Adventures of Alex, Orchid, Layla, & Leo: August 2013

SO Leo has Hyperinsulinaism. If you're looking for a NAME for it. Yesterday Dr. Anshoots, one of the neonatologists came and talk to me about what exactly we were doing with Leo. For all of you that want to know his stay at the hospital is indefinite. Somedays it looks sooner than other days and really it's a day by day thing. As of right now he's only going forward which is wonderful. He's stable and going forward.

So what we trying to do.

Everyone is born with a pancreas that secretes insulin to help us regulate our blood sugar. I bodies recognize that we need a certain amount of blood sugar ( glucose -- another name for blood sugar) to run our brains and bodies so our pancreas only secretes the amount of insulin it needs to help us keep that balance so we have plenty of glucose to run our brains and bodies and the pancreas creates enough insulin ( just the perfect amount) to kick out the excess glucose.

NOW what Leo's body is doing is it is kicking out as much insulin as it dang well pleases even if it doesn't need it so the insulin is eating all of his glucose up so he doesn't have enough to run his body. So he's on a glucose drip to match the amount of insulin he is making so that he has enough to run his body and fight off the insulin. So he started out at 20% glucose drip at 17 ml per hour and now he's to a 15% glucose drip at 6.2 ml a hour and our end goal is NO GLUCOSE DRIP!!! So as you can see we're coming along. BUT that doesn't mean we're coming home soon because along the way he's gone down in the glucose and in the same day had to go right back up. This is an extremely gradual process that's why the date is indefinite. He might get all the way down to a 2 ml/hr and not be able to shake it and not be able to wean down. So then you ask what do we do from there. He's also is on a medicine called diazoxide that in all the literature says it works but in all the clinicals that Dr. Anshoots has seen it didn't work. SO please pray that Leo can be that small percentage that the medication works on so we don't have to do anything more extreme.

Well this actually runs in Alex's family but we don't know if it's genetics causing it. SO they sent out tests on monday for gene testing and it takes a week to two weeks to get the results back. They also may have to route down to removing part if not all of the pancreas. WE DO NOT WANT THAT so that's why we are taking our sweet time figure him out and let his body figure itself out.

SO please pray that his body can figure this out.

SO we are here in Idaho indefinitely. And Leo is at EIRMC indefinitely. Please pray for him. Please pray for Layla that she can understand and that this is going to make her strong and not effect her badly.
Thanks for all of the support. We are so grateful and love you all so much.

Orchid

Leo was born at 6:55 p.m.ish ( I can’t remember the exact time) on Saturday July 27^th, 2013. He was 7 lbs & 10 oz and 21 inches. I went into the hospital at 7 in the morning and they just had me hang out until about 9. Dr. Cod came in and broke my water and we waited. I was really nervous about labor because I had almost 0 zero chance to have an epidural because of my platelets being so low and I had to be started into labor with pitocin, the induction drug. I wanted to do it slowly, and I wanted to do it as slowly as I possibly could, but from 9 am until 11 am my body did NOTHING… no contractions, no labor… ha ha. During that time we called my girlfriend Klarissa to come and join us because she is a Doula and knows all about natural childbirth. So she graciously came down. Because my labor wasn’t moving at all we decided to start pitocin. So From 11 to 1 , they started the drug slowly. Just uping it 1 ml per 30 mins. My body did nothing still. Dr. Cod explained we could be here all day long and the longer we wait the more dangerous it could get for both baby and I. That is the case for anyone and everyone that’s induced. That does not explain Leo’s issues, just so you know. SO I decided to go along with what Dr. Cod felt was best. Within the next 2 hours I entered into ACTIVE labor—around 3 p.m. I was at 11 ml of pitocin and BOY OH BOY I was really in some intense labor. Without Klarissa and Alex I have ZERO IDEA of how I would’ve done this. While Klarissa rubbed my back Alex literally held me while I put all my weight on him trying to feel weightless and breathing deeply. I got to the point of tears, which is funny, not crying over pain, crying in between contractions because I was scared, ha ha. The contractions themselves didn’t make me cry it was my fear. SO those of you that would like to do it naturally I really believe that will be your biggest stumbling block because there is a point where the intensity stays the same consistently and I know I could’ve done it, I just didn’t want to and I was afraid. SO I asked the doctors for the epidural tests. They took the tests and gratefully by MIRACLE ( even Dr. Cod says it was a miracle) I was able to receive the epidural. I am going to be honest, I just think I enjoy childbirth more that way. FOR ME it’s more peaceful and I truly believe everyone has their own peace in labor. SO right after the epidural I was at 5 cm and then 45 mins later I was ready to push. I pushed for 30 mins and there he was. Beautiful little baby boy Leo. My baby boy was here.

SO here he was. He was low on oxygen because the cord was wrapped around his neck a little so they had to pump him up with oxygen, but otherwise seemed okay. He did score a little lower on the APGARS, but once again for the most part normal. I tried to start nursing him, but he really wasn’t interested. He was really tired. So we decided to give him sometime and I cuddled him. He was beautiful and wonderful. We tried again nursing, and this time he actually tried but couldn’t get the sucking down. He was just so lethargic. We thought maybe after his bath. So the nurse in the delivery room bathed him. Afterwards still didn’t eat. Layla was kind of like that though. She didn’t eat for 3 or 4 hours after she was born. Ya know stress of labor.

We were excited for Layla to meet her little brother so we hurried and got ourselves into the clean recovery room in the Mom Baby Unit. Here comes a cool side story that ties in.

My friend Kiersi has been talking about doing a toddler dance class for months. And I ‘ve always thought it’d be a blast having Layla be a part of something like that. Finally she started the dance class and Layla and I went. Jennifer Nelson came to the class also with her little boy Cruz. She was a glowy person and because I am a Mary Kay Sales Director I am always looking around at glowy women. She just had a light about her that made me want to get to know her. I was super nervous to call, but the Monday before Leo was to be induced we had dance class and I asked Kiersi for Jennifer’s number to ask her if I could give her a facial. I called her and Jennifer called me back later that morning. She already had a beauty consultant, BUT she was going to be the Mom Baby nurse on Saturday night when I was to have Leo. So we decided that I’d request her and that she’d be my nurse that night.

Okay back to Saturday night. I told my Labor and Delivery nurse I wanted Jennifer to be my nurse, but crazily enough she was already assigned to me! We got into the Mom Baby recovery room. Leo still hadn’t eaten. We were excitedly waiting for Layla to come meet him. Jennifer came in to check me and baby Leo. She looked at him he had only been born 3 ish hours and she felt the spirit that she was suppose to check his blood sugar because he hadn’t eaten. I started to panic because well it sounded scary so I tried to get him to eat again. I just thought to myself calm down Orchid, Layla will be there soon and get to meet her baby brother. It was going to be the moment I had been waiting for. I was so excited for Layla to meet Leo. I know that this moment would change our lives forever.

Layla walked in and she smiled and she saw her baby brother. She fell in love with him. Then they exchanged gifts ( we got a gift from Layla to Leo and Leo to Layla) Layla picked out a couple of cute baby toys and Leo got Layla a Rapunzel doll. Layla loved her Rapunzel doll and was super excited. To be honest it was 930ish and she was super tired so she loved Leo but she was kind of excited about her doll too. We took a picture of Layla holding Leo and she tried to hand him back to me and said something about him being heavy. Ha ha. Then we took our family picture. All through out this Jennifer was really nervous wanting to get that test done. Finally she took him to get the test done. They had to draw his blood because they wanted to send it to the lab and his accucheck blood sugar score was dangerously low at an 11. They got some test results back and Leo went straight to the NICU. I was really upset trying to keep my calm though Layla was there. I loved on her and she went home with Tammy Brown, my girlfriend who was keeping her Saturday while I was in Labor and Delivery.

We patiently waited for Jennifer to come back to take us to the NICU to see our sweet little Leo. They had to put an I.V. in Leo to start a glucose drip to help his glucose go up. I was so nervous I had Alex put me in the wheel chair ( you know sore from delivery) and we walked down the hall and waited by the front door of the Mom Baby Unit waiting to go to the NICU. She finally came and took us to see him. I was really sad. I immediately started crying. There were wires all over my sweet little new baby boy. I had barely held him and he was brand new. What was going on… why was this happening. Dr. Hymas came to try to explain what was going on.

Leo’s blood sugar was super low, dangerously. His insulin was extremely high. Normal high was 27 and Leo’s was a 147. I later found out his actual sugars were at a 9. I wasn’t really sure I understood what was going on… Dr. Hymas was trying to find a reason, that night speaking to the Endocrinologist in Boise, and the Neonatologist in Idaho Falls, trying to make sure Leo got the best care. I really can’t remember much about that night. I spent the night next to him that night. There are a few things that I remembered about the days at the Madison NICU. I had some INCREDIBLE NURSES. Women that understood my crazy anxiety. Women that were trying to help me understand everything that was going on with my sweet son. It was warm in that NICU. There were other moms we knew (Alex & I) That had their babies in the NICU and it was nice seeing their warm smiles as I came in and out of the NICU.

Everyone was really confused by Leo’s situation. They said things like he wasn’t following the rules. He’d have a few GREAT blood sugar tests then they’d crash and we weren’t totally sure what to do. They asked about family history and on Alex’s side of the family and Alex had 2 cousins with insulinoma as babies. Insulinoma to what the doctors told me is a tissue build up in the pancreas that causes the body to create insulin (too much insulin ) and so it throws their blood sugar down. So just so you guys know exactly why blood sugar is so important it’s an easy science lesson from like 6^th grade science. We eat food and our bodies turn food into glucose and glucose is the GAS to our CARS. Glucose turns into energy and runs our bodies. SO BASICALLY Leo doesn’t have enough energy to run his body. SO what they’re doing to keep him stable is they have him hooked up to a glucose drip which gives him glucose on top of him eating from me.

Thus the Wednesday after he was born Dr. B, a Neonatologist from EIRMC in Idaho Falls, came and laid down a few ground rules depending on how he acted at Madison and if he fell below he’d have to move to EIRMC. We got back amazing test results his insulin went from 147 to 23!!! I thought he was on the path up but then his sugar went down…That afternoon I was notified that he had to move to Idaho Falls. I balled my eyes out. It was miserable to me. I had just figured out how I was going to manage Layla and Leo without either of them feeling sad, and then I had to add 30 min drives on top of that. I felt lost heart broken for Layla and for Leo… and for me and Alex.

That first night in EIRMC pretty much sucked. I slept in Leo’s room and had a cold nurse and I was in a new place 40 mins away from my family. I was so angry at Heavenly Father, though it wasn’t His fault I didn’t understand the trial, not that I still do, because I don’t, but I know I need Him. I need Him by my side. Needless to say I’ve warmed up to EIRMC I still struggle a little everyday, but I know that the Atonement will help me. We’ve had some great nurses since then. Becca, Raini, Brandi, Alexsis, and more to come…

SO to explain Leo’s state right now he’s on a glucose drip that is helping keep his blood glucose up so that he can survive. Everything else is doing great. His heart rate, his oxygen level, and his respiratory rate all beautiful. Just his blood sugar. The plan first was to get him to a high level of the glucose drip and hope that his body would kick in and kick out the insulin and he would be able to wean from the glucose. That this was just a transitory thing. That his body would just take care of his hyperinsulinism . On Friday and Saturday he was doing great! His levels were high and so we were weaning him off 1 ml every three hours. He went from 17 to 8, but at 8 his blood sugars dropped too low. SO back up to 9 then by Sunday back up to 14. Lower than 17 but I started our feeling really excited there. He was doing so well I thought we’d be coming home sooner…. Then Sunday happened, his glucose dropped dramatically and I and they moved him slowly but surely back up to 14. Then Dr. A, another neonatologist came in and talked about how he sees this ending in a pancreas removal which kills me… it will turn him immediately diabetic. I don’t want that for my little boy. SO today is blood sugars are moving slowly down again and he’s on a medicine called diazoxide that helps get rid of insulin. He was eating really well up until today and I think it might be the diazoxide that’s the only thing that has changed.

Please everyone pray for Leo. Dr. A said he hopes that Leo proves him wrong. Will you all pray that Leo is amazing and proves him wrong and that if he does have insulinoma or some of those problems that they find a NON INVASIVE way to help heal him. Pray for a quick recovery for him. We have no idea when we get to come home. It’s a day by day thing.

On top of all these things, a lot of you know that we were planning on moving August 12^th to AZ for Alex to start graduate school. Well we’re still moving. I’m moving into his parent’s house and he’s moving to AZ to start school. It’s amazing… I feel like an adult… it’s weird. We are doing all these crazy things dealing with real life issues.

As for me well I’m a mommy. And I’m worried. How will this affect my baby girl, Layla? How will I do this when Alex leaves for graduate school? How am I going to be so far away from my best friend? Can I be the best mom for both of my children? Well even if I doubt myself I know that God only gives you what you can handle. Leo was sent to this family and we need him just as much as he needs us. All three of us do. Layla, Alex, and I.

Joshua 1:9 has been my favorite scripture my whole life. AND look it still is true to my life in every situation.

9 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the ^aLord thy God iswith thee whithersoever thou goest.

Keep on reading more updates to come...

i keep forgetting stuff but this is probably important to record. Leo has had 3 beautiful blessings from his dad, his grandpa, and a few wonderful friends helping. I do feel like I want him to have another blessing. I believe that those priesthood blessings and prayers are what have been sustaining our family. Thank you all for your support!

explanation of glucose drip: He's at a high number the point is trying to wean him to 0 and have him sustain his own body. I read through the blog and realized that might've been confusing...