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!