Thursday, February 27, 2014

•One Of My Worst Moments•

I completely fell apart last night on our way back to our room. After having two almost three good days & not to bad of nights... under 200 anyways, my hopes were high that we were getting closer to transitioning to bottle feeding.

Those hopes were soon shot down as Peyton's numbers rose every hour. It is such an adrenaline rush watching that monitor tell me exactly what I don't want to see. Last night was by far one of the worst nights for both Trev & I in the last 3 weeks. We had been with him since about 8. He had started going up around 6, so when his number was higher we upped the insulin. He started at a .023 insulin drip & at our highest point with a BG (blood glucose) of around 480 we got up to .18, we have never been that high...EVER. It broke my heart to see him cry & not be able to do anything. Our nurse practitioner Ashlee, along with 3 other nurses checked everything he was hooked up to & could not find any clamped or kinked spots & they checked the insulin to make sure everything was written & ordered correctly. We couldn't find anything. It felt horrible... I felt lost, like we were starting at square one again. Confused & heartbroken. 

We decided around midnight, to go back to our room to get some sleep & Becky (our most amazing night nurse) would call us with his next glucose. Fear entered our hearts & minds again as it came back higher & he kept desatting & stopped breathing a couple times. So oxygen became necessary, not a huge deal. He had it about a week ago, he gets to comfy while he is in a deep sleep & has trouble remembering to breathe...we know this is as a normal. 

Next, since we had decided there was no visible kink or clamp we needed to do an X-Ray to check his PICC Line to make sure that there wasn't a kink, or it hadn't moved itself around somehow. That checked out to be good news!!! Everything looked really good with that. We then had to give him an IV to give him antibiotics because since there was no visible problems we thought maybe he was starting to fight some kind of infection. We had to also do a blood culture, urine culture & a lumbar puncture (spinal tap) to check for any blood infections, urinary tract infection & make sure the white & red blood cells are doing what they need to. The poor thing was being poked for his glucoses every hour as well. 

Getting his lumbar puncture. Such a brave little baby. 

At 5:00 a.m. we were finally making progress with dropping his glucose numbers & we decided it was bedtime. This morning when we got back we were told the reason why his numbers were so high.... when the nurses have to do a new syringe the insulin has to sit in the tubes for a minimum of 30 minutes, his nurse yesterday did NOT do that. He screwed up big time. Because it didn't have proper time in the tubes the harm of that showed up last night, & no one knew why until this morning. We are still trying to bring his numbers down, I just talked to his night nurse and his last one at 8:00 was 344. His range today was 184-344. 

I am so frustrated at the thought of somebody having this kind of job & not doing everything necessary to keep the baby healthy. I just can't kick the thought of him being that dangerously high & the possibility of him dying. I know that every one is human & no one is perfect, but Peyton is my baby & to know he was in that great of danger is just unforgivable at this moment. There are other nurses who have done so good with him & made sure everything is the way it needs to be. Some people can just multi-task better than others I guess. 

I think back to 8 or 9 yesterday night & how scared I was, I cried, I was mad that diabetes is keeping my baby away from home, sad that he was not feeling well & all I could do was listen to him cry & heartbroken because as a mom you want to take away every ounce of your child's pain away & I can't do anything for Peyton...

It breaks my heart that my baby is the "rare" baby that has to go through this & be a guinea pig for all of this. Like I have said before this is found in 1 in 500,000 babies. & sometimes I find myself asking Why? What is the reason God gave this trial to my family? I know that's not a positive attitude..but this is all so new to me that I hate even the thought if it... I find myself getting upset when I wake up in the middle of the night to a bad dream instead of a crying, hungry baby. I'm so sad that he's not a home with us.

I feel like, even though he is only a few hours away & eventually going to come home, we are missing a part of our family. It's a horrible feeling.

Telling Peyton good bye today. Our Peyton is up to 4.4 lbs by the way! He still looks like a wrinkly little monkey baby!

Tuesday, February 25, 2014

•It's a Rollercoaster•

I can only imagine how Peyton feels on this rollercoaster. I know there are moments when he probably feels terrible & really has no idea why he feels the way he does. If you haven't noticed, night time is the worst & last night was no different. His numbers were in the 300's again & he got as high as .08 of insulin. As of right now we are in the 150's & at .02 insulin. I wish we could stay in this range & leave this place. I love it here don't get me wrong, the nurses are fabulous, the practitioners & neonatologists are amazing, but even some days they are confused by this little boy & feel like they're starting over. Peyton is kind of like a guinea pig for every one, we are all learning with him. I just wish his body would cooperate with us.

I had 2 of my cousins come give him a blessing last night. He hadn't had one since we left Grace & with his crazy up & down numbers the last week, I decided it was time for another one. I am so happy they took time away from their own families to come give us a little peace & comfort. Immediately after Ben finished the blessing my stress seemed to just leave. Obviously with this stupid disease it's never going to leave but I did feel a little comfort in him gaining strength & hopefully being able to go home in the next few weeks. It makes me extremely grateful for what I believe & knowing that blessing came from The Lord! 

I also have been thinking a lot of my grandma lately. Man I miss that woman! I miss our phone calls, her amazing advice, her way of making me instantly feel better about anything & I miss just hearing her voice. This is something she would have been here in a heartbeat for. She would have drove here the day after Peyton was born & just sat with me. Don't get me wrong Trevor knows more than anything I just need to sit with my baby, & it's emotionally exhausting. Grandma would have sat the whole day with me! I wish more than anything I could call her & cry to her about leaving my other babes at home & driving here so much & so often. I feel like I'm abandoning them even though I know they have far to much fun at Grandma & Grandpas house. For that I am so thankful! I want my kids to have the same relationship I had with my grandparents. There was nothing I couldn't talk to Grandma about & I want my kids to know there won't be anything they can't talk about! 

This mommy needed a vent session today! I'm sorry there wasn't much to update about Peyton, but hopefully we stay where we need to today with his glucose!

Sunday, February 23, 2014

•Peyton Update•

So last night was still a high night. Not near as high as before, our highest was 266. Dr. Null has been a diabetic for like 40 years, so he kind of has a better idea of this diabetic thing, there have been times that even he has been so confused by Peyton. He is an amazing doctor & is so highly thought of, I have no doubt that he will do everything he needs to do to help Peyton!!

We have been bolusing insulin & keeping the insulin drip off for the day because his days have been right where they need to, so we started the drip back at .03 on at 7 in hopes that the time frame will keep his numbers where they need to be. He is still on his continuous feeding... 

So as of 8:00 p.m. his numbers have started going up again...they have done this every night for the past three nights...we are still checking every half hour for now & we have turned up his insulin to .04.

This rollercoaster ride really sucks...
Saturday, February 22, 2014

•Peyton Update•

We came home this weekend again to spend some time with the other boys! I love coming home to them, but I hate leaving Peyton all alone. It is a huge "guilt trip" (I guess you could call it that) on this mommy.

Peyton is doing better today. Last night he spiked again up into the 400's, so this morning at rounds Dr. Nohl decided to try continuous feedings at 12 mL/hr & keep the insulin drip at .03 to see if that would level out his numbers. I just called to see how his day has been & his numbers have stayed between 68-169!! He always has better days than nights, so I am extremely anxious to see how his night goes. I really hope he stays leveled & we get good news tomorrow! 

Thank you for the thoughts & prayers!! Love you all!!
Thursday, February 20, 2014

•A New Bed, New Formula & Bad Numbers•

Two & three days ago Peyton started leveling out with his glucose numbers. They had stayed right in the ballpark of 60-110. He had been receiving vitamins & extra iron with his feedings & he had been puking just a little more than we'd like for him to. So I brought up the idea of switching to Similac Soy because our other boys were on that. They decided to start him on that yesterday & fortify it to add more calories so he's not losing those! We will more than likely go home fortifying his formula until he can start growing fast & on his own so that is one other thing mommy will have to learn!! Peyton did not have a good morning early Thursday nor did he have a good Thursday night! His numbers were in the 300's Thursday morning, they came down a little ways to 153 by mid afternoon & then began going up to the 400's by 9 p.m. When this happens they give him a bolus of insulin. A bolus dose of insulin is the dose of regular or rapid-acting insulin that is injected to cover the food eaten in a meal or a snack. They started to go down as of midnight, so hopefully when we get up there this morning they will be back to normal. 

This was Thursday morning around 1. Daddy was stressed & needed some snuggle time.

With the bad always comes the good! Peyton was moved to a big boy crib! They do this when the babies can control their body temps on their own & without the bed warmer!! Peyton is now up to 4.1 lbs & keeps warm on his own!!

Peyton is known as a little monkey to a lot of his nurses! We have one night nurse in particular that is just amazing with him!! Granted he is more awake at night (oops days & night mixed up) but he will take full feeds for her & she is just so good with him! Next time she is working I will get a picture!! 

So we are still just working with this roller coaster of glucose number, & hope we find a happy medium in the next little while.

Thanks so much for the prayers & thoughts!!
Tuesday, February 18, 2014

•Peyton Update•

We haven't had much happen with little P lately! We are working on getting him regulated with his glucose! Sometimes it will be really high so we turn the drip of insulin on & then it drops to low so we turn the insulin off.. It's just an ongoing process of trial & error. Today we have had 2 glucose tests that have been 100 on a .03 insulin drip! Our goal is to stay between 70 & 110, so we are on track!

They checked his red blood cells & they are a little low so he had to go on a medicine for that until they are back up to what they need to be! 

His weight dropped a little from 3.13 to 3.9 because he was puking from the vitamins they were giving him so we did lose a little but not much!! 

He is a mommas boy for sure!

He does love his dad!! I promise!
Saturday, February 15, 2014

•Peyton Update & Wyatt's 2nd Birthday•

The hardest thing for me through this whole trial is being torn between being home with Carter & Wyatt and being with Peyton. I am so blessed to have my family as close & as flexible as I do. My parents have been amazing this last week. I am so glad they have a close relationship that consists of seeing my kids on a daily basis, it has helped immensely in our situation. The boys love their Grandma & Grandpa so much. I'm so happy they are comfortable there. My parents are one in a million!! I have to give my sister huge credit as well! Not only does she have her own child, but she has also been helping my mom out with the boys, plus taking care of her own family!! My boys love their Aunt Lace, Uncle Cam & Uncle Braden! Seriously I am beyond blessed & have felt so much strength & love throughout this.

So we decided to come home for the weekend since it was Wyatt's birthday on the 11th & we missed it. We celebrated today with him! 

He was completely spoiled with Toy Story toys & a fun blocks table that has a flat side to use while coloring or doing puzzles!! 

It was so much fun! 

I have been calling every morning & every night to check on little P!! He is in great hands & doing so good!! So since he is so little, he bruises every single time they have to switch out his I.V.'s. It's not only heartbreaking but it is hard to keep his insulin going through that if they're constantly changing it. He received a PIC line early early Saturday morning. It will help his continuous drip of insulin & it can be left in for up to a month before it needs replaced. He started out received 1.5 but today his glucose numbers dropped to the 70's. They would like to keep them between 110-200. They dropped his insulin to 1 this afternoon. He has been very alert and awake today which means he is feeling good! We have noticed when he sleeps through his cares or being poked while getting his glucose reads, his numbers are going to be high because he doesn't feel well. He has GAINED WEIGHT!!! When we started this journey he dropped from his birth weight of 3.15 lbs to 3.9 lbs. Today his last weight was just under 3.14 lbs!!!! I'm so stinking excited to hear that! It is a huge step towards the going home process!! I know 5 oz. doesn't sound like much, but to this mom & dad it's huge!! 

So P is doing great! Thanks so much for all your prayers & gifts! They mean soo much to us!! 

Wednesday, February 12, 2014

•Peyton's Update•

There really isn't much to update right now. He is up to eating 30 mL every 3 hours, 5-10 mL are usually through his bottle & the rest through the pump. He is still just to tired to eat it all on his own. We are 12 hr intervals of Lantus (insulin). We will be sent home with the insulin so we will be trained on how to dilute it & how to give it. We have three main goals to work towards before we can go home: 1. Keep his body temps up 2. Gain some weight, hoping to get up to 5, but they have sent some home at 4.2 pounds 3. Figure out which insulin doses are going to work best for him.

Keep praying for us. I will update if anything new happens. Thank you to everyone who has sent us money & food & mostly all the prayers!!

Tuesday, February 11, 2014

•Day 3 of Our Stay!•

We got to meet with Dr. Vaskochil this morning. He is in the genetics department of things. His team has narrowed Peyton's diagnosis to a genetics problems. He was born with three things that are making the dr veer towards this directions. They are a larger than normal tongue, small for gestational age & hyperglycemia (high glucose). The chromosome they are looking into is chromosome 6. They are thinking Peyton got double of that chromosome from Trevor & none of the chromosome from me. Which could cause his numbers to rise. This is called Uniparental Trisomy Chromosome 6. He more than likely will also have the neonatal diabetes, for how long we don't know.

He did get a tube put in through his nose that goes down to his stomach to help with eating. It's not a constant feeding tube. One of our main goals for him is to eat on his own so they try to feed him through his mouth & if or when he falls asleep from lack of energy they put a syringe at the end of the tube & let gravity take it's course & the food will drip down to his stomach. Sunday night he also had a severe spike in his glucose, 345. So he received a quarter of a unit of insulin. It doesn't seem like much but for him it was enough to bring it down to 115. Then the day got bad, the numbers dropped to 34 then back up to 50 back down to the 30's again but as of 9 p.m. Last night they were finally in the normal range & we got a 97!!! He still mostly sits under the warmer. He is just so fragile he gets cold super easy. Moving him a lot also burns all the calories he has, which is not many. The dr said he has seen this in babies but never been on a diagnosing team for it, 1 in 500,000 babies will get this problem. We had blood work to test our chromosomes which will go to the Mayo Clinic & Peytons lab work will go to the U.K. To be tested. They have the best lab to test on baby glucose problems. 

It is absolutely insane to me that this is still happening. We were not prepared for any of this. Expectations were set for an 8 pound baby. The hardest part for me is knowing that my other kids are home without me. This is the longest I have EVER been away from Wyatt. Carter is such a good helper & I'm sure is helping grandma with him. Today is Wyatts birthday, not that he knows or cares, but it honestly breaks my heart to not spend it with him & bake his cake & watch him open presents. I know it won't matter if we celebrate a week after but it just naws at the back of my thoughts. I know my kids are in great hands but I miss them. Sometimes life is just not fair! 

I will update if anything has happened overnight when we get to the hospital in just a little bit! 

Continue to pray for Little P!!!

Monday, February 10, 2014

•Happy Birthday Peyton•

The post everyone has been waiting has taken forever I know. You see I have been just a little busy with this little boy!
Meet Peyton James Mecham

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. 
Trevor got to ride in the ambulance with them while I stayed behind to get discharged & get our bags packed for our long journey ahead. 

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!?
My in-laws came to Grace to get me & bring me to Primary's. When we got here our little guy was again under the warner trying to get his body temps up. He is just skin & bones, so we like to leave him under that. 

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!!