I'm sure many of you are anxious to hear how our trip and follow up appointment went. Emily, Asher, and I took off Monday morning and drove as far as Lincoln, NE. Of course the goodbyes that morning were very tough. Asher traveled about as well as you'd expect for an almost 2 year old but was like a wild animal by the time we got to the hotel. He jumped on beds and couches until oh I'd say close to 11:00. On a positive note, this meant he slept most of the second leg of the trip. Emily and I missed the Exit to North Platte where we wanted to eat lunch so we ended up stopping in Ogallala NE. I thought ND was behind the times. We saw more men in overalls at the Pizza Hut buffet than you'd see on a Sunday afternoon at Fleetfarm. Anyway, we made it. We spent Wednesday checking out some local shops in Denver and met a mutual friend for dinner.
Thursday morning we headed to the Children's Hospital for Kambry's follow up appointment. The day started out with an echocardiogram to look at her heart which still looks structurally perfect. Woohoo! This was followed by another MRI and ultrasound. Again I was blown away by the kindness of every nurse, doctor, and employee of the hospital. At the end of the day we had a family meeting which all of her doctors attend as well as the head CDH surgeon.. We were able to conference call with Lon so he could hear all of the results. Unfortunately we are part of the 15% of CDH babies who get worse at their follow up. More of Kambry's bowels have moved up into her chest giving her lungs even less room to develop. Most of her measurements got worse but they told us it was only incremental so they kept her score at 8 out of 10. This equates to an 80% survival rate. They did reiterate that so much can't be measured or known until after she is born. They kept my induction date as July 14. They did make it sound like there might be a greater chance of needing the ECMO and thought surgery might not be until 3 weeks now. She needs to be totally stable before surgery. They also estimate she might be in the NICU for 9-12 weeks as opposed to the previously estimated 8 weeks. Of course that was not news I wanted to hear. Lon was quick to remind me that she is in the best hands and they wouldn't give her an 8 if they didn't feel like she had that chance. One of her doctors said that we are part of the CDH team now. When there is bad news, we will know, and when there is good news we will all celebrate together. Kambry's size looks great. She is weighing approximately 5 lbs 13 oz. and starting to take up the space previously occupied by my right lower rib :) After the appointment I drove Emily to the airport and said another goodbye. I'm so glad she took the time to travel with us and be my support at the meeting. Emily, you are amazing! Needless to say it was a tough, emotionally draining day yesterday but everyone's positive texts, messages, and prayers were a huge help!
Until July 14 I will continue with twice weekly Non-stress tests and weekly OB visits. My amniotic fluid levels are much higher than normal which can cause pre-term labor but so far I haven't dilated at all. Let's hope she waits until induction day! Lon will be joining us July 12th and we couldn't be more anxious for that! Thank goodness for FaceTime!
Sorry this got lengthy but it was a lot of information to share. Now Asher and I are going to enjoy a little CO sunshine! :)
Love to you all,