He was born on February 7, 2014 at 9:04 a.m. He weighed 3 lbs 15 oz & was 17" long.
His weight was a huge surprise for not only me & daddy but also his Dr. We were all very speechless. Although he was small, he came out a fighter. He required no oxygen when he came out & was eating almost immediately afterwards. Because he was so tiny, he required a lot of time under the warmer. For the first day & night we did really well. He was in & out of the warmer & my room a lot that first night.
Everything was looking good until after midnight his blood glucose began to spike. His numbers could be found any where from 40 to 223. This is not good. A normal blood glucose for a baby is around 70-110. Of course he was born into a great hospital with incredible dr's & staff, unfortunately they are not equipped or trained to take care of babies this tiny. Dr. Franson called the Porteneuf NICU team to take Peyton to Primary Children's. They were at the hospital & getting Peyton ready to go with an hour.
My parents,sister & brother have been absolutely amazing to my kids! I am beyond lucky to have family that will drop everything just to help us. By the way Carter loves Peyton & Wyatt....a picture says a thousand words right!?
He has consistently done well with his eating but his glucose number fluctuate from 112-283. We have met with the nephrologist, endocrinologist, & the genetics departments. The nephrologist which is the kidney doctors are concerned his kidneys aren't performing correctly so they have decided to do some lab work from me as well to see if I was having kidney problems & if I was that could determine some of Peyton's issues. The endocrinologists deal with his high glucose numbers. They are wondering if it could be up to three things....
1. A genetics problem, which that team will run tests & get back with the other 2 doctors for that.
2. Transient Neonatal Diabetes: it appears in babies for up to 12 months old but then subsides & either goes away or comes back when they are teenagers or adults & may become permanent.
3. Permanent Neonatal Diabetes: this one shows up in babies ages 6-12 months & becomes permanent diabetes for their life.
Peyton will be tested to see how much insulin he is making to determine if a little bit of insulin will be necessary to keep his numbers down.
He is a little fighter though! Right now we are just in the testing phase of things. His diagnosis could be a lot of different things, we just won't know until we eliminate some things.
I will update things as they come in today!!
Thank you to everyone who has offered their time to come see us & brought us flowers & other little things!! Your prayers & thoughts mean the most to us! Thank you!!
Kylie, I'm the one who came by and met you on Sunday. I'm so glad to hear he is a fighter. He's a cute one at that! I will continue to keep you, him and all your family in my prayers. All my love, and it was truly wonderful to meet you. You are amazing and seemed so positive when I met you. Hang in there and if you need anything I live close and can help in anyway!
ReplyDeleteAndrae Kelly
My name is Diane and I heard about your baby from the lady that does my hair, Lisa Gillespie. I think she is a distant relative of yours. Anyway, my daughter was diagnosed with diabetes at 6 weeks old in 2001. We had hopes that it was transient neonatal diabetes but it was not. In August of 2006, I came across an article that talked about a young girl named Lilly Jaffe who was also diagnosed with diabetes at a very young age (less than 6 months). The article highlighted how this girl had recently transitioned to an oral medication to control her diabetes because she had been misdiagnosed with type 1 diabetes. The research had progressed to the point scientists could identify a genetic mutation that had caused her diabetes (now called monogenic diabetes). Her body was producing its own insulin but because of the mutation the potassium channels within the islet cells were not functioning properly. I actually contacted the doctors at the University of Chicago that were mentioned in the article. I told them of the similarities between Lilly and my daughter. They replied within a couple of days, collected more information (i.e. birth weight, if we had done a C-peptide test to test for insulin secretion, or an anti-GAD test to check for the antibodies that destroy islet cells) and sent a DNA swab kit to collect a sample to test my daughter's DNA for a genetic mutation. After a long couple of weeks, we got the result that she had a mutation that was treatable with glyburide (or a sulphonyurea), a common type 2 diabetes medication. We worked with our pediatric endocrinologist, Dr. Michael Swinyard, from Salt Lake City, who, in turn, consulted with the doctors at the University of Chicago to transition our daughter from insulin to glyburide. Dr. Swinyard has been involved in our daughter's diabetes care from the time she was diagnosed and on insulin to the current day.
ReplyDeleteLong story short, I am happy to talk to you about what you are going through, as well as share any information with you or your doctors that might be helpful. Please contact me through my email and I can share the names and email addresses or phone numbers of the doctors that helped us through this. We also have a great support group of parents that communicate via email with questions and concerns regarding our children, as this is so rare to be dealing with an newborn and diabetes. My email is cermachrome@msn.com.
Whatever you decide, my thoughts and prayers are with you; having an infant with diabetes is not an easy road!