A Lazy Sunday

We had a very, very lazy afternoon today. We stayed home all afternoon and did absolutely nothing! Nothing but cuddle, play and talk with Carson! Everyone wanted a bit of Carson action today - even Logan! I'll warn you, I went a bit snap happy with the camera!

Update on Carson...

On Sunday evening Carson was having a hard time breathing again. He was breathing very, VERY rapidly (around 80-90 breaths per minute) was in drawing, nasal flaring and head bobbing. Mark and I took him back to the emergency at the children's hospital. It was very busy and crowded, but because of Carson's history we were seen immediately.

They did all our old routine tests - blood sugar, blood gas and a chest xray. The blood sugar and blood gases came back normal and his heart rate and oxygen saturation were perfect. His lungs sounded great and the chest xray showed them clear and fully inflated (yay!). When the doctor was telling me all this I started to feel as if maybe we had over reacted and he really wasn't breathing that hard. But that's when he broke the new news....

The chest xray showed Carson's heart to be enlarged - significantly compared to all of his past chest xrays. I asked if this could be due to how they took this chest xray (sitting up right) compared to the past xrays (laying flat). The doctor said it could make a tiny difference, but not as much of a difference as they were seeing. I was trying to stay calm and optimistic, but your mind immediately starts thinking about holes in the heart, valve issues and open heart surgery (especially since friends of ours are going through heart issues with their newborn son.) They paged cardio for a consult, scheduled an echo for the morning and immediately did an ECG (which came back completely normal). They were going to admit us, but unfortunately, they had no where for us to go, all of the units were full. So we spent a very long, UNCOMFORTABLE night in the ER. (Carson at this point was just being monitored, not on oxygen (his breathing had slowed down) or any medication. They had tried to start an IV (just incase) when they took blood, but they didn't secure it well enough and it came out - causing blood to go EVERYWHERE!)

The bed situation didn't change any in the morning. They performed the echo in our ER room. Right away the technician gave us excellent news. His heart in fact was NOT enlarged - instead it was an enlarged thymus gland. The technician assured us an enlarged thymus is not something serious. When the doctors came to do rounds (again, still in the ER) they decided to keep us overnight for observation. They said they were worried Carson's thymus was pressing on his windpipe - which would be the cause of his rapid breathing. However, we got the feeling that they didn't really know a lot about the thymus, as they weren't able to answer a lot of our other questions (ie why did the thymus grow so big so fast in the last two weeks? How do you fix an enlarged thymus? etc). Once we were fiiiiiiiiiinally given a room in Unit 2 (around 2pm), the doctors came back. They had gone and spoke with an oncologist (which again made me jump and start envisioning scary things like chemo treatments etc). The oncologist said he sees large thymus quite frequently in infants and most of the time its nothing to worry about. He also said that in infants the thymus is quite malleable so it shouldn't be pressing on his windpipe, so something else must have been causing the respiratory distress. They settled on mucus, and sent us home. I was so tired and so sick at this point that I gladly went home, and didn't get answers to all the questions I had.

So I made an appointment with my family doctor, and we saw her this morning. She isn't super familiar with the thymus either, but after speaking with her I feel a whole lot more comfortable and certain that Carson is ok. These are the answers she gave us:

Why is Carson's thymus enlarged?

The thymus is responsible for creating white blood cells and plays a huge role in the body's immune system. She believes Carson's thymus may be enlarged due to how sick he was last month. His body had to work very hard to fight the RSV - so she believes it may just be large from all the tough work. She also felt that it could have been large already when we were in the hospital last time -but this type of xray (sitting upright) showed it at a better angle.

Should we be worried that it is enlarged?

At this point, no. As long as Carson continues to grow and gain weight, we shouldn't worry as this would rule out anything significant. And Carson is excelling at weight gain! He now weighs 11.3 pounds - jumping from the 25th percentile to the 50th in just over a week!

How do you "cure" an enlarged thymus?

The thymus should shrink back to a normal size on its own. But to be sure the ER doctors have also reffered us to a pediatrician (I've requested the same one we saw with Katie) for monthly check ups. These check ups will also include a chest xray and blood work to keep an eye on things. My family doctor has also offered to see us every 3-4 weeks (or whenever I feel something is not right).

What is causing Carson to breathe so rapidly?

Carson continues to breathe faster than a "regular" baby. A regular respiratory rate is under 4o breaths per minute - Carson is typically in the 60's (although he does have his moments of slower or faster breathing). Dr. Bennion (our family doctor) believes Carson may still be breathing rapidly as he is still recovering from the RSV/bronchiolitis. Even though his lungs sound fine and the chest xray is clear, he still may be battling the last bits of the bug.

Is it bad for Carson to continue breathing this fast?

Yes, but only if its causing indrawing, head bobbing, nasal flarring etc - visual signs that he is struggling to breathe. Carson hasn't shown any of those signs since Sunday. He is very content, sleeping, eating and peeing great. The rapid breathing on its own isn't a huge concern if he's not struggling as infant's already have a higher heart rate. Should any of the other symptoms return, we're to bring him back to the ER again.

Overall Dr. Bennion was VERY pleased with how well Carson is doing. He's doing everything a baby his age should be. Which makes me feel much, MUCH better. Sometimes I feel like I am a first time mother again with Carson. It's hard to remember what normal breathing is and I often feel paranoid that something is wrong, or worry that I am overlooking something. But thankfully we have a great support team, and I know that if ever something doesn't seem right, I wont be scoffed at for bringing him in to be seen.

One Month (plus a week or two)

We missed Carson's one month milestone two weeks ago. We were kind of preoccupied with other things. So his one month picture isn't very accurate, but will have to do.

At Carson's 6 week check up yesterday he weighed a whopping 9.5 pounds. I was shocked when the doctor told me, and made her reweigh him to be sure. When we were admitted to ICU on January 18th they weighed Carson and said he was only 6.8 pounds. Then he was only being fed 10ml an hour through the NG/NJ tubes for a week.... I think they had to have made a mistake. There's no way he lost so much weight so fast, and then gained so much weight so fast! Anyways, Carson has been making up for lost time... all that kid wants to do is eat, eat, eat! Good thing I have a freezer full of breast milk to supplement him with as I can't keep up with this porker!

Carson has also started to smile! He gave his very first smile to my mom the day after he was extubated and we were still in ICU. He gives the best smiles, they're super funny. His whole entire face lights up. I have been trying to catch a picture of one, but he never gives you any warning and they don't last very long. I'll keep trying.

Katie and Logan are happy to have life back to normal. Katie loooooooooves her baby brother and is always begging "Let ME see Carson!" I can't turn my back on her for a second, or she'll be giving Carson kisses, bringing him toys (which always end up smothering his face) or shoving his soother into his mouth (whether he wants it or not!)

Logan still isn't very impressed with Carson. But again, I know that will change the instant he can hold a hockey stick!

What if His healing comes through tears?

What a long, long two weeks. Most of it feels like a total blurr. I figured that before I forget even more than I already have, I should blog it. So here we go...

From day one Carson was an easy baby. We had a schedule down after being home from the hospital for only 2 days. He ate, he slept, he pooped. He rarely cried, and if he did, it was because he was either tired or hungry - both very easy fixes.

On Monday, January 16th this started to change. That Monday was the first day Carson was "naughty". He seemed gassy and cholicy and wanted to eat every 2 hours (rather than our usual 4). He didn't have a fever or a cough - just fussy - like Logan and Katie both were when they were babies.


Tuesday afternoon Carson started coughing and getting snotty. Katie had a bad cold, so I figured she had shared her germs with Carson through one of her many, many kisses - she LOVES Carson! He was also very sleepy all day - I had to wake him every 4 hours to feed. I assumed he was balancing out from Monday where he didn't sleep much and had eaten a TON! Tuesday night late, just before Mark and I went to bed his throat started sounding hoarse. Over night Carson was not interested in nursing at all. I kept trying to wake him up, but he would only nurse for a few minutes at a time and then drift back to sleep. Wednesday morning showed no change or improvement, and by then he was having less wet diapers than usual.

I called the public health nurse first thing that morning. I gave her Carson's symptoms. She had me check him for a fever (which he had) and signs of respiratory distress (which he had none). She could hear him coughing over the phone and suggested I take him to my family doctor. Now, I tend to take my kids to the doctor a lot. And every time I do I feel like they scoff at me. "They have a cold... it'll go away on its own." or "Its just pink eye... it'll go away on its own". That or by the time I get to the doctor, my kids are better and the doctor ends up thinking I'm some crazy over protective mama bear. But I took her advice and called for an appointment, luckily the receptionists love me there and they slid me in at 1 that afternoon.


Now, this just happened to be THE COLDEST day of the year.. -31 (before considering the windchill) and despite being plugged in all morning, my car would not start. I called everyone I could think of off the top of my head for a ride, or to borrow their car. No luck. I considered cancelling or postponing the appointment, but my doctor's office is closed for lunch between 12-1pm, so I couldn't even if I wanted to. I started to panic. I guess somewhere deep inside I knew Carson was pretty sick and HAD to be seen. I had a mini melt down while skyping with my mom. Thankfully I got a hold of my sister who was out and about running errands and she lent me her car. (By this time it was 1:10 before I even left my house!)

When I got to my family doctor he saw us right away - even though we were very, very late. He took one look at Carson and recommended we go to the Children's hospital. At this point Carson was having a bit of a tough time breathing (he was in drawing at the ribs) and had stopped breathing for 5 seconds. He explained that when babies are this little you just don't want to risk it. At this point I still didn't realize just how sick Carson was and expressed how I didn't want them to think I was being over protective and have to wait for hours in the ER. Dr. deBruin said he'd write them a note explaining why we were there, and even call ahead to advise them we were on our way.

When we got to the ER a triage nurse saw us right away. While she was checking Carson out I just kept trying to give her Dr. deBruin's note and explain that my family doctor MADE me come. (Again, I was worried she thought I was crazy). But, she really wasn't listening to me. She had placed an SPO2 monitor on Carson, and when it was registering his oxygen saturation to be in the low 80's she grabbed Carson's car seat and barked "Why didn't you or your doctor think to call an ambulance?!" She then rushed Carson to the back yelling for a trauma team to meet us in trauma one. I was a little stunned and raced to follow her to the back.

There was people EVERYWHERE and I just stood there for probably 10 minutes, in my coat, just shocked while people ripped Carson out of his car seat, stripped him out of his clothes and started hooking him up to all sorts of monitors and machines. The doctor asked me all sorts of questions and they started running all sorts of tests - they sent blood and urine samples away and did a spinal tap. They hooked him up to an IV for fluid (as he was dehydrated and started giving him oxygen through nasal prongs. However, he was still struggling to breathe and his pauses in breath were getting longer and longer. In the trauma room he stopped breathing for up to 17 seconds at a time. I started texting Mark things like "Come now! HURRY!" and totalling panicking.

By the time Mark arrived a doctor from the ICU had already seen Carson and decided to admit him. His breathing still was not improving, so they switched him to high flow oxygen prongs. Those didn't make any difference, so then they pulled out this lovely oxygen mask looking thing seen below. But his breathing kept getting worse and by this point he wasn't breathing for 20-25 seconds at a time more and more frequently. (That was the LONGEST 20 seconds of my life!!) He was in drawing like crazy, his nostrils were flaring and his head bobbed with each breath. As a last resort Dr. Ross pumped Carson full of caffeine to see if that would stimulate him to start breathing more on his own - again, no change. At this point Dr. Ross told us we would probably have to intubate him. She explained how the ventilator worked and the process. It was so hard to see Carson struggling to breathe.


They said I had to leave while they intubated him - thankfully it only took 20 minutes. It was such a change when I saw him next. He was just laying there - no struggling, no tummy heaving or head bobbing. Dr. Ross explained that in order to place the breathing tube in they had to give him something to completely paralyze him. They also then started sedating him with morphine. It was very important that Carson not move or struggle at all, as this could disturb the tube - which could cause permanent damage to his vocal chords, throat or lungs. They "inserted" a second IV and started Carson on 3 different types of antibiotics. They also started feeding him through an NG tube in his nose into his stomach. Upon hearing all this my parents decided to fly home early from Hawaii that very night. They caught the next available flight and were home the next morning.

Carson layed like this for the next 5 days. He was so sedated that he never moved or opened his eyes. Because of all the fluid he was getting through the IVs he became very swollen and puffy. He didn't look anything like himself. There were wires and tubes everywhere. They monitored him 24/7 and there was a nurse parked right beside his bed at every moment, who never took their eyes off of him. Mark and I are so thankful for the ICU doctors and nurses. They were wonderful! They took the time to explain everything to us, to tell us what they were doing, what drugs they were giving him, etc. The days went by so fast, and its hard to remember what happened on what day. It was an emotional roller coaster. We had good days where Carson responded well to the treatments and they ruled out scary things like meningitis and stopped some of the antibiotics. But we also had bad days, where we learnt his right lung had collapsed, where his oxygen saturation levels kept dropping, where his heart rate was spiking, where his blood pressure was sagging, where they inserted an NJ tube to bypass his stomach and feed him directly into his intestines, where they considered placing him on an oscillator.

In the end they diagnosed Carson with a cocktail of things.. Respiratory Syncytial Virus (RSV), bronchiolitis, pneumonia and haemophilus influenza. They continued giving him morphine to sedate him (somtimes they also had to give him adavan as well to settle him down when he got really uncomfortable) antibiotics to treat the pneumonia, ventalin to break up the mucous in his lungs, diuretics to help remove all the excess fluids that surrounded his lungs and suctionned him continuously. The biohazard box was full at the end of each day.

Once the respiratory therapists got the ventilator settings to a point where Carson was no longer setting of alarms every 5 minutes, they started cutting back on his morphine. Dr. Ross was very concerned about the amount of morphine Carson had been on for so long. When they lowered his morhine dosage Carson started opening his eyes. The first couple of days it was very hard and scary to see. When he would open his eyes they were very unfocused. They were glazed over and would be looking in different directions and would roll to the back of his head. As the morphine dosage got lower and lower, he became more and more alert. Which was both nice and hard to see at the same time. It was nice to see him open his eyes and make eye contact with you, but it was hard to see him became more and more aware of the breathing tube. As he became more awake he was more and more irritated by the tube. He would gag on it, have coughing fits and cry, a lot! It was awful seeing him cough and cry as no sound would come out. They had to restrain Carson with "baby handcuffs" so that he wouldn't pull at the breathing tube.

One of the things I really appreciated about the ICU nurses was that they talked to Carson a lot (even when he was heavily sedated) and called him by name. One nurse gave Carson this stuffed duck, and whenever he was awake would "play" with him with it.

When I got to the hospital on Thursday, January 26th, after 9 days on the ventilator, all of the nurses and resident doctors kept saying "hopefully today's the day!" They all felt Carson was ready to be taken off the ventilator. I got my hopes up and couldn't wait for rounds to hear what Dr. Ross had to say. However, shortly before rounds the head respiratory therapist came in to check on Carson. He flat out said he did not think Carson was ready and he was going to advise Dr. Ross to wait a couple more days. I was crushed, heart broken, and it took every shred of self control not punch him. When rounds came around though I was pleasantly surprised to hear Dr. Ross disagreed with him. She felt he was ready to come off, and that it could even help reinflate his right lung. They stopped his morphine and NJ feeds, and at 11am they removed the tube!

Once the tube was out I was finally able to hold him. I'm not ashamed to admit that I cried. Even though the breathing tube was out, he was still hooked up to two IVs, an SPO2 monitor, heart monitors, an NG tube, an NJ tube and oxygen (via nasal prongs). It made picking him up difficult, but it was worth it!

He was so much happier without the breathing tube! And he looked soooooo much more like himself!

They kept us in ICU overnight for observation. The next day we were moved up to unit 4. What a change! In ICU we had a nurse all to ourselves who was there 24/7 watching only Carson, we were not able to really even touch Carson - the nurses did everything. Once we got to Unit 4 there was one nurse to four patients. We could never really find her and had to page when we needed someone. We were expected to be in his room at all times and had to change all his diapers. But what a nice change!! Carson continued to improve each day (with only one bad night where his breaths per minute sky rocketed and they had to administer him epinephrine). They stopped his antibiotics on January 28th but started giving him a salt water/saline nebulizer 4 times daily to help with the pneumonia/collapsed lung. A physiotherapist also came twice a day to try to break up the mucus secretions. We slowly got rid of wires and tubes one by one. However, the nurses and doctors still would not give us any sort of timeline.

On Monday, January 30th, the pediatrician decided to take Carson off of the oxygen and see how he did with room air. Carson's oxygen saturation levels were never really a concern when we were up in Unit 4. He was consistently at 97-100%. His breathing rate is what they were most concerned about. A healthy newborn will breath anywhere between 30-50 breaths per minute. Carson had been continuously breathing in the high 60s-70's. The pediatrician said that because Carson was still sick, and has a collapsed lung, he would be happy with anything between 40-60. When they took him off the oxygen and removed the NG tube his breaths per minute improved and were then around 44 when sleeping, 55 when awake and low 60s when having a temper tantrum! The doctor said if Carson continued to maintain these levels overnight, we could discuss going home tomorrow - which I took to mean tomorrow we would discuss some sort of timeline about how many days before we could go home.

So imagine my surprise when on Tuesday morning (January 31st) the pediatrician, after giving Carson a thorough check up, said we could go home that very afternoon! I called Mark and told him the good news, but not to jinx anything he should leave the carseat in the truck until we were absolutely ready to leave. We sat in Carson's hospital room watching the clock all morning. I guess the nurse sensed our eagerness, so she paged the doctor and returned with our discharge papers!

The first night at home wasn't the smooth transistion we had hoped for. Carson cried - a lot! He woke up every 3 hours to eat, but then took an hour to settle back down and fall asleep afterwards. We didn't get a lot of sleep that night - but it sure was nice to be in our own beds rather than at the hospital! We've been joking that we took the wrong baby home from the hospital, as ours never used to cry. But I think its just Carson adjusting to the quietness of home. With each passing day he gets happier and happier. His breathing seems to be getting easier and easier - with little to no indrawing. His nose isn't near as stuffy either. We have his 6 week check up scheduled for Friday, which is nice as it will also give me peace of mind.

Thank you for ALL your prayers, notes of encouragments, offers to help out with Logan and Katie, meals and visits! Mark and I were continuously overwhelmed with the support we were shown from our friends, family, church family and community.