed! He was happy and ready to go home. We just needed him to get off that oxygen tube. At least he was only on 1 liter by this point. Which meant we were close.

While on med/surg I wasted no time taking advantage of the severely reduced number of cords and held him! As much as I could!

Daddy and I had to share this room with another couple. Kind of weird. But at least we had a curtain separating us. And there wasn't really a place to sleep. But we made it work. We pushed two of the chairs together (Luckily they were the one's that could lie flat sort of like a bed.) and we had our head at each end and our feet together in the middle. Honestly, we barely slept, but neither of us wanted to leave his side. So this was our compromise.

We were glad to finally be getting our baby back. They took his oxygen off. His face was beginning to lose all the water in it and he didn't look so swollen. His beautiful bright eyes were back and we loved it!

We had one last visit on Friday night from the head of the pathology team. He told us that someone found what looked like a spindle cell. Which meant he could have a certain rare type of cancer. We were discharging in the morning on Saturday and my heart just sank. This was the worst news ever. I thought we were done. I thought he was going to be ok and then we had to hear this. The pathologist was very careful to say that it "appeared to look like a spindle cell, BUT there was a lot of blood from the tumor and necrotic tissue that made it very difficult to decipher what they were seeing, so he could not tell us with any certainty yet, that this was cancer."

Saturday at lunch time, we finally left the happiest sad place on earth, and went home. The feeling was surreal. The world was still turning outside. Things still happened without us. Driving home, it was sunny outside. Sun?? What is this sun? People were just walking down the street or cutting us off in traffic having no idea that we just went through the ordeal of a lifetime. And were still not done. It was an odd feeling.

I was scared to leave the hospital. He still had his broviac tube in. You can see it on his shoulder in the picture above. We had to sterilize it and flush it with saline and-- shoot-- I can't remember what else. But it was basically and anticoagulant so that the port wouldn't seal up. We had to do this for 3-4 weeks after we left the hospital in case he did have cancer and would need chemotherapy through this IV. We had a nurse that came once a week to our home to change his bandage. I've worked in home health, so I'm familiar with it, but being on the receiving end was a little strange.

All in all, it was nice to be home. It was nice to have my mom help for a week after we got back. It was nice to give him a baby blessing while my Dad and siblings were in town. They were able to make it for a few days. We got to bless him at my husband's grandpa's house and it was such a sweet blessing. I think the people we had there to support us and more importantly, to support baby A, made it a very special moment for us. Normally, baby blessings aren't done in homes, we do them at church. But because of the special circumstances of baby boy having a broviac tube still in, we were allowed to do it at home. I wasn't ready to bring him to church where sickness in November likes to roam.

It was nice to see our baby become his little self again. He was awake. Happy. A little cuter now with his manly scar. And such a treasure to keep.

Several weeks later, I got a call from the pathologist from Primary's. He had news for us. We were told that baby boy did not have cancer. They still were not 100% sure that it wasn't cancer, but they were more sure now that what they found in the tumor was something else. He told us they thought part of the tissues they could find were parts of his body trying to regrow his teste. And that we would just need to watch for anything unusual. But all in all. Our baby was ok.

He was ok.
:)

P.S.
Many wonderful people had come to help us and visit with us. We were so blessed to have dinner brought to us each night and have pleasant company to chat with. I cannot express how great this was. Cafeteria food. Although- surprisingly delicious- becomes rather boring when the menu doesn't really change. We had homemade food. We had cafe rio! Each time, we had great company. We had a care package given to us with food and toiletries and snacks. The hospital staff let us take pictures for our two little boys at home. They developed them for us and then gave us a little picture book with scrap paper, so we could send a picture book to the boys, so they could see what we were doing. *I still have that book*

They let us bring our children in and they gave them little hospital dolls and showed them all of the stuff that their little brother had attached to him. You can see one of the dolls with my mom and baby A a few pictures up.

A lot of sadness and extreme stress came from this experience. But so did a lot of goodness and love. I am grateful for the love we received from the very beginning when we first started our journey, a week before, when we took our little 6-week-old boy to the ER, not knowing what we were in store for. All the way to when we got home and had a woman from my ward, that I barely know, decide to bring us dinner.

Thank you all from the bottom of my heart.   

Baby boy and Primary Children's continued.

Ok. I with my last post, I had just left off with our little man opening his eyes for the first time after surgery. What a splendid and exhilarating feeling that was!! I wish I could say that by this time we knew he would be ok. We sadly did not. The doctors were fairly certain the tumor was nothing special, however their pathologist team. Yeah- team. Could not figure out what it was. So all we could do was wait for them and give all our attention to our sweet little baby.

I got to hold him! For the first time after his surgery! It was amazing!!! 

After his surgery they were hopeful that he would be able to begin to breath on his own. So that afternoon after his surgery. Monday, they extubated him. At this time, he started to vagel. Essentially this means that he would involuntarily stop breathing for whatever reason. The nurses and doctors felt he would vagel because of the pain he was feeling. Our oxygen level is supposed to sit 90-100. He was vagelling a few times every hour for a while and his sats would drop to the 20s. It was horrifying. Like someone who was drowning, his lips turned purple, his fingers and toes turned purple and his skin began to look splotchy.

Our nurse. Whom I am infinitely grateful to, was a little high strung. Which at times was great, because she was so attentive to baby As needs. She literally had a chair and a little table and sat almost right by his bed her entire 12 hour shift. It was great. (Also, because he was such a high risk patient, he was her only patient) And at the time, I was so grateful that when she saw him vagelling, she grabbed the oxygen mask and started pumping air into him. The only problem with this, which we discovered later with another fiasco, is that if your airway is closed- where does the air go?

Into his stomach.

So he was vagelling over and over and she would grab the mask and pump air into him. We had no idea this was a problem.

Around 6:00 that night a child next to us coded. So they had several nurses run over to assist (ours included), the respiratory team, as well as several doctors. It just so happened that at this very time our little A vagelled again and dropped quickly to the 20s. He didn't recover. I stood there listening to the alarm go off and no one came over. I watched his sats. They were in the teens now. Daddy M and I were stressing out! A few seconds later I kind of nudged Daddy M over to the collection of healthcare workers assisting the other patient and he told them that our baby boy wasn't breathing.

A handful of them ran over to our room and began trying to raise his oxygen level. He wasn't recovering. We had the attention of the respiratory team now. They decided right then to reintubate him. Which means that about 8 people were rushing around our baby.

He lay there like a ragdoll. I've only seen one other dead baby in my life--which I am convinced is the worst thing in the world to see-- and now my baby looked dead. His arms hung limply at his side as well as his little feet while they held him up and re-positioned him. They injected more medication in him to make him fall asleep and then they shoved the tube back down his throat. I realized after watching for a minute, that I couldn't do it. I had to hide. I walked to an empty section next to our curtain and cried. M, came over and hugged me and that's where we stayed until they were almost done.

A doctor at one point came over to us and explained what was going on. She was very empathetic to what was happening to our baby and how it was affecting us. I want to say this is a rarity for doctors, but I didn't really feel that way at the Primary's. Even though- I did feel like there were a lot of big egos walking around. Most were still very kind.

Once they finished and everyone left. We were able to settle down again. This lasted about two hours before the nurse noticed that something was off with his breathing. The respiratory therapist came over, and ordered a stat x-ray of his chest. Turns out part of his lung was collapsed. They called only a few people in this time and tried to inflate the collapsed section by moving the tube he was intubated with. Apparently if you place them too far down, they collapse lungs. Wonderful. Just wonderful.

After this episode, they told us we could be in the PICU a while longer. I was actually relieved. Going anywhere else with the trouble he was having, terrified me to no end.

Oh- also, they relieved all the air in his belly with yet another tube that they stick down into his stomach and the air basically leaves his abdomen through that tube. So his tummy was no longer bulging and causing pain to his incision. Over the next few days, they would use this tube several times to remove fluid buildup and excess air where it wasn't supposed to be.

I still hadn't slept yet. I think this made it 3, nearly 4 days now. 72-96 hours.

That night, after all the excitement we were exposed to, began to calm down nicely for us. We watched a little Duck Dynasty for the first time in our lives and found something we could laugh with. It was refreshing.

And that night, after Daddy M went to our sleep room and I pumped. I finally fell asleep.

A little more about baby boy after his surgery

ok, wow. It's been forever since the last time I posted. In my defense, I've had a lot going on. I didn't even finish my story of what happened to A. I'm not entirely sure where I left off, yes.... I could go back and actually check, but I don't want to. I think it was before he had his surgery.

We waited all day that Sunday for Monday to come. He was intubated by this time I believe. His pain was so severe that they went from a dose of morphine. To a morphine drip. To Dilaudid. Which is the good stuff people. It hits quick and lasts long. The downside to such an awesome drug is that it depresses your breathing. His body was so relaxed, it decided it no longer needed to breath. Hence the need to be intubated and attached to a machine that did his breathing for him. Daddy M managed to get a nap in on Sunday. And we had some visitors. I do think I wrote about that. I still hadn't slept. That night, after our visitors had left, I stayed by my baby's side. The hospital has this policy where you can sign up to get a sleep room, and depending on the severity of your child and how far away you live, they'll allot you a room. We got a room every night we were there....

It was a sweet sweet blessing.

Daddy M was able to use the room the first few nights. I couldn't peel myself away from As side. I wish I could trust the nurses enough to leave my baby. No.... that's not true, I trusted the nurses. I didn't know at this time what was going to happen to my little baby. I didn't know if these were going to be the last days I spent with him and I NEEDED to spend every second with him. They brought in a chair that turned into a bed earlier that day- the one McKay got to nap in. I planned to use that for sleep. Sunday night though, I was up most of the night. I think I slept for 2 hours maybe. I'm glad Daddy M was able to sleep the whole night, we needed it. He was just sane enough to get the sleep. That morning at 7am they kicked me out so they could give report. It's for the privacy of the other patients in the rooms next to us. So at that time, because I had no choice, I left my baby.

Daddy M and I would usually eat breakfast around this time and shower. We had wonderful family members bring us things so we could be less disgusting while staying at the hospital.

Monday we waited for an opening for surgery. He wasn't a scheduled procedure, so we just had to wait for a surgery to drop off the list and then he would be put in that place. We had three visitors on Monday. I cannot remember when they came or if they all came together, but when A finally went into surgery. It was around 10 or 11 am. I do know that Daddy M's parents were both there as well as his grandpa. They were kind enough to sit in the waiting room with us.

Dr. Meyer let us go back with him to say goodbye before his surgery. (Love her by the way! She was amazing!) We got to meet the anesthesiologist who would be in charge of A's breathing while in surgery, and obviously keeping him under during the procedure. Then that was it. Daddy M and I kissed him goodbye and we left our little boy in the hands of complete strangers. Depending on their education and their skill to safely remove his tumor and bring him back to us. This part doesn't really sound all that scary on paper, but it was terrifying. This was the moment when they would go in a see what was inside him. This was the moment when he could, for whatever reason, die on the table. This was the moment that could have been my very last moment with my baby alive. I didn't want to let go. I wanted to hold him and hug him and cling to him forever. But all I could do with all the tubes attached to him, was kiss his perfect little forehead and let him go.

Still hadn't really slept people. Going on 3 days now I think? 72 hours? So I was severely overly emotional.

Daddy M and I went and showered while he was in surgery. Had breakfast and came back to the waiting room with Daddy M's parents and grandpa (GGPA) to wait. It's kind of a depressing room. Not intentionally, but you sit in there with a handful of other people and you know they are all waiting in there to hear news about their children as well. That's the luck of being in a pediatric hospital.

His surgery lasted only a few hours. We decided at the time, that this was a good thing. Short surgery meant not so many complications. (Which is retrospect, was true.) Dr. Meyers came out with the doctor who assisted her and began to explain what they found.

Little sidebar- we asked them in the ER several days ago, if this tumor could be related to his undescended testicle. They said absolutely not. There's no way. The testicle missing was on the wrong side of the body from the tumor. So, as Dr. Meyer takes him back, she casually says to us, "while we're in there, we'll see if we can find his missing testi as well." We were grateful, but didn't think much of it beyond that.

Back to Dr. Meyers. She explained what they found.

A massive tumor attached only by a stalk of the vas deferens. So, yes, this tumor had completely encased his testi. It had grown so large that it had flopped over to the other side of his body. It was sitting on his iliac artery? I believe that's right. This thing, this awful tumor was almost completely dead inside him. It had not only flopped over, but it had twisted. A blood supply was getting in, but not getting out. (Which was why he needed a blood transfusion before surgery. He was extremely pale.) This torsion may have also been what caused his tumor to get as big as it did as fast as it did.

They sewed him up, his incision almost went from hip to hip. I'd compare it to the size of a c-section scar on a 6-week-old. Just above his belly button. They also gave him a broviac line. Or a picc line is probably the more familiar term for some of you.

Basically it's a catheter that is placed under the skin that gives a direct line to the artery just above his heart. This would allow for more direct access for treatments if needed.

It would allow for chemotherapy treatments if he had cancer. No one really said this directly to us. They mostly said things along the line of, "We don't really know what this is yet, but we want to be extra safe and save the time of having to insert a broviac later if he does actually need it."

As they gave us this news, that they got it out. The whole thing. I felt such a wave of relief. I was so happy and so grateful. A was recovering, he survived surgery! We still couldn't see him though. That kind of stank. To celebrate, we all went downstairs to the cafeteria and had lunch. I know, I know, we party hard!

A nurse came down to the cafeteria and told us he was back in his room. Poor baby did not look good. His face was so swollen, he still couldn't breath on his own and he still had tubes, IVs, and monitors attached to him all over the place. But he was out of surgery! It was gone. He wasn't out of the woods just yet, he needed to wake up and needed to start breathing on his own.

For now though, we took our victories one step at a time. Like him opening his eyes for the first time after surgery and looking right at his Daddy.

Only a few things can compare to how beautiful that felt. To see those wonderful little eyes again.