“…she is a happy, energetic 6yr old who loves life, school and people!”
Sawyer Reese Fagan, Mosaic Trisomy 13, 9/14/2009, Aubrey, TX
I’m new to this and think it’s way easier to tell our story then write our story. So I’m going to condense it to keep from writing a book with every detail. Plus don’t judge my typos….I’ll have plenty!
Sawyer was our third child so I opted to not have the AFP test this go around. All ultrasounds were good other then we (the doc and I) disagreed on due dates. He went based on her measurements and I went based on….well you know. The pregnancy was normal up until 34 weeks. Labor day weekend. My water had broke and I went to the hospital. My OB measured the amniotic fluid and then decided to care-flight me to a hospital and be put under the care of a specialist as my best option. After waiting 7hrs to see the specialists, they had stopped labor and and pumped me full of magnesium. I had swelled up and by the time the specialist ran his test measurements of the amniotic fluid he saw nothing but normal. I stayed in the hospital for 7 days. I’ll spare all the details and anger that had built up but by day 7 and him doing a buzzer test to check for fetal movement (which she didn’t move), he said all was fine and walked out. The nurse said that’s not right and I left the hospital the next day on my own. I went back to my Doctor and he confirmed with his partner and I was rushed into a emergency C-Section. Sawyer was born on September 14th 2009 (on my husband and I’s 13th wedding anniversary) at 3:10pm at 4lbs 13oz and 17in long. She had a blood sugar of 20 (why she wasn’t moving) and low blood platelets. She also has extra pinkies on each hand but the nurse said that they see it all the time and no big deal. They care-flighted her immediately to Cook’s Children’s NICU in Fort Worth, TX.
They ran a lot of test that confirmed Low Glucose (took 3 weeks to normalize), low blood platelets (took 3 weeks to normalize), both kidneys a little enlarged (that is her normal and they work great) and some calcium deposits in her liver (which no one is concerned about and haven’t grown). They ran a genetics test but was told they didn’t think anything would come back. She had some abnormalities but all could be explained off. She was never on oxygen other then when delivered and never any heart problems. (She had a pinhead heart murmur but had closed up).
2 weeks later we got a shock when the test came back as Mosaic Trisomy 13. The New Resident who came in to delivered the message needed a lesson in bedside manors. I’ll leave it at that. But the demeanor of everyone changed and basically we got the “It’s not good. Most kids don’t live past a year and you should go home and enjoy your time” speech. Ummm…NO! That’s not how we roll Doc. Later we had a “round table’ meeting which included us, a couple of the Doc’s, hospital admin people, a Chaplain, a lawyer and people who I have no idea who they were because it was too many people. I cried…A LOT, as they gave us the “speech” again. We told them she would let us know when she couldn’t fight anymore, not them. We would not sign the DNR. Then we were in denial. No…we just don’t give up so easily. They wanted to put a G-Button in and send her home. I said no again. She had difficulties eating, but it was because of the low blood sugar and lack of energy. In my eye’s she just need time to get stronger. 42 days in the NICU and PICU and we went home bottle feeding. (That’s the very short version of our experience)
One week after being home I had to take her back to the ER for vomiting of blood and bile. A week of testing and putting a NG tube in the relieve her tummy and we went back home. Changed up her formula and was a little better. Most of Sawyer’s medical problems have been Digestive and GI related. We went through test after test and then did the same test again. Always came back normal. Finally….at 6months old we found the problem. Her intestines were not in a normal spot. They were lower and had “spider web” like bands pulling them in all directions. So we had a LADDS procedure done to raise and separate her small and large intestines, an appendectomy and her extra pinkies removed. We spent about a month in the hospital where 2 weeks after surgery, she developed Pancreatitis. We thought possible Gallstones, but couldn’t catch it. We put a pic line in her head and did TPN feedings. Her lipase number were through the roof. I’m talking 2000-2500 range (normal is 110-340ish) and she was in NO PAIN. She was playing in her bed, smiling and trying to roll over (which was awesome)! The doc said most grown men with numbers like that are in a fetal position and on Morphine. Not Sawyer. After a couple more weeks they sent her home because they decided to treat patient and not numbers. we were on a special formula that cost $1200 a month for 3-4 months. Insurance would not pay. But she got better and life was finally getting to normal.
Her tongue was completely attached and after that was fixed (September 2010) her feeding/eating improved big time!! In October 2010 she started vomiting bile. Here we go AGAIN!! I took her to the ER and they ran tons of test again and again on her gallbladder and all came back normal AGAIN! It took her vomiting bile in front of the Doc for him to say lets take out her gallbladder! When they went in they said the gallbladder was dead and that is why it looked normal. It never worked.
After that we had a whole new kid! She was happy, eating smiling and getting stronger. PT, OT and Speech 2x a week. They said she would never roll over…she did. They said she would never sit up…she did at 12/13months. They said she would never walk…She did with you holding her hands at 18months and she was walking by herself by the time she was 2 1/2 – 3!! We do not treat her any different then our older two children (16 and 10) which I believe has been key in her doing the things she does. She could work bob books like a champ on a Ipad at 24months.
She stayed very healthy until 4 yrs old when she had a spell of anemia. A week in the hospital, blood transfusion, heart enlarged due to anemia which caused a heart murmur. On iron supplements for 2 months and now control iron with food. Heart is back to normal and good. On ZERO meds.
All healthy other then some UTI because constipation is always and issue. She started Kindergarten this year and loves it. She is learning fast!! All has been great until our recent ER visit on this Holloween 2015 at age 6. We went from happy and healthy on Friday to throwing up bile the next day and a trip to the ER. After some test, she had poop backed up all the way from tummy to rectum. She was diagnosed again with Pancreatitis and something new…Colitis. 11 days in the hospital. 5 Enema’s later and some poop removed but not all. Miralax is given 2 x a day and is working almost too well, but better then the other. Small pinhead rupture in the intestine but it sealed itself up. After 5 days of zero food or drink, she was given a pic line and TPN/Lipids. She had lost 5lbs. Went from 41lbs to 36lbs. She didn’t have 5 lbs to lose and we worked hard for those pounds. She is tall and tiny. Lipase this time was at a high of 5248 and still running up and down the hall ways laughing and giggling and again NO PAIN and me chasing her with a pole behind to keep her pic line safe! Doctor’s don’t get it. She is good at causing Doctor’s to scratch their heads. 🙂 But that’s her. She is always happy and loves everyone. Her pain tolerance is very high. She won’t cry when they put an IV in but she cry’s when they check her BP. 🙂
She was finally on fluids and eating great (low fat diet). Last day they did and MRI because the new GI (who I like) test for 5 things that could cause these issues. And sure enough she had one and the one I didn’t want. She has a Tethered Spinal Cord and a small cyst (that they will test and make sure it is not cancerous). We have a consult with Neurosurgeon on December 9th after her GI follow up to see about a surgery.Until then she is a happy, energetic 6yr old who loves life, school and people! She is truly a awesome kid and I’m so lucky God chose us as her parents. She has a lot to teach to many!
Additional information: Sawyer is non verbal but does understand when you speak to her. Working on a communication device but on a work Ipad. She also has had 20/20 vision but does have COMA (congenital occular motor apraxia). Can follow up and down but does have trouble following side to side. #SawyerWorld
Philippians 4:13 “I can do all things through Christ who strengthens me.” He has definitely given her strength!!