Nora’s Story

Nora Joy

Born: April 2015

Life Verse: Be joyful in hope, patient in affliction, faithful in prayer. – Romans 12:12

Birth Defect: Bilateral Cleft Lip and Palate

Birth Story: When I got pregnant with our second baby, I was of course a little nervous that this baby would have the same defect as Stella. I worked with my OBGYN to schedule an anatomy ultrasound a few works earlier at 16 weeks pregnant. At that early ultrasound we learned that baby girl #2 looked to have a cleft lip. They waited for our 20 week level 2 ultrasound to confirm that Nora would be born with a bilateral cleft lip and probable palate.

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Meeting Nora for the first time.

Once again we transferred over to Minnesota Perinatal Professionals for care. They worked with us during my pregnancy to monitor Nora’s development. I had a few extra ultrasounds but for the most part this was a fairly “normal” pregnancy. We did our research on cleft care post delivery and met with cleft teams at both Gillette Children’s Hospital and Minnesota Children’s Hospital. After a lot of thought and prayer we decided to try Gillette.

At 39 weeks, I went in for an early morning scheduled C-section and 4 minutes later Nora Joy was born. The cleaned her up and placed her on my chest (something we never got to experience with Stella) I took one look at her was completely in love. She was beautiful. Once again they took her to the NICU and I sat in recovery with my Mom waiting to go see my and hold my little girl.

The First Year: Nora spent her first 36 hours after birth in the Special Care Unit of Minnesota Children’s Hospital learning to eat with a specialty feeder called a Haberman Bottle. She picked up eating very quickly and food has been important to Nora ever since. She and I were both discharged the following night and excitedly went home 85 days sooner than we did with Stella.

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Nora before the retainer and after 17 weeks with retainer.

At 1 week old we brought Nora to Gillette Children’s to meet her doctor and to be fitted with an OrthoCleft® retainer, which is a presurgical orthopedic appliance that helps to improve the effects of surgery. The retainer brings gum segments together, reducing the gap in the mouth, stretching the lip muscles, and giving the nose a more even shape. We had weekly doctor appointments with the Ortho team, each week they would check her progress, adjust and tighten the retainer (similar to braces) and teach us how to tape her face which would help with stretching her lip and nose.

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Nora 1 week after her lip repair.

When Nora was four and half months old they she had her lip repair and ear tubes placed (since her palate was wide open, the ear tubes helped with draining any liquid that could easily get to her middle ear from eating, etc.). The surgery only took about 45 minutes and was a success. However Nora really struggled with pain and eating post repair. We were able to go home after 24 hours but unfortunately after another 24 hours at home we went back to the hospital for pain management and dehydration. Once again we stayed in the hospital for about 36 hours and then nervously went home. Thankfully she turned the corner quickly and began eating again. At 1 week post-op she was smiling at the MN State Fair with Mom, Grandma and big sister. 🙂

Nora’s second surgery that year was her palate repair, which she had at 10 months old. This was a much bigger surgery and there was some concern about whether they would be able to close it in one shot or would need to do two surgeries to fully repair it. Thankfully God gift us a great surgeon and he was able to close it in one surgery. Once again we stayed in the hospital for about 36 for pain management and to work on eating. This time we took our time going home (Mama did NOT want a repeat visit again.)

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Nora before her palate repair

Nora struggled with sleeping when we got home – mostly because she couldn’t have herNUK anymore and because we had to tie her arms down so she wouldn’t put her hands in her mouth which would break open her stitches. However this made for a long couple of weeks and some sleep training for all of us. However at one month post-op she was back to normal and starting to really enjoy solid foods for the first time.

Today: Nora is 2 and ½ years old and doing great. Her speech is slowly coming together but we still have times when we don’t understand what she is telling us. Luckily her big sister is a great translator for us. We are currently deciding if we want to switch cleft care teams. Once we make this decision we expect to start speech therapy and they will evaluate if she will need her palate lengthened to help assist in her speech development.

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We know that Nora will have many more surgeries before she is done. They will do a couple of revision surgeries to her nose and lip (as she grows, her scars will stretch), she will also need a bone graft to complete her gum line and probably a couple of dental surgeries as we aren’t sure what adult teeth she actually has. Her final surgery will be a Rhinoplasty which she will have at around 17/18 years old.

We always talk about how Stella was a sprint and Nora is a marathon. I tend worry a lot more about Nora and the journey she will have, but for now she is a happy, silly, loving little girl. She is definitely the baby of the family and always trying to keep up with her big sister. She will start Preschool next fall and is already asking about it. Nora’s middle name is Joy and that is exactly what she has brought to our family – we look forward to seeing what God has in store for her. 🙂