Monday, April 9, 2012

Spring and our growing girls

Spring has sprung, a little earlier this year. It has been so nice and sunny out and the flowers are blooming months early. It has been so nice to be able to enjoy this beautiful weather as a family. This time last year we were planning for Lily's upcoming surgeries, counting the hours since the last feeding and the minutes until the next one. We were waking to multiple alarms throughout the night and barely able to get outside to enjoy the sun before needing to return indoors for the next round of medication or the next feeding.

This has brought to light just how much our lives have changed in just one short year. It is amazing how laid back we are able to be, now that Lily is heart-healthy and unmedicated. We are able to travel for a weekend without a trunk full of feeding supplies, monitors, 10x as many clothes for the multiple changes Lily needed from her severe reflux. Brynlee has been in preschool and gymnastics since fall and loves it! Our doctors appointments have spread out to once a month or so, instead of once a week. The girls have been able to enjoy the the lemons from my iced tea and playing in the yard. I have found some great summer activities on pinterest to try out this summer. We are planning a water sensory day, planting a garden (one of us and one for the girls) and picnics outside.

Brynlee is four now and smart as a whip, there is no getting anything past her! She is very independent and helpful with her sister. She loves being able to play with Lily more and share popsicles and do things sisters should be doing. Her gymnastics and preschool are going very well and she has made lots of friends. It has benefitted her a ton being able to be around kids her age again. She is writing pretty well and has started sounding out words on her own. Sadly, she will be in preschool one more year, since her birthday isn't within the Kindergarten cutoff in our district. I think she is ready, but I don't mind keeping my big girl home one more year.

Lily is doing wonderfully. She just turned 15 months old now. She has beautiful thick, curly, red hair. She is walking and talking and loves playing with our dog, Zoe. She has been released from all therapy and her cardiologist has cleared her for yearly checkups from here on out. She is expected to last around 10 years until her next surgical procedure. She will need her pulmonary valve replaced at that time and throughout her life. We are so thankful that is all we have to worry about in her future. She has no limitations at this point and has been very healthy. She is completely free of medications and is now only seeing her pediatrician for her regular checkups. She has been meeting her milestones and is finally gaining weight. She is just over 18lbs now. She is eating very well, on her own. It has been about a month since her last tube feeding. We see the pediatrician tomorrow, let's pray for a weight gain! Once she is able to feed herself and grow sufficiently on her own for 3 months, she will get her G-tube removed. That will be one happy day!!

Happy Spring, to all of you! Sending prayers to all the heart families out there <3


  1. They are so beautiful! <3 I'm loving the sisters dynamic around here lately too!

  2. Oh carolyn.That is all such great news to hear.It is so amaxing that Lilly is only seeing card once a year.Wow she is doing so well.Praying that she does well so she can give up the g-tube.

  3. They are so adorable :)

    Its wonderful how great Lily is doing--I hope she continues to improve and you can have minimal worries until her next procedure :)