Tenotomy and Dedication

Friday was Icem's tenotomy appointment. Thank you for the texts and well wishes! It is so nice to have so much support! We once again took off his casts and gave him a bath. He is starting to do so well during bath time! Then we gave hime Tylenol before heading to Seattle. His skin under his casts is bad but the rest of his body is responding so well to the lotion.

This week we thought to measure him before the casts went on. He is now 23 inches. The nurse Sue came in and put a numbing gel on the back of his ankles and covered them with saran wrap and elastic wrap. I believe we were one among many there for a tenotomy that day as Dr. Mosca had missed last Friday. I heard quite a few upset babies. The procedure itself was very quick. He had a very small scalpel he used to slice the tendon. We asked how the achilles tendon would regenerate. He mentioned that the tendon sheath was still there which would help the tendon reconnect, but long enough for dorsiflexion of the foot. After making the cut he used a syringe to numb/medicate the area. Then he applied gauze and elastic wrap and had me hold pressure on the ankle. Icem was not a happy camper. The same steps were repeated on the other ankle. We were able to comfort Icem while the area was allowed to clot.

After about 20 minutes Dr. Mosca came back with the casting specialist and applied his casts. His feet are now at the angle they will be in his boots and bar, they are also flexed. It is so amazing how fast this went and how well he is doing through it all.

Don't worry, he was strapped tight on the ride.

We gave him more Tylenol after the appointment and twice more that night. He had a pretty rough night, I am sure some was due to his discomfort.

His smile melts my heart!

He loves his giraffe!

Sunday we got up early and headed to church for Icem's dedication. It went so well! Paul and Britta, the pastors at our wedding, led the dedication. It was so special. I love the idea of a dedication instead of a baptism. This allows him to make that decision for himself later. He slept through it except for the part where Britta held him up for the congregation to see. He made his "little old man" face for everyone, opening his eyes to check everything out. It was so adorable. We had quite the crowd to watch! My parents, Garret's parents, Trey, Kyler, Nana, Uncle Colin, Aunt Kathy, Uncle Brian, Aunt Merri, Auntie Barb, Steve, Kim, Jesse, Ashleigh, Camden, Branton, Kathleen, Short, Leann, and Chris. I LOVE MY FAMILY! It has been such a blessing to be home. Everyone is always so supportive of each other, it is so nice to have that for Icem. Lindsey, Whitney, and Kenzi showed up at the party to support us too.

Fifth Cast and UW Apointment

Yesterday was Icem’s Fifth casting appt. His feet are looking so great! I can’t believe how fast this first phase has gone. His poor skin is so dry under the casts. I can’t wait to put lotion on him. They don’t want us to put it on between casts because it can cause them to slip and need to be redone. He liked his bath this week as well.

Look at those straight feet!!

Someone was smiling today! 

Icem weighed 11 lbs 2 oz at the appt, which means he put on 17 oz in one week! You can really see it in his face. The doctor was happy once again, Icem wasn’t so much. He was pretty fussy during casting.  We were given a Tylenol prescription for him to take before and after the tenotomy on Friday. 

After our appointment Icem got to meet his Great-Grandma Dona.  

Later we watched the Seahawks with the Reece family. Go Hawks!

Today Garret, Icem, and I met with Paul and Britta, the pastors doing Icem's dedication this weekend. It was great to catch up with them. They officiated our wedding and now get to come full circle with our family. 

Later, Pops and I drove Icem down to UW Medical to see Dr. Sybert. She has dealt with Ichthyosis for a very long time. We have been using the same lotion that my brothers use on their skin with great success. He has baby skin again on his torso and arms. His head is almost done shedding too. She said his skin looks great with what we are doing. It isn't necessary to do the genetic test, we can be pretty sure he has it and keep treating it with the Amlactin lotion. She did say that if we needed further assistance they could get us into the Seattle Children's Dermatology clinic. Overall, I felt good about what we were doing for Icem, it will just be a part of our routine. 

 After our appointment we ate at Sakuras to celebrate Nana, Icem's other Great-grandma. Icem smiled quite a few times, which was so fun! 

Dad needed a bottle...

We are raising a genius! He held his own bottle ;) Look Mom, no hands!

Another update Friday, wish us luck with the tenotomy!

Fourth Cast

Yesterday was our fourth casting appointment. We tried to meet up with a family I had met on the Facebook clubfoot group but it didn't work out. Their little boy turns four this week and he is done with his boots and bar. It has been nice to see their journey end positively with our doctor and to see that this is just one phase in our boy's life, it does not define him. This will end one day, so until then we will work through the process with a positive attitude. 

Once again we unwrapped Icem's casts. His legs are extremely dry and the top layer is cracking. We are thinking that he most likely has a skin disorder (I use this term lightly as it is not serious, just a nuisance) that runs in my family. It is called x-linked ichthyosis and I am a carrier. I had the lab taken when I was pregnant so I would know if my children may have it. Females are carriers and males show the disorder. Basically it means that males with the disorder don't shed their skin the same way we do and need a certain type of lotion to help this process. Icem started with normal newborn shedding but after our doctor looked at his legs before casting this week, he said this degree is not normal and assumes he has the disorder. We are going to Seattle Children's dermatology department doesn't have an opening while we are down here, so we will try to get him tested for sure and find a dermatologist to ask about current lotions and treatments to make sure we are on top of it. I know it isn't a big deal, and once again there are much worse things. I just can't help but feel bad passing yet another thing onto my son. This is something he will deal with his whole life. While not serious, it will be a constant annoyance. I am just hoping it doesn't make boots and bar worse for his feet. I also can't wait to get his casts off so I can start applying lotion to his poor legs. For now they must stay dry through this phase. 

We always joke in our family about the strange things that plague us. Clubfoot is just one more strange occurrence. I am so proud of how well Icem is doing so far!

Below is a picture of his feet after taking off this week's casts. They have turned so much! His right one is tighter and likes to curl back to the inside, but they have made so much progress.

I love the time I get with his free feet and legs each week. I get to kiss them all over and hold him the way he loves to be held, with his legs tucked up under him. 

This appointment required quite a bit of stretching to Icem's feet which he didn't like. We used sugar drops along with his bottle to help calm him. His left foot is where it needs to be after this cast, but the right is still a little tight. Dr. Mosca gave us good news at the appointment. Only one more cast before his tenotomy. The nurse is going to call us this week to schedule it. It will be one of the next two Fridays. We are so excited as this is one step further in his journey and puts us back to Alaska in January!

In the picture above are his fourth set of casts. I can't believe how much his feet are turned out this time. We used Tylenol this week as he seemed more uncomfortable than usual. But today he is a happy baby :) We got in some tummy time today and his casts, then boots and bar are going to help him roll over eventually I think, they seem to give him momentum.

Thanks again for following our wild ride!

3rd Casts

This process seems to be flying by! We headed down for our third casts today. Below is a picture of how his feet looked after taking off his second casts. A lot of progress again. I love taking them off and kissing his feet, I can't wait until they are off for good! 



Weekly bath:


Dr. Mosca was still pleased with his progress this week and said it is still looking like five casts before the tenotomy procedure. This would mean going home with his brace the first full week of January. Below is a picture of his third casts. 



On the way home Garret had some business in Maltby so we stopped at the Maltby Cafe. Icem wanted a treat so we got the biggest cinnamon roll I have ever seen! We highly recommend the food, it was all delicious!


Thanks again for following our journey. It has been so positive so far, we can't wait to see what the future holds for our little guy!

Second Casts

Garret flew into Washington yesterday. It is so good to have him home! Before heading to Seattle, we  were able to take Icem's casts off and give him a bath. 



The difference in his feet was cool to see.

Last week:



After one cast:


We drove down to Seattle Children's together today, Garret wearing his Coug gear into "enemy territory" as he calls it. Once again, surrounded by sick kiddos checking in, we felt so blessed that this was the only thing our little guy was dealing with. 

Before his doctor came in we were able to get his weight. 8 lbs, 11 oz. This little guy is gaining each week which is so great to see. Dr. Mosca came in and looked at his feet, testing their flexibility. He told us he was very happy with how they had responded. He thought that instead of the 8-10 casts he quoted us last time, that Icem may only need 5 before his tenotomy. This could change, but for now it was great news! 

Once again we fed him while the casts were applied and he was a trooper. He even fell asleep at the end. 

2nd Casts:


After getting his casts we were able to catch up with Garret's friend Eliza  from Darrington who is completing a residency at UW Medicine, and her son Cohen. It was so nice to see a friendly face. They even brought Icem a book. 



Thank you to everyone following our family's journey through this clubfoot treatment process. We appreciate your love and support!

Casting Begins!

Mom and I drove Icem down to Seattle Children’s today. We were early so I nursed him in the car and we headed to check in. The check-in process was quick, and they called us back on time. Once back in the room Icem was weighed and measured. He was up to 8 lbs 5 oz! Then, Dr. Mosca, the orthopedic specialist came back with his PA and a visiting doctor from the UK. After looking at his feet he let us know that Icem’s were “severe” which meant that instead of 4-6 weeks of casting, they could take 8-10 weeks. We are hoping and praying for less if possible!  We had brought a bottle to feed Icem after casting, but upon the doctor’s request started to feed him in the room.

They ended up casting him while he drank the bottle. Dr. Mosca and the PA stretched his feet for about a minute, then held them in place while a nurse wrapped the casts. They wrapped the bottom of the casts first, holding the feet in place while they dried. Then they wrapped the tops of each cast. Icem finished his bottle just as they were finishing. We changed him and held him, then headed home. He did well on the drive home, only crying twice. Once we got home we changed his first casted poopy diaper (he hasn’t been very regular so we were worried about the casts giving him issues, but apparently not!) We also quickly discovered the usefulness of the baby leggings. They protect the casts from poop and pee. Also, they are helpful in creating a soft surface for those of us holding him.

Overall our first experience was positive. We are hoping for a shorter casting time than predicted. There weren’t any tears from Icem or myself during the casting process which was more than I could hope for. We were very thankful to have Gigi there to help! We talked to dad soon after. Now to see how he does this first week with casts. Dad will be back in town on Sunday and will get to go to the second appointment with us. We get to unwrap the casts before heading down. The plan is to remove them and give him a bath. Wish us luck!

Welcome Icem Magnus!

This is the quick version of Icem’s birth story:

After not the easiest pregnancy and a rough last two weeks, Garret and I went into our 36 week appt. My blood pressure was high after an entire pregnancy of it being perfect. After further testing and monitoring I was diagnosed with preeclampsia and we were told we were going to have a baby that day! Due to Icem still being breech, we were prepped for a C-section. Garret was originally supposed to be out of town. I am so grateful that he was there, I couldn’t even imagine going through that without him! They started my treatment for preeclampsia, and prepped me for surgery. Garret made the necessary phone calls to our parents and to friends who helped get the hospital bag delivered and took care of our dogs. (Thank you Danielle and Lucas!). Our appointment was at 3:15 PM, and Icem was delivered at 6:59 PM on October 23rd! They lowered the drape to let us see him delivered and gave me skin-to-skin after drying him off. It  was such an amazing experience! Although small by our families' standards, he was large for 36 weeks, weighing in at 7 lbs 14 oz and 20 ¾ inches long.

It was a rough first couple days as I finished the Magnesium drip for preeclampsia. I was pretty sick and bedridden. However, I had amazing doctors and nurses and was able to heal a little more each day I was in the hospital. My mom flew in the next day, Dad the day after that. We were admitted on Tuesday and discharged on Saturday. It felt so good to get home! My parents left the following Tuesday, and Garret’s mom flew in the same day. We were so lucky to have this support at the beginning!

With Icem coming 4 weeks early, we needed to call Seattle Children’s and move up his appointments. We were able to move them up to start November 12th (just under 3 weeks old). Ideally you would start casting within two weeks, but our doctor assured us that this shouldn’t make a difference in his treatment. We made plans for me and Icem to fly down November 5th (we flew first class and he slept the whole time!). Garret would follow on November 18th after finishing up some work in Alaska.

We had a beautiful baby boy and loved his feet! We faced a lot those first few days and knew we could take on the next phase.

Seattle Children's Consultation

Monday, Sept 17th, the day after my wonderful Washington baby shower, my parents and I headed to Seattle Children’s for an in-utero consultation with the clubfoot specialist, Dr. Mosca. The appointment went well. My main burning questions were answered. Mainly I wanted to be sure that only Dr. Mosca would perform the tenotomy (where they clip the achilles tendon so that the foot can move up and the tendon can regrow to the right length).  He assured me that this was the case. This doctor also only treats clubfoot patients on Monday, so I wanted to be sure he would be working 12/24 and 12/31. He said he would be. I guess Icem will be getting casts on Christmas Eve and New Year’s Eve (happy anniversary to us!).

Our conversation about treatment echoed what my research had told me. I was relieved that they let us schedule our first five appointments on the way out. Everyone was very helpful and welcoming. The biggest thing I walked away with was how lucky we were. At Children’s you are surrounded by children and their families who are fighting larger battles than you. It makes you very thankful for your situation. All that was left was to have this baby and face our journey.

Confirmation Ultrasound

Monday, July 23rd was the day of our follow-up ultrasound. The past two weeks had been filled with research, joining online groups, and calling Seattle Children’s. I found out that if we were diagnosed with clubfoot that I could come for an in-utero consultation and could schedule Icem’s first appointments. I had heard the main doctor was hard to get into.

I was anxious all day. Hoping Icem was in a better position, praying his heart and brain were healthy, and wondering about his feet. Garret and I headed to the hospital after my morning at summer school. Walking in, I had a little anxiety about the day I would be walking in there to give birth. We checked in at the imaging department. The ultrasound tech brought us back. She was very kind and seemed adept. She quickly took measurements. We were able to see his brain, she talked us through what she was looking for, I took this as a good sign that she must be seeing what she wanted. She then measured the head, still measuring a week ahead, go figure! Howell heads are large! Next, she looked at the heart. It looked like she found the chambers she was looking for, or at least I hoped. Finally she looked at the feet. Afterward Garret and I agreed that in our unprofessional opinion, both feet looked to be turned inward. At the end of the appointment she tried to get some 3-D pictures. Unfortunately I have an anterior placenta, which made it hard to get good pictures. Also, the boy’s hands are always by his face. Once again, no good pictures. I definitely felt more at ease knowing she got the measurements she needed. Now it was time to wait for Dr. Newbury to get the images and call.

Later that night Dr. Newbury did indeed call. He is the best, I believe he called around 8:30 pm! I was grateful Garret and I were with each other to receive it. Thankfully he led with the news that his heart, brain, and profile measurements looked great. However, he said our baby looks to have bilateral clubfoot. Of course official diagnosis would be at birth, when we could really take a look at them. He was very helpful in explaining things and answering any questions we had. He said he thought we were being very level headed. I secretly laughed at this inside, if only he had seen me after my appointment two weeks ago! He also said we could move ahead with booking his first appointments and that we could induce around the due date to make sure we could make it to Seattle in time. Dr. Newbury agreed with the idea of heading to an in-utero consultation before birth. He said he had only seen one other case of clubfoot, during his residency. Icem was his first in Juneau. At times in this process I felt like we must have been chosen for a reason.

Now that we had a confirmation, we were able to move forward with a plan. The next day I called and scheduled my consultation for the Monday after my Washington bridal shower. They told me we would schedule his casting appointments after that. We decided we would live with my parents during the casting phase. I also lined up one of my previous softball players, who was in town going to school at UAS to watch our dogs and house while we were gone.

Where our Journey Began

On Monday, July 9th Garret and I headed into my OB’s office for our anatomy scan at 21 weeks. I was nervous but excited, hoping for those cute 3D pictures that are expected from this appointment as well as an “all clear” from the doctor saying everything looked healthy and great. The scan lasted about an hour. As usual, Icem was in a breech position and happened to have his legs stretched out with his head folded down on his torso. This made it hard for the tech to get her measurements. We did get his weight, 15 oz. That and his head size were measuring about a week ahead.

When Dr. Newbury came in to talk to us I had a lot of questions including my terrible carpal tunnel, swollen feet, induction questions, and more. After getting my questions answered I apologized as I realized I hadn’t let him talk about the ultrasound. That’s when he responded something along the lines of not really wanting to discuss the ultrasound. My stomach dropped… He informed us that he didn’t get a good view of the internal brain structures, the four heart chambers, or a profile view of the baby. At the time I attributed it to positioning but worried about it later. It was the next thing he said that left my ears ringing. He said that Icem had a possibility of a left club foot. He ordered an ultrasound for two weeks out, (the ultrasound tech would be out so he sent us to the hospital) and if he needed more views he said he may send us to Anchorage or Seattle to a specialist. (We live in Juneau and are very limited in our specialty treatment facilities).

Garret and I just nodded through the whole thing, both of us wondering what this meant, but neither of us daring to ask more. I numbly made my next appt and tried not to cry as I walked back through the office. As soon as we got out the door I broke into tears. My baby may have something wrong with his foot or feet? At this point I had never heard of clubfoot. It wasn’t even on my radar as something to worry about going into the appointment. My mind was reeling with what this could mean. Would he be able to be an active boy? Did I do something to cause it? Was it treatable? After Garret consoled me, reminding me it was only a possibility at this point, I headed to my scheduled massage appointment at the birth center next door. While I waited for my appt, my research began. What was clubfoot, was it treatable, what caused it, what did treatment entail, what did it look like? All the while I was upset. I am a planner, in my mind I could see my plans of those first few months with my precious baby shattering. My mom finally called back, and I broke down again. She echoed Garret, telling me that it was only a possibility at this point and that I needed to stay calm for him, myself, and the baby. All I could think about were the previous ultrasounds I had where I saw my baby’s feet turned inward and thought nothing of it. After all, how did I know what a baby in utero was supposed to look like? I just thought they were squished and things didn’t necessarily mirror outside of the womb.

Let's just say that wasn't the most relaxing massage. Afterward I had to call the imaging department at the hospital back as they hadn't answered earlier. They were about to close and asked if it was urgent…..um YES! They wanted me to come the next day, which I would have jumped on, but my Dr. specifically said two weeks. I suppose this was to let the baby change position and develop. I was scheduled for exactly two weeks away and headed toward the grocery store for dinner ingredients.

I continued my research that night. I was still upset for my hurt, disappointment, fear of the unknown, pain and discomfort my baby boy may have to endure, knowing that things would be more difficult than I had imagined. Sidebar to all of my negative thoughts. OF COURSE I knew that this could be worse, and I did find out that it was treatable. I was also still worried about the measurements the doctor couldn’t get and at this point I was hoping my baby and little family would only be dealing with clubfoot.

So far in my research I had found that some famous athletes had been born with clubfeet including Mia Hamm and Troy Aikman. That was one relief, my baby boy could have a normal active, even athletic life after treatment! Before finding this we had feared him not walking or needing some major intervention. I also found a ton of resources including facebook groups, blogs, and a store dedicated to special items my son may need. The general understanding I had of treatment at this point was:

Ponseti Method:

*Casting from the toes to the hip on the affected foot/feet once a week for 4 - 8 weeks starting the week after birth. This is to slowly turn the foot to the correct angle.

*Possible tenotomy (cutting of the achilles tendon to allow for proper length and regrowth) followed by a three-week cast.

*A bracing technique called ‘boots and bar’. The baby would wear shoes/boots with three buckles on them angled outward attached to a metal bar. This goes on for 23 hours a day for about 3 months.

*Decrease of bracing to nighttime (12 hours) until 4 - 5 years old.

Unfortunately we live in a town without a clubfoot/Ponseti Method specialist. We also cannot drive out of Juneau. Fortunately, our family lives in driving distance of Seattle Children’s. I researched the orthopedic department and was happy with what I saw. This however brought up a whole host of anxiety...would we have to fly 8 times in his first 8 weeks? Would we need to live with my family for 8 weeks? My plans of bringing baby home, cuddling him cast-free in the home and nursery we prepared for him went out the window.

The blogs I read were positive, I saw happy families and babies, taking on this hurdle one appointment at a time. The progress of their babies’ feet was amazing, just after two casts they start to straighten out. Seeing pictures and videos of them walking brought me to tears again. Seeing their custom bar covers and cast leg warmers made me smile. These all gave me consolation.

Yes we were lucky that this would be our son’s journey compared to many worse deformities/illnesses. Garret had done his own research and was relieved by the treatable diagnosis. I was too, but couldn’t help but be overwhelmed by the hard road we may have to travel. I was pretty mopey that night. By the end of the night we had a chat and moved forward as a team, me turning the page to positiveness, and he understanding my need to worry and plan.

The next day I continued my blog reading and research. I talked to mom and Garret and they allowed me to start planning (even though they were still waiting on the next ultrasound, I knew in my heart I was going to have a clubfoot baby. The only question in my mind was unilateral or bilateral, and praying that it was only clubfoot. I started praying hard.  We talked about the idea of moving home for about 6 weeks starting the week after Icem was born. The whole family was planning on coming to Juneau for the baby and Thanksgiving, Garret’s parents included. If Icem was diagnosed, my plan was to fly home a week or two after Icem was born to start the casting process. I am so thankful for my husband. In my moment of struggle he was a rock. He let me lay out plans even if he thought it was unnecessary at this point. This is how I function. I was still sad thinking of the long journey ahead of us but started to feel comforted by the fact that we would be surrounded by family in this time of struggle. Living with my parents and having Carol and Ernie there to enjoy his first months would be a blessing. I started to accept the idea of not coming home as planned and having to pack up our life a week after giving birth, taking what we needed back to Washington with us. The dogs were another question mark for me. Our two beautiful, sometimes mischievous dogs that I wanted to bond with baby and didn’t want to saddle someone with. I knew that planning had to come later. I also thought about the need for a car. Garret suggested ferrying down. This made me nervous with a newborn, but having our car filled with baby gear made me happy. I knew we would work it out somehow.

All we could do now was think positively wait for whatever our next ultrasound held for us.