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.

Three weeks 6 days old

Written September 28, 2013 11:48pm

I'll update more tomorrow. Just wanted to post a quick update.

Andrew and I are just leaving the hospital. Evan had a very active evening in a good way. He's amazing. He's progressing a little too fast because he's not giving Andrew an I any time to process what's going on.

Evan was moved from the NIV to a high flow cannula. He was on that for only an hour or so before he showed he was ready for no respiratory support. The respiratory team took him off all support so he was breathing 100% on his own and the same air as us. He only stayed like this for a few minutes before the doctor decided Evan was working too hard. They put him back on high flow and will probably leave him.

More tomorrow. Our little munchkin is so awesome. He's already figured out how to get his way with Andrew and I.

Three weeks 5 days old - Kangaroo Evan!

Written September 27, 2013 6:22pm

Today. was. amazing. After 26 days, Evan was out of his bubble and got to snuggle!!

Let's back up. :)

Andrew and I were pretty excited about Evan's progress after we left last night. The doctors were talking about possibly extubating and going to the NIV. I called this morning (I was too anxious to wait for Andrew's drive-to-work update) and they did not extubate last night but they did get Evan prepped to do so today. They gave Evan another dosage of steroids and started him on caffeine. (The caffeine helps stimulate breathing - important as the NIV requires Evan to actually participate in breathing.) He didn't have a single brady the entire night and his CO2 levels were low.

Yesterday, Evan's nurse told me that depending on Evan, I would be able to hold him today (Friday). I tried not to get too out of control excited since anything can happen in the NICU. Before I left for the afternoon yesterday, I overheard the charge nurse telling Evan's nurse that she would be not at bedside, instead she would be inserting PICC lines. When this assignment happens, it means she doesn't get to be his nurse. I was pretty bummed since I knew it meant I probably wouldn't be able to kangaroo with Evan. Thankfully, Evan's nurse begged off PICC line duty so she could be with him!!

Around 12:30 today, Evan was extubated to the NIV. At first he wasn't so sure he liked it. With this style of ventilation, it pushes a lot of air out his mouth so he sounds like a little whale making blow off noises. It's awfully cute. He's also very bubbly so they're constantly wiping his mouth out.

After Evan rested for a little bit from the big switch, the nurse took a gas to check his CO2 levels. The wait to see the CO2 level was insanely long. This test would determine if Evan could come out to snuggle. The gas check is a good indicator of how well Evan was adjusting to the new vent. Thankfully it came back low enough that we were able to go ahead with kangarooing.

I wore one of Andrew's button down shirts today. Kangaroo care is all about skin to skin touch. Evan was placed on my bare chest wearing his diaper, hat and all his monitor lines. A few receiving blankets were piled on top and we just sat and snuggled for about a half hour or so. Evan seemed to like his first big adventure. His stats stayed stable and he didn't require any extra oxygen. His body temperature also remained stable! Evan did try to cry a few times, but due to having a ventilation tube for the past 3+ weeks, his vocal cords are pretty hoarse. The nurse said that he'll get louder as they heal.

After Evan was done snuggling, Andrew got to change his diaper. Evan is already proving himself to be a good listener. I told him to make a big messy diaper for his dad's first change as payback for the ones that he kept begging off - Evan did not disappoint. Andrew was a champ and not only did he put the diaper on correctly (something I continuously struggle with for some reason) but he also got him all cleaned up too.

A few other highlights from today:
- During his renal ultrasound (a routine ultrasound to check his kidneys that came back fine) he got really mad at the technician. In retaliation, he tried peeing on her. When the nurse caught his pee (caught as in she put her hand over the stream!), he got even more frustrated and ended up pooping all over the monitor leads that are attached to him. I held him over his bed as he got a mid-morning bed change thanks to his antics.

- He took to a pacifier like a pro!!

- Somehow Evan managed to pull the NIV out of his nose within the first few hours of having it. They taped it to the side of his face and he still managed to pull it out and put it in his mouth. He'll keep the nurse on her toes that's for sure!

- Evan started sucking on some of his fingers.

- Um... I held him!! I held my baby boy 26 days after he was born. All the days and nights of watching him through the bubble have been completely worth it for today.

I am so thankful Andrew was able to be present for Evan's big day. He gives Evan and I the strength that we need each day. I know that Evan could just feel the love radiating from Andrew and I today. I have never felt more in love with Andrew than today, watching him watch his son get cuddled by his momma.

Three weeks 4 days old

Written September 26, 2013 9:07pm

Evan had a fantastic day! :)

He did end up having a small infection in throat. They started him on an antibiotic last night. This antibiotic should not have an effect on his kidneys (unlike the last one which combined with the Indocin knocked his kidneys for a loop). The mucus goobers are still present in the lung and the lung is still showing a slight collapse. The doctors did say the x-rays were looking better though.

I was present for rounds this morning. Again, the focus was mainly on his collapsed lung. The ENT (Ear Nose Throat) doctor was out today so they did not end up scoping and suctioning (bronchoscopy). It was decided that Evan would get moved back to the conventional ventilator and they would continue to suction him as needed throughout the day. Evan took to the conventional vent like a champ. I'm sure he's happy to not be a little jello jiggler anymore. This evening, Evan's blood gases were very good (blood gases measure CO2 in the blood stream among other things). Good gases allow his settings to be lowered on the ventilator. He was on room air (21%) almost all day. They are continuing to lower the ventilator settings. Maybe he can switch to a NIV (non-invasive ventilator) sometime in the near future! The doctor tonight said that Evan was behaving as if the right lung wasn't collapsed. Hopefully the combination of antibiotic treating the lung goober, suctioning by the nurses and the new vent will help clear out the goober and ENT won't been needed.

Evan's feeds were also increased today. Tomorrow they hope to increase his calories from 22 to 24. A strong little boy will grow strong lungs!

In the interest of keeping it real - the doctor did say that while Evan is still on the steroids (tomorrow 3 pm is his last dosage), there is a chance that he'll have a little setback. This is to be expected as he may be riding a steroid high. The doctor was very pleased with the progress that Evan made with responding well to the conventional vent though.

I am getting better at my diaper changes. My morning diaper went on without a hitch the first time! I still have yet to change a messy diaper though. I'm hoping Evan goes easy on me for that one... Evan was also considerably less grumpy with me today so that's a plus too!

Three weeks 3 days old

Written September 25, 2013 8:54pm

Evan let Stella have all the drama today. :) (She's fine, just didn't want to take her foul tasting medicine last night so she had to go back to the vet to figure out a different way to administer it.)

Evan was moved a lot today as the nurses were working on breaking up the mucus in his lungs. We heard conflicting reports about the ENT doctor coming tomorrow to suction out the mucus via a scope down Evan's throat. This morning I heard the ENT doctor would do it in the morning, but then this evening the nurse told us they were hoping that lots of moving would dislodge it. The nurses would rather they get it out instead of the ENT doctor. If the ENT doctor has to do it, they'll extubate Evan again. Again, not a big deal since Evan has been extubated and intubated several times without incident. Obviously if they don't have to do that - it would be awesome. Evan has an x-ray scheduled for this evening to see if the extra moving helped break up the mucus.

Evan's feeds were increased to 15 mL today! The doctors want him to keep growing so he has the strength to grow healthy lungs. I'm so thankful that he's tolerated the feeds so well so far. There are some babies that don't. At least I know I'm mothering him in some way!

Three weeks 2 days old

Written September 24, 2013 9:10pm

Not too much change since yesterday's report. Evan's lungs still need time to develop. The doctors put in a larger vent tube today. While he was extubated, they also suctioned his lungs out really good. They're hopeful that they were able to pick up the mucus that had backed up in the lungs. This mucus build up may have led to the lungs not developing further. When we came back for the evening visit, the nurse said that the X-Ray looked greatly improved. I'm looking forward to hearing more at rounds tomorrow.

Feeds continue to stay at 14 mL while they work on building up Evan's lungs. He's a good eater though and always digests his food by the time he's ready for the next meal.

Evan has moved into a new stage - he's experienced some bradycardias or bradys. Bradys are another "preemie thing" that are not a big deal to the nurses, but certainly alarm the parents. Bradycardia means the baby's heart rate dips very low and is slow. Right now, the nurse said that they will record any brady which causes the heart rate to go below 80. Evan's heart rate is anywhere from the high 120s to 200 (when he's suuuuuuper ticked off). Usually, the heart rate only stays down for a few seconds and Evan will pull it back up on his own. If his heart rate stays low, the monitors grow increasingly noisy and the nurse will come over and pat his back or hold him tight. This helps the heart rate pick back up. The few bradys that Evan has experienced seem to be related to the position of the tube in his throat. A few of the brady spells were resolved after the nurse put a little tension on the tube vent. As Evan is a VERY wiggly little boy, it's difficult to try to keep tension on the tube all the time.

Speaking of being wiggly - Evan received an extra dose of sedation while we were visiting with him. They were trying to keep him nice and relaxed after his busy day of getting a new vent tube and suctioned. He was refusing to give in to the sedation. He was wiggling all over the place, squnching up his face in frustration and trying to get his hand on the vent tube. (I'm sure it didn't help that I put his diaper on backwards - again!) As we were leaving, he did settle down on his back. The nurse put a weight on his chest to kind of try to block his hands from going to the tube. It seemed to calm him down.

Just a quick side note about one of our fur children - Stella the papillion. This morning, I was reorganizing my hospital bag and a pill bottle fell on the ground and spilled pills all over the floor. Some of the pills were the narcotics that were prescribed for pain when I was released. I never took the pills but always had them with me "just in case". I thought I cleaned up all the pills. Welllllll, when I got home this afternoon, Stella found a pill and ate it. The whole thing. Thankfully, we live 3 minutes from the vet so they were able to save her. She's home now and completely fine. What a little stinker. Layla (our chihuahua) was very happy to see her sister.

Needless to say, I'm a bit tired from today's roller coaster of emotions.

Three weeks 1 day old

Written September 23, 2013 8:57pm

Evening!

I think I will probably move to posting once a day in the evening. Since Evan has been so stable, there hasn't been a huge need to have two posts every day.

Andrew calls me whenever he leaves the hospital every morning (he visits with Evan before work.) Today, Andrew called to tell me how productive Evan was this morning. The morning nurse was pleased to share that Evan had somehow managed to projectile poop all over her arm. He was pretty pleased with himself too. If there is anything positive about Evan being in the NICU, I guess it's that I'm not experiencing projectile arm poop (yet).

The collapsed lung hasn't gotten any better - but it's not really any worse either. Instead of weaning today, the doctors wanted to see how the collapse looked after some time spent propped. They also spent a lot of time suctioning down his vent tube today.

Evan's feed was increased from 12 mL to 14 mL today. The milk still has the steroid mixed in with it. Evan's glucose levels are checked before each feed and have all been great.

Andrew and I were determined to make it to Evan before 8 pm. The 8 pm rotation is when Evan gets a fresh diaper, is weighed and fed. I figured if we were there we'd be able to help out. When we arrived, the respiratory therapist was checking the jet vent and assisting with suctioning the tube. This kinda ticked Evan off. Once they were done suctioning, I changed his diaper - twice. Yep, good ol' mom put the first diaper on backwards. As I was taking it off, he was mid pee in the new diaper. So I had to start over and put a second diaper on him. As soon as I got him all snuggled in the second diaper, we remembered we needed to weigh him - naked. So I had to take the diaper back off and lift him up naked to weigh him. I was so glad he had already peed otherwise I'm sure he would have loved the opportunity to show his displeasure. It took a bit of jostling to get him settled back in. Unfortunately, this left him really ticked for the rest of the visit. While his stats were all good, his face was really red and squnched up like he was trying to yell at me. We felt bad, but it was a little comical.

If Evan wasn't upset already, we also tried lotioning him. His skin has been so dry from the bili lights. It's bothered me and it just looks like he's been wandering the desert. We weren't able to put lotion on him before as it would have fried his skin under the lights. Since Evan has most likely outgrown the bili lights, it's safe to lotion him up. Except that he hates it. Hates lotion. Again, I tried not to laugh as he waved his arms and legs at me while his face was turning red from anger. I managed to smear a little dab on his arms and legs. I didn't dare do anymore incase he decided to desat to get his point across. Maybe he's just a typical guy and doesn't like using lotion. Maybe he didn't like the lavender scent. Or maybe, he just felt like being feisty!

The night nurse asked the doctors if Evan's glucose needed to continue to be checked before every feed. As the levels have been constant and stable, she wanted to make sure it was necessary to poke his heel for blood every 3 hours. Thankfully, the doctors determined that it would be fine to check him every 6 hours. So that's less heel sticks! Yay!

All in all, a great day for us and Evan!

Three weeks old!

Written September 22, 2013 3:30pm

Happy Three Week Birthday to our beautiful baby boy!! To celebrate, he was out from under the lights. Evan kept his eyes closed for our visit this morning. He seemed extremely content.

Andrew mysteriously disappeared during diaper change... He claims he's waiting for his turn at changing diapers when Evan's a little "studier". I have a feeling Evan will be quite "sturdy" for all the 4 am diaper changes when I want to sleep!! :)

They have continued to wean on the ventilator as Evan is responding well to the steroids so far. We should know if they're working as well as the doctors want them to by tomorrow.

We were also informed that the pneumo (pneumothorax) seems to have resolved itself. (Remember, Evan had a pocket of air outside of the lungs that the doctors were keeping an eye on via x-rays.)

Two weeks 6 days old

Written September 22, 2013 3:14pm

Andrew and I had a great day/evening celebrating with our good friends as they were married in Letchworth today. Despite the rain, it was a beautiful ceremony for two amazing people.

Evan was in good hands. I was able to stop in and spend a little bit of time with him before heading out to the wedding. He was back under the biliruben lights as his levels were a little high.

The urine culture was negative for infection so he was able to start the steroids in the afternoon. Thankfully, the steroids are mixed in with the breast milk so a new IV line was not needed. (He only has a PICC line right now.) Evan will receive the steroids every 6 hours.

When I called in at 4 pm, the nurse said that they had already weaned him based on a blood gas. Evan's glucose will need to be checked before every feed. The steroids can increase the sugars in his blood so they'll need to keep an eye on them.

We said good bye to another member of Evan's original team of doctor's today. We will certainly miss the doctors, but are looking forward to working with the new group.

After the wedding, Andrew and I both stopped in to see Evan. I timed my visit perfectly and was able to change his diaper and help weigh him. He's feeling a lot less floppy now that he's a little more filled out.

Two weeks 5 days old - Evening

Written September 20, 2013 9:48pm

Evan was all tucked in for the evening. He had a good afternoon and looked like he was gearing up for a nice, stable evening.

Evan's back under the bili lights, but he's right on the cusp of even needing them. I think his tanning goggles are starting to fit him a little better as his head is growing! :)

Two weeks 5 days old - Morning

Written September 20, 2013 12:53pm

Andrew took today off so we were able to both attend rounds this morning. Today is the last day with our Attending and Fellow. As Women and Children's is a teaching hospital, the Attendings and Fellows rotate each month. I will really miss the first people that helped develop and watch over Evan. I know the new team will be equally awesome, but it's still a little scary to think that someone new; someone that doesn't have 19 days of Evan knowledge is going to be taking over his care. Thankfully, we were able to meet the new Fellow today. She seems great and I think she'll quickly learn that Andrew and I like to be as involved as we can. As I've mentioned before, I take copious notes during rounds and anytime we learn something new. As one of the residents asked last night "Is there anything you don't track?"

Evan doesn't have any IV line right now. All meds and fluids are being administered through the PICC line. It's really nice to see his limbs (and head!) free of an IV. He looked so content this morning.

As the doctors have done all week - Evan's feeds were increased again. He'll receive 10 mL for the day shift and 11 mL on the night shift.

Pending the last culture, Evan will start the steroid therapy tomorrow. It's a 9 day course. The doctors and nurses have said that steroids work wonders and we should see improvement even within a day. For those of you that are worried about Evan's future Yankee career - the steroids that he's receiving are not the same that Arod and others took. He can still play professional sports with a clean record. :)

Two weeks 4 days old

Written September 19, 2013 8:59pm

Hello! Sorry for the lack of a mid-day update. I came home from the hospital and had Tool belt Thursday (I have a tool belt with all my cleaning stuff on it and I like to clean on Thursdays - super creative I know!) and before I knew it, I missed updating!

Evan's feeds were increased for the day shift to 8 mL and then to 9 mL for the night shift. His calorie intake was also increased from 20 calories to 22. Breast milk has 20 calories in it so he's receiving 2 extra calories from a fortifier powder. The doctors are prepping his gut for when he comes off the ventilator and moves to a different type of oxygen help. Once he's off the vents, there is a high chance extra air will go into his stomach. When this happens (which the doctors are planning on since it's a "preemie thing"), his feeds will end up dropping.

Evan's urine output sounds like it's almost back to normal. Woohoo!

The bilirubin level was raised from 6 to 8. This means that his level has to be above an 8 in order to go back under the bili lights. This level is adjusted based on his gestational age and his adjusted age. Andrew called me this morning to let me know that the bili level was a 5.4. I was all prepared to see Evan as a little blueberry today when the nurse informed me that his tolerance level was increased. He does still have the earmuffs on though and the strap is covering his eyes. I just want to be able to get a good look at him!

The nurses are on to his signature move of grabbing onto the vent tubing. They've taken to tucking his hand under the weight of his pillow. Evan must think it's a game because he slowly works the hand out from under the pillow until he can find something (usually the vent) to grab on to.

The next few days are going to be a little hectic as our very good friends are getting married! Since Evan has been so stable, Andrew and I are feeling good about going. Posts may be delayed or shorter - don't assume the worst! :)

Two weeks 3 days old - All Day Update

Written September 18, 2013 9:44pm 

Evan wasn't under the lights when I got to his room this morning. It was so nice to see him out and without his goggles on! He was a little cranky today - he kept desating. I think he was upset as he was on his back. His nurse didn't want to flip him to his stomach until she was sure the doctors were done ordering tests on him. The nurse made little earmuffs for Evan because she thought that maybe the noise in the room was bothering him. It looks like he belongs in Alaska! It seems like the ear muffs seemed to help.

The doctors decided to move Evan to a different type of ventilator today. The jet ventilator is a cross between a conventional ventilator and the oscillator. The jet vent (I keep calling it a jent for some reason) is giving Evan about 400 breaths a minute. Instead of taking deep breaths like you and I, the faster breaths will be easier and gentler on his lungs. As soon as Evan was switched to this ventilator, he stopped desating. Yay! They also took an X-ray and the preliminary results show that it's helping with his lungs. Hopefully I'll know more after rounds tomorrow.

Evan's feeds were increased from 6 mL to 7 mL this evening. He also received a transfusion so he's nice and pink. Tonight as we arrived, they were working on putting a new IV in him. The new IV is in his head, right above above his ear. It almost looks like he has a pencil behind his ear.

Somehow Evan managed to find time to go shopping. Andrew brought home a gift today - a fancy new camera!! Now I have something to learn while I'm hanging out with Evan. I knew he was going to be a little shopper! :)

Two weeks 2 days old - Evening

Written September 17, 2013 9:29pm

When Andrew and I arrived at the hospital, we met his day nurse as she was leaving. She gave us a quick run down - quiet afternoon. Evan's urine output doubled since yesterday! Wee!! (Ha, pun intended.) Evan's feeds were also successfully increased to 6 mL.

The IV tubing lines were also getting switched out. (This is done nightly.) It also looked like he was getting a new IV. I'm not sure where that was going though.

In super exciting news - Evan's social security card came in the mail today! Andrew and I also toured the pediatric group that Evan will eventually go to. The doctors stop in daily to check on his progress. Once he is discharged, it's nice to know that his pediatrician will already be familiar with his medical history.

I know I don't normally single out all the wonderful things that you all have been doing for us. I can't tell you how much we appreciate everything you have done for us. From the messages here, to emails, texts and cards, to the flowers, gift cards, cookies and dad doing the laundry (never again though! :)), we appreciate it all. Just having your support means so much to us.

Two weeks 2 days old - Morning

Written September 17, 2013 12:15pm

Andrew was able to listen in on rounds this morning. Seems like when I plan ahead to leave early, they do rounds even earlier!!

Yesterday, the doctors had noticed there was some air outside of the lungs (on the chest X-ray). At the time, they just mentioned it in passing and said that they'd keep an eye on it. This morning, it was brought up in rounds. They reiterated that the amount of air was very small and that they'd continue to monitor it with X-rays. This is called Pneumothorax. Here's a helpful explanation from the National Library of Medicine (http://www.nlm.nih.gov/medlineplus/ency/article/007312.htm): "A pneumothorax occurs when the tiny air sacs (alveoli) in a baby's lung burst, leaking air into the space between the lung and chest wall (pleural space)." While this sounds very scary, it's not - at least in Evan's case. Just as I was leaving this morning, Evan's nurse told me that the results from the morning's X-ray showed that the air was starting to dissipate! dissipate!

Evan's feeds were increased again to 5 mL. Sometime late this afternoon/early evening, the feeds will be increased to 6 mL. Woohoo!

We're meeting with Evan's pediatrician today. Even though he won't see a pediatrician for months, they're still keeping up with his progress so they're on the same page as the NICU doctors when he's released.

Two weeks 1 day old - Evening

Written September 16, 2013 10:30pm

Evan's feeds will be increased from 3 mL to 4 mL at midnight!

When we arrived at the NICU tonight, the nurse was redoing his blood gas draw. The first draw was clotted so it needed to be redone. :( The results came back with much lower CO2 levels. Hopefully he's stabilizing and they'll be able to lower the vent settings a little more.

Not much else to report on. He looked very content, jiggling away. Around 3 am his bedding will get changed. Andrew and I bought him some blankets over the weekend. After washing them, I promptly set about stinking them up. The nurses said that having our scent will help calm Evan. Unfortunately, the dogs are OBSESSED with the blankets. They seem to think they need to help stink the blankets up too. I think Evan can wait until he gets home to learn their scent. 

Two weeks 1 day old - Morning

Written September 16, 2013 2:36pm 

I made it to the NICU just in time for rounds today. My goal is to be at all of Evan's rounds. The nurses do a good job of filling me in, but it's nothing like hearing it straight from the doctor's. (Granted, a lot goes over my head, but I'm picking up the terminology!)

Evan had an uneventful evening. His urine output improved so the doctors have increased his feeds to 3 ml and have also increased his total fluids. This is great news as they were restricting fluids (to not tax the kidneys).

Evan had a brain scan this morning - still clear!! The doctors will most likely move the scans to every 2 weeks. The cysts are the same size so the doctors not concerned.

The chest X-ray was still a little hazy this morning. As they have been doing, they'll continue to monitor it.

We had a little excitement around lunchtime. Evan wasn't jiggling like he should be on the oscillator. His nurse noticed that there was a problem with the vent tube. Respiratory came in and it was discovered that the tube vent was disconnected from itself. Evan was still receiving oxygen, but his lungs were not jiggling. (The jiggling assists with keeping his lungs full so he doesn't have the in and out breathing that can tax his still developing lungs.) Since Evan is bigger, the doctors decided to extubate him (remove the tube) and put in a bigger tube. This would have had to happen anyway - the process was just sped up a little. Evan was a champ while they intubated him with a larger tube. I got to hear him let out the tiniest of cries. (The cry was actually a good thing as it helped the tube go down his throat easier.) Evan stayed saturated the whole time they were working on him. I was so proud of him.

After he was intubated, the PICC line needed to be redressed (standard procedure as they look at and retape the PICC line every few days). Then they had to take another X-ray to make sure the new tube was in the correct place.

When I came back from milking, Evan's nurse was laughing. She had just changed his diaper after all the craziness of the morning. She told me that she saved it for me - big messy diaper. We were both laughing at the amount of mess that he made and she said "Yep, I think we scared the shit out of him this morning." :)

I think I'm earning a reputation in the NICU. Several times now the doctors/nurses were talking about Evan's care and didn't know the answer to something right away. Thanks to my obsessive note-taking, I have been able to help out with some of Evan's care. The resident today said that my notes were better than some of the doctor's notes (joking I'm sure) but it's still nice to be able to participate a little in Evan's care. I think this is why I'm so bummed when I do miss rounds.

Two weeks old - Evening

Written September 15, 2013 9:50pm

We had an early-ish visit with Evan this evening. We were at the hospital for shift change. It's pretty interesting to hear the day nurse debrief the evening nurse. It's reassuring to hear them say "yes, that's what he does for me too" or "oh good, that's what his settings were last night". Evan has a great team that is watching out for him.

Evan did have a little more urine output today. The doctors are still hopeful that the medications from last week just need to get fully flushed from the system. Since Evan's organs are less developed, it will take him longer to flush the meds.

Tomorrow are the Monday morning scans. Evan will have a head ultrasound and X-ray to check on lung development. If the head ultrasound comes back clear, they may move to scheduling those every two weeks.

Evan was back under the bilirubin lights so he wasn't able to sport the Bills' blanket for he game. He did listen to the game along with the rest of his roommates (5 other boys and a girl). I think Evan was pleased with his 2 week old birthday present of a win. When we left he was listening to the pre-season Sabres game. Apparently the NICU likes to impress the importance of supporting the home teams at an early age!

Two weeks old!

Written September 15, 2013 11:04am

Wee! Evan is celebrating his 2 week birthday today! :)

He's back under the bilirubin lights, but he's right on the line of needing them. The nurse today said that depending on the doctor, he may not have even gone back under them today.

The doctors did give him some medicine to try to encourage urine output. Andrew and I stepped out for a bite and when we came back, the nurse said Evan was dancing a lot. Usually when he wiggles his butt it means he's made a messy diaper. Well, little man peed! Great news on his weekly birthday!

The doctors and nurses continue to reassure us that Evan is acting like a typical preemie. His lungs are underdeveloped, but again, they expect this with his age.

Evan's feeds were also increased to 2 ml! The feeds are now included in his daily fluid counts. The 1 ml that he was on was what they call trophic. Trophic feeds are used to help stimulate the developing gastrointestinal tract. These feeds are not included in the daily fluid intake. 

One week 6 days old - Evening

Written September 14, 2013 9:20pm

Evan was very peaceful this evening. He's back to sharing his nurse with another baby. I take this as a sign that he's stabilized.

The ultrasound that Evan had this morning came back with good results. The doctors are still waiting for Evan to urinate. They seem to think he'll start peeing later tonight or tomorrow.

Evan is only receiving sedation right now - no other medication. The doctors are hoping they'll be able to determine what's going on with his system once he's clear of the meds that he was on.

Thank you for the kind words, texts, emails, phone calls and cards. I tell Evan that he's got so many people that believe in him.

One week 6 days old - Morning

Written September 14, 2013 9:41am

Good Morning!

Andrew and I made it in time to listen to rounds. I'm starting to think I should have paid more attention in science class when the doctors start talking about electrolytes and x-rays and all the other medical jargon. 

Evan's vent settings are in a good spot. He usually hovers around 26-30% oxygen. His lung X-ray still shows premature lungs but this is to be expected.

Evan still isn't peeing enough. Today's goal is to try to take a urine sample to determine where the problem lies. Analyzing the urine output will help the doctors see if the problem is before the fluids get to the kidneys or if it's at the kidney level. 

The lactation consultant stopped by yesterday. She said I've already filled 4 or 5 bins in the freezer. Not sure how large the bins are but I'm feeling quite successful! :)

Evan decorated for the Bills game tomorrow. Maybe they can give him a win!

One week 5 days old - Evening

Written September 13, 2013 8:56pm

Evan is out from under the bilirubin lights!! He had his eyes open a few times this evening. I think he closed them right up once he realized a Buffalo Bills blanket covered his isolate top. :)

Evan looked so peaceful tonight. It was easy to sit and watch him sleep and wiggle from time to time.

The doctors are keeping a close watch on his urine output and his lungs. As his lungs are so under developed, they think that his bad Wednesday may have been related moving him off the oscillator too soon. 

One week 5 days old - Evening

Written September 13, 2013 8:56pm

Evan is out from under the bilirubin lights!! He had his eyes open a few times this evening. I think he closed them right up once he realized a Buffalo Bills blanket covered his isolate top. :)

Evan looked so peaceful tonight. It was easy to sit and watch him sleep and wiggle from time to time.

The doctors are keeping a close watch on his urine output and his lungs. As his lungs are so under developed, they think that his bad Wednesday may have been related moving him off the oscillator too soon. 

One week 5 days old - Midday

Written September 13, 2013 2:44pm

I'm sitting with Evan, watching him in his bubble. He's so close, yet I'm afraid to touch him. He tends to desat (that's how preemies show they're mad) whenever he's touched.

Evan is looking good - both clinically and in the flesh. He's put in some weight too! He's back to tipping the scale at just over 2 pounds. Some of his weight gain may be due to water weight, but not much.

The doctors have started Evan back on feeds. They'll start over with 1 mL every 3 hours. As soon as they feel he's tolerating it, they'll increase the amounts.

Right now, all of the lab work shows that Evan does not have an infection. Once the final culture is done growing, the doctors will most likely discontinue the antibiotics.

One week 4 days old - Night

Written September 12, 2013 9:18pm

We left the hospital around 5 today. The day did seem to go by quickly. We had a little excitement as the fire department showed up for a false alarm.

Evan was stable this evening. His CO2 levels were down so they'll be able to lower his vent settings.

Thankfully this evening's visit was boring compared to last night's.

Evan was out of the incubator bubble for a few minutes this afternoon. The day nurse had his goggles off. He looks so different! It's amazing the changes he makes even day to day. I swear his hair grows longer each day (and thicker!) the extra skin on his head is starting to fill in too. The goggles are fitting on his head much better. He does still manage to wiggle out of the from time to time.

One week 4 days old - Morning

Written September 12, 2013 10:33am

Evan is stabilizing. His vent settings are not high like they were yesterday. His O2 is set around 30% (room air is 21%). Last night it was around 90%!

Evan was started on a continuous sedation drip. He likes to become active as soon as his dose wears off. This will help him let the vent do all the work.

The doctors have started him on antibiotics as they await the culture results to see if he has an infection. It's better to start antibiotics as a precaution.

In exciting news, Evan is no longer the smallest kid in the room! As his nurse said "he's got seniority now!"

One week 3 days old

Written September 11, 2013 11:34pm

Sorry for the delayed update - Evan had a bit of a rough day.

I got to the hospital a little later than usual today so I missed rounds. I spent the rest of the day feeling out of the loop. Guess I gotta get my butt out of bed earlier!

After waiting all day, we returned to the hospital tonight to find out that the echo results (from that morning's test) showed the PDA had closed and that another round of Indocin would not be needed. Woot!

I noticed at one of his diaper changes this morning that his belly button nub fell off. Does this mean he's no longer a newborn??

As I mentioned above, Evan had a rough day. We know that he's going to have ups and downs and that we've been extremely lucky up to this point. All day his stats were kind of all over the board. He's usually pretty stable unless he's on his back (he loves being a frog on his belly). I ended up cupping him (one hand on his head, the other on his bottom) for about 40 minutes today. It seemed to help keep his stats nice and level (either that or his sedation had kicked in - I'm going with the mother's touch). Every time I told him I needed to leave, his stats would dip. One of the other nurses in the room said we needed to trick him into thinking I was still there. Using a few weighted pillows, I was able to slip out.

When Andrew and I returned this evening, Evan's blood gasses had gotten a little worse. The doctors made the decision to move him off the conventional vent and put him back on the oscillating vent. Evan's our little jello jiggler again. (Just a refresh - the oscillating vent is much gentler on Evan's lungs. He does require a little more sedation as the ventilator needs to do all his breathing for him. We don't want him fighting the ventilator.) They will take another blood sample in the morning. Today's bad day may be related to a lung infection that will hopefully be treated with antibiotics.

Witnessing our baby go through a bad day is horrible. To just sit by his side and not be able to help or do anything is indescribable. I'm sure Evan's had other bad moments, we just weren't there to witness them. To see the respiratory team, the on-call doctor and his nurse all looking worried, is scary. I wish he didn't have to go through all of this - what a crappy introduction to life.

Andrew should be getting home soon. He called as he left the hospital to say that the last gas check showed great improvement. As long as Evan is left alone, he is a happy camper.

I'm going to focus on the positives from today: he grew up a little with the loss of his belly button nub and he doesn't have to go on Indocin again (at least for the time being). I'm also going to replay those 40 minutes of holding him over and over in my head. Even now, after a crummy night of watching him get poked and prodded, I can smile because I got to touch him and be a mother to him. Even if only for a short while.

What is PDA?

Written September 11, 2013 6:54am

I thought I'd drop a quick explanation of PDA or Patent Ductus Arteriosus.

PDA is very common in premature babies. In Evan's case, we were told that he has mild to moderate PDA. He didn't experience any symptoms of the PDA in the first 8 days of life so they decided to wait it out. The medication to treat the PDA can be harsh on the developing system. As Evan was okay, the doctors didn't want to put him on the medication too early.

Because I'm not a doctor (yet!), I'll let the National Institutes of Health (http://www.nhlbi.nih.gov/health/health-topics/topics/pda/) explain PDA.

When a baby is born with PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of the fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in (full term) newborns.

In some babies, however, the ductus arteriosus remains open. The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Evan's doctors are monitoring his PDA with frequent echos. He has a follow up echo scheduled the morning on September 11th to see if the medication (Indocin) was effective.

I typically need to know the worst case scenarios (what if the medicine doesn't work, what happens next, will he need surgery, where does the surgery happen, etc). For some reason, I'm taking Evan's PDA on a day-by-day status. It's easy to get caught up Googling other babies and their treatment. Evan is his own little man and he'll do things his way.

Hopefully this helps a little bit with understanding PDA. Just remember, it's very common in premature babies. It is treatable and it shouldn't (won't!) have lasting effects on Evan's quality of life.

One week 2 days old - Night

Written September 10, 2013 8:50pm

Not much to report on this evening. Evan received his last dose of Indocin. Hopefully the echo in the morning will show that the PDA has closed.

Evan spent most of our visit sticking his tongue out. He also continues to suck on the ventilator tube. I hope he can be extubated soon. It seems like he's ready for the pacifier. The nurses will offer the pacifier after each feeding. This will help train Evan to suck so he'll be ready to breastfeed (someday). 

One week 2 days old - Morning

Written September 10, 2013 10:08am

I got here just in time for rounds today. I'm starting to actually understand them! (I'm slowly easing back into driving.)

First, the swelling on his foot may have been related to the sensor
being wrapped too tightly on his foot. Dr H will be back after rounds to double check it.

I can just make out his eyelashes this morning. I think they're longer and redder! Where's this ginger-ness coming from?! :)

His blood gasses remain flat. His nurse today (the same one that helped admit him on his first day) said that means he's nice and stable.

They'll do another echo tomorrow morning to see if the Indicin worked.
Based on results today (lower urine output for example) Dr H thinks it's
working. Only the echo will show for sure though.

Evan's light level is also down, but he'll continue to stay under the
lights.

He's very wiggly this morning. I'm starting I realize this typically means he's either working on making a messy diaper or he's sitting in one.

Evan's also been sucking on his respirator tube. I took a two minute video trying to catch him sticking his tongue out. Naturally he only did it before I had the camera out and after I turned it off. He also has a case of the hiccups. He's probably too small to teach him how to get rid of them though. Guess I'll just have to wait to teach him the family secret. 

One week 1 day old - Evening

Written September 9, 2013 9:27pm 

We arrived at the NICU this evening and finally heard what we were waiting on all day - Evan's brain scan came back all clear! Andrew and I both had huge sighs of relief. The cysts also remained unchanged. Such great news.

Evan's bilirubin lights were upped to level 2. I think this was done as a precaution as well as they started him on Indocin (to hopefully fix the PDA). His feet are a little swollen but the doctors said they would just monitor them overnight. The swollen feet may be a side effect from the medication though.

We're still elated from the clear brain scan. I know it has been hanging over our heads. The next one will be in a week unless something happens that would make them need to do it earlier.

Evan should sleep well tonight. He has a teddy from Great Gramma Wheeler in his bed now. My Red Teddy went everywhere with me even to college. He now resides next to my shoes. :) I know Evan will look forward to snuggling his very own teddy. 

One week 1 day old - Morning

Written September 9, 2013 10:44am

Evan had a new IV put in overnight, unfortunately it's in his head. It's very alarming to see it at first but the nurse assured us it's no different than one in another limb. He only receives medication through the IV. It's so nice to see his arms free. He still has the PICC line in his left arm, but at least he doesn't have the popsicle stick brace on his arm. Now he's free to do the wave!!

Andrew dropped me off at the hospital this morning. I was able to watch him get the brain scan done. We're still waiting on the results.

After rounds I learned that his PDA needs to be treated. He had a little blood in the respiratory tube last night. Instead of continuing to wait out the hole in his heart, Evan will start on a new medication that will hopefully close the hole. Unfortunately, this medication is hard on the liver and kidneys. He'll also have to go off feeds while he's on the medication (3 doses 12 hours apart). He'll have another echo tomorrow to see if the medication is helping. If it's not, they'll discontinue it.

Evan is also back under the bilirubin lights. His light level is between 5 and 6 and he's at 6.5. They'll check his blood gas level in 12 hours to reevaluate. We know that he'll be on and off the lights for a while. Now that he has two free arms, he really looks like he's on the lazy river.

Evan is slowly introducing me to a messy diaper. I think he knows I'm not cut out for a full blown blow out just yet. He got a little mad at me this morning when I changed him. Thankfully he was flipped on his tummy and was content again. 

One week old - Good Night

Written September 8, 2013 9:16pm

Evan was born 7 days ago and I got to pick him up for the first time today! It was time for his nightly weigh in and I was asked if I wanted to help. Did I?! My job was to scoop him under his head and buns so the nurse could calibrate the scale. I then had to quickly set him down for the weigh in. Just like with the first diaper, I was a little fumbly. Poor Evan had to be weighed three times because the first two times I did it were way off. I was being too delicate with him. After watching the nurse scoop him I now know I can be a little firmer. He was very soft but still floppy with his extra skin. Evan was weighed naked so as his nurse said "now's the time for him to pee on you!" (He was a good boy and didn't.) After the weigh in, I changed his diaper. I definitely am getting better with that! Now Andrew's got to get in there! The nurses said that they always let mom do all the firsts and then Dad can help. Yay me! :)

Evan picked up another primary nurse tonight. He's becoming quite popular. His nurse said that he reminded her of a little boy she took care of a few years ago. He was born just before 24 weeks and is now going into first grade. I love hearing success stories!

One week old!

Written September 8, 2013 6:28pm

Happy One Week birthday to our amazing little wiggly worm! Andrew and I arrived at the hospital to find that one of Evan's nurses had added an adorable frog blanket and froggy hat to his incubator. He has a little growing ahead of him before he can fit in the hat.

Evan's feedings were increased again today. His lung X-ray was "hazy" so they'll continue to monitor that.

Evan also experienced his first Bills loss. He is officially a Buffalo Bills fan. He was unfazed by the game that was going on in the background of his room. Only a week old and he has the "eh whatever happens" attitude down!

Andrew, Evan and I are so appreciative for everything that people have done. From prayers to mowing the lawn to dinners, thank you. Just knowing that we have you supporting us makes this whole situation that much easier.

Tomorrow Evan has a brain scan. We're going to hope for a nice clear scan.

6 days old - Night Night

Written September 7, 2013 9:37pm

Evan had a big day today. Not only is he making consistent diapers but he also has his ART line removed. This line goes through the belly button artery. Thy use it for blood draws and transfusions. This has a limited use though (just like a full term, the belly button nib falls off). For blood draws, they'll have to stick his foot. Thankfully, they'll only need to do this every 8 hours.

Evan was also exposed for a bit of our afternoon visit! The top for the incubator was up so the nurse could have a little more room to work. He's not under the bilirubin lights so we were able to get a good look at him. I think his hair has gotten longer and is filling in more. Evan's eyelashes are also growing in. They're very fine.

We're so happy for good days like this. Evan is such a strong little boy. He gives us our strength.

6 days old - We're Celebrating!

Written September 7, 2013 11:57am

Hello Everyone,
Even had a new IV put in overnight. They freed up his right arm. His new IV is in the left arm, along with the PICC line. Now that the right hand is free, Evan is busy working it out. He was very squirmy this morning when we got to the hospital.

Evan also finally pooped!! Yay! Andrew and I were so excited to hear that he had a stool. It's important for Evan to pass stool otherwise he could end up with a distended belly. He also had another dirty diaper at 11!! So to celebrate Evan's first dirty diaper, we got donuts from Paula's (an awesome local donut shop).

5 days old - Good Night

Written September 6, 2013 9:20pm

Confession: I was aging our son! Apparently I'm anxious for him to grow up because I was off a day off on his age. Whoops. So he's actually 5 days old, not 6. :)

We had a good night visit with Evan. Andrew was put to work fixing his goggles. The goggles don't quite fit on his head so they shift around a lot. As soon as Andrew fixed them, he wiggled and got his eyes free. 

They're still making adjustments on the new conventional ventilator. There is a slight chance that he'll have to go back on the other oscillator. They don't want his lungs under too much stress with this new vent. 

He's taking the 3 mL feedings like a champ. It seems as though his feedings are increased in the mornings when the doctors do rounds. 

Everyone in the NICU is amazing. All of the doctors and nurses are so friendly. They're constantly asking us if we have questions. They're so patient even when we ask the same things over and over. It's great to know there's good support at the hospital.

Evan looked like he was blowing bubbles today. He also used a super tiny pacifier. Granted he wasn't sucking on it, but he was definitely tonguing it. 

The puppies moved back in with us. It's nice to have them home again. They were certainly spoiled while they were with the Grandparents. Layla has appointed herself head of milking. She likes to sit behind me on the pillows when I milk.

5 days old - Morning

Written September 6, 2013 10:59am

Good Morning!
Andrew brought me to the hospital around 9. He visited for a few minutes and then went to work. Evan is stable enough that he's comfortable leaving Evan for bits of time.

The big news (so far) is that Evan was moved to a conventional vent! He loves this vent so far. The tubes are a lot lighter so they're able to change his positions easier. They'll continue to watch his levels with the hope that he can be extubated over the weekend.

They've increased his feedings to 3 mL. They need to make sure he continues to digest the milk. I'm glad they're upping his feeds. I'm pumping almost 100 mL every 3 hours!! He's gotta catch up. :)

I also changed his morning diaper. His bilirubin lights were off so he kept a eye on me for the whole process. I was a little fumbly, but I will get better. I liked that he kept an eye on me. :)

4 days old - Evening

Written September 5, 2013 9:19pm

Not much had changed when we went back this evening. Evan was still sedated from receiving his PICC line. The PICC line is in his left arm. It shouldn't restrict his movements at all. We still have our little wiggle worm. :)

He is propped up on his right side as his lung is collapsing a little bit. This is completely normal. By propping him it will force air into the lung to reinflate it.

He is aspirating a little. This means he's not fully digesting all of his 2 mL of milk. They can tell this as they always "draw back" (pull out/suction) before giving him a feeding. Again, the nurse didn't seem too concerned. His belly is soft (not distended) so he is digesting most of it.

Evan officially has a primary night nurse! This means that she will always be assigned Evan when she's working. She's no-nonsense and very focused on him.

We'll hope he has a boring night.

Again, we cannot thank you enough for you thoughtfulness and prayers. Without your support we would be so alone.

4 days old

Written September 5, 2013 11:31am

Andrew and I made it to the hospital in time (what we thought) for rounds at 8:30. Unfortunately, the doctors didn't make it to Evan until 10:30ish. We didn't get much in the way of updates until then which was a bit of a bummer.

Evan is stable enough that he's sharing a nurse with his roommates. I guess it's a good thing that he's stable enough to share, but it kind of stinks that he doesn't have someone watching his every blip on the monitor.

The doctors started reducing his humidity. The humidity was high when he was born as preemies will lose fluids (and weight) through their skin. Now that he's older they can start reducing the humidity.

Oh! Out little boy is growing! He now tips the scales at 920 grams (just over 2 pounds!!!!) His feeding a have also been upped from 1 mL to 2 mL!

Evan will have a PICC line inserted today. A PICC line is inserted in the arm and is used to deliver fluids or medications. Right now they're using a line in his umbilical stump. This is only good for a few more days.

Evan grasped onto my finger for a few minted this morning. He's got a nice strong grip. He's holding onto one of his monitor lines right now. He must have just discovered his grip. Up until today, his hands have been in tight little fists.

Time for the lunchtime milking! I'm so happy that I'm able to provide for Evan. His stockpile of milk is going to start overflowing, but it will be there for when he's ready. 

3 days old - Good Night Evan

Written September 4, 2013 9:27pm

Well, Andrew and I are back home tonight. We went and saw Evan after we had a delicious grilled meal. What a change from hospital food!

Evan had another feeding when we got to the hospital this evening. He is digesting well which is a fantastic sign! His oxygen did dip for a brief moment this evening but it was easily corrected when the breathing tube was suctioned.

As of when we left, Evan had not received any sedation today! His ventilator was also at 21% which is the same level that you and I breathe at. He's such a strong little boy.

We will hope for another dull evening. Andrew and I are trying to get to the hospital by 8:30 tomorrow so we're present for rounds.

Two of Evan's roommates were sent home today. I know we're still a ways off, but I cannot wait for it to be his turn.

3 days old - Mid-day Notes

Written September 4, 2013 1:58pm

Hello!

Evan had a good night. He had a little freak out when they flipped him in his back but was able to stabilize quickly.

Around 11:30, Evan had his first milk lunch! He's only taking about 1 mL every 3 hours. (I'm milking about 34 mL every 3!) I'm breaking up the milkings into 10 mL bottles so it isn't wasted. The lactation consultant said I was already working on filling another bin in the freezer!

We left the hospital around 1. We gave Evan a little pep talk before leaving. It's hard not being in the same building as him. We are encouraged to call the nurses anytime. We'll probably call in a little bit to see how his 2 pm levels and move went. We'll head back down tonight to hang out with little man.

We are waiting for him to poo. Since he wasn't really eating up until this point it hasn't been a big deal. I think maybe we need to read him the book "Everybody Poops".

Almost home now. I am ready to pump and then take a nice long nap.

As sad as I am to not be so close to him anymore, it was wonderful to feel the sun on my face!

2 days old - Catch Up Notes

Written September 3, 2013 8:14pm

Hello,

Evan was placed on his tummy today. He loves it. He's all curled up like a little frog. Every so often he wiggles his butt back and forth. It's the cutest thing. :) I was able to change his diaper today. Just because he's little doesn't mean that he's not all boy - his nurse K reminded me to keep a diaper under him at all times otherwise he would pee (not could, would!). Changing his diaper while he is in his tummy is challenging. K just told me to get right in there and lift him up. She thinks preemies are tougher than full term babies. I think I have to agree with her.

After meeting with Dr. H (his doctors will change monthly), she seemed cautiously hopeful with his progress today. All the doctors like to keep it real and don't get too far ahead of themselves with excitement over the little things. (That's why we have K - she is Evan's cheerleader!)

We learned that the doctor hopes to wean Evan right off the oscillator to nose ventilation. This type of ventilation is non-invasive. I think we're still several days from this milestone, but it's great to know he wouldn't have to go to a regular vent first.

You'll be happy to know that I am milking like a champ if I do say so myself. I am so excited to be able to stockpile milk for Evan when he's ready. They will slowly introduce milk to him soon. The milk will be heavily diluted (1 cc per day) but it will start to help develop his gut. I cannot wait for this day. It's hard watching the nurses take care of your baby while you stand helplessly to the side. As he becomes more stable we will be able to be more involved though.

My sleeplessness has caught up with me today. If I'm not milking I'm napping. I haven't been down to see Evan as often as I'd like, but it's important for me to keep my strength up too.

I am going to be discharged tomorrow. On our way home we have a few errands to run (of course!!) I think Andrew is really looking forward to helping me with all the errands in the next few weeks! My big excitement for tomorrow will be in getting milking bras. Moo!

Hopefully I'll make it downstairs for a final goodnight. We did drop off a hedgehog for Evan. It's bigger than his head!

2 days old - Good Morning

Written September 3, 2013 10:17am

Evan was a little fussy last night. His vents had to be turned up. This is a little but of a bummer since we'd like to see him off of this vent system sooner rather than later. They won't be rotating him as much today since his vent tube seems to pull. The respiratory therapist assists with every movement though. When we were down last night else was concerned with the tube. They will continue to move his head every 4 hours so he doesn't lay on one side for too long.

Andrew stayed for rounds. The doctors reiterated that the brain scan looked good. Evan should also come out from under the bilirubin lights today as well. There is a good chance that he will end up back under them throughout his stay.

They are going to place Evan on his stomach with his next movement. This will allow his head to stay in the same position. 

1 day old - Good Night Evan

Written September 2, 2013 10:27pm

We timed our good night visit perfectly. When we arrived, Evan had a group standing around him. They were getting ready to change his position. It was a little scary to watch as they have to unhook his monitors. He did have his beautiful eyes open for most of the transition.

It was also time for a fresh diaper - I got to change him!!!!! The first of endless changes. :) After watching the nurses "man handle" him, I felt confident enough that I wasn't going to break his little legs. Changing a preemie diaper is just like a full term baby - grab those legs and scooch a fresh one under the butt.

Andrew and I were also able to give him kisses good night. What an amazing feeling. I also helped put his bilirubin hat and goggles on for more phototherapy. It felt so great to be able to take care of our son.

After all that stimulation his next gas check may be a little off. They really try to limit the amount of stimulation (lights, diaper changes, body positioning, etc) to every 4 hours. His nurse did say that if he started flipping out because of a dirty diaper she would always change him early. He really doesn't like dirty diapers. 

1 day old - Evening edition

Written September 2, 2013 6:47pm

We had a great day today. Both Andrew and I were able to cradle Evan! (One hand cupping his hand and the other cupping his feet.) We also dropped off a blanket with our scent on it. Evan's nurse will place it under his head the next time they reposition him.

Evan had his first brain scan this morning. The scan had been weighing heavily on Andrew and I. His scan came back clear! We asked if they would scan the same time the next day and the doctors said no. Unless something happens (blood pressure drops for no reason) they won't scan again for a week. What a huge sigh of relief!

Evan is receiving phototherapy to treat bilirubin. It is very common for preemies to receive this light therapy. It looks like he's tanning under the lights. He does wear a protective eye cover. Under the lights we were able to see that he's growing a goatee. I'm not sure I approve. :)

I'm moving around as much as possible. The surgery dressing was removed this morning. As long as I stay on top of my Motrin schedule, I can manage the pain.

We'll drop off more milk and visit with Evan again this evening. Our next milestone is to move off the oscillating ventilator (it jiggles him but is gentle on the lungs) and onto a regular ventilator. Once he's off the oscillating ventilator he'll be a step closer to drinking (very diluted) milk!

All in all we had a successful day!