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.

Ten weeks 1 day old

Our Mr. Pants continued his cranky behavior last night. His nurse tried everything, but all he wanted was to eat (and eat and eat and eat). Around 5 am this morning, the doctors moved Evan to ad lib feedings. This means he can take as much as he wants. They'll let him sleep and when he wakes up, he feeds. At 5:30 am, he slurped down 60 mL and would have kept going but his nurse didn't want to cause him to throw up.

Evan's antibiotics were discontinued overnight as the cultures came back negative for infection. He was also given his final dose of dex (steroid) at 11 pm.

Evan took down 80 mL for me at 8:30 am. He just kept going! I had never seen him so content once he was done. I was also able to start back up with breast feeding. 

Evan had his eye check up today. The eye doctor said that he still sees the stage 3+ (plus) ROP, but it hasn't gotten worse. We have another follow up appointment next week. Evan will continue to be monitored over the next few months as his eyes continue to heal and develop.

Evan is back off all respiratory support. He wasn't on the support for his eye exam and he was a champ. The exam is very quick (about 10-15 minutes), but the doctor is looking into his dilated eyes with a bright light. The first eye exam resulted in Evan dropping his heart rate. This exam resulted in a few cries.

We were moved to a new room after the eye exam. This room seems huge compared to our first room. It's also so much louder now that we're not in an isolation room. It was a little deafening at first. Thankfully, Evan slept through the whole thing, even wheeling right through the noisy doctor's hub!

Um excuse me? Can I eat now?

Story time with Daddy.

Oh man, I had the best day ever!
They let me go to an all you can eat buffet!

Update

Evan is great! I will be back later today with updates for Saturday and Sunday.

Just wanted to pop in real quick. :)

Ten weeks old

So Mr. Pants was a busy boy, he managed to pull out his feeding tube multiple times this overnight. They finally left it out and he bottled like a champ.

Evan was at 1 litre of room air on the high flow vent. They had hoped to wean to room air with no respiratory support by the end of the day, but he was still on the cannula when we left at 11 pm. Technically, anything under 3 litres is not considered high flow.

Evan held us hostage for a while tonight. We fed him and he was still smacking his lips after gulping down the 40 mL. We offered him his paci and he was fine with it for a few minutes until he would realize he wasn't getting milk from it. Then he would start to cry. He'd suck on the paci, then cry. He just kept crying. It was obvious he was still hungry. His nurse thought that he may like a swing. We settled him in it and he calmed down for a minute until he realized he wasn't getting fed. Poor little guy, he just was not happy.

Here's the picture story of Evan's day:

How much cryin' does a guy gotta do before he's fed?!

Heh, now I'm happy. Well, for a few minutes at least.

I don't want to be naked! I want to be fed!

I also don't want a sponge bath. I like my stink.
I don't like my empty tummy. Feeeeeeeeeed me!

Oh Momma, they never feed me here!

Oh milk! I never thought I was going to eat again! Never!

Week 10 - family photo

Sorry, this isn't cutting it. Feed me again!

Nine weeks 6 days old

Evan had a bit of a rough night. Early this morning, his nurse noticed he was struggling to breathe. It appeared that the stridor was still taking a toll on Evan and he was wearing out. His air way is still swollen and sore, so it is difficult inhale and exhale.

Evan was moved back to the high flow cannula, but it wasn't providing him with enough support. He was then quickly moved to the NIV. The doctors also ordered a CBC and culture to check for infection. It will take 3 days to grow the cultures out. In the meantime, they'll start him on antibiotics. The antibiotics can always be discontinued if the cultures come back negative.

Evan also received another dose of dexamethasone and racemic epinephrine. On rounds, the doctor ordered 4 doses of dex. It's given every 12 hours. Hopefully this will help with the stridor to improve his breathing. They also ordered a chest X-ray just to see if there's anything going on.

To help keep Evan happy, he has sweeties ordered. Sweeties is just sugar water that is put on the pacifier. Babies love them. Since Evan is my son, of course he has a sweet tooth (um gum?). His nurse kept him happy every time she checked his vitals or he got a little fussy. She also started him back up on Tylenol every 4 hours.

Unfortunately, since Evan is back on the NIV, he is back to tube feedings. Thankfully they're keeping the amount at 40 mL. Full tummy = happy, sleepy Evan.

They were working on weaning Evan off of the NIV and back to the high flow all day. Hopefully he'll be back to high flow in the morning.  

Andrew and I were so very fortunate to be surrounded by friends and family today as we held an Open House for Evan. We appreciated seeing everyone. It's been hard to focus on relationships outside of Evan, so it was great to reconnect. We're looking forward to showing Evan off in real time!! Thank you to everyone that came to our house. Your love and support has been amazing these last two and a half months.

Yay, snuggle.

Oh, hi, do you have a Sweeties for me?

Nine weeks 5 days

Oh it feels so good to be back on track. Evan was so cranky this morning. He was very gassy while he was trying to nurse at his 11:30 am feed. Every time he would toot, he'd cry, then he'd cry because his throat hurt. He was so worked up he couldn't even concentrate on eating. He finally ate and fell into a milk coma. We had lots of great snuggles today. It will be so awesome to have him here at home. The wooden rocking chairs just aren't conducive to good snuggles.

Evan was taken off the nasal cannula today. He was holding his own during his feeds which was awesome. It did seem like he was trying a little too hard as we were leaving. I wouldn't be too surprised if he was back on the cannula in the morning. It's also deceiving since it sounds like he's having an asthma attack, but he's not.

Not much in the way of pictures since his room is kept dark due to his eyes. I know the picture is fuzzy, but he's just too darn handsome not to share!

Oh I'm fabulous!

Happy Weekend!

Nine weeks 4 days

Wee! Evan's tracheal stridor is clearing up. When I came in this morning, Evan was still not sounding very clear but was much better than last night. He was a little cranky. Andrew waited for me to get to the hospital to leave. Every time he tried to leave, Evan's binky would fall out and he'd get upset. Andrew needed me to hold Evan's binky to keep him happy. It's so strange to hear Evan cry. His voice is still extremely hoarse which makes it even sadder to hear. He's usually such a happy baby.

We had our first snuggle since Monday afternoon today. He settled right in and was content. His feeds are increasing by 4 mL every 3 hours until he's back to his full feeds to 37 mL. As soon as he's at full feeds, his head IV can come out and hopefully the OG tube can as well.

The doctors also ordered for Evan to receive another dose of dexamethasone. Around 2 pm, Evan was moved to wall oxygen at 2 litres. He completely skipped over the high flow cannula! (He's a rockstar obviously.) By the time we got to the hospital, Evan was at 1 litre.

Evan was very cranky when we first got to the hospital this evening. He was just in the process of getting his vitals taken. He received the last of his eye drops which he took okay. He also had to have his pulmicort. Evan was not a trooper with the mask today. He fought and cried the entire time. Since his voice is still raspy it was extra pathetic. Once his pulmicort was done, we were able to pick him up to bottle. Woo! I didn't even have to convince him to take the bottle. He opened up and latched right on. He kept one eye on the bottle the whole time and sucked it down in about 10 minutes. Poor little man, he was probably waiting for me to take it away before he was full. After he slammed his bottle, we had a nice snuggle. He sucked on his paci and fell asleep. I tried taking his paci out of his mouth after he fell asleep but each time he would wake up and aggressively jam it back in his mouth. Little man knows what he wants.

Evan was also back in his big boy bed. It is so nice to see him back to where he was (minus the fact that he's on oxygen right now). Hopefully, he'll be strong enough to come off the oxygen in the next few days. I know he can do it.

My bink. If you take it away, I will cry and cry and cry.

Don't stop 'til I instruct you. Just keep it coming.

I've got my eye on you, just keep that milk flowing.

I added pictures to: Nine weeks 1 day old and Nine weeks 3 days old too! 

Nine weeks 3 days

It's been a rough few days. Since Evan is in this room, I think my emotions have finally caught up to me. It's also so hard to see Evan intubated when he just came off all respiratory support. 

Evan's eyes were less puffy and he was awake while we were with him today. (We spent about 12 hours at the hospital). It was so great to see his face again. The day before, they had a cloth over his eyes to protect them. The doctors are still dilating his eyes as part of the recovery process so the room remains dark unless the nurse is checking vitals.

Evan was finally extubated around 12:30 pm. He was extubated to the high flow cannula. Andrew noticed that while Evan's stats were perfect, he was very wheezy and couldn't get a good breath. After listening to his lungs, his nurse realized he needed some medication to help open the air ways. They gave him a dose of racemic epinephrine. His nurse also gave him some good chest PT (it looks like a rubber hammer head that is pounded on the chest). Through all this, Evan was very upset and trying to cry. Since he was intubated, his throat was raw and inflamed so he was very hoarse. The doctors said that he had tracheal stridor. This was most likely caused by the back to back intubations. They also gave him a dose of dexamethasone (steroid) to help with the inflammation in his trachea. It was also decided that while Evan was getting good breaths in, he wasn't pushing the air out. He was moved to the NIV ventilator. This ventilator delivers pressure to the lungs, but through the nose. This is the ventilator that makes him sound like a whale surfacing. Just as he was finally settling down, the eye doctor showed up to check on the surgery. Thankfully, Evan did great for the check up. While it's too early to see if the surgery worked, the doctor was very pleased with how his eyes looked. Evan has a repeat exam on Monday to further check on the progress.

Evan was finally started back on feeds. He was started at half feeds of 17 mL. 

Since we're in this isolation room, it really highlights how lonely it is as a NICU parent. For some reason, it really hit me this week. I think Andrew and I are really looking forward to bringing Evan home. I know that we will still have challenges, but we're just ready to have our little boy home with us. After such an amazing Monday with Evan on no respiratory support, the last few days have felt like such a gigantic step backwards. At rounds on Sunday, the doctor (not Evan's current doctor, but one that was covering for the weekend) said that we could get the ball rolling for discharge. Even though I wasn't getting my hopes up, it was still hard to then see Evan two days later intubated, silent and not moving.

Now that Evan is extubated, I feel like we're back on track. I know he still needs to come off the NIV and work back up to full feeds, but at least he's not intubated. I know I'll feel better once we're snuggling again too.

Snuggling with my friends after an exhausting extubation.

Nine weeks 2 days

Evan remains intubated.

No changes.

Nine weeks 1 day old

Sorry for the lack of post yesterday. We had a long afternoon/evening. 

Yesterday morning was great. Evan nursed for two feelings and sufficiently stuffed himself both times. He is such a good eater. :)

I knew he was scheduled for an eye exam but left before the doctor came in. Just as I got home, the hospital number flashed on my phone. The eye doctor had examed Evan and the ROP had progressed and he needed immediate eye surgery. Thankfully we are only about a half hour from the hospital. I got back to Evan and held him while we waited for an isolation room to open up. Unfortunately the isolation rooms are part of the same room Evelyn was in for her three days. It's tough being in this room again even under different circumstances. 

The eye surgery took about four hours. The doctor is very meticulous. Evan was sedated and paralyzed again. He's also back on the conventional ventilator. It's kind of heartbreaking to see Evan immobilized and incubated again especially since he was just back to himself after the hernia surgery. He's not eating now and will have to start back on 5 mL of milk when he is extubated. Hopefully they'll be able to increase his food quickly again like they did after he was extubated from the hernia surgery. 

I'll add pictures tonight once I'm back home. I'm updating from the iPad and don't have pictures on it. Evan was super cute yesterday. 

Ah! Look how stinkin' cute I am without my tubes blocking my face!!

Feed me now! *bangs hangs on blanket*

Ahhhh milk coma.

Nine weeks old

Evan was still a little cold today. He was wearing his fleece footy pjs while wrapped in a fleece blanket with another fleece blanket on top of him. His nurse was trying really hard to make sure he stayed warm so he didn't have to go back in a warmer bed. She had pulled the blanket up and around his head to keep Evan warm. Unfortunately, the arm IV didn't last so a new IV was put in Evan's head. Thankfully, this only lasted until about noon when it was taken out after Evan was back to full feeds.

Evan is back on his full feeds and he's bottling or breast feeding all feeds!! They never ordered his NG tube put back in after his surgery so he's been bottling ever since. Evan does a great job of staying awake while he eats. Sometimes he gets a little too excited about drinking from the tap that he forgets to breathe. We can see his little face start to lighten up and I know it's time to pry him off the tap. He usually keeps smacking his lips while taking deep breaths. He was very obvious in his gaze today. What age do I have the "it's not polite to stare at women's milkers" discussion?

Andrew finished Evan's nook. The tree and animals are complete. He also finished the ceiling with glow in the dark constellations. I know Evan is going to love picking out the different constellations and making new ones up. Andrew was also able to add Evelyn's star to the ceiling as well. Evan's room is coming together. It's almost ready for Evan to move in... well, once he's 40 and I move him out of our room that is. :)

So um, when can I go to the tap again?

Oye, I gotta stop before I get this full!
When will I learn!?

Thank goodness my binky is here to prop my arm up.

Eight weeks 6 days old

Evan continues to heal after hernia surgery. The doctors are increasing his feeds every 2 feeds. They don't want to increase too quickly as a full belly can put stress on the lungs and on his surgical site.

Evan was moved back into his big boy crib when we came in this morning. He was piled under a bunch of blankets since the room was a little chilly (and he was temping cold). He was able to keep his temperature up through the day though.

The IV in Evan's head didn't last (it was from Wednesday anyway) so a new one was put in his hand. Instead of crying or wiggling, Evan calmly sucked on his binky while they tried several spots for the new IV. He is one awesome little boy.

Not much to report so here's a slew of pictures!

Those guys are totally watching me sleep, aren't they?

Why yes, my name IS Mr. Pants!

Mmm, Evan burrito.

Yum, yum, yum. Milk in my tum.