Warren takes his role as big brother very seriously. Warren also doesn't understand how much bigger he is than his little brother so he ends up being pretty overbearing... Let me show you what I mean...
Lucas is starting to catch on to the whole idea of "self defense". Warren kinda freaks the poor kid out, so now that Lucas is beginning to figure out that he can control the movement of his extremities, he does his best to push Warren out of his face. Warren just doesn't understand the concept of personal space yet, so he likes to get right up in Lucas' face, and Lucas isn't as enthusiastic about that. haha. However, they are getting to the point where they sometimes interact peacefully. Warren loooooves to make Lucas laugh, so every once and a while I catch them laughing together and it gives me hope that one day they'll actually be best friends. haha. In the meantime, I will continue to fulfill the role as baby bodyguard. :P
North American Truce
Tuesday, April 28, 2015
Lucas
Today my baby is 9 months old! Normally this is the "you've been out as long as you were in" milestone, but as you're fully aware, Lucas is an exception...
Look at how small he was when he came home, compared to today! He's tripled his weight since then and is now 18 lbs of chub. I sure do love him.
Here's a look at how he's grown since coming home after 10 weeks in the NICU.
Due Date Picture |
I realized that I left a lot of the details of Lucas' NICU stay out. I pretty much left it off at his big scary nuclear scan where they were trying to see if there was a connection that kept making the mass on his liver grow. It was a good theory, but ultimately wasn't the case.
A few days after that, they did some blood work and found that the mass was still causing major problems. It was putting huge stress on his liver function. There was even a brief moment where they had included oncology, and talked about transferring Lucas to the Denver Children's Hospital in case a liver transplant became necessary... Thankfully that never happened. They found out that his vitamin K level was low, so they gave him a shot of vitamin K and he responded to that immediately. That was encouraging, because it showed it wasn't a tumor, and that if the abscess was taken care of for good, then it would most likely solve all his problems. Major surgery became the only solution.
On September 11, 2014 the surgery was performed. The surgeon made a 3 inch incision and found that mass was the size of a ping pong ball. Keep in mind, he was only about 5 lbs at this time, so that size of a mass is even more astounding. After slicing it open it was found that it was full of puss, so they cleaned it out, and left it open inside of him for his body to absorb. The surgeon said that after seeing it, that it was no wonder that it didn't respond to the antibiotics. It was so large and so thick, that the antibiotics had no way of penetrating it. After the surgery, the antibiotics finally did what they were supposed to do and killed off any bacteria that was causing harm. Lucas was only on pain killers for less than 24 hours and bounced right back. He steadily improved from there.
Lucas had one more surgery to repair a hernia a couple weeks later. That poor kid was sure put through a lot. But the day finally came! We took him home on October 4, just a few days before his actual due date.
I am so incredibly grateful for the dedication his doctors and nurses had. Lucas sure was a unique case. I am even more grateful for the Gospel of Jesus Christ for giving us comfort when nobody could give us good news, and for strengthening us to be able to handle all this madness. I admit that I didn't handle it all gracefully, but now I realize that handling trying times gracefully isn't the measuring stick I should be using. As long as I'm praying, listening to promptings and clinging to the hope of the Gospel, that's really all I could have done. I'm human, so there's no way I could ever handle something like that perfectly. I did my best to keep trying and keep hoping, and there's not much else I could have done beyond that, and that's okay. The experience brought me closer to the Savior, so the trial served it's purpose in that way. I just never want to repeat it. haha.
Now, Lucas has been completely off oxygen since Christmas, he's just starting to eat solids, and he's so chubby he can't figure out how to roll onto his belly from his back. Though he is perfectly content being on his back and watching the world, so his motivation to move around is lacking. He is off all medications, and has a clean bill of health. My little miracle baby.
Friday, February 27, 2015
The Do's and Don'ts For When Friends Have Sick Loved Ones
My husband was asking me a while ago what ever happened to my blogging. I honestly haven't even thought to blog since the last post back in August. The more I thought about it, the more I realized that blogging about Lucas had become a coping mechanism to help me process his being in the NICU.
People would ask me all the time how I was doing and what they could do to help, and I realized those questions were being asked with good intentions, but they also weren't asking for the actual truth. They didn't want me to burst out in tears, and they didn't want to sit down with me for three hours to really let me get all my feelings out. So I had a really difficult time talking with people face to face. I felt like I had to put on a face in public that I was dealing with everything perfectly fine, when on the inside I was a complete mess. I couldn't think of the next day, and I couldn't think of what if's. I just had to "be".
I blogged in an attempt to get people to stop asking me how I was and what's going on. I tried to give a quick summary of events and made my blog posts public in case they wanted all the specific details. Looking back, as hard as it was going through all the ups and downs of Lucas' well being, it was harder putting myself in social situations. It was hardest for me to go to Church. I felt like I stood out like a sore thumb. Everyone knew a tidbit of information and they wanted more. I don't blame them though. Healthy babies are born all the time in the Church. It seemed like premature births were an anomaly, and it brought up natural curiosity to find out more. Even though my head knew it was natural for others to be curious, it was emotionally exhausting to be at Church, needing my Spirit to be filled with strength, but instead getting asked the same question (How is your baby?), over and over again, each time being harder to give an answer and hold back my tears and smile. Truth is, the majority of the time he wasn't okay. That's not something that is easy to say out loud once, let alone several times in a three hour span. So I just didn't say it. I said something about how he was getting there, or I said he was getting bigger, but it really was really hard to come up with something that didn't sound depressing or hopeless each time.
My point in saying all of this is not to make others feel bad. I know that had I not gone through it myself, I probably would have asked the same questions, and done everything that I wished people would stop doing to me. I'm not upset with anyone, but I do want to help people understand what the "Do's and Don'ts" are if they were ever to encounter someone again going through something difficult like that.
1. DO NOT ask "How are you?". Think about it. If you had a sick baby in the hospital, would you be okay? If you gave birth to a baby and had to leave the hospital without him, would you be okay? It's impossible to be in that situation and "be okay". You are always worried. You are always overwhelmed. You always feel like there's not enough of you to go around.
Instead. Don't ask anything at all. The most meaningful thing anyone ever did while Lucas was sick was when a woman came up to me, pulled me into her arms and gave me the most heartfelt hug I have every experienced. I felt as if she was encircling me with compassion and that hugging me was the only thing that could properly convey how much she truly wished for the wellbeing of my family. That hug rejuvenated my Spirit, helped me feel understood, and allowed me to let go of my defense for just a moment. Not a single word was said, but that moment will always be a cherished memory.
2. DO NOT ask "What do you need?". Truth is, in those moments, I didn't even know what I needed, so how could I tell someone else? My mind was always occupied with how could I get to the hospital to see my baby that day. Was I going to get good news or bad news when I got there. Does my three year old still know that I love him. Am I spending enough time with my husband. Do my parents know what's going on. All those things can't be fixed by someone else.
Instead. Show up with food. I was so overwhelmed that I didn't even think of feeding myself or my family. You could also check in to see if they need help with their other kids that day. Asking for help is harder than I would have expected. I already felt like a charity case, so the more stuff I asked for, the more I felt I couldn't fulfill my responsibility as a mother. When someone just called and offered their help right then, it was an incredible relief.
3. DO tell them you are keeping them in your prayers. Put them on the Prayer Roll at the Temple. There really isn't much that you can do anyways, so whenever someone told me that, it always meant a lot to me.
4. DO offer to clean their kitchen or do their laundry, but don't ask when you can come over. As I previously explained, asking for help all the time made me feel like I wasn't doing a good job at being a wife or mom. When you ask when you can come over, you're just not going to get a straight answer. Work it out in your own schedule when you can come over and help, tell the person that you have this time cleared and make sure that they will be there to let you in. It may be help that is hard to accept, but it is help that will make a difference and relieve a burden.
5. Most of all, when you are with them, treat them like any other normal person. I noticed that sometimes when people would talk to me, there was this obvious look on their face of pity. Pity isn't understanding or compassion. Pity makes you feel like you are less than everyone else, and that feeling sucks. Talk to them about what's going on in your own life instead of just cutting to the chase because you're wondering about the sick kid. Hearing about someone elses drama free and uneventful life is oddly comforting and gives someone in a hard circumstance something to look forward to happening in their own life one day.
Please use these tips with anyone, young or old who has a loved one in the hospital. It is such a draining experience. It is something you can't fully understand unless you have gone through it yourself. Please help make it easier for them. You can do more for their emotional wellbeing than you even realize.
My point in saying all of this is not to make others feel bad. I know that had I not gone through it myself, I probably would have asked the same questions, and done everything that I wished people would stop doing to me. I'm not upset with anyone, but I do want to help people understand what the "Do's and Don'ts" are if they were ever to encounter someone again going through something difficult like that.
1. DO NOT ask "How are you?". Think about it. If you had a sick baby in the hospital, would you be okay? If you gave birth to a baby and had to leave the hospital without him, would you be okay? It's impossible to be in that situation and "be okay". You are always worried. You are always overwhelmed. You always feel like there's not enough of you to go around.
Instead. Don't ask anything at all. The most meaningful thing anyone ever did while Lucas was sick was when a woman came up to me, pulled me into her arms and gave me the most heartfelt hug I have every experienced. I felt as if she was encircling me with compassion and that hugging me was the only thing that could properly convey how much she truly wished for the wellbeing of my family. That hug rejuvenated my Spirit, helped me feel understood, and allowed me to let go of my defense for just a moment. Not a single word was said, but that moment will always be a cherished memory.
2. DO NOT ask "What do you need?". Truth is, in those moments, I didn't even know what I needed, so how could I tell someone else? My mind was always occupied with how could I get to the hospital to see my baby that day. Was I going to get good news or bad news when I got there. Does my three year old still know that I love him. Am I spending enough time with my husband. Do my parents know what's going on. All those things can't be fixed by someone else.
Instead. Show up with food. I was so overwhelmed that I didn't even think of feeding myself or my family. You could also check in to see if they need help with their other kids that day. Asking for help is harder than I would have expected. I already felt like a charity case, so the more stuff I asked for, the more I felt I couldn't fulfill my responsibility as a mother. When someone just called and offered their help right then, it was an incredible relief.
3. DO tell them you are keeping them in your prayers. Put them on the Prayer Roll at the Temple. There really isn't much that you can do anyways, so whenever someone told me that, it always meant a lot to me.
4. DO offer to clean their kitchen or do their laundry, but don't ask when you can come over. As I previously explained, asking for help all the time made me feel like I wasn't doing a good job at being a wife or mom. When you ask when you can come over, you're just not going to get a straight answer. Work it out in your own schedule when you can come over and help, tell the person that you have this time cleared and make sure that they will be there to let you in. It may be help that is hard to accept, but it is help that will make a difference and relieve a burden.
5. Most of all, when you are with them, treat them like any other normal person. I noticed that sometimes when people would talk to me, there was this obvious look on their face of pity. Pity isn't understanding or compassion. Pity makes you feel like you are less than everyone else, and that feeling sucks. Talk to them about what's going on in your own life instead of just cutting to the chase because you're wondering about the sick kid. Hearing about someone elses drama free and uneventful life is oddly comforting and gives someone in a hard circumstance something to look forward to happening in their own life one day.
Please use these tips with anyone, young or old who has a loved one in the hospital. It is such a draining experience. It is something you can't fully understand unless you have gone through it yourself. Please help make it easier for them. You can do more for their emotional wellbeing than you even realize.
Saturday, August 30, 2014
The Mystery Continues...
My life... It's become more unpredictable than ever before... and that's saying a lot because I've had a pretty eventful life so far! Here's the latest Lucas drama. I've decided that point form is the only way to give all the information without writing a novel. So here goes...
- The drain had been removed from Lucas' liver and he seemed to be doing amazing
- Breathing on his own with very little extra oxygen
- Increasing feeding volumes
- Gaining weight and getting fat
- I was super relieved and loved being able to hold him, as evidenced below
- Ray was also very relieved and loved being able to hold him, as evidenced below
- I noticed that Lucas was starting to struggle to breathe, and the nurses kept on suctioning out his nose and throat which seemed to only be a temporary fix
- Got a call from the doctor on August 17, telling me that Lucas was having a hard time keeping his oxygen levels up, and he was struggling harder to breathe
- Lucas got an X-Ray
- It showed that the cyst on his liver had grown back
- It was squishing his lungs and that was why he was struggling so hard to breathe
- Ultrasound was ordered to get a closer look
- Labs showed that he was still fighting infection despite being on antibiotics for so long already\
- A blood culture was started to see if it was the same blood infection
- Lucas was put back on CPAP to assist his breathing
- I really hate CPAP... It squishes his face and I can't really see him behind that huge apparatus
- Ultrasound showed the cyst had grown to 4cm all around
- The next day, August 18, Lucas was taken to Radiology for a CT to have another drain inserted into his liver
- This meant he had to be put under anesthesia and had to get a breathing tube down his throat... *grumble grumble*
- The doctor thought that there was a possibility that the cyst wasn't related to the infection, and that instead it might be caused by a connection in the liver to a bile duct and that's what kept on filling it
- During the CT, they injected a dye to see if there was a connection like the doctor thought
- Apparently not. They couldn't see any connection that shouldn't be there.
- 20mL of fluid was removed from the cyst during CT
- A different kind of drain was inserted this time, which allowed the cyst to continuously drain into a bag
- After the CT they did another X-Ray to check on his lungs
- It showed that his lungs weren't being squished anymore, but because of the lack of space there was, some air pockets in his lung above his liver had collapsed
- They were originally planning on taking him off the ventilator that day, but because of what they saw on X-Ray they left him on the ventilator over night
- Apparently the air pockets would re inflate on their own as long as his breathing was strong, hence staying on the ventilator
- Lucas super hates the ventilator
- He was trying to breathe against it as soon as he woke up from the anesthesia
- He kept on grabbing at the tube and pulling at it
- The nurses were afraid to leave him alone in case he pulled out the breathing tube when they weren't watching
- Since Lucas was so mad at the tube being down his throat, he wouldn't calm down
- The nurses ended up having to wrap his hands up super well in his blanket and swaddle him really tight
- He also needed to be given pain medication to get him to actually sleep
- August 19, the blood cultures came back positive.
- It was the same infection in his blood, which is apparently very resistant to the antibiotics
- He was started on a second antibiotic, rifampin, which is apparently used in conjunction with his first antibiotic, vancomycin, to make it some sort of super antibiotic...
- Another X-Ray was done to check his lungs
- It showed that the air pockets had re inflated, so that's good at least...
- It also showed that the tube was in a tiny bit too deep, causing him discomfort
- Respiratory was called in to pull the tube out 1cm
- Lucas took advantage of the opportunity and squirmed a whole bunch while they were trying to fix the tube
- His squirming made it really hard for them to move it such a small amount and instead, the breathing tube slipped right out
- It was actually really funny to watch. All of the sudden the tube is in the person's hand and the nurse was running out to call the doctor over while another person automatically grabbed an oxygen mask and had it over his face in no time
- Pretty sure Lucas made sure that thing came out. It just made him mad.
- He ended up back on CPAP. Thankfully they didn't think they needed to put him through getting another tube down his throat.
- August 20, uneventful and restful day
- August 21, another blood culture was started to see if 48 hours with the second antibiotic had made any difference
- Two day wait for the results...
- August 22, spent weaning the oxygen level Lucas was receiving down
- He seemed to be doing okay, but wouldn't stay too happy if the oxygen got set too low.
- August 23, blood culture results came back negative!
- They kept them going to see if anything would ever come back positive, just in case, but two days with no positive result was a very good sign
- He has to be on the antibiotics for six weeks from the last negative blood culture, meaning the clock restarted and he's got six weeks to go again before those antibiotics are over with
- I asked about the plan to get him off of CPAP and never really got a clear answer...
- August 24, the doctor noticed that his belly was bigger than it should be and another ultrasound was done that day
- It showed that his entire liver was enlarged and that there was some extra fluid floating around in his belly
- He was started on a medication to help him pee out excess fluid in his body
- The liver being enlarged was likely a result of the cyst causing the entire organ to be inflamed
- His feeds were stopped in case his digestive system was getting stressed
- August 25, the results of the ultrasound weren't too concerning, so the drain was removed and Lucas was started back up on his feeds
- Apparently Lucas was starving because the nurses were having a hard time calming him down
- Once he got fed again, he calmed down immediately and zonked right out
- August 27, Lucas came off CPAP finally!!!
- CPAP was replaced with high flow oxygen, and he seemed to be doing really well with it
- He weighed at 4lbs 8oz
- Blood cultures still negative
- Took Warren to visit Lucas again. It had been a while since he saw him last.
- Warren did amazing!
- He said things like
- He so cute
- I want to touch his toes/his hair/his cheeks
- See?! I hold his hand!!!
- I want to share my car wiff baby brudder
- He need to sweep (sleep) so he get better and come home to play!
- I wuv him!
- August 29, another ultrasound was done to see if the cyst was growing back or shrinking and healing
- The doctor told me that there was "a little bit of fluid re accumulation" in the cyst
- The blood cultures are still negative, so it doesn't make sense that the cyst can still be growing so it can't be related to the infection
- Now they're back to the idea that there's a connection in his liver to a bile duct which is filling this stupid cyst thing
- Since the CT they did when they checked for a connection didn't show anything, the doctor sent those pictures to the main campus in Denver to get them to look at it and see if they could see something they were missing here
- The people in Denver suggested that since Lucas is so small, during the CT, they could only use a small amount of pressure to push the contrast dye through, and that might not have been enough pressure to show a connection if there really was one
- The doctor here decided to order a new test called a HIDA scan that would be able to show more definitively if there really was a connection
- This test is done by "Nuclear Medicine" people
- A nuclear, but apparently safe dye is injected and it tags all the bilirubin cells that are in his liver, so they watch those cells to see if they're going somewhere they shouldn't be going
- They assured me that this was a safe procedure though, and that it didn't require sedation and it wouldn't make him feel funny
- I went with him to the HIDA scan. It was a giant machine that filled a room and then they put my tiny 4 pound baby on this giant thing... It was kinda funny...
- The dye was injected and they needed him to stay there for an hour as they took pictures to track all the cells
- Lucas did really well. I was able to sit next to him and hold his hand and make sure his binky/soother stayed in his mouth
- He had to skip a feeding before this thing though so he was pretty hungry and sucked on that soother like his life was depending on it
- After the test, he was brought back up to the NICU and got all settled back in his bed and got his much anticipated feeding
- He zonked right out. He had basically been awake for the last two hours as he was being prepared to go down to this Nuclear Medicine room, then he never really fell asleep during the scan because he was starving and there was all the travel time... Pretty sure he has never been awake that long, so after he started getting fed, he was just wiped.
- I had spent almost six hours at the hospital, so it was time for me to leave...
- I should find out the results of the scan today. I sure hope they find something. They're running out of minimally invasive procedures and tests that they can do...
- If this test comes back normal, they might have to resort to surgery to look at this thing first hand and nobody wants that to happen
- So again we wait.
- At least he is eating, breathing and growing
- He is also ridiculously cute and holding him is the best ever
- Prayers for Lucas are always welcome
- Ray and I are holding up and clinging to faith that all will be well. Lucas truly is healthy outside of this mysterious cyst. So once it is taken care of, he really will only be getting better from then on.
*Update*
The results of the HIDA scan came back normal. No connections to places there shouldn't be, so that's good, but we still don't know for sure why that cyst is getting bigger again. The plan now is just to wait. Lucas is healthy (outside of the cyst) and progressing like he needs to be, so they're just gonna keep letting that happen and do regular ultrasounds to make sure the cyst isn't becoming a problem again. It could be just that it needs more time to respond to the antibiotics. So for now I'll just enjoy being able to hold him and cuddle every day. I know this precious boy has had plenty of Divine assistance so far, and I know that isn't going to stop. If the doctors never figure this thing out then at least God knows what it is and He can fix it.
Monday, August 11, 2014
Good Things!! Finally!!! Good Things!!!
They aren't kidding when they say that babies get sick fast, but they also get better fast. Little Lucas has improved by leaps and bounds in the last two days. Draining that cyst in the liver seems to have been the key. They kept on getting less and less fluid out of it, so today it was decided that they weren't pulling enough out anymore for the drain to be necessary and they removed it! His color has gotten better and he's nice and pink. His liver function labs are also within acceptable range now. Such a huge relief.
His ventilator was removed on Saturday and is currently on CPAP, which is basically what people with sleep apnea use. It's forcing air into his nose and reminding him to breathe. He's been on the ventilator for a week so they're weaning him off of the That should be the next thing to go, so hopefully by tomorrow night he will be off the ventilator machine completely.
Another bit of good news is that all his IV's are out! He still has the central line, but his hands are finally all free. As of now, the only medications he's receiving are his antibiotics and his nutrition fluids. That's huge!!! He was getting so many drugs and now he's not! They even stopped his pain meds. He gets a dose just before the nurses do anything to him to keep him calm, but other than that, he's managing just fine. He's able to sleep and he seems pretty comfortable.
Lucas has also started feeding again. They are giving him 3mL every four hours. It's going to stay there for a little bit and eventually they will start slowly increasing his feeds. Also, despite the traumatic week Lucas has had to go through, he has gained weight! He is now a hefty 3lbs 6oz. He needs to keep that up, and I don't think it will be a problem.
So the nurses are talking like he will be off the CPAP machine in the morning. If that is the case, it's looking good that I'll be able to hold him tomorrow. I am pretty sure I need it more than Lucas does. Tomorrow sure can't come soon enough if that's what's going to happen. I sure hope it does.
The nurses are also saying that by the end of his six week treatment of antibiotics, he will be 37 weeks and very possibly able to come home right after his last dose. Pretty sure that will be one of the happiest days of my life. I already told Ray that I'm not putting him down or letting anyone else hold him until I'm good and ready to share the little dude once he's home. Haha.
So. Things are definitely on the up swing. I'm so relieved and I feel like I can breathe again. What a crazy week it has been. I'm definitely glad it's over and I'm ready to never have to go through that again. Each day my little boy is getting better.
Sunday, August 10, 2014
My Little Fighter
Lucas just keeps on throwing us curveballs. He's been getting treated with antibiotics for the blood infection, but his labs were showing something weird was going on with his liver. He was put back under phototherapy to fix it and it looked like it helped, but his numbers that they've been trying to bring down shot back up again as soon as he was taken off of it. An ultrasound of his liver was done and they found a mass. The doctor was going to wait until the antibiotics were finished to look into it more because he was pretty sure it was an abscess and nothing super worrisome, but then his labs for his liver continued to worsen. The doctor decided to be more aggressive in figuring out what was going on because obviously it was causing his body distress. Lucas was taken to get a CT scan and they had to put him under anesthesia to keep him still. They were prepared to drain the abscess so once they confirmed that it was something they could drain, they did so. That's another reason they put him under anesthesia. It turned out to be what they called a cyst, not an abscess, because it wasn't filled with pus, it was filled with a reddish brown fluid. They had to surgically insert a drain because they wanted to empty it slowly. The cyst was huge though, 5cm x 6cm x 3cm. So they initially pulled out 24mL of fluid, then six hours later they pulled out another 10mL. Since then they've been pulling out less so it's emptying out and it's really helped improve his color. The fluid is filled with bacteria though. A second blood culture that they thought was negative also came back positive. The first culture they did took 1.5 days to come back positive so when the second one was negative after the same amount of time, they thought he was in the clear, but it came back positive after 2.5 days. At least the infection is slowing down. So with this cyst and the blood infection that's still there, he's getting an extra long antibiotic treatment. He will be receiving them for the next six weeks. Lucas had a central line put in the day before the CT scan because at that point they thought his blood infection was taken care of. If they don't get the infection under control soon, they're going to have to remove the central line. That's a huge bummer because it allows his medicine to go right into his core and get to work faster. We'll see how that pans out in the next couple days. And as if he hasn't been put through enough, he also had a spinal tap to rule out meningitis since that was in the group of possible causes. It came back negative so he doesn't have meningitis.
My brain is starting to feel like mush... It's being filled with all this medical information. I know that he will get better, but right now I'm starting to lose my patience. Lucas has gone through more in less than two weeks of life than most people go through in their entire life. He's being pumped full of a giant cocktail of medications and being put through painful procedures and having to deal with lingering pain from those procedures. As his mother it's killing me to not be able to pick him up and hold him and comfort him and protect him. I have to watch him from outside of a plastic box as he winces from his waves of pain and watch him as they give him more pain medication to make him fall asleep. As thankful as I am that they can help him sleep, I hate that he has to have those drugs to force him to sleep. People say that outwardly I seem to be handling all this well. I'm grateful that people think that, because I sure don't feel like I've got myself under control. My husband is a huge source of strength for me though, and I am so grateful for his support. Without him I would be a complete basket case.
I'm taking one day at a time and hoping each new day is less eventful than the last. It's a constant battle to remind myself that this too shall pass and I'll have my baby boy at home to cuddle with and take care of myself without a nurse watching over me.
So here's hoping that today less happens than yesterday. And that tomorrow, less happens than today. For the sake of my sanity and my son's health.
Wednesday, August 6, 2014
Little Body, Big Scare...
For being such a small person, Lucas sure can give us quite the scare.
Monday evening we came to see the little man in the hospital. The nurse told us that she had noticed his little belly was a bit bigger, and she thought it was because he was up to 15mL of milk per feeding. However, after three hours his belly didn't appear to get any smaller so she was hesitant to feed him again until a nurse practitioner took a look at him. We had to leave before that happened though. We trusted that all would be well and that Lucas was in good hands.
We spent the evening in Manitou playing at the penny arcade with Warren. He went on a bunch of rides, played some games and did astonishingly well at air hockey. He stood on top of a milk crate and played like a champ!
After we got home we settled down for the night, put Warren to bed and we were getting to bed ourselves. Around 11:00 pm my phone rang. I didn't know what number it was, but I did remember seeing that I had missed a call from that number earlier in the night when we were playing at the arcade. A voicemail was left, but for whatever reason, my phone wasn't letting me access that one particular message. So when the phone was ringing at 11:00, I had a heart sinking realization that it was the hospital. Something was going on with Lucas and they were trying to get a hold of me. I answered the phone and that's exactly what it was. Lucas' doctor was calling me to tell me that he had gotten really sick really fast. He had turned an awful shade of gray and had been put on a ventilator. The doctor told me that we needed to come in right away so she could tell us more.
I realized then what a giant blessing and tender mercy it was that my mom was here. With her being here at this particular time, it gave us the freedom to be able to go to the hospital at a moments notice. I don't know how we would have handled that situation if nobody had been there to watch over Warren. There is no way I could have handled what was coming by myself.
Ray and I got to the hospital and as we turned the corner to Lucas' room, all the lights were on and there were at least six people hovering around him and another three people waiting to get in next. It was obvious something was seriously wrong. They made room for us to come in and began explaining things to us. They said that something was definitely wrong in his belly. It was still distended and and with his sudden change of color and not being able to maintain his oxygen levels, they had to rush to his aid and figure out what was going on. The doctor pulled us aside and gave us
more information. She said that it looked to be either some sort of scary infection or that his bowel had perforated. They did a whole bunch of X-rays to try to rule that out. They also put two IV's in
him, one in his hand and the other in his scalp. They started pumping him full of antibiotics, blood pressure medications and pain medications. Lucas looked awful. His poor little face was so telling of how he felt. He would wince every once and a while and he would try to move but he couldn't because of how many things he was attached to. It was obvious that he was uncomfortable. His heart rate was also sky high. It was up in the 220's from the 140's. The doctor also asked us to sign a consent form to do blood transfusions which would most likely become necessary soon.
Lots of very scary things happening all at once. It was impossible to keep it together. To see my brand new son hooked up to so many things when just hours before, he was just fine, was hard to take in. Also seeing him awake and looking straight at me was absolutely heart wrenching. It was as if he was telling me through his eyes that he was in pain and he needed it to stop. Seriously. Lost it... Thankfully we have good people in our lives though send Ray was able to call someone to help him give a Priesthood blessing to Lucas. The blessing promised that he would heal and overcome this. Thank you Heavenly Father.
There wasn't much more information the doctor could give at that point, but Ray and I weren't going anywhere. The hospital set us up in a family room that had an actual bed, so we at least were able to get a few hours of sleep.
In the morning, we headed straight back to see Lucas. A nurse was constantly working on him, taking blood, giving new medicine, listening to him, trying to get his heart rate down. We asked how he was doing but she said he wasn't any better at that point. He was having trouble producing urine, his body was struggling to supply oxygen everywhere it needed to go, so they had to give him 96% oxygen through the ventilator to compensate. The doctor came to do rounds and he explained that they had done blood cultures and he was expecting those to come back positive for infection. They had ruled out a perforated bowel, so that was good at least. They knew it was an infection, they just needed to find out where, and that would happen soon. The doctor also wanted to try to wean him off such a high concentration of oxygen, so they planned on lowering that throughout the day.
As the day went on, they kept a close watch on him, continued giving him antibiotics and letting those run it's course. His heart rate was still very very high though. It hadn't dropped below 200 yet,
so they were trying to get that under control. Eventually, they found that as they gave him a lot of
fluids that it increased the volume in his veins and that it actually helped calm his heart rate down, so they kept doing that regularly. He slowly started improving and finally dropped below 200 late in the evening. It looked as if the antibiotics were also beginning to do their job. He was finally starting to turn a corner and improve, though he still had a long way to go. Late that night was also when he began producing more urine and had a bowel movement. All very good things showing that his organs were beginning to function again and that they were getting healthy again too.
The blood cultures ultimately did come back positive, so they know that he does have a blood infection, now they're just working on figuring out what kind of blood infection it is specifically. The antibiotics he is on now are general, but powerful so he's already being treated for as much as they can. Once they find out what it is specifically they will adjust his medications accordingly to go after it.
So all that was crazy. Since he started improving last night, we decided to come home to see Warren and give him some attention and also to sleep in our own bed and get a good rest. The worst of it seems to be over now though so we are all breathing a huge sigh of relief. He will get better, but it will take time. I'm much more together today than I was yesterday.
Lucas still looks like he is in rough shape. He's really puffy from all the fluids he's been given, but in the next couple days he should be looking better. The fluid just has to work through him. He is also more alert today than he was yesterday. Yesterday with all the stuff going on in his body he pretty much just shut down and slept all day, which it was grateful for. Sleep is always such a great thing when you're sick so you can escape how you feel for that time. Since he is more alert today that means he really is feeling better. Now he just looks frustrated that his movement is so restricted because of all the tubes. At least he doesn't look like he's in pain like he did when this all began.
It's crazy. This boy is only 9 days old, but I love him so much already. I was ready to do anything for him to help him stop hurting, and so was Ray. I'm so thankful that this boy is so strong. He is pulling through this and his body is fighting. He truly is a little champ.
Monday evening we came to see the little man in the hospital. The nurse told us that she had noticed his little belly was a bit bigger, and she thought it was because he was up to 15mL of milk per feeding. However, after three hours his belly didn't appear to get any smaller so she was hesitant to feed him again until a nurse practitioner took a look at him. We had to leave before that happened though. We trusted that all would be well and that Lucas was in good hands.
We spent the evening in Manitou playing at the penny arcade with Warren. He went on a bunch of rides, played some games and did astonishingly well at air hockey. He stood on top of a milk crate and played like a champ!
After we got home we settled down for the night, put Warren to bed and we were getting to bed ourselves. Around 11:00 pm my phone rang. I didn't know what number it was, but I did remember seeing that I had missed a call from that number earlier in the night when we were playing at the arcade. A voicemail was left, but for whatever reason, my phone wasn't letting me access that one particular message. So when the phone was ringing at 11:00, I had a heart sinking realization that it was the hospital. Something was going on with Lucas and they were trying to get a hold of me. I answered the phone and that's exactly what it was. Lucas' doctor was calling me to tell me that he had gotten really sick really fast. He had turned an awful shade of gray and had been put on a ventilator. The doctor told me that we needed to come in right away so she could tell us more.
I realized then what a giant blessing and tender mercy it was that my mom was here. With her being here at this particular time, it gave us the freedom to be able to go to the hospital at a moments notice. I don't know how we would have handled that situation if nobody had been there to watch over Warren. There is no way I could have handled what was coming by myself.
Ray and I got to the hospital and as we turned the corner to Lucas' room, all the lights were on and there were at least six people hovering around him and another three people waiting to get in next. It was obvious something was seriously wrong. They made room for us to come in and began explaining things to us. They said that something was definitely wrong in his belly. It was still distended and and with his sudden change of color and not being able to maintain his oxygen levels, they had to rush to his aid and figure out what was going on. The doctor pulled us aside and gave us
more information. She said that it looked to be either some sort of scary infection or that his bowel had perforated. They did a whole bunch of X-rays to try to rule that out. They also put two IV's in
him, one in his hand and the other in his scalp. They started pumping him full of antibiotics, blood pressure medications and pain medications. Lucas looked awful. His poor little face was so telling of how he felt. He would wince every once and a while and he would try to move but he couldn't because of how many things he was attached to. It was obvious that he was uncomfortable. His heart rate was also sky high. It was up in the 220's from the 140's. The doctor also asked us to sign a consent form to do blood transfusions which would most likely become necessary soon.
Lots of very scary things happening all at once. It was impossible to keep it together. To see my brand new son hooked up to so many things when just hours before, he was just fine, was hard to take in. Also seeing him awake and looking straight at me was absolutely heart wrenching. It was as if he was telling me through his eyes that he was in pain and he needed it to stop. Seriously. Lost it... Thankfully we have good people in our lives though send Ray was able to call someone to help him give a Priesthood blessing to Lucas. The blessing promised that he would heal and overcome this. Thank you Heavenly Father.
There wasn't much more information the doctor could give at that point, but Ray and I weren't going anywhere. The hospital set us up in a family room that had an actual bed, so we at least were able to get a few hours of sleep.
In the morning, we headed straight back to see Lucas. A nurse was constantly working on him, taking blood, giving new medicine, listening to him, trying to get his heart rate down. We asked how he was doing but she said he wasn't any better at that point. He was having trouble producing urine, his body was struggling to supply oxygen everywhere it needed to go, so they had to give him 96% oxygen through the ventilator to compensate. The doctor came to do rounds and he explained that they had done blood cultures and he was expecting those to come back positive for infection. They had ruled out a perforated bowel, so that was good at least. They knew it was an infection, they just needed to find out where, and that would happen soon. The doctor also wanted to try to wean him off such a high concentration of oxygen, so they planned on lowering that throughout the day.
As the day went on, they kept a close watch on him, continued giving him antibiotics and letting those run it's course. His heart rate was still very very high though. It hadn't dropped below 200 yet,
so they were trying to get that under control. Eventually, they found that as they gave him a lot of
fluids that it increased the volume in his veins and that it actually helped calm his heart rate down, so they kept doing that regularly. He slowly started improving and finally dropped below 200 late in the evening. It looked as if the antibiotics were also beginning to do their job. He was finally starting to turn a corner and improve, though he still had a long way to go. Late that night was also when he began producing more urine and had a bowel movement. All very good things showing that his organs were beginning to function again and that they were getting healthy again too.
The blood cultures ultimately did come back positive, so they know that he does have a blood infection, now they're just working on figuring out what kind of blood infection it is specifically. The antibiotics he is on now are general, but powerful so he's already being treated for as much as they can. Once they find out what it is specifically they will adjust his medications accordingly to go after it.
So all that was crazy. Since he started improving last night, we decided to come home to see Warren and give him some attention and also to sleep in our own bed and get a good rest. The worst of it seems to be over now though so we are all breathing a huge sigh of relief. He will get better, but it will take time. I'm much more together today than I was yesterday.
Lucas still looks like he is in rough shape. He's really puffy from all the fluids he's been given, but in the next couple days he should be looking better. The fluid just has to work through him. He is also more alert today than he was yesterday. Yesterday with all the stuff going on in his body he pretty much just shut down and slept all day, which it was grateful for. Sleep is always such a great thing when you're sick so you can escape how you feel for that time. Since he is more alert today that means he really is feeling better. Now he just looks frustrated that his movement is so restricted because of all the tubes. At least he doesn't look like he's in pain like he did when this all began.
It's crazy. This boy is only 9 days old, but I love him so much already. I was ready to do anything for him to help him stop hurting, and so was Ray. I'm so thankful that this boy is so strong. He is pulling through this and his body is fighting. He truly is a little champ.
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