Kimberly D.
Maine
8 Years Old
Diagnosis: L-TGA (Levo-Transposition of the Great Arteries)
Theme - Lilo & Stitch, Hawaiian Flowers
Favorite Colors: Teal, Aquamarine, Light Blues
Due Date: February 15, 2025
Kimberly's Journey
Meet Kimberly! She is eight years old, and a dedicated Brownie Girl Scout who loves art and anything to do with crafting with her troop or finding a new adventure. She also enjoys playing Little League softball for the first time this year. Kim has a very rare congenital heart defect that was diagnosed at 18 weeks gestation. This defect accounts for approximately 0.5% of all congenital heart defects; so, "rare" is an understatement.
She was high risk and when it was discussed with her care team prior to labor, we did not know if she could breathe room air or would require surgery immediately to breathe properly. The birth plan was simply to find out how she reacts to room air and go from there. We had approximately 20 different specialists standing by, waiting for her arrival from not only labor and delivery, but cardiology, pulmonology, cardiac surgeons, and more. She was born and despite all odds, she could breathe room air. Her only telltale sign was her oxygen level sat around 85%.
It’s been 8 years of hospitalizations, steroids, preventative vaccines, home oxygen, inhalers, daily medications and altered physical activities, but zero surgical intervention which is nothing short of a miracle that we are so grateful for.
Unfortunately, she is declining and showing more and more signs of distress during intense activity or increased work of breathing. A recent exercise test proved that her oxygen levels are rapidly approaching low 50s when she is active and that happens in less than a minute from the start of exercise and it takes her several minutes to recover. Her ability to maintain exertion is non-existent and this affects her daily life, both physically and emotionally, plus socially- just one way is modified PE classes and daily pretreatments prior to exercise.
Cardiac surgery was discussed between her cardiology team in Maine and the cardiologists and surgeons in Boston and they now believe surgery is her best option to improve her physical health but also quality of life. But it was said maybe summer of 2025, until the results of the exercise test moved it to July 2024. She will be having a major open heart procedure to route her pulmonary artery through her VSD and fix the “looping” transposition of the artery's defect as well, and hopefully widen that pulmonary artery to increase her overall resting oxygen level.
This means there will be several appointments between now and her surgery date in July that we will be commuting to Boston for and paying meals plus housing during certain scenarios, as well as paying for parking at the hospital and any specialty items she may need (including new clothing items she can wear without putting her arms above her head, or requiring strength to pull up, as she will not be able to perform those actions for approximately 2-4 weeks post operation). Currently we have 10 various appointments prior to her actual operation we will need to attend to ensure her anatomy is correct for the procedure chosen and due to her anatomy she is at an increased risk of having electrical issues between her heart chambers which would further extend out stay while they work to correct the electricity, or possibly put in a pacemaker.
Then she will need to recover after surgery and unfortunately the window to full recovery is quite wide. We are being told it will be several weeks to recover to full “normal” but it could be more or less depending on complications or her progress. I recently learned that during open heart surgery you aren’t wired and stitched shut immediately in the OR like most other surgeries. You’re actually left “open chest” for 2-14 days to allow for inflammation and swelling to reduce/eliminate risk of organ damage due to swelling against the ribs. Crazy to think about right?
So all of that being said, it leads us to today. We are 2 months away from surgery now (a surgery we thought we had over a year to prepare for) and we have a good idea of what our ‘must pay’ bills will be, but I will be out of work on FMLA for the majority of this time, which is currently unpaid in the state of Maine. We have also made the hard decision that Conner (dad) and Leona (sister) will need to stay in Maine during this time, so he can work to keep us somewhat afloat and eliminate travel/lodging/food during any trips.
Update: KIm's surgery was on July 16. Her oxygen saturation has come up to mid 90’s and will continue to rise to her new baseline of 100% (as she gets up and is able to take deeper breaths without pain). This is huge, because Kim used to live anywhere from 70-90% everyday of her life. I’m so excited to see how this will improve her capabilities and daily life in the future.
Below is a list of patterns that have been chosen for this quilt.
Please check this list for duplications before signing up.
Link to sign-up form is at the bottom of the list.
Accepting 12 signups
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1. Joan M - AZ - Aloha
The word "Aloha" with about 7 different Hawaiian flowers from Mar/Apr 91 CS&CC Magazine
The word "Aloha" with about 7 different Hawaiian flowers from Mar/Apr 91 CS&CC Magazine2. Sandra P - MA - https://www.etsy.com/listing/1396805021/lilo-and-stitch-aloha-cross-stitch?click_key=ab03483654478788116b3cad292dec0920fa9733%3A1396805021&click_sum=d51f2469&ref=shop_home_recs_20&pro=1&sts=1Lilo and Stitch standing together, Stitch playing ukelele
Lilo and Stitch standing together, Stitch playing ukelele3. Sandy S - MO - Bird of Paradise from Birds & Flowers of the Rain Forest by Stephnie Seabrook HedgepathShades of orange Bird of Paradise
Shades of orange Bird of Paradise4. Fran G - FL/WI - Stitch playing guitarFree pattern blue Stitch playing Hawaiian guitar
Free pattern blue Stitch playing Hawaiian guitar5. Nancy F - IL - Hibiscus flower - 10431435-Abchor-Hibiscus-Hopp-0022500-00001-05_Downloadable-PDF_2.pdf
6. Sandra H - TN - Stitch Drawing Hearts - Stitch Drawing Hearts from https://www.facebook.com/media/set/?vanity=dinha.pontocruz&set=a.240907907432211
7. Andrea E - CA - Pretty Little Hawaii by Satsuma Street
8. Harriet S - NJ - Lilo and Stitch Aloha https://www.etsy.com/listing/1243297819/lilo and stitch aloha
https://www.etsy.com/listing/1243297819/lilo and stitch aloha9. Carol H - PA - https://www.etsy.com/listing/1097489128/stitch-cross-stitch-pattern-pdf-angel?click_key=7689cf23b164f32e3060c0136ac10998e4c1d3a8%3A1097489128&click_sum=b360070e&ref=hp_rv-1&pro=1Stitch and Angel with heart above
Stitch and Angel with heart above10. Mary Ann M - MO - https://www.etsy.com/listing/659841036Stitch wearing a Hawaiian shirt with flowers on head
Stitch wearing a Hawaiian shirt with flowers on head11. Laurs P - FL - Stitch (free pattern found on Pinterest)Stitch with red sweater and hat surrounded by red hearts with border
Stitch with red sweater and hat surrounded by red hearts with border12. Jennifer P - NC - Stitch with the word OhanaStitch with flowers and the word Ohanahttps://www.etsy.com/listing/1223168312/stamped-cross-stitch-kits-birthday-gift?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=lilo+and+stitch+cross+stitch+pattern&ref=sr_gallery-2-12&pro=1&sts=1&dd=1&content_source=703ea8fcb7c56c0043830e60617ee0440f00fc16%253A1223168312&search_preloaded_img=1&organic_search_click=1
Stitch with flowers and the word Ohanahttps://www.etsy.com/listing/1223168312/stamped-cross-stitch-kits-birthday-gift?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=lilo+and+stitch+cross+stitch+pattern&ref=sr_gallery-2-12&pro=1&sts=1&dd=1&content_source=703ea8fcb7c56c0043830e60617ee0440f00fc16%253A1223168312&search_preloaded_img=1&organic_search_click=1
