Sawyer’s Lobectomy

Today is the 6 month “anniversary” of Sawyer’s lobectomy. I have been thinking about writing this post for the past 6 months, but general business with a baby and a new job has been the surface-level reasons why I haven’t returned to update. However, I think I also avoided returning emotionally to that time because it was tough… but when I recently checked into my wordpress and looked at my Sawyer’s Lungs post (which I wrote a few weeks ahead of his surgery in June of this year) I saw that it has had about 600 hits… so for a blog I don’t promote in any sort of huge public forum, that’s pretty huge. This means other parents are specifically searching out CCAM/CPAM surgery and prognosis, so I really owe it to all of them to do a play by play, as promised. **I do post pics that were provided by the surgeon as well as pics of his incisions and bandages in this post–just a forewarning!

 

In the days leading up to surgery, I was nervous and turned inward. I remember snuggling him as he slept and worrying that he wouldn’t make it, that something would go wrong. Chris was so encouraging, as was my friend Annie when my tears broke the surface and the floodgates opened in the middle of a coffee shop.

 

However, the night before and the day of the surgery I was outwardly calm, cool and collected—a coping mechanism that has served me well in many high stress situations. The hospital gave us wipes to help sanitize Sawyer’s skin after his bath, which he didn’t like one bit.

 

His surgery was on Friday, June 10th. He slept decently well the night before (for a 5 month old), and when we got up and made the drive to the hospital at 6 that morning, I couldn’t help but think that he had no idea what we were about to put him through.

 

He did okay while we were waiting for the surgery to start, but got pretty irritated when the nurses came to draw blood. We also got the rundown about anesthesia again, which we had heard when we were there for the CT scan. I was then thankful for the CT scan anesthesia, because I knew that if he could tolerate being put under once, he would likely be okay again (or, this is what I told myself). We were also greeted by one of the residents, who Chris and I called kid doctor (he looked young—we later found out he was a Bethel alum, although he was a more recent grad than Chris and I… which made us feel old). The resident marked a big x on his left side, and the plan was to remove the upper left lobe.

 


Sawyer was a little disgruntled because I couldn’t feed him, so Chris held him quite a bit so he couldn’t smell me as much… He was just starting to be his happy self in the little pushcarts when they came to take him back to surgery. We walked with him until the doors of the sterile area, and handed him off (I still get choked up thinking about that moment).

 

Then, we waited. We had great company during the wait, which really helped pass the time. My friend Vanessa came by, and spent time with us on a rare day when she was kid-free. She brought us a gift from our journey group, which was a hospital survival kit… it had snacks and magazines, which was so awesome. Chris’ parents also came by to wait with us, and Chris’ grandparents happened to be in town, so they came by to support us as well. My mom came to town for the surgery to help assist with Lydia, and she brought a sweet book that had a bunch of encouraging notes from people who were rooting for us and praying for us from afar. My friend Carrie also came by to wait with us for a bit, and she brought a bag of Aveda goodies. At the point when she arrived, it was what should’ve been the halfway point in the surgery, and I was kind of a wreck inside because we were told that we would be updated hourly. We were nearing the two-hour mark at that point. She affirmed my feelings and encouraged us to just go ask—so I sent Chris into the PACU to ask for an update. They thankfully updated us not long after that, saying that they were about to finish and start sewing him up! (So this meant that they were about 20 minutes ahead of schedule).

 

A short while later, I was getting antsy about wanting to stay out and wait for the surgeons to come update us again, but also knowing I really needed to pump and that I would want to go to Sawyer in recovery with some fresh milk. I went into the pumping room and of course I was only about 5 minutes in when the surgeons came out. Ugh. So I quickly got myself together and came back out to the waiting room so I could hear the update.

 

The surgery was a success, and they were able to do the keyhole surgery, as opposed to making a larger cut. The keyhole surgery involves 4 incisions… one for a camera, two for robotic hand/tools, and one for his chest tube. The only thing that didn’t go as expected was that the cysts were not in his upper lobe, they were in his lower lobe (the CT scans are tough to read, and the lobes sort of lay on top of each other). So after the course correction, they removed the lower left lobe (which accounts for a little over 20% of his total lung capacity). The size they removed was about the size of a racquetball… which flabbergasts me, since my 5 month old is so tiny!

 

The surgeon showed us pictures of the affected lobe (above, the darker purple splotches), and there were cysts everywhere. I am glad we made the decision to remove the it, since it wasn’t clear how bad it really was until they got in there. Thankfully, the lung was not infected and they were able to remove everything cleanly. He has staples in his chest to close off the area where the lobe would be, which will stay in him and show up on any future x-rays. His lungs will not regenerate, but they will expand to fill up most of the space left by the missing lobe. The pics below is a view of the staples and the space left after the lower left lone was removed:


 

Modern medicine is so amazing!

 

The recovery was not fun. I was able to go back and hold him as he woke up; I could hear him crying before I entered the recovery area, and the nurses were sweet to help me situate him. I tried to give him a bottle of milk (because I didn’t want to hurt him by having him on his side to nurse), but he wasn’t having any of that. So I just sat there, holding my little crying baby, knowing I could do nothing to help him feel better in that moment that I wasn’t already doing.

 

After he calmed down a little, the nurses called to see if his room was ready. I then accompanied him up to his room. The poor little guy was so puffy from all the fluids. I was nervous to hold him or move him at first because of the chest tube… I was worried that it would move or slip around, hurting him. I now know that although the tube really does hurt them inside because it sits on nerves between the ribs, me moving him won’t pull out the tube because they stitch the tube around the opening to keep it in place (I wasn’t aware of this so I am sharing this so other moms and dads know that the tube isn’t going anywhere).


 

The first night was brutal, and I basically held him with breaks to pump. He wasn’t taking in much milk, so in order to keep my supply up I had to call in the nurse to help put him back in bed because Chris and I were so worried about hurting him if we moved him ourselves.

 

The next day, he still seemed to be in a lot of pain while awake. The surgeon saw him on his rounds, and although the incision and chest tube drainage was looking good, because of the pain he was in, he ordered for there to be a continuous morphine drip, rather than the oral dosage he would get every few hours. Even at maximum dosage, he would be in so much pain (until the medication was dispensed, then he would pass out).

 

The nurses were really stretched thin on our floor, and he cried once for over a half hour in pain. We pushed the call button multiple times, and a nurse would occasionally pop her head in, but none of them had the clearance to dispense more medication (and our nurse was not available due to an emergency). My mom was there visiting at this point, and she was beyond upset about this. I just kept trying to sing to him and cuddle him, but it was so hard to see him in pain. Eventually our nurse came (we were at 50 minutes of wailing at this point), and dispensed medication that then made him pass out again.

 

The charge nurse was made aware of what happened, and later that evening we were visited by the pain specialists at the hospital. The combination of the wait time and the medication not working had apparently pushed Sawyer’s case up the hierarchy and the pain specialist took over his case and pain management from that point out. Apparently, this isn’t typical of the recovery from this surgery in an otherwise healthy kiddo, but we had never been through it before, so we had no idea that something was amiss.

 

He was then given a litany of medications, and we were so grateful that he was getting some relief. It wasn’t until day 3 that our little guy smiled for the first time since the surgery, and he seemed then to be on the upswing. He started drinking some milk (before day 3 he would only have maybe an ounce or two at a time a few times a day). By day 3 I was back to nursing him and he definitely preferred that.

 

Chris and I slept in the room with him each night (Chris in the chair and I was on the couch… when he would need comfort or needed to nurse, we would switch places). During the day, we sat with him while he slept, watching Friends episodes or reading magazines. We celebrated our 6th anniversary, Sawyer’s 6-month birthday and Chris’ 29th birthday in the hospital, so it was a big weekend! Chris’ parents, Chris’s brother and his family and my mom all came to visit during his stay (Sawyer snoozed through most of the visits, which was much better than crying in pain).

 

By Monday, Sawyer was starting to act a bit more like himself, but it was clear his chest tube was still really bothering him (and whenever we started to back off of some of his medications, it was clear he wasn’t ready to do that). On Tuesday morning, we got the great news that because the drainage had slowed down and was no longer bright red, his chest tube could come out! The nurse practitioner came to remove the stitches and tube, and I assisted in keeping Sawyer calm, and observed the process while holding him down. After a little crying because of the stitches, the tube was out, the opening was covered with gauze and Sawyer was exponentially better. It was so nice to be able to pick him up without worrying about the tube, and Sawyer was able to sit up (a skill he had only recently acquired).

 

After his sister came to see him and we walked the halls a bit in the wagon, we were officially discharged that afternoon. We took Sawyer home only to find that his chest tube site was leaking all over the place (through the gauze and through two layers of clothes). We nervously called the hospital again, who told us that we needed to come right back.

 

My concern was his collapsed lung, since Sawyer had a open hole in his chest and all. Thankfully, all they needed to do was refresh the gauze, and the surgeon we visited with (not our own, but on his team who also performs the surgery) basically said that it was no big deal. That we would know if there was anything to worry about… so I guess that was supposed to be reassuring, but I’m no M.D.

 

So overall, we were in the hospital for 4 nights… his pain and recovery seemed to be a little worse than the typical case, but the length of his stay and his recovery after he got home seemed to be pretty typical from what I have read. After he got home, we kept him on his pain medication regimen for 3 days, did ibuprofen as needed for a day or two after that, and then he was good to go. His chest tube continued to have discharge, and the bandage even had looked a little green under the tape. I was concerned about the color, so at a week out, we went back to the clinic and had the surgeon make sure it wasn’t infected. Since we were in the clinic anyway, he did his post-op check and said he was healing up beautifully. The test results came back, and the CPAM diagnosis was confirmed. We were also relieved to hear that the cysts were benign, so our hope is that this is the end of his journey with the pulmonary clinic!


Here are his two smaller incisions 1 week post op:


One month post-op:


After we came home from the hospital, Sawyer regressed a bit with his sleep… he slept in his own space (a pack and play) before the surgery, but post-op, he refused to sleep unless he was laying next to me. We ended up bedsharing for 6-8 weeks after that, and I was fortunate that I wasn’t working at the time (we were on summer break), because I am never able to sleep deeply when I’m sharing a bed with one of our little ones. He now is in his own crib in his own room, and although he still wakes a few times a night, we both sleep better now! His older sister also was still waking a few times a night by this point, so I know it wasn’t the CPAM.


His incisions today look fantastic… I kept him in a swim shirt all summer, so the sun wasn’t able to get to them (our surgeon suggested that we keep him out of the sun for at least a year for the best results if we wanted the scars to be less conspicuous). I can barely see them now, and the only major thing is that his bigger incision creates sort of a bump on the side of his back. Some day all the girls will think his scars are pretty BA, I’m sure 😉

I was expecting him to have some physical regression after his surgery, but he got back into business right away. He is brave, and even started to stand and walk months earlier than my first, non-CPAM daughter (he turns one tomorrow, and has been walking for over two months!)


Anyway, we are so incredibly grateful that this chapter is over. Babies are such a miracle, and I am so thankful for doctors who know how to perform delicate surgeries, and we are blessed to have a team of people who lifted our whole family up in prayer.


 

**If you are a parent of a child with a CCAM/CPAM diagnosis, feel free to comment on here and I can email you and/or add you to the parents of CCAM babies group on facebook.

 

 

 

 

Posted in Baby, CCAM, CPAM, Family, Infant, infant surgery, Life, lobectomy, Medical | Leave a comment

The Story of Sawyer’s Lungs

We are hopefully almost to the end of our CCAM/CPAM journey with Sawyer, so I decided to put all the information in one place for other families that are dealing with this diagnosis (because I was googling like crazy for stories to give me hope) as well as give our families and loved ones an update on what is going on. 

**If you are a parent googling because your baby just got this diagnosis, go find the Facebook group “Parents of CCAM Babies (Rare but Special)” It was recommended to me by our perinatologist…I mostly lurk there, but it has been a huge source of encouragement and information these past few months!**

First of all, CCAM stands for Congenital Cystic Adenomatoid Malformation and CPAM stands for Congenital Pulmonary Airway Malfunction. They both refer to the same thing, but CPAM is the more updated term in the medical literature… But when talking about it with doctors, they tend to recognize it by CCAM more, so I’ll refer to it as that when I talk about it here.

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We were at our bi-weekly ultrasound appointment with our perinatologist when the CCAM was discovered. We were already a high risk pregnancy because of my daughter Lydia’s premature birth and her IGUR diagnosis, but everything at our anatomy scan at 18 weeks as well as other scans had all pointed towards a normal baby boy. Ironically, if it weren’t for Lydia’s unique birth, Sawyer’s CCAM would’ve never been discovered, since he likely wouldn’t have been scanned again after the anatomy scan.

These images were from the followup scan, confirming the diagnosis

 

During the scan, Chris and I were preoccupied because Lydia was set to have surgery on her feet the next day, and we were wading through other family stuff that was causing significant disruption to our day-to-day. When our doctor came in to interpret the scan, he took a seat and explained that he noticed something on that day’s scan, and then took another look at our previous scan (his colleague had scanned us the previous week), and that what he saw on our baby’s lungs concerned him. He explained that he thought it could be CCAM, but wasn’t totally sure at first look. He grabbed the ultrasound wand and showed us the spots of concern. All I remember hearing was cysts on the baby’s lungs, and that usually it has a good prognosis. 

Here is a link that basically describes what CCAM is: CCAM/CPAM Description

He then said that he was surprised we weren’t freaking out… Which of course made me inwardly freak out. I just explained that we were stressing over other things, including Lydia’s surgery the next morning. He said he would be spending his evening looking at our scans and consulting with colleagues. However, he did make us feel better knowing that he has seen this before and that the prognosis is usually good. He wanted us back the following week to measure the growth of the CCAM and from there we would decide next steps.

We went home, focused our energies on our daughter’s surgery, and tried to not go down the Google rabbit hole too much before knowing exactly what it was. 

Lydia’s surgery went fine, and we were back for the next scan the following week. The CCAM had grown, but there was no evidence of hydrops (where the heart and other organ systems are affected due to the growth) so that was good news. Our perinatologist explained that these growths will likely need to be removed at some point… It depended on how the baby handled the birth which would determine when the surgery would occur. He referred us to Dr. Jones at Children’s Hospital and Medical Center for a surgical consult the following month. We continued to have weekly scans, which showed the CCAM growing, but the other organ systems appeared to be functioning normally. 


We met with Dr. Jones mid-October (I was due in December). The reason they have parents meet with the surgeons before the birth is because they want us to be aware of all scenarios, so we can go into it all with eyes wide open, and don’t have to hear information and make major decisions about our baby’s care during a potential emergency situation following his birth. Dr. Jones told us that there could be a range in what could happen…the less desirable outcome would be a baby born without being able to breathe on his own, having to go on ECMO (which would require a transport to Children’s ASAP after birth) as well as surgery as soon as he’s stable. The best case scenario would be that he would be born astmptomatic and we would then try to keep him as healthy as possible to have him have surgery in the summer.

Because of the state of his lungs, we were advised that he would need to be kept from lung infections while his little body was vulnerable (especially from RSV the flu and whooping cough). Thankfully, a lot of our family members understood the need to protect our little guy, and updated their vaccinations. 


The final weeks of the pregnancy were bittersweet–I was anxious about what would happen upon his arrival, and wondering if he would come early like his sister. Once we reached the 34 week mark, our perinatologistcongratulated us and said Sawyer was welcome to come any time… But if he wasn’t out by 39 weeks, he wanted to induce in order to hopefully have a better chance at a less traumatic birth for baby. We said goodbye to the progesterone shots at 36 weeks, and still, no baby. We continued to get scanned on the regular, which showed his CCAM growing at the rate his body was growing… Sometimes the cysts shrink down, but that wasn’t the case with our little guy, unfortunately.

The nurses and doctors all said Sawyer’s face was super adorable on his scans… we agreed ☺️

 

Sawyer decided that he didn’t want to come out on his own, so I was induced on December 11th. He was born that evening, and let out a big cry! After being checked out by the NICU team, we were happy to hear he would be rooming with us on the mother/baby floor. 


I felt like we had cleared a big hurdle, now that he was here and breathing. I was still anxious to hear the results of the X-ray, but we were pleasantly distracted by family who came to visit–Chris and my parents came, Chris’ grandparents (Sawyer’s namesake!) came by, and my brother even drove through the night to come cuddle his new nephew. We were very appreciative of their support. After the typical two day hospital stay, our friends blessed us with meals at home–we are still so thankful for their support through this whole process!


Our pediatrician looked at our x-Ray, as did the doctors at Methodist. They did see the cyst, so the next step was to see a pulmonologist at Children’s. We had our appointment when Sawyer was a little over a month old. The pulmonologist and a PA came to look at him, looked at his x-Ray and listened to his breathing. His lungs still sounded clear of infection, so we were set to follow the surgery in the summer plan. 


Another thing that we were able to do to protect Sawyer (besides keeping him up to date on the regular baby immunizations) was to get him monthly Synagis injections during RSV season. Our pediatrician told us about Synagis, and said that she could petition on our behalf to allow Sawyer to be approved by insurance for Synagis. Some of the factors (his CCAM, having a sister in daycare, his eventual entry into daycare as well as his DOB being during RSV season) were what likely got him approved. It is incredibly expensive, and from what I’ve read, babies way worse off than Sawyer had been denied — so I feel very fortunate that our Doctor advocated on our behalf. 

Synagis is basically a shot to prevent RSV, or if RSV is contracted, the effects of the illness are lessened. Unlike an immunization where a dead or weak virus is introduced, Synagis is an injection of antibodies that would fight off RSV. The beauty of it is that it doesn’t require an immuno response from the baby, it’s just extra fighting power. 

Sawyer received 3 injections to last him through RSV season. They were given at Children’s Hospital during their Synagis Clinic days each month. The shots themselves are painful, but there are no extra side effects since there is no immuno response. They need to get a new shot each month because the effectiveness wears off.

After getting a shot, sometimes nursing would help.


Once Sawyer started at Daycare (he started at 12 weeks), he caught colds… He even had a nasty cough for a while. There really isn’t anything that can be done for viral things in little babies, so we did what we could with a humidifier at night and keeping his head elevated. 

As we got closer to mid May, I was getting more concerned that his viruses would put off his CT scan and subsequent surgery (we had been to the doctor 3 or 4 times for his cough and congestion to make sure he wasn’t developing a lung infection). The CT was scheduled for May 25th, so they had Sawyer try a new antibiotic to kick any potential sinus infection, because the CT would have to be delayed because of the anesthesia. 


The CT scan with contrast went as well as can be expected (Sawyer is 5 months at this point, by the way). We checked into Children’s at 6 am for his 8am CT. We were in the surgical unit, where kiddos are basically waiting to go into surgery. The nurse was kind and explained the procedure, and Sawyer did surprisingly well for not having eaten since 2am.

The guys eventually got a cat nap while waiting for the nurse to come get him. Ironically, while I was walking around the unit trying to calm Sawyer down, I saw Lydia’s ear tube surgeon from the day before (I’m seriously getting tired of having to have procedures done to my kiddos! But I’m also so thankful for modern medicine and that our kids are fighting a far easier battle than many of the families I passed by in those hallways).

Right at 8, the nurse came to get him. The whole thing took about 40 minutes, and even that felt like an eternity. I could hear a baby crying from a distance, and knew it was Sawyer. They finally came to get me to see if I could get him to calm down (only one parent is allowed back in the PACU), and sure enough, the cries did belong to my little guy. I nursed him as a bunch of people were still huddling around him, and that calmed him a little, but he was still pretty irritated and out of sorts. I got up and tried bouncing him a bit and that stopped the scream cries..I just wanted them to let me take him back to the room so I could calm him down on my own. I think one of the nurses sensed my agitation and suggested I just carry him back to the room where Chris was waiting where we could calm him down in the darkness. 


He was a much happier little guy once we had him all to ourselves. They watched his vitals for about 45 minutes, and after that we were free to go. We had an appointment that afternoon at 3 with Dr. Jones again (our surgeon), and since we live so close to the hospital we were able to go home (Chris went into work for a bit and I slept while Sawyer slept…so much for being productive!) 

At our appointment with Dr. Jones, we learned that the mass was made up of many cysts, totaling about the size of a golf ball on his right lung. There was debate in radiology between he mass being on his upper or lower lobe (usually CCAM occurs on he lower lobe), but the somewhat general consensus is that his cysts are on the upper lobe. The surgeon said they will know for sure once they get in there.

 The plan is to do surgery on June 10th. The surgery will last about 3.5 hours. The surgery is going to be a lariscopic lobectomy of his upper right lobe of his lung (the whole affected lobe will be removed). In addition to Dr. Jones, there will be two other surgeons assisting who are familiar with CCAMs. There will be 4 incisions; 3 for the robot “hands” and one for the camera. The hope is to remove it without having to make a larger incision. There will also be a tube/drain used to reinflate his lung and also drain fluid after surgery. The tube will be removed in the days after surgery (the tube is supposedly the most painful part of the whole thing…hopefully there will be minimal complications and he will get it out ASAP). We will be staying in the hospital at least two nights.


It seems so crazy that in a matter of days, we will be handing off our happy and seemingly “healthy” 5 month old to get part of his lung removed. The logical part of me knows it’s best to do this when he’s healthy and when he’s small, so the rest of his lung can move into the space and regain some of that capacity. I know it’s trauma that he hopefully won’t remember in the traditional sense. I know this can save him lung infections and a possible cancer diagnosis later… But I’m still scared.

 Thank you for joining us in praying for our little guy next Friday, June 10th. His surgery starts at 1pm.

I plan to post again once we are on the other side of all this ❤️

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Sawyer: 4 & 5 months old

The 4 month update just didn’t get done, and he is already 5.5 months old… I wanted to at least get a few facts down before they slip away from my sleep-deprived mind. 

Fun travels and events the past two months: We traveled to Worthington for a late Easter celebration, my parents and Andy traveled to our house the beginning of May, celebrated my first Mothers Day as a mom of two.

Not-so-fun stuff from past two months: locked one kid in the car with my cell phone (thank goodness for mild weather and neighbors who are home during the day, so I could borrow their phones) and lots of sickness. So so much sickness. Sawyer and I have been catching cold after cold for the past few months, and Lydia has been suffering from ear infections (she will be getting tubes on Tuesday). Being sick either sick kids has been overwhelming and exhausting with kiddos, to say the least. 

Stats: At his most recent Doctor checkup, he was 15 lb, 9 oz. I think he only got a few oz heavier between months 3 and 4 because he was so sick and not eating a lot. He’s catching up now, and is back up near his growth curve. I don’t recall his length or head circumference, and am too tired to get up and go find it 😉

Sleep wise: he has regressed a bit in the sleep department. When he’s super congested, I have him sleep in the Rock and play (which he doesn’t really like, but at least he can breathe better in there). He wakes up 6-7 times a night, mostly due to congestion. He takes about 4 naps a day still. 

Diapers: size 2 by day, 3 at night

Clothing: 6 mo, but I can still squeeze him into some 3 mo pants or a 3 mo onesie.

Likes: Jumping jumping jumping, gurgling, drooling, sticking his tongue out, babbling to his sister or whoever is giving him attention, patty cake, his bouncer and excersaucer, when mommy fake sneezes, being tickled, bath time, shaking toys/rattles, trying to stand up (he thinks he’s pretty cool when he is standing), waking up early, daycare

Dislikes: being given his paci when he isn’t sleepy, his medicine, being cold after a bath, having anything restricting his legs while he’s nursing 
Oh man, do we ever love this little guy! He is such a sweetie and is always so happy to be awake each morning (much to our chagrin) unless he’s not feeling well. He now is so much more aware of what’s going on, and it’s fun to see him mentally connecting the dots or when he masters a new skill. Lydia still loves her little brother, sometimes excessively, but with Sawyer you can always tell the feelings are mutual. 

Here are some pictures from Sawyer’s adventures the past few months, somewhat out of chronological order:


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Sawyer: 3 months old

  
Sawyerman is well on his way into his 4th month, so I’ve really got to get to catching up with these! 

It feels like Sawyer has turned a corner in these past few weeks. In his two month update, I shared that we were dealing with colic. I had heard of colic before having Sawyer, but with never having the experience of it with Lydia, I was really thrown for a loop. Sawyer cried, scream-cried, for hours. He would have a few good days here and there, but he just didn’t seem like a content baby 80% of the time when he was awake. However, when we got him to sleep, he did okay (would give a long 4 hour stretch during the night). 

Colic is just so heartbreaking because it sounds like they are crying in pain, but you can’t fix it. I think it was bad gas, because he was showing the signs of tummy pain. Some things that we have been trying are infant massage, gas drops, gripe water, essential oils and about a month ago, I went dairy free. 

I don’t know if his little body has just matured or if a combination of the essential oils and my dairy free diet are giving him relief, but we are so thankful that he seems like a happier baby now. He still has a few tough days here and there, but we are sticking to essential oils (Orange and peppermint for his tummy, back and feet during fussy times and diaper changes, and lavender on his feet to relax him before bed). We haven’t had to use gripe water or gas drops in a while, and I will stay dairy free for a bit (I think my lover (cheese) and I could stand to take a break anyway).

Okay, so here is where he’s at at 3 months–13.5 lbs (he was 13 lbs 3oz at his Synagis appointment at the beginning of the month, so that’s my guesstimate). He’s wearing size 2 diapers and 3 month clothing (although his jammies are starting to be much too short for him). He drinks about 2.5 oz a feeding on average from a bottle, but even drank up to 4 oz a few times.

New this month: I went back to work, so my awesome mom was in town to watch him in the weeks leading up to spring break–what a lifesaver! Thanks, mom! She saw him through his colic days and even worked with him to take the bottle. 

 Lots of bouncing on the excersise ball with Sawyerman.  

 Coming home after my first day back at work

Other new things: he is so much more smiley and chatty-loves to coo and he has started to giggle, which is heart melting! He also had his first road trip to MN this month. He also prefers sitting upright and looking around (he’s got great head control now).

Health update: No sickness yet! Woo hoo! He had his second synagis injection on March 3rd, and even when I got really sick about a week after I got back to work, he didn’t catch it. We are waiting to hear back from the hospital if the RSV season will be forecasted to extend into April. If so, he’s approved for one more treatment. We also got our referral from the pulmonologists to set up his CT scan. We are scheduled for the CT scan and second surgical consult on May 25th (my first day off work for the summer!) After that day, we will know exactly what we are working with, and will likely have a surgery date set.

Things Sawyer liked this month: Lydia (he LOVES looking at her and cooing at her), he’s taking more to his paci now (only when he’s ready to sleep), he loves his musical green frog, smothering his face in his soft blanket, splashing in the bath, reading books with grandma, and looking at himself in his penguin mirror.

Dislikes: Getting his arms swaddled, having a dirty diaper, having to wait for milk, being in a parked car or at a red light. 

Overall, this has been a bittersweet month. Adjusting after going back to work was easy on the work side, because I love my job…but tough on the home side. Sawyer went from 2 wake ups a night to 4 or 5, so that is tiring. Having my mom here the first time I got sick was helpful too, because she and Chris tag teamed with the kids. But it feels like life is in fast forward…morning comes early, work day goes quick, come home and play with the kiddos for a few hours, eat dinner put kids to bed, get daycare bags and my pump bag ready for the next day, fall into bed ourselves, repeat. I then try to cram fun stuff in on the weekends because I feel like time with our little ones is already slipping away so fast… But then I overdo it and get sick. Housework? You can probably guess how the house looks right now…but I would rather play babies with Lydia than vaccuum. 
…now I’m rambling. Here are some other cute pictures of Sawyerbot this month:

   
    
    
    
   Thankfully, this only represented a small fraction of the 6 hour drive back.

   
  He is looking more and more like Lydia, which is weird, since I don’t think Sawyer looks too much like me (much more like his handsome daddy)…and Lydia could be my twin if she met 3-year-old me. Gosh I just love them so much, I actually miss them right now (they are both asleep at the moment). I’m such a sap.

    
 Our little stud, clutching his fuzzy blanket. 😍

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Day at the zoo

For Lydia’s 3rd birthday, we gifted her a zoo membership — she loves animals and now understands the concept of the zoo (so Petco doesn’t quite satisfy her anymore). Today we went for the first time as a family of four, and had a lot of fun checking out the aquarium, giraffes, sea lions and bears. We will have to catch the elephants, cats and zebras next time, since we had to get back for nap time (much to Lydia’s chagrin).

   
Someone was excited!

 
Watching the Penguins get fed.

   
 
Walking like a penguin ☺️

   
    
    
    
    
   

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Lydia: Three Years Old

Our sweet Lydia turned 3 years old on February 24th. I cannot believe she’s already three–the time has flown by, but at the same time, I can’t really even remember what it was like not having her in our lives. It was so fun to go through and find photos of her this year–she has grown into such a little lady! This year had lots of ups and downs, and Lydia took it all in stride. Some pictures you will see below are from major events (trip to Okobiji for the Earll family reunion, 4th of July in Pierre, her surgery in September, Thanksgiving, targe arrival of her little brother, and Christmas) and many are from our everyday life. 

Her 3 year doctors appointment is next week, but she was recently weighed at a sick checkup and was 29lbs (still a lightweight, her brother will outweigh her before too long!) and is 3 ft tall. She is wearing 3t, but I still dress her in 2t and they are just slightly short on her. We are working hard at potty training, but she’s not quite ready. She wears size 5 diapers.

Likes: Princesses (Elsa and Anna are her favorites… She named her favorite baby doll Anna, and when we play princesses at home, I have to call her Elsa and she calls me Anna). Each outfit she wears has to have some sort of skirt/dress element to it… She has become very opinionated about her clothes, which makes for some very interesting outfits! She loves crafts (painting, coloring, play doh), Playing outside, swimming and loves baking (so it was awesome that grandma and grandpa got her an easy bake oven for her birthday!) Her favorite shows are Bubble Guppies, Daniel Tiger, Paw Patrol and Shimmer and Shine. She loves all things baby, so Sawyer has a special place in her heart. She’s a total Daddy’s girl, and usually prefers him to me if he’s not at work. He always is the one who puts her to bed at night. She loves the zoo (we got her a zoo membership for her birthday) and her current favorite animal is the zebra. Her favorite foods are pizza, macaroni and cheese, peas and grapes. Her favorite color is pink. 

Dislikes: Having to go to bed or down for a nap (but she did start sleeping through the night in May, and does it fairly consistently 😁😴), going potty at home (she does great at school–silly girl), and leaving grandma and grandpas house. She also decided she hates showers and prefers a bath (but hates washing the shampoo out of her hair). She hates when Sawyer cries, especially next to her in the car… So she will then cry or yell to drown him out #heavenhelpus

We celebrated her birthday at home with our immediate families. Lydia had been looking forward to her party for months and would go over the guest list almost every day. Nama Sheryl and Papa Greg, Nama Jean and Papa Rod, uncle Andy, Uncle Derek, Aunt Carolynn, cousins Audrey and Hunter all came to celebrate. Her requests were a pink cake and pizza. Here are a few party pics below:

   
   
And here are some pics from the past year, starting just after she turned two, up through the present:

   
    
    
    
    
    
  

    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    
    

    
    
    
   

  

  

  

  

  

  

 We love you, Lydia! It is a blessing to watch you grow. Happy birthday!

   

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Sawyer: 2 months old

  
Already getting behind on my monthly update! I am in a sleep deprived fog at the moment, but this is only just a season 🙂 

Our little man weighed in at 12 lbs, 3 oz at his 2 month check up (52nd percentile), he’s 23 inches long (43rd percentile) and has a head circumference of 39cm (23rd percentile). He is following his growth curve, and the doctor said that everything looks perfect. You would never know he was a CCAM baby by looking at him. ☺️👍 He did great with his immunizations, and slept hard the evening after (didn’t seem to be in pain or really bothered by them–very different than Lyds). He’s in size one diapers, but we recently switched him over to twos already. He’s in 3 month clothes, but we can still get him into some 0-3 month onesies and pants as well.

  
Medical Update: We met with the pulmonologists at Children’s in order for them to look at him, his x-rays, and to get a referral for the CT scan. They said his lungs sound great, and could see the CCAM on the x-ray. They basically confirmed what we already knew and answered questions we had. The biggest thing they stressed is that since the cyst is made of foreign/”confused” cells, it is important that it doesn’t get infected (by him contracting a virus like RSV) and that we remove it so that it doesn’t turn malignant. 

   
We waited a bit between doctors, so Daddy and Sawyer played.   

After crying hard during the second doctor’s consultation, he falls asleep just in time for us to head out and put him in his carseat 😉😁

We were back at Children’s again for Sawyer’s first Synagis treatment. Synagis is a shot that isn’t a vaccine; instead, they literally inject Sawyer with RSV antibodies so that if he does come in contact with it, he will either be able to fight it completely, or at least not get a severe case (of course with anything, there are no guarantees). It is incredibly expensive, so the insurance company is picky with who they approve it for. After a lengthy process, Sawyer was approved for 3 rounds. He did great with the shot, and cried less hard than he does at home. What a little trooper!

  
(He wasn’t too amused or pleased with the shot, though!)

Likes this month: He LOVES his big sister, he smiles and coos at her without her even trying. Adults can get some coos and smiles if we talk to him and have little conversations. He also loves his fuzzy blanket up almost covering his face, bouncing on the excersise ball, being carried upright or on his tummy, and he loves getting his diaper changed. He enjoys baths, but getting out is pretty tragic.

Dislikes: getting out of the bath is tragic for him, so much so that it takes a good 30 mins to an hour to get him calmed down again. Needless to say, we use baths sparingly. He has his tummy issues still, which just breaks my heart to see. He also hates getting swaddled, but once he calms down and goes to sleep, he wakes up far less. During the time leading up to him turning 2 months, he consistently woke up twice a night. He is also not a fan of the car seat. 

Honestly, this month was short bursts of complete sweetness, where he is all coos and smiles, but unfortunately much of his wake time he is struggling, crying, generally upset. It’s very exhausting, and I’ll talk more in his 3 month update about my return to work and how that has affected everything, as well as the things we are doing to combat the colic.

Here are some more cutie pictures from month two:

   
    
  

Chris and I brought an almost 3 year old and a two month old to Le Peeps and lived to tell the tale 🙂
    
    
    
    

Oh Sawyerbean, we love you so 🙂

 

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