Four weeks 5 days old

Written October 4, 2013 11:00 pm

Evan had a MUCH better day today!!

Andrew and I were both present for rounds this morning. I was happy he was able to stay so we could both hear Evan's plan for the day.

The doctors put Evan on caffeine. Caffeine helps stimulate the brain to remind it to breathe. He wasn't able to be on it before due to the hydrocortisone. (The hydrocortisone was discontinued last night as he had run through the full program.)

Evan was also put back on feeds! They started him at 10 mL for the day. Tomorrow he'll go up 5 mL and hopefully he'll be back to full feeds on Sunday. As he is only at half feed right now, he is back on TPN for nutrition. As soon as he's back at full feeds, he'll be off the TPN. Evan will also be back on his 24 calories by Sunday as well.

As long as the cultures don't grow anything, the antibiotics will be discontinued after 48 hours (from last night). The initial results didn't show any infection though. If Evan had more spells today, they would have ordered a respiratory screen. This screen tests for 7 common infections (flu being one of them). Thankfully, Evan only had 2 bradys today so they didn't have to get the screen.

The lactation consultant came in to talk to me today. Apparently I am cut off from bringing in milk! I have 10 bins in the freezer. I can leave whatever I milk during the day at the hospital there, but whatever I milk at home has to stay here. Apparently I could have been storing the milk in bags (instead of the bulky, space wasting bottles). Had I known that, I would have been able to stock a lot more at the hospital! The next few nights will be spent eating the rest of the ice cream sandwiches to make room for milk. Too much milk! Evan needs to start eating full feeds so he can go through some of those bins!

There was a question about Evan's weight. Last night (Thursday), he weighed in at 1230 grams or about 2 pounds 10 ounces. He gains about 15 grams a day (on average).

Evan's nurse remarked how smiley he is. For those that say babies don't smile - obviously have never had a baby smile at them. Babies definitely smile and mine is very smiley!

Even with an IV in my head
(which I prefer so I can have my hands free to pull on stuff), I'm smiling!

Four weeks 4 days old - Update

Written October 4, 2013 10:57 pm

Howdy and sorry for the delay!

We were woken up on Thursday morning due to a call from the hospital. Not really the way I want to start the day... Overnight, Evan's acidosis had gotten worse. They stopped his feeds and administered sodium bicarbonate (essentially Tums). He was also taken off the high flow cannula and put back on the NIV (still not intubated though). The NIV would give him more respiratory support so he could concentrate on brining the acidity in his blood levels down. Thankfully, we were already aware of the acidosis situation so it was more of a "heads up" phone call.

Evan experienced lots of bradys on Thursday. (During rounds on Friday I learned he had 15 brady episodes.) Andrew and I were at the hospital Thursday evening and witnessed 7 alone. Bradys are very scary because Evan's heartbeat drops. He will pick it back up with mild stimulation (a pat on the bum or a rub on the head).

An X-ray early Thursday morning showed that there was some air in Evan's stomach and intestines. Up until this point, he has never had a problem with his stomach or intestines. Sometimes air gets into the stomach and will cause a baby to have problems with feeds. Evan always digests his food and his belly is always nice and soft. To help vent the air, Evan had a new tube inserted into his stomach. (I tried to look up the word so I could be technical, but couldn't find it...) The tube was set to suction to help rid his stomach of the extra air. The air that was stuck in the intestines would have to come out the old fashioned way. Evan needed to fart!

During rounds, I was able to see the X-ray. Instead of focusing on the stomach and intestines, I right away noticed that his lungs were much clearer. The doctors did say that his lungs looked great. Woot! :)

Evan's labs were repeated to check for infection. The doctors started him on preventative antibiotics incase any of the labs did grow out an infection. This was particularly frustrating as he was set to come off his antibiotic.

Evan also received a transfusion in the morning. This will also help with the acidity.

When we got to the hospital Thursday night, our smiley little boy greeted us. The stomach vent was no longer suctioning air. The latest X-ray showed that the air was looking much better.

Around 9:30 pm, Evan experienced a really bad brady. The doctors couldn't figure out what Evan was struggling with. They ordered the labs from the night before redone to see if he picked up an infection. They also increased his respiratory support. The doctors were also talking about re-intubating Evan and putting him back on the conventional ventilator. The whole experience was very scary to witness. By the time we left, Evan was peaceful and stable.

"I don't trust this thermometer!
I'd rather have my blood drawn!" 

Four weeks 4 days old

Written October 3, 2013 10:57pm

Howdy - I'll write a detailed post in the morning.

Evan is stable, however he had several bradys during the day and evening. The doctors are trying to eliminate what could be causing the bradys. Unfortunately, it's kind of a guessing game, tweaking things here and there.

Again, I'll write more later. Evan was bright-eyed and awake when we first got to the hospital this evening. Hopefully we got some good pictures. Little munchkin has a wide range of faces he likes to make.

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.

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.