Fifteen and Sixteen weeks old

Actual: Fifteen weeks (December 16th - 22nd)
Corrected: Two weeks
Weight: 6 pounds 14 ounces (December 20th)

Evan had another balloon dilation this week. He sounded so good before the appointment that Andrew and I were secretly hoping the ENT doctor would take a look and say "All better!" While this didn't happen, Evan's airway was a lot more open than previous procedures. This means the scar tissue is healing! Unfortunately, as they had to bag him (to help with breathing) a lot during the procedure, his stomach filled with air and he had a hard time breathing when he started waking up. He ended up intubated until about 4 pm. It was so hard to see him intubated again. I knew it was only for a little while, but it was still difficult. Since the PICU census was low, we were on the side with private rooms. This was nice, but suuuuuper chilly. I actually got a full night's sleep since the night nurse did all the feedings and diaper changes. I guess if Evan's in the hospital I should let the nurses do their jobs! :) Since Evan's throat looked so much better, the doctor scheduled the next procedure for four weeks out. Four weeks! I think Andrew and I are going to be a wreck weeks 3-4... stay tuned.

The following day we were discharged in the morning and went straight to the eye doctor next door. Evan's left eye is looking great. The right eye still has some scar tissue that isn't going away. It had been a few weeks since the doctor saw any changes so he wanted us to go to see another eye specialist in Rochester for a second opinion. Thankfully she was able to fit us in the next day (Thursday). Evan was a champ on his first road trip to Rochester. He was pretty unimpressed and slept the whole time. The specialist in Rochester would be the doctor that would perform the surgery on Evan's eye should it progress. After a quick peak, she said that we would just monitor it for now. The next month is crucial since Evan is now full term and the eyes are forming all their connections. I guess Andrew and I will just be on pins and needles until then.

Evan's physical therapy and occupational therapy through the Early Intervention program also started this week. He slept through both appointments. Whoops. At this stage, PT and OT will have a little bit of cross over

Hot dog! Got my dino. I am all set for hangin' out.

Evan is filling the sling out more.
Still never too early to teach him the importance of Toolbelt Thursday.

Geesh, finish up with the pictures! I have snuggling to do!

I don't always pee in my bath, but when I do, I'm serious about it.

So you're telling me because I'm cute, I don't have to be good!?

You're planning on taking HOW many pictures!?

This is as good a time as any to practice my Thriller moves.

Seriously Gma, what's with shoving me into things?!
Baskets, a stocking... what's next?!

Excuse me! This hat is waaay too big.

This is what a pile of snuggles looks like.

Actual: Sixteen weeks (December 23rd - 29th)
Corrected: Three weeks
Weight: 7 pounds 7 ounces (December 27th)

We were back at the eye doctor on Monday. It had been just 3 days so we weren't expecting too much change. We were able to go to Gma and Grampa's house for a nice visit. Evan also got to snuggle with his other Grandma for the first time. He christened her by sliming her nice scarf. Oh well, good thing he's cute!

It felt weird not being with my family on Christmas Eve. It's the first time in my life I haven't been at my Grandparent's. Andrew, Evan and I enjoyed a nice night at the house. Evan opened up his Christmas Eve present - An Otis Christmas. It's a cute little story about a tractor that saves the day (and new baby horse!) Evan was a good little listener.

Evan enjoyed his new books from Santa and us. He got a few little toys, but nothing that he can't play with just yet. Andrew also got him set for Opening Day of Baseball - Evan has 3 new Yankee's onzies to wear. Hopefully they don't let him down again this year...

Christmas Day was spent with Evan's other Grandma (Andrew's mom). Evan was a little more awake for this visit.

I'll wake up in juuuust a second Grandma.

Ugh, working from home is boring Daddy!

My Christmas Eve present you say?
How the heck am I supposed to break into this thing?!

OMGosh! Is Otis going to make it in time? Keep reading Daddy!

Hi Momma. Why can't we just hang out like this?
I don't really feel like turning my head. I've done it once. Meh.

Go to sleep? But why? I wanna see this "Santa" everyone's been talking about.

Um 'scuse me. This Christmas morning snuggle isn't working for me.
There's a dog ear in my line of vision.

I still don't get it. A fat man breaks into our house, steals cookies and milk and leaves presents?
I'd rather just keep the creeper out and drink my milk thank you.

Ermergerd Uncle Owey! What did you put on my head?!

Well, if the crown fits, might as well rule the kingdom.
First order of business... anointing a royal baby holder. I no longer want to sleep in my bassinet.

Hey Layla. How about helping your brother out.
You distract Momma and Daddy and I'll do tricks while they're not looking.

Fourteen weeks 2-7 days old

Well I was hoping to post every Sunday, but Evan is my kryptonite. I just can't say no to him when he wants to cuddle!

We had a very good week. We had another follow up appointment with the eye doctor. Evan's eyes continue to heal. Hopefully we will be off the weekly appointments sooner rather than later.

Evan remains a quiet baby!! So far, his trachea seems to be responding to the latest balloon procedure. He does go back tomorrow morning (we have to be at the hospital at 6 am) for another bronchoscopy to see how it looks. Andrew and I know that the airway is more open than ever before.

We went to the lung clinic today. The lung clinic was overseeing the bradycardia/apnea monitor. All of the data was downloaded and reviewed. I'm happy to report that there were no true alarms that went off! Andrew and I were confident that Evan was behaving, but it's nice to have the confirmation. Evan will continue to use the monitor for a little longer, but it's okay to only hook him up to it when we're not in the room with him or we're all sleeping. Wee! More sling time!! (Evan is in the sling as I type this).

In sad news, our hamster Nugget passed away this weekend. I'm glad Evan and I talked to her on Friday and gave her treats. She was a fun little hamster with an even better story. :)

And now, what you've been waiting for:

Mmmm, don't stop Uncle Owey!

Well you gave me milk, so I guess I should trust you.

Hey! This is my bed! Who let these squatters in!?

Hm. Bath time again. Even with peeing on momma yesterday
I still had to get a bath today. Time to rethink my plan of attack.

Oh this towel is so comfy! Maybe bath time isn't so bad!

Hangin' with Daddy. I think he's pretty great.

So comfy with Uncle Owey that I passed right out in a funny position!

Oh I love this tree! I love the lights!!

Fa la la la la... just make sure you don't give Santa any of my milk.
You can give him something else. Like whiskey.

Fourteen weeks 1 day old

Evan's due date was on the 8th so he the confusion about his age has started. Until he is about 2 years old, he will have an actual and corrected age. His actual age is 14 weeks while his corrected age is 1 day. Just in the limited amount of time that we've been out in the public, people are confused when I say, "Yeah! He's 14 weeks old." You can see the wheels in their heads as they try to figure it out since the baby before them does not look like a typical 14 week old baby.

Evan has had a flurry of appointments. (Hence my lack of updates - I foolishly thought I would have a little more time once he was home. Ha! Now my time is spent snuggling Evan. I actually almost argued with Andrew today when he got home from work and wanted to cuddle with his son. Whoops. Guess I gotta tone down my possessiveness...)

Today we saw surgery and cardiology. Surgery was just to check up on the hernia site. It feels like Evan had hernia surgery forever ago. Thankfully he is healing nicely.

The cardiologist was also positive. While Evan does have a slight murmur, it's only a 1 on a scale of 0-6 (6 being bad). Evan should grow out of the PFO and the pulmonary valve stenosis (which may actually be the murmur it's so faint it's hard to tell).

Evan was a champ in his car seat today. Every time he is in it he seems to like it more. I have to say that I am also more comfortable with him in it too. He's a little bigger now so I can actually see his face in the rearview mirror!

Evan's breathing remains quiet! We do have another balloon procedure scheduled for next Tuesday. Again, we're hoping that Evan will just have the procedures a few times and it will correct the problem.

Last night was a good night for Mr. Pants. He has had his days and nights mixed up since he came home from the hospital. It's actually kind of nice being awake with him at 3 in the morning. (Now that he's here, the house is a balmy 71 degrees all the time! Wee!) Andrew and I take turns and sleep in shifts since Evan likes to party all night long. Last night he did sleep for a good stretch though. It is nice to know that he's acting like a typical full term baby though! Hopefully we'll get his times sorted out soon so Andrew and I don't have to turn into vampires!

Finally - Evan Picture Overload:

"So is this what the third trimester feels like!?"
Evan helping decorate.
He was not very helpful since he slept the whole time.

"I hate you! I hate you all! Get me outta here!"
MacDonald tradition - put the baby in the basket. Evan's uncle Owen was just as thrilled.

"Zzzz"
Proud Daddy!

"Stretch it out!"
Morning yoga.

"Pffffftttt"

"Don't bring me problems, bring me solutions."

Thirteen weeks 3 days old

Evan has had quite the adventurous few days.

Friday - we were discharged (again)! Evan was so excited to be home he wanted to stay up all night. I think he was afraid he was going to miss out on something.

Saturday - We tried out the baby wearing sling that his Canadian cousin sent. I think he loved it! I'm still learning how to tuck him in, but I do think we're both going to love using it. Since he's on a monitor, we are a little tethered and can't go too far, but it's still fun to use.

Sunday was Evan's 3 month birthday! He celebrated with a marathon snuggle with his Gma while I decorated the tree.

Monday brought us back to the pediatrician for a baseline appointment. He was starting to get noisy again, but he had an appointment with the ENT doctor the next day so we weren't too concerned. The pediatrician appointment went really well and we were back home with enough time for Andrew to go to work for the afternoon. I accomplished my goal of doing the dishes. :) Oh, and snuggling Evan of course!

When Andrew got home from work, Evan was noisier than he was during the day. We called the ENT doctor and asked if Evan could be scoped the next morning instead of just having a check up. We managed to land a 6:30 am procedure time. Around 9 pm, it was apparent that Evan was really starting to work harder to breathe. We decided to take him to the emergency room just as a precaution. We knew that we would be up all night worrying about him anyway. By the time we got to the ER, his breathing was back to quiet. After he was hooked up to the pulse ox, we saw perfect stats. Oh well, Andrew and I were still relieved we brought him in. Since he was having the procedure the next morning, we were moved to the Hematology and Oncology floor for the evening. Since Evan couldn't eat after midnight, he was super cranky. I stayed at the hospital with him but was pretty tired since Andrew and I were sleeping in 3 hour shifts all weekend. Thankfully, Evan's wonderful nurse took him out of the room for a few hours so I could get a little bit of sleep. She brought him back into the room about 5:30 am and Evan slept until the procedure at about 8 am. Woot!

The ENT doctor showed us pictures of Evan's trachea after the procedure. He said that it was a good thing Evan came in when he did as the trachea had narrowed again. It wasn't as bad as the first time, but it was getting there. We will come back in another 2 weeks to repeat the procedure (unless Evan starts to get noisy again). We stayed the night in the PICU and were discharged this morning around 9:30 am. Evan and I are hanging out while Andrew heads to work.

The scar tissue in the trachea is thin enough that the ENT doctor is hopeful that a few balloon therapy procedures will remedy the situation. If this most recent procedure doesn't last very long (the first procedure lasted for about 10 days), then we may have to look at other options. For now, we'll plan on Evan going back in 2 weeks to repeat the procedure though.

I'll have to post some pictures later, but Mr. Pants is tipping the scales at 5 pounds 5 ounces!!! He's a giant! :)

Twelve weeks 5 days old

It was deja vu as we drove away from the hospital with our little man in the car. This time, he was a quiet baby that slept the entire way home. No more zombaby! (Before the balloon therapy, Evan sounded like a zombie when he was breathing.)

It's amazing how quickly everything moved. Evan is truly remarkable. We do have to watch for signs that the balloon therapy may not have worked. (Thankfully our parking pass doesn't expire until the middle of December since we will still be heading down to the hospital for follow up appointments with ENT, surgery for the hernia, Hearing clinic...) Evan seems so much more content now. Well, as long as he's being held. Mr. Pants is quite the snuggle monster. I'm not sure how I'm going to get anything done!

We had training on a bradycardia/apnea monitor that Evan will be hooked up to until the doctors decide it isn't necessary anymore. The monitor is in a little bag and is about the size of two stacked reams of paper. Thanks to the awesome family bassinet (80 years old!), we've kind of looped the straps of the bag over the frame and can easily wheel Evan from room to room without having to tote the bag too. The monitor is pretty advanced. Evan has two electrodes that are stuck to him (just like in the hospital), that plug into the monitor. It has preset settings (based on the doctor's prescription) that tell the machine when to alarm. The machine will alarm if Evan stops breathing for more than 15 seconds or if his heart rate goes above 220 beats per minute or below 80 beats per minute. It also alarms when the battery is low and if the connection is bad. The alarm is quite loud - it's similar to a smoke detector. We don't anticipate the monitor going off (unless it's a false read or something) since Evan grew out of bradys and never really had apnea problems. The monitor is more to tell us if Evan starts to struggle with his breathing. The monitor records and the information can be uploaded so the doctors can see if it is still necessary to use one. We're hoping Evan will be wireless in a few months. For now, it is kind of a nice safety net. While it won't "fix" Evan if an alarm goes off, at least Andrew and I can immediately assess the situation if Evan starts to struggle. Thankfully it can run on the battery for 6-10 hours. We have to test it to see how long the battery life really is. The respiratory therapist said that each machine is different. So far we just keep it plugged in the living room and unplug it if we need to wheel into the other room for a diaper change. I'm sure we'll just let it run on batteries for the few hours in the middle of the night when Andrew and I are both sleeping and Evan is in his bassinet next to me.

So we're home. WE'RE HOME!!!!

I'm thankful for a full belly again!

Momma is thankful for my turkey butt.

Daddy is thankful I'm not struggling to breathe. 

Sigh, what a great 1st thanksgiving!
I'm also thankful for everyone rooting for me!

Peace out! I'm outta here (again!!)

Twelve weeks 3 days old (+ some catch up)

Whew! Evan has had a crazy few days.

After extubating himself on Monday, Evan has been keeping the doctors and nurses on their toes.

He was pretty inconsolable Monday evening and his nurse tried all the tricks she knew to keep him happy. She tried sitting him in his boppy so he could look around but that didn't keep him happy. One of the other nurses hooked up Baby Eintein on YouTube and I guess he just watched the floating bubbles for a few hours. Guess we need to invest in Baby Einstein! :) I think he had figured out he wasn't getting fed and was starting to get ticked off about it.

Evan was started back up on feeds late Tuesday afternoon. He was started out at 15 mL (which is just a snack for him), but it seemed to keep him pretty happy. The doctors didn't want him to bottle since he was still on the high flow at this point. The high flow pushes lots of air into the stomach and bottling would have just added to the air. Well, early this morning (Wednesday), Evan had enough with the tube feedings and pulled his OG tube out. The nurse asked to bottle him since he was bottling before the procedure. Thankfully, he was allowed to bottle (and he hasn't forgotten how!) Andrew was able to give him a bottle this morning before work.

Evan also made some moves on the respiratory settings. For our entire visit last night, his cannula wouldn't stay in his nose. No matter what position I had him in, the cannula just kept falling out. Thankfully, his stats were perfect so the nurse wasn't too worried. Throughout the night she managed to take him from 2 litres on the high flow cannula to room air with no support! Our baby is an awesome baby.

Andrew warned me this morning that I wasn't going to want to leave Evan today and he was right. Evan is such a little toaster that our snuggles are hard to end. He was also kind of cranky today since his feeds are still low. He was increased by 5 mL every 3 hours though with the hope that the PICC line can come out tomorrow. We're also hoping he will be ad lib (open bar dude!) tomorrow as well.

Evan is all dressed up in his turkey outfit for tomorrow. I know I haven't posted any pictures. At first it was just hard to take them since he was unrecognizable with all the tubes and wires. Today, we just forgot to bring along the good camera. Don't worry though, we will have plenty of pictures tomorrow.

Today, we talked about Evelyn, Evan's big sister. We told him how she would have been 2 years old today. Some days it feels like she was here just yesterday, other days it feels like she was never here at all. Evan will always know his sister is looking out for him and that she holds a special place in our hearts. We'll be sure to point out her star and tell him how brave she was. Happy Birthday Evelyn Grace, you would have loved your little brother.

Twelve weeks one day old

Evan's belly was looking better this morning. His replogle tube was still set to vent for the entire day. A replogle tube is similar to a feeding tube except it removes air from the stomach. The tube can either vent (much like a feeding tube) or it can be hooked up to a suction to help remove the air. A replogle tube will only remove air from the stomach; anything in the intestine will have to come out naturally (farts!). Evan is still off feeds while his intestines are working on processing the air.

The ENT doctors wanted to give Evan one more day to heal and wanted to extubate tomorrow (Tuesday). Evan had other plans. More on that in a minute though...

Evan's morning was spent hanging out with the PICC line nurse. A PICC line is like an IV line, but it can be used for a prolonged period of time. Evan is running out of veins for IVs. He had two IVs in today - one in his hand and one in his leg. Unfortunately, Evan needs all the IV access right now as he is receiving steroids, reflux medication, two antibiotics, lipids and TPN (nutrition). The PICC line is inserted by a nurse that has had special training. From PICC Line Nursing:

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access... A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm... In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Evan had a PICC line put in when he was born. Going forward, Evan's nutrition will be hooked up to the PICC line, leaving an IV free for meds. The PICC line is put in right at his bed. They typically don't take any longer than a regular IV to put in, however Evan was determined to be a little pistol today. He received two doses of sedation before the procedure and still fought through it! Every time the nurse would put the catheter in his arm, he would somehow push it out. He was also fighting the tube and was needing constant suctioning. The nurses were a little concerned he was going to end up damaging his throat. The doctor approved of a small dose of a paralyzing medicine. The medicine is fast acting and he wouldn't be out for very long. As soon as the med hit him, he was out and the PICC line was in. The nurse said that they waited longer for x-ray to come to make sure the line was in the correct place! I was out of the room for the procedure and by the time I came back in (about 30 minutes after Evan received the paralytic), he was already awake and starting to get antsy.

Evan had to receive a blood transfusion today. As soon as the transfusion started, the IV went. The transfusion had to get moved to another spot. As his nurse was inspecting his other IV, she noticed that one was also gone. Rats - two IVs gone at the same time. I decided to leave about this time since it can take a while to find a fresh vein for an IV. I had already spent more time in the family room than I wanted.

Evan also had another eye exam this afternoon. The eye doctor was happy to report that the plus (+) disease is still gone. The ROP is still visible in both eyes, but it is not active. He didn't see any traction or pulling on the retina. Woot! He'll come back in another week to check again.

While I was preparing dinner tonight, I got a call from the hospital. I assumed they were calling to tell me about Evan's eye exam so I wasn't paying full attention. All of a sudden, the doctor said "Evan pulled his tube out". I had to have the doctor repeat himself. Apparently, Mr. Pants was tired of being intubated and he extubated himself! His nurse had just finished having the respiratory therapist inspect the tubing and tube holder to make sure everything was in place. She stepped away from his bedside and when she came back a few minutes later, he had pulled it out. He was staring at her, all nice and pink. Needless to say, he got a bit of attention as the doctors needed to check him out. So far, he is not showing any signs of stress. He was put on the NIV on relatively low settings. He's not fond of the NIV (probably because of the constant pressure), but he was slowly getting adjusted to it by the time we left for the night. It was so great to see his little face again. He's very bubbly (from the air via the vent). Evan was nice and awake and held my hand for a long time. I'm hoping we can get in a snuggle tomorrow.

It was pretty bleak the last few days. It was so hard to watch him fight the tube and struggle to cry while he was intubated. Tomorrow, the ENT doctors will officially check him out. Andrew and I are cautiously happy today as we know that there's always the possibility that Evan will need a repeat procedure to additionally fix his throat. He could end up re-intubated, but at least he had a little break for now.

Twelve weeks old

When we left the hospital on Saturday night, Evan had lost the use of his IV. His veins are pretty shot from having so many IVs and 4 or 5 nurses had spent about an hour trying to find a new vein. The doctors decided to leave the IV out for the night and just administer very small doses of morphine as needed. Evan's feeds were increased as he was no longer receiving nutrition supplement from an IV.

When we came in to the hospital in the morning, we noticed that he had a stomach vent in. Over night, they had taken an chest X-ray. While Evan's lungs still look good, his intestines were very distended. His stomach is still soft and doesn't show any signs of the distention though. They stopped feeds and put in a tube that will suction the air out. Unfortunately, any air that is in the intestines will have to work its way out via a toot. Looking at the X-ray, Mr. Pants is going to be very gassy for the next few days.

This was kind of hard to deal with since we were hoping that he would maybe be extubated today (or at the latest Monday). The new plan for extubation is Tuesday as the ENT doctors aren't hearing much of an air leak. 

Eleven weeks 5 days old

Evan is still intubated while we wait for the swelling to go down in his throat. Unlike previous intubations, he isn't completely out of it. He was awake for a good portion of the morning. You could tell he was not quite himself, but he did give me a couple of smiles.

As long as he was in the hospital, he had another echo to check on the PFO and Pulmonary Valve Stenosis. Both are about the same. The cardiologist believes Evan will grow out of both. He said it would be okay to follow up as an outpatient in 6 months. Great news! :)

Evan started eating again; starting at 18 mL. The doctor said that she doesn't want to give him sedation if he's just awake and hungry. Hopefully they'll be able to increase it a little tomorrow. Mr. Pants is used to getting as much as he wants!

Eleven weeks 4 days old

When we arrived at the hospital today, it was evident that Evan was really struggling to get a good breath. During rounds, they ended up giving him another racemic-epi. The racemic causes his heart rate to soar - it was over 200 when we first arrived. It slowly settled back down over an hour though. Since Evan was working so hard, the doctors were able to move the procedure up to 11 am (from 12:30 pm).

The operating room called us down around 12. I'm glad that they moved his procedure up since the waiting room was full and I could hear others talking about how backed up the doctors were with procedures.

The procedure took about 45 minutes during which Evan was sedated and intubated. After the procedure, we spoke with the ENT doctor and the NICU fellow. The NICU attending and fellow were present for the procedure so that everyone was on the same page. The ENT doctor said that when Evan was wheeled in to the operating room, he wasn't sure if they would be able to do anything other than look since he was working so hard to breathe. If he hadn't had this procedure today, he was definitely going to be intubated.

During the procedure, the ENT doctor was able to do two balloon dilation treatments. The balloon dilation helps open up the airway. The doctor was happy that Evan was able to tolerate the treatments, especially since he was in rough shape this morning.

The official diagnosis is that Evan has subglottic stenosis. Again, turning to the trusty internet for the definition (http://www.chop.edu/service/airway-disorders/conditions-we-treat/subglottic-stenosis.html):

Subglottic stenosis (SGS) is a narrowing of the airway below the vocal cords (subglottis) and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway. This narrowing is often caused by scarring in the larynx just below the vocal cords but may also involve the vocal cords and affect the voice as well.

It is believed that this was caused due to the intubations from the surgeries Evan had recently.

The doctor was very pleased with how Evan looked after the balloon therapy. We won't know if it was successful until Evan is extubated. He will stay intubated for a minimum of 2-3 days while the swelling goes down. When he is extubated, the ENT team will be at the bedside to supervise. The NICU doctors and ENT doctors will have to be in communication as they don't want to leave the tube in too long or too little.

So we're kind of on hold right now. Andrew and I are relieved to have a name for what Evan is dealing with. It's so hard to see him immobilized (due to the fentanyl while he's intubated) and intubated. I know it's going to help him in the long run, but it's a hard picture to digest when he was home just 5 days ago.

Eleven weeks 3 days old

To say it has been an emotional few days would be a major understatement.

Evan is all settled in the isolation room in the NICU. Thankfully, the respiratory screen and cultures were all negative for infection or illness. We knew that if he was positive for anything (RSV especially), we'd have to leave the NICU so as to not infect the other babies. Since Evan isn't sick, the mandatory gowning and masking was discontinued. The antibiotics were also discontinued since all of the tests came back negative. Yay! They'll leave the IV line in for now though. Evan is running out of veins since he's had so many IVs.

Evan's feeds were started back at 20 mL and then increased to 30 mL. For a little boy that is used to eating however much he wants, he has adapted pretty well. I was expecting him to be upset and looking for more food, but I think he's just so wiped out from trying to breathe. He's receiving his milk through his stomach (OG) tube. His fluids were discontinued as well.

An X-ray shows that Evan's airway is narrowed (or "steepled"). This could be from a number of things: croupe (or croupe like illness), RSV, prematurity or from intubation. Since we know Evan isn't sick, we can rule out the first two situations. Evan will have a bronchoscopy tomorrow so the ENT and NICU doctors can develop a course of action to treat him.

Evan and I are spending a lot of time snuggling. While he was home, he barely left our arms so now that he's back in the NICU, I think he's feeling a little bit disgruntled. The nurses helped settle Evan on me and we sat and rocked for hours today. I talked to him the whole time as he held on to my sweater. It was just heartbreaking to know that he was in such discomfort and all we could do to help was to snuggle.

Eleven weeks 1 day old

We had our first outing today; to the pediatrician. Andrew and I had noticed Evan was working a little harder to breathe. He was retracting a lot as well. Retractions are when you can see Evan's chest almost collapsing on itself as he inhales. Evan had a fantastic day on Saturday and was actually the quietest we had heard him. As we were at the doctor's, he was getting noisier and noisier. Thankfully, the pediatricians followed Evan while he was in the NICU so they're familiar with his situation. The pediatrician called the attending that had discharged Evan on Friday. They both determined that is was worth going to the ER at the children's hospital. By the time we got to the hospital, Evan was in real distress. His coloring was changing. The pediatrician had called ahead so we were rushed right into an exam room. 

There was a flurry of activity as the doctors and nurses worked to put in an IV and stabilize Evan's breathing. Since Andrew and I were involved with Evan's first stay, it wasn't as scary since I could kind of follow along with what they were doing.

Andrew and I knew there was a possibility that we would not be allowed back in the NICU since Evan was exposed to the outside. He is now considered "dirty". After some back and forth, an exception was made and Evan was allowed into the NICU. Andrew and I were (and are) so relieved. We are familiar with the NICU and more importantly, the NICU is familiar with Evan. We are back in an isolation room. Until Evan's cultures come back negative, the nurses have to gown up and wear masks when they come in his room. This protects Evan, the nurses/doctors and other babies. 

Right now Evan is back on the NIV. This provides pressure for Evan's lungs. He doesn't need any oxygen support and is at room air. Evan received several doses of racemic-epi to help with the strider. He also received two doses of the steroid dexamethazone. He's not able to eat while on this ventilator as it constantly pushes air to his belly. The doctors don't want his stomach to become distended. He is receiving electrolytes via an IV. 

Andrew and I are definitely bummed that we're back in the NICU. It just felt so wrong driving down here last night. When we got back home, the dogs were definitely confused. It was hard to sleep last night with out my Mr. Pants in his bed next to me. Hopefully Evan will be back to his smiley little self in no time.

Ten weeks 5 days old

EVAN WENT HOME!!!

So let's back it up a smidgeon.

Earlier this week on rounds, the doctors said that they thought Evan was ready for discharge. One of his primary nurses has said that they're not doing anything extra for him that we couldn't do at home. Evan was off all meds and oxygen so we were ready to bring him home. Andrew and I bustled around picking up last minute things for him; you know important things like bottles!

Evan will be bottle fed 3 times a day when he comes home so he can get extra calories. We will continue to add fortified formula to breast milk so he can get an average of 22 calories a day. I can then breast feed him whenever. He also has to have a daily vitamin that smells like a penny and looks nasty. I've been assured by the nurses that it also tastes nasty. We hide that in a little breast milk as well. So far Evan hasn't caught on to our tricks.

The day went by super fast, but also in slow motion. Evan is part of a respiratory study so he had to complete a bottle feeding and sleep while hooked up to monitors (that track his stats). We weren't able to participate in the feeding portion so we arrived to the hospital late. It felt so weird not rushing to get there for morning rounds! Evan needed to sleep for 15-30 minutes while hooked up to the monitors. Unfortunately, he selected this morning to stay wide awake. Oh well, the doctors were still working on the discharge paperwork anyway.

Andrew loaded up all of Evan's gear. It's amazing how much was still left (clothes and blankets) and what you're sent home with. We have a long list of appointments that Evan will be attending over the next few months. He is going to be one busy boy!

All morning nurses were coming in to say good bye to Evan. He's such a little flirt! He played coy though and slept through the good byes. I know Andrew and I are going to miss seeing everyone. The level of care that Evan received was amazing. We always felt included in his care. From day one the nurses encouraged us to change diapers and then gave us more "chores" as Evan got stronger. In our ten and a half weeks, we were able to hang out with some amazing people.

When it was finally time to leave, Evan was unhooked from his monitors and I started to panic a little bit. I'm not much of a monitor watcher (that's more Andrew's thing), but for some reason I got a little freaked out thinking "How are we going to be able to tell if he's breathing?!" or "What if his heart rate stops, how will we know!?" I guess we'll just have to watch him like normal parents watch their full term babies!

I am so glad Evan's two day primary nurses were there to send him off. They've been with him since the beginning so it was only fitting that they see him off in the end too. We got Evan settled in his car seat and an announcement was made that he was leaving. A flood of people came in to say good bye to Evan. To see everyone's smiling faces one last time was a little overwhelming. Evan's first round Fellow was on so we were able to see him on the way out as well. After saying good bye to everyone in his room, Evan was wheeled out. Nurses and doctors were congratulating him and clapping. He had his own parade!! It's so surreal to look back at it.

When Andrew put Evan in our car, it really hit me that we were taking Evan home. Not only were we taking him home, but we were taking him home way ahead of schedule. He's still only 36 weeks! The car ride home went pretty smoothly. Evan was a little fussy once he realized he wasn't able to wiggle like he normally can. I sat in the back and relayed his stats to Andrew.

I'm sure Andrew and I are in for a long night of worrying about Evan. He sounds so much louder now that he's out of the hospital with all the bells and whistles constantly dinging. The dogs are extremely curious. Stella is struggling with boundaries and has been put in her house several times as punishment. They're not aggressive at all, just very sniffy. It's important to show them that Evan is the boss and they need to obey us when we ask them to move.

I will continue to keep this site updated. I may not update every day. Even though we're not spending all of our time at the hospital, I think I am going to lose time because I'm snuggling Evan!

I cannot thank everyone enough for all of their love, support and prayers. We are so humbled by everyone's support. I can't wait to tell Evan his story and about all the people that loved him right from the very start. We were so fortunate to never receive a middle of the night phone call. Evan's NICU stay was definitely scary at times, but it could have been so much worse.

Evan is still going to be "in the bubble". Just the bubble of our house. It's cold and flu season so unless we're going to an appointment, we'll most likely be quarantined at our house. As much as we love everyone at the Children's Hospital, we'd like to not go back.

It's a thug life for me - bustin' a sag in my going home outfit.

Finally, then there were five.

So you're saying I live here now and I can snuggle whenever I want?!

Can't wait to check out this zoo everyone has been talking about!

Ten weeks 4 days old

Evan has been working on a big surprise all week. He can't wait to share it with everyone tomorrow!!

He received the last of his immunizations today. We were happy he didn't have any reactions to any of the shots. Sometimes the shots can cause the babies to desat or have spells.

Evan got to snuggle with his Gma for the first time today. He loved it. (I think Gma thought it was pretty great too!)

At last! Snuggling with Gma!

Ten weeks 3 days old

Evan has really turned into quite a typical term baby. He's eating every three and a half to four hours. The nurses kind of let him set the schedule based on his screeches to be fed. He got a little antsy this afternoon so his nurse (one of his primaries), gave him a little snack. He knows how to get what he wants! :)

Evan and Andrew enjoyed a nice long snuggle this evening. He wasn't too interested in eating at 9, so they snuggled while I was pumping. I came back to such a content scene. Evan was completely zonked out and Andrew looked like he wasn't too far behind.

Ten weeks 2 days old

Today was the first day I didn't have a single thing to add to Evan's NICU notebook. Our only goals right now are to grow, grow, grow. Evan is having no problem slurping down as much as he can. He continues to excel at breast feeding. He's such a little champ. He didn't desat once today while eating.

So, not much to talk about so instead here's a few pictures. :)

No pictures please, I'm hiding in my blanket fort.

Alright already! I'm awake!

Nothing beats a post milk slumber.

I love these two boys so much.