Saturday, March 29, 2014

•Some Good News•

Peyton continues to prove to every one that he is a fighter & will continue to strive & be tough! 

He is 7 weeks old now & 6.8 lbs! 
I love his smile & he loves to smile at first sight of someone! He is eating at least 50%-75% of every bottle he is given & is staying very stable with his glucose & insulin! He is gaining on average 35 grams/day & the Dr.'s would like him to gain at least 500 grams (1.1 lbs) before we start attempting the insulin shots. If he gains 35 g/day, it should be about 2 weeks!! On Friday night he was taken off the oxygen & has been doing fabulous! No desats!! I am so proud of how tough he is!!

Thursday, March 20, 2014

•New Feeding Schedule•

We have been with Peyton the last few days. He is doing so good! He is eating 33 mL in his bottle & 17 mL in his feeding tube every 3 hours. We wanted to try it all at once so he was getting his full 50 mL within an 1 1/2 hrs. We hoped it would give us some sort of answers with his glucoses, it didn't. It jumped up to 327, it hasn't been that high for a while. They want to try it through the night & if it doesn't seem to stable out we will go back to what we were doing. He was getting his bottle feed, his food pump shut off for 2 hrs & then his last hours worth through the tube. Kinda confusing when I have to type it out, I hope it makes sense. Tomorrow is a tube change, those days are rough on Peyt! He is up to 6 lbs now tho! The bad & sad news comes with the good!! 

•A NICU Mommies Struggle•

This post is not for a pity party, this post is to help me deal with bottling things up & bursting in a form of writing. It is to help me recover from this experience. If you plan on judging me & thinking I'm pitying myself don't continue to read. 

I planned on having a healthy baby. I planned on taking him home 3 days after he was born & I could be released after the c-section. I planned on being waited on by my husband for a week afterwards. I planned on my other boys being big brothers again. I planned on being sleep deprived. I planned on putting him in his bouncer & swing to soothe him. I planned on taking a newborn home with me. Things are never the way you plan. My baby is not as healthy as I would like. I was released from the hospital without a baby. I was not recovering at home, instead I was being pushed around like a fool at Primary Children's. My boys do not understand why their brother can not come home, they don't understand why he is sick & can't take medicine like they do. My baby sits in a swing, but has wires & monitors attached at all times. I sit here, at home, without my baby. I have spent so many hours wondering how much longer we are going to be here, I still don't know when we will be coming home & it's frustrating. I hate being negative & sometimes it totally consumes the way I think. I know there are worse things that not only could have happened with this genetic defect, but also there are worse off babies around us. We are by far the healthiest in our room of four babies. But that doesn't stop me from sometimes asking why our family? What am I supposed to learn from this? Patience? Organize our life better? Be a better mom? A better wife? A better person? More attentive to our kids? Questions keep piling the longer we sit watching our baby suffer. He is rare. He is special. He is a fighter. He is my hero. He is my baby. His body is a mystery to the Dr's at the hospital. 

I remember so clear the moment Dr. Franson came into my room & said we are going to transport Peyton to Primary Children's, the NICU team from Portneuf will be here within an hour. My heart sank. It was almost like my brain was not functioning, I couldn't think. I couldn't speak. All I could do was cry. I sobbed. I broke down. Post partum hormones & emotions were at an all-time high. I experienced post-partum depression with my other boys but that was nothing compared to this time. Dr. Franson told us at 7:30 a.m. what was happening & I don't think I stopped crying until I received my blessing after Trev & Peyton left in the ambulance almost 3 hours later. I know the reason we were given this baby & this trial is because as parents Trevor & I can handle & take care of Peyton the way he needs to be. We are strong together & we didn't know how strong until now. We NEEDED to know. That was part of God's plan for us. I knew I loved Trevor & wanted so badly to spend forever with him while we were first dating. You never know what life is going to throw at you when you decide you're going to marry someone. It's going to be hard, there are times in every marriage I think when you think it might be easier to just back down & give up. You don't! & when you get through it you look back & realize just how strong you really are together. We are struggling, not with loving each other, not with relying on each other, & not with our marriage. We are struggling in our own ways as we are dealing with our baby being 3 hours away & no answers. We have never felt stronger as a couple! We got one month together. We were able to spend quality time & learn how to better communicate with each other! I rely so much on Trevor emotionally. I need him really bad this time. I am an emotional wreck most days & so is he. Although he is a man & would probably never admit that to anyone. The medicine helps, most days. And then I have days where I can't help but cry. Tears well up in my eyes & I don't even know what triggers it sometimes. For now I will just wait patiently. I will wait for answers. I will wait for Peyton to gain weight. & I will wait for the moment they ask us, when would you like to room in with Peyton it's almost time to go home. When that day comes, I will start to work on being myself again. Until then don't be alarmed if you don't recognize me because of the bags under my eyes & my hair not up to standards, don't be alarmed if you feel like I'm avoiding you or I'm being short with my answers I don't like to talk much about this & cry in public. 

I don't know what the future holds for my sweetheart Peyton, but I am certain that we will do it as a family! 
Sunday, March 9, 2014

•Information on Peyton's Condition•

6q24-TNDM is defined as transient neonatal diabetes mellitus caused by genetic aberrations of the imprinted locus at 6q24. The cardinal features are: severe intrauterine growth retardation, hyperglycemia that begins in the neonatal period in a term infant and resolves by age 18 months, dehydration, and absence if ketoacidosis. Macroglossia and umbilical hernia are often present. Diabetes mellitus usually starts within the first week of life and lasts on average three months but can last over a year. Although insulin is usually required initially, the need for insulin gradually declines over time. Intermittent episodes of hyperglycemia may occur in childhood, particularly during intercurrent illnesses. Diabetes mellitus may recur in adolescence or later in adulthood. The average age of recurrence in the series was 14 years, coinciding with puberty. Some require insulin, others are treated with oral drugs or diet alone. Intelligence and growth are usually normal in this condition except in individuals with loss of methylation at multiple loci. Prevalence of TNDM in the UK was initially estimated at 1:400,000 as reported in 1997. More recent calculations confirm a total neonatal diabetes incidence of 1:215,000 to 1:400,000 (2004-2010). Blood glucose concentration should be monitored and insulin doses changed accordingly as in the standard treatment for diabetes mellitus. Insulin can be discontinued when blood glucose concentrations stabilize. Once diabetes mellitus is in remission, parents need to be alerted to the possibility of recurrence of the diabetes mellitus, particularly during periods of illness. If diabetes mellitus recurs, treatment may require diet alone, oral agents, or insulin, although the doses of insulin needed tend to be less than those required in Type 1 diabetes mellitus. The risk to parents, sibs, and offspring of a pro band with TNDM (transient neonatal diabetes mellitus) caused by paternal UPD6(Uniparental disomy 6) is unlikely to be higher than the risk to the general population, as paternal UPD6 is a de novo, typically non-recurrent event. Each child of a male with 6q24-TNDM caused by duplication of 6q24 has a 50% chance of inheriting the duplication and is at high risk of developing 6q24-TNDM and/or diabetes mellitus later in life.

References & Website with full article:

•Some Answers•

When we were home last week I received a call from the nurse saying they had hopefully figured out why Peyton has been having such high nights & normal days! His insulin tubing has been changed every night in the past month, Dr. Null decided to change it to every three days now. This made a huge difference in his numbers at night! He has stayed in a 60-160 range for the past three days! Tonight was a tube change, so we are experiencing high numbers. We feel assured to know that the reason for the highs!! Hopefully the highs do not last long & we are back to normal by afternoon tomorrow!

Also, Dr. Null has been in contact with a Ph.D that has made an insulin pump for infants as young as 2 years old. He explained our situation & that if it was possible to use the pump on Peyton he would write it up! So they are going to send one to him & as soon as Peyton gets enough fat to put the site in, we can try it!! I can't wait!

Thursday, March 6, 2014

•Results Are In•

The blood sample sent to the United Kingdom came back & it confirmed what we thought possible. Peyton has a 6q24 chromosome defect. It affects the way his body makes insulin. When we first got to Primary's they did a test & Peyton was making zero insulin to begin with, but he does have a pancreas so that is good news. They are thinking by the time he is 4-6 months old it goes away & the body will make insulin. It is still classified as transient (temporary) & it may come back to be permanent in teenage years. As far as the endocrinologist knows only 6-10 cases were written about this. There could be more & just not recorded in medical journals. We have an extraordinarily rare baby & case!!!

Peyton weighs 4.971 lbs now! One whole pound gained in the month we've been there!! He continues to be fed through his continuous feed tube & his numbers have been excitingly level for 2 days now!! He is still on antibiotics till Sunday for his little bug. It's a good day!!