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.
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.
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.
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