•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!

•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!

•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...

•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!!