Six weeks old

Evan hit 32 weeks today. Some of the nurses haven't seen him in a while and remarked how big he's gotten. He has gotten so big - he's weighing in around 3 pounds 5 ounces. The doctors upped his feeds to 27 mL - he almost needs to graduate to the next size syringe!

Evan enjoyed his first story time today. We read "I Am Invited To A Party". I think Evan really enjoyed the book. I can't wait until he's older and can "read" along too.

Go Bills!

Telling secrets to Daddy
(and apparently Momma needs to learn how to use the camera).

And I hafta be a Buffalo Bills fan?

Professor Evan still getting used to clothes.

Five weeks 6 days old

Not much to report on. Evan's respiratory screen came back negative for a virus. He had a pretty low key day today. We had a good afternoon snuggle. Evan was snuggled right down in my shirt like a good little kangaroo. 

Morning Friends and Family!

Heehee, I'm tucked in Momma's shirt and wearing it as a hat.

Family picture.

Evan smiles, Momma smiles.

Evan is falling more and more in love with his paci.
(Pay no attention to the milk line that's curled above his head.)

Five weeks 5 days old

Evan had another eventful day today. He was moved to the high flow cannula this morning. This type of ventilation is still through the nose, but just offers less support. Evan has to do more of the breathing on his own. The cannula is a little more flexible as well. The other cannula that he was using is very heavy. The nurse explained that it can sometimes lead to breaking down the nose. I didn't ask for a further explanation, but it doesn't sound pleasant. This new cannula pops out of Evan's nose quite easily (with and without the help of his hands). When we left, Evan was being very busy with his hands, so the nurse had to "sandbag" him (place a weighted beanbag on his arms). What a little stinker!

Evan's feeds were increased to 26 mL. I can't believe he's almost to a full ounce!! He needs to keep his strength up especially now that he's more responsible for his breathing. He did have a few bradys today, but the nurses think it happens when he's working on making a poopy diaper.

I dressed Evan again today before snuggle time. I found some smaller shirts that snap up the side so he's not totally swimming in his clothes. The preemie size is still just a touch too big on him.

Still a little big on me.

This evening's snuggle was cut short due to a few brady incidents. Evan looked fine, but I think his food went down to quickly so he may have been suffering from a little reflux. After he went back to his house, we gave him his paci. He sucked on that for about 20 minutes! Here's a fun video: http://vimeo.com/76743121 (the squeaking sound is him!!) I am so hopeful that he will be able to bottle in a few weeks.

During our evening snuggle, Evan was fully awake. I think he likes looking out. (The eye exam shows he doesn't have ROP - just underdeveloped eyes. One more milestone that Evan has passed with flying colors.)

Oh man there's a lot going on out here!

I better hold onto Momma's shirt; just incase.

Five weeks 4 days old

Whoops - forgot to hit post last night! Happy Friday!

Evan had an exciting day today.

Look how I'm growing!
(Blurred to preserve a liiiiittle bit of modesty.)

He was moved from the giraffe incubator ($50,000 bed) to a regular incubator. The new incubator doesn't allow for the top to come up. The doctors don't feel he needs immediate access anymore. His new bed looks like a greenhouse. He also looks much bigger since his apartment is smaller. His new incubator doesn't have a scale in it so he'll have to get weighed on the scale like a big boy. He tipped the scales at 1445 grams today (a little over 3 pounds).


Evan and I had two great snuggle fests today. The first one was interrupted as I had to go go a doctor's appointment. The second one was tonight and his Gma was able to see him out and about.

Holding Gma's hand.

Oh! And! Evan wore clothes today!! Well, a shirt and no pants (pants are overrated anyway). I got him all dressed up and then the nurse and I remembered we were going to have a kangaroo snuggle. I just unbuttoned his shirt and he hung out half dressed. He looked like such a big boy!

Evan also had his first eye exam. I guess he did not like it at all. Thankfully we missed the exam because he held his breath and dropped his heart rate in protest. We'll find out the official results tomorrow, but unoffically Evan's eyes are underdeveloped. (No kidding.) He'll have a repeat exam in 2 weeks to check progress.

Evan also "worked" with the physical therapist today. She showed me how to make sure his feet are pointed in when he's on his stomach. Preemies like to point their feet out so they can push against the rim of the snuggly. This isn't good for bone development. She also started Evan on massage. She'll work with him a few times a week until he goes to the zoo.

Loooooove you Momma.

Five weeks 3 days old

Evan had a big day today! He came out to play twice!!!

Evan and I had a nice long snuggle this morning. It was only interrupted because I had to leave to go to an appointment. He did desat a little but the nurses think he may have reflux. (Desat means his oxygenation levels drop. This is usually how Evan shows that he's uncomfortable or angry. Evan tends to desat a lot when he's on his back. It's his way of making sure he gets put back on his tummy.) Reflux is not a huge problem for preemies as it is quite common - in fact, full term babies are susceptible to reflux as well.

Busted for pulling my tube out. Rats.

Evan did misbehave a little this morning. While on his tummy, he kept messing with the tube in his nose. Every so often he'd pull it out. If I didn't catch him in the act, he would desat (because he didn't have the O2 support). The nurse ended up putting him in time out on his back. He was not a happy camper. Once he realized his shenanigans of desating to get flipped back on his tummy weren't going to work, he settled in and was okay.

This evening, Evan had his first snuggle with his Daddy. My heart melted to see them together. Evan looks so much littler in his dad's arms. I love snuggling Evan, but it was nice to see him in the act. He did such a great job. The two boys hung out for a while.

He's out!

Not much is planned for Evan day-to-day anymore. During rounds today Andrew said the doctor was making long term goals for Evan. It's great he's doing so well right now. My daily notes are confined to one page. Evan's feeds were increased to 23 mL during the day and then bumped to 24 mL this evening. They also weaned the ventilator throughout the day. A tentative goal would be to move him back to the high flow cannula by this weekend. I'm just happy he's not on the oscillator or jet anymore. When we arrived at the hospital tonight, he was going to town on his pacifier. He was really sucking away and holding on. He is a genius. :) (For some reason it appears only I can see the video, so here's a link just in case: http://vimeo.com/76577087).

It was a great day for the Burke family. I'm so proud of Evan for his strength. He's such a little fighter.

Proud Daddy snuggling with his son.

Five weeks 2 days old

Well, I'm glad I didn't rush to make rounds today - they were short and sweet. Evan's only goal is to bulk up. His feeds were increased to 22 mL and the calories were increased to 24. (Remember, breast milk only has 20 calories/30 mL so they add 4 calories via fortifier.)

We're cuddlin'!

The day nurse offered to let me kangaroo Evan today but I had forgotten my button down at home. I was really upset with myself. (You can believe I now have a 'roo shirt in the car and in my hospital bag o' tricks.) She mentioned that she was going to ask the doctor to write an order so kangaroo time shows up in Evan's chart. Ordered snuggling. I like it. :) When we arrived this evening, one of Evan's primary nurses was on. She offered to have Evan come out to play. I was so happy I was prepared. I didn't know if kangaroo time was just for the day shift. Glad to know we can snuggle at night (in case I miss out on a day snuggle again).

The doctors had just decreased the pressure on Evan's vent. They're slowly weaning him. Unfortunately, I think this helped contribute to the desaturating that he experienced while we were cuddling. Thankfully Evan's heart rate never dipped, but his O2 sensor showed he was a little uncomfortable. After 10 minutes of snuggling, we put him back in his apartment on his tummy. After that, Evan was a happy camper. Even though it was just for a few minutes, it was still better than no minutes. Maybe tomorrow we can snuggle a bit longer.

I told you, I hate being on my back!

Oh, I guess it's not so bad. Look! I have a hand!!

Four weeks 3 days old

Written October 3, 2013 at 7:53 am

Sorry for the lack of update last night... after milking I zonked right out!

I rushed to the hospital to beat the doctor to rounds and I made it! Evan's new doctor rounds early and fast.

The head ultrasound from the day before continues to look normal. They'll check again in another month.

Evan will start receiving eye exams next week. Preemies have routine eye exams as their eyes (along with everything else) are underdeveloped.

The hydrocortisone steroid ends on Thursday. Once the steroid is fully out of his body, we may see him take a step back.

I believe I had mentioned yesterday about acidosis. I think I had referred to acidosis as essentially heartburn - I was incorrect. Acidosis relates to the kidneys. As Evan's kidneys are still developing, they don't work fast enough to get rid of some of the toxins in his body. This can lead to an imbalance in the acids and bases in the body. The doctors monitor acidosis through blood draws (part of the twice daily blood gas draw). Medications are mixed with various ingredients. It is believed that the first antibiotic Evan was on (to treat the infection in his trach) may have been mixed with something too acidic. Since switching to a different antibiotic, the acidic levels seem to be leveling out.

Feeds are increasing to 21 mL. Evan will also start receiving an extra bump of vitamin D in his milk. He would normally receive this in the third trimester.

We had a nice snuggle, but it was cut short after he had a brady episode. Evan hasn't been prone to them too much since coming off the invasive respiratory vents (jet and oscillator). I felt really bad but the nurse said that he probably would have had one anyway. He looked completely fine and recovered fully on his own.

We just need to concentrate on fattening up Evan so he can get stronger. I am going to do my part and make sure I'm eating lots of ham and bacon. :)

One Month Old!

Written October 1, 2013 9:18pm

Happy One Month Birthday to our sweet little boy!! :)

Evan had an adventurous day today. When Andrew went to say good morning, there was a small clog in the OG (stomach) tube. Evan ended up getting a milk shower as the nurse tried to get the rest of his breakfast down the tube. Whoops.

After I got to the hospital, I was able to sponge Evan off. He seemed to do pretty well with the "bath". Then, instead of putting him back in to settle, he was wrapped up and given to me to hold. We snuggled for about TWO HOURS today!! I was in heaven. Evan was such a good little cuddle bug too. (Side note: Evan's hat looks gigantic, but it really isn't. I think it was the angle of the iPhone picture. He does have quite the hat collection started!)

The doctors think that the antibiotic that he was on to treat the trach bacteria may have messed with the electrolytes. As his kidneys are still developing, they don't process as well as they should. They switched his antibiotic yesterday and the electrolytes seem to be evening out already.

In other fantastic news - Evan's brain scan is still clear. Woot!

When we got to the hospital tonight he was almost sideways in his bed. Apparently he had wiggled himself into position. I think he was trying to escape to come home.

The day nurse made Evan a sign (see the photo section) to celebrate his birthday. I can't stop laughing at his little grin. It looks like he should have one of his dad's homemade beers in his hand. I don't like the look of the animals - they look like they were helping Evan have a little too much fun for his birthday. haha

Thank you for all of your support and well wishes the last month (plus). They're all working and Evan is thriving off of them! Keep the positivity coming!

Four weeks 1 day old

Written September 30, 2013 9:39pm

Evan and I got some quality snuggling time in today. We snuggled for a whole hour. It seemed like it was over way too fast though. Evan is still hooked up to his monitors while we cuddle. The nurse keeps an eye on his stats just to make sure he's doing okay. Kangarooing is great to help preemies learn to regulate their own temperature. With our previous snuggles, the temperature monitor has been silent (except for Sunday when it was unplugged so it alarmed every. minute. No lie.). After about 45 minutes, the monitor all of a sudden started going off. I could tell that Evan and I were still nice and cozy so I couldn't figure out what the problem was until the nurse said, "Yeah, the monitor is saying "hot baby"". Whoops - guess Evan and I were a little too snuggly! I pulled the blanket off the top of his head to let a little heat escape.

Andrew and I learned tonight that today's echo of his heart showed that the PDA had closed up on it's own!! What a huge sigh of relief. If the hole hadn't closed, it would have meant surgery. We're both so happy we won't have to go down that path. The resident did say that Evan still has a small PFO. Apparently he's had this along with the PDA but we were never told. The doctors were more concerned with the PDA. Again, let me turn to my trusty medical book of Google to define a PFO (from http://www.nlm.nih.gov/medlineplus/ency/article/001113.htm):

"Patent foramen ovale (PFO) is a hole between the left and right atria (upper chambers) of the heart that fails to close naturally soon after a baby is born.

A foramen ovale allows blood to go around the lungs. A baby's lungs are not used when it grows in the womb, so the hole does not cause problems in an unborn infant.

The opening is supposed to close soon after birth, but sometimes it does not."

Thankfully this does not sound like a big deal. Hopefully I'll be able to learn a little more about it tomorrow during rounds.

Evan was very, very wiggly tonight. We measured his head (about 26 cm circumference) and changed his diaper. He was very handsy and kept pulling out the prongs in his nose. Every time he would get one out, he'd smile and kick his legs. Little man definitely thought he was playing a game.

Andrew was able to change a diaper before work this morning. He also held Evan up while his bed was changed. I'm glad to know the nurses put him to work!

Tomorrow is Evan's one month birthday. It's hard to believe he's a month old already!!

Four weeks old!

Written September 29, 2013 5:56pm

Evan hit the 4 week mark today! To celebrate the milestone, the PICC line was taken out of his arm. I take this as a great sign he won't need instant access for any continuous meds anymore.

After Evan's busy night last night, I kind of assumed we'd just observe him today. I was super excited to learn that I'd be able to hold him again today. We snuggled for about 45 minutes. He was all bundled up like a little taco and just slept on me. He has to get a little bigger so I can look at him easier. Right now I'm stuck trying to sneak glances at an awkward angle!

Evan's respiratory situation seems to be settled. He is on a CPAP (continuous positive airway pressure) now. This provides pressure to his lungs (to continue to help with the weakened lungs) but he does all of the breathing. He didn't try to pull the nasal prongs out of his nose today, but he did try wiggling out of them.

Evan did successfully pull out his OG (feeding) tube - again. He pulled it out last night too. Andrew and I both thought it was a process to put it back down his throat, but it isn't. It takes the nurse about 15 seconds to put it back in place. Since Evan is so drooly, the saliva helps loosen the tape holding the tube in place and then he just slowly sneezes/coughs/pushes/pulls it out. I'm not quite sure what his thinking is since he likes to eat! He certainly isn't ready for a bottle yet. (They can start bottling as early as 33 weeks.)

Speaking of eating, Evan is receiving all his nutrition from breast milk now! He no longer receives supplemental nutrition via an IV. The doctors have pumped up the calories in the breast milk so he can continue to bulk up. There are 20 calories per 1 ounce of breast milk. There are 30 mL in 1 ounce. Evan will be at 20 mL of breast milk this evening. They are holding back a little bit since he does have the PDA. They don't want to over work him until they know how the PDA looks. He has an echo scheduled tomorrow to check on the PDA. I am really hoping it closed on its own so he can start really packing on the pounds. (His cheeks are pudgy, but they could stand to be pudgier.)

It's so hard to believe everything that has happened the last few days. When I was holding him today I had the overwhelming urge to just bolt out the door with him. Yes, he's little, but he looks and acts just like a full term baby! Andrew and I have to store up all the happiness that we're feeling. Evan is only about 75% "cooked" (as Andrew so eloquently put it today) so he still has plenty of milestones that he'll need to hit. Every week may not be as amazing as this one.

We'll keep wishing and praying for Evan to continue to amaze us. Nurses and doctors stop us in the hallway to tell us what a great job he's doing. He is so strong. I keep telling him to slow down, that he can just take it easy.