H-O-M-E!!!!

This was another difficult post to begin.

My emotions seem to overpower my vocabulary.
But... bottom line... WE ARE HOME!!

Post-Op

Stroller ride - NO WIRES!!

Let me see if I can explain how we got here. Link's surgery was December 7th. As I mentioned in a previous post, it went really well. Within 3 days, he was up to his full feeds (90 ml) and they were able to get rid of his IVs. When they pulled that central IV line running the glucose, I have to admit that I just broke down and cried. He had an IV running within a few hours of his birth & to remove that & be able to hold him without the IV and walk around without that huge pole... well, it was just awesome. Just completely amazing. Everyone that worked with Link in the NICU was amazed at how quickly he was able to eat and poop and recover. They said he was in the top 5 fastest recoveries they had seen. He was able to go back up to the  5th floor (endocrinology) by about the 4th day post-op.

Now... we knew he was doing really well - and we knew the possibility of being home for Christmas was looking pretty good - but we didn't want to let on to family or friends. Mostly because we met quite a few people who were given discharge dates & then had to end up staying for one reason or another, but also we wanted to see if we could bring home a Christmas surprise :)

Libery Bell

So - he got up to the endocrinology floor by the 11th. Then he had to do five days of full feeds. This time was so wonderful for Jason & I. We were able to take his leads off and walk around with him and feed him & just enjoy him. We also took a morning & did a little tour of Philly - Liberty Bell, Independence Hall, U.S. Mint, and the Double-Decker Bus Tour. It was really neat & just felt so good, feeling confident we would be going home soon. We also spent that time doing some education about coming home - some medicines we might have to give, etc. Thankfully, most of that education we didn't even need.

Link & Dr. Palladino & Enyo

After he had been on full feeds for five days, he had to do an 18-hour fast. Our doctor said that babies that have been on so much glucose their entire lives usually don't go the entire 18 hours. But Link did! I honestly couldn't be around him during that time. A mother has an intense need to feed her baby & to hear him cry & not be able to feed him would be harder on me than him. They said he did well, though, and he didn't drop a blood sugar!! The doctor walked in the next day, threw his hands in the air & said "he's cured!" If someone had taken a picture of my face at that moment, I think it would have been a mixture of crazy-silly happiness mixed in with tearful gratitude. It was an amazing moment. What it meant is that we don't have to check blood sugars. We don't have to carry a glucagon syringe. Basically... he is a normal baby now! Yes. MIRACLE.

Good-bye CHOP!

So, we really could have come home on Tuesday, December 19, but we checked out airfare & it would have been almost $300 extra (we had purchased a round-trip ticket for the 21st when we got there so we could be home for Christmas & come back for Link), so we took deep breaths & stayed an extra couple days with our baby, waiting to come home. Our discharge day was like an early Christmas. I felt rather giddy putting him in his car seat and taking him OUT Of the hospital! For good!! I have to admit, though, that I had some guilt in leaving. Thinking of all those people we had met. Babies and children that wouldn't be going home any time soon. A 9-month-old conjoined twin, waiting to leave the hospital & be with her sister, an adorable little boy who was waiting to have his 2nd intestinal surgery, a baby boy who's unwed 20-year-old mother stays at the hospital all day and they are telling her he might be there for another YEAR, a 3-year-old little boy from Minnesota fighting cancer, a 6-year-old adorable little girl with stitches all over her head, fighting brain cancer. My heart hurts for them. I really felt some guilt being able to walk out of there with a CURED baby.

Airport

The plane ride was soooo loooong. Not because of Link. He did really well & slept most of the time. But every time I thought of being able to see my girls & knowing we'd be together for good, my heart would skip a beat. It was like when I was 8 and we were going to Disneyland the next day & for the life of me, I couldn't sleep. I was SO excited. And then the tears came when we flew over the Salt Lake Valley. Talk about a sight for sore eyes.  There was a couple on the plane that we had met in the Philadelphia ward & we asked them to help us surprise my mom & the girls. So - once we FINALLY landed, we put a big red bow on his car seat, gave him to this cute couple & walked down that escalator & got smothered with hugs & kisses. The girls were so excited to see us & we were so excited to see them. My mom was there with the girls. She was on the phone with my dad when the couple came behind us, so I don't think she completely heard our friend when she came with the car seat & said "Ummm - I think you forgot this. Merry Christmas!" But when my mom saw the car seat & she realized that Link was home, she was screaming into the phone "The baby is here! The baby is here!" And, yes, there were more hugs & tears and exclamations of disbelief. There was strangers that were crying. It was wonderful. It was amazing.

Surprising Grandma & the girls

Surprising Aunt Trisha

So - we spent the next week at my mom's house for Christmas. We surprised each member of our family separately. It was so much fun. My youngest sister, Trisha, came to my mom's & Ireland spilled the beans & told her the baby was here. There were tears. It was awesome. I told my oldest sister, Cindy, that I left something in the van & asked her to bring it in :) But the BEST was my sister, Tiffany. Tiffany & I both were going to get our hair done in Trisha's basement salon, so Trisha & I planned a way to tell her. When Tiffany got there, Trisha told her that her friend dropped off her baby for just a minute or two so she could run some errands. So - the car seat was sitting there & he slept while we visited for a while & got our hair done. After a half-hour or so, he started to get fussy & Tiff asked if she could pick him up. Trisha said she thought that would be fine, so Tiff got him out of the car seat. She commented on how cute he was & what big cheeks he had - like Link. She held him for a while and he kind of got fussy. Tiffany said maybe he was hungry. Trisha laughed & said "why don't you feed him, Tiff? You're still breastfeeding." We all laughed. I asked if I could hold him & she handed him to me. I said "Well, maybe I should just feed him" & I prepared to do so. Tiffany was saying "What are you doing Heidi? You are naughty! That's not your baby!" And I said "YES IT IS!" For a second, she didn't believe us, but she realized it was true & there were hugs & tears & "you guys are SO mean!" It was just so perfect. I truly wish we had gotten it on video. We surprised Jason's mom at her sister's house. We surprised Jason's brother over Skype. We brought him to the annual Tew Christmas Eve party & surprised a lot of people, including my sweet grandma.

Temple Square

Happy to be home!

Christmas was wonderful. It was loud. And chaotic. And messy. And... just perfect. There would just be moments of time where everything was slow-motion & I was in disbelief that this was really happening. We were back with our baby. And he was healthy. And we didn't have to go back.

Merry Christmas!

Link & Grandma Devenish

He's HOME!

We stopped a night in Richfield on the 26th & had a great time visiting with Jason's family & showing off Link. Then we headed home on the 27th. I wanted to shout when I saw the "Cedar City" sign. We pulled up & wouldn't you know it, there is a sweet friend of mine, bringing in groceries. She had cleaned every room of my house, filled my fridge, brought flowers. In the basement, Santa had left a swing set, and angel neighbors had set it up for us. The girls were so excited. That entire day, the tears came. Feeding Link in his very own room. Eating as a family at our own table. Watching the girls interact with their baby brother - singing, talking, playing, feeding. I still am in awe that we are here. That he is well. Gratitude swells in my heart constantly.

Link is doing SO well since he's been back from the hospital. He's breastfeeding well and sleeping well. He's smiling and cooing and losing his old man hair. The only medicine he has right now is hydrocortisone - and he only has to take that when he is sick or has a fever. He also has some follow-up appointments with cardiology & hematology, but other than that, he is a normal baby.

THANK YOU. Thank you to all who have fasted & prayed for our baby. I cannot tell you how powerful your  prayers & fasting & acts of service have been. I cannot tell you how very much I KNOW it has helped my baby heal & get home. I cannot tell you how much comfort it has given me and Jason during this time. Thank you. Thank you. Thank you. And most of all, I thank my God. Truly, he has seen us through this trial & I am so thankful for his comfort and love. As much as I want to just pretend that the past couple months didn't happen, I know they did & I pray for the ability to make the changes I need to make from this experience & learn the lessons He would have me learn.

He is truly our miracle baby on so many levels. Miracle that he was cured. Miracle that he was home by Christmas. Miracle that he is doing so well. Miracle that we didn't end up going into next year & have our deductible start over. Miracle.

  

My Girls

As we meet people here, they ask us where we're from and why we're here. When we tell them about Link, we usually mention that he has three sisters at home. Usually they get wide-eyed and ask "How are the girls doing with all of this?"

Well, let me tell you. 

Kezia. Oh, my sweet blonde-haired, blue-eyed beauty. She had a hard time the other night & cried to her daddy "why can't you just come get me & bring me to the hospital?" She just doesn't understand why she can't just come here at the hospital like she did in St. George. She is our daddy's girl. I will talk to her on the phone & give it maybe 2 minutes before she's asking for her daddy. She loves for us to read her books over Skype. She's regressing on her potty training.

Ireland. She's kind of the opposite of Kezia. She thinks we're someplace completely unreachable. She asks me "Mom - what are you doing in that land over there?" She is a momma's girl. She has a hard time hanging up with mom. She had an owie one night when she was at Aunt Cindy's. We were just talking on the phone - not Skyping. She was trying to "show" me her owie & saying "it's right here, mom. It's right here." I said "I can't see it sweetie." She started crying & was sobbing "I know you can't. You're over there. You're so far away." She has expressed her frustration over this whole thing by taking permanent markers & decorating Aunt Cindy's walls & furniture. Sigh... She always asks when we're coming back. 

McKinley: In a lot of ways, my heart hurts for McKinley the very most. She is trying so very hard to be brave. She hasn't cried. When we ask how she's doing, she always says "good." But I know this is hard for her. She's going to a new school. Again. She's trying to meet new friends. She's trying to act like she's just fine. She's expressing her frustration by doing everything HER way. She won't let Grandma help her with certain things and she takes her own sweet time to do things. I am thankful her cousins are there to help her. 

And, me? Well, I miss them horribly ALL the time, but I can usually keep it together. Until... church. Did I mention that there is a church RIGHT next door to the Ronald McDonald House? (talk about a LOVE NOTE!) I see little children - and even little girls - all the time here at CHOP and at the Ronald McDonald House. And I'm usually fine. But when I walked into the church and sat down and this adorable little girl in the pew in front of us struck up a conversation about how she had a birthday yesterday and now she's FOUR years old... well... it was a good thing I had some tissues with me. I couldn't stop the tears. I missed my girls so very much. Seeing little children & little families in church is the hardest thing for me. Here I am sitting with my sweet husband. I should be enjoying church without the distractions. But at the time, what I wouldn't give for my distractions to be there with me!! It is just not okay to be sitting there with an empty lap and empty hands. It's at church that I feel like my heart will break in two. It's where I have a very difficult time keeping it together. 

At church and... last night. After we got done Skyping with the girls, I just fell apart. Every part of my heart screamed that this was not okay. This was not how it should be. I should be the one that they run to when they get home from school. I should be the one helping with their homework. I should be the one that tucks them in. I should be the one to give and get sweet good-night hugs and kisses. It's been over 2 weeks since I've touched my girls. And it will be a week and a half more till I'll get to be with them again. And it's just not okay. We got round-trip tickets to SLC for the 20th, coming back the 26th. I can't wait to be with my girls, though I think I'll have the same feelings about being with my baby boy while I'm there. 

It's a strange, hurtful feeling when your heart is in two places at once. 

Post-Op

Pre-Op Smiles :)

 He's done!! My baby is out of surgery & everything went well. Honestly, I know everything happens according to God's will AND I also know that all your prayers and fasting & love have made such a difference. THANK YOU. 
Link's surgeon, Dr. Adzick, met with us post-op & told us everything went really well. He said the lesion was large & mushroom-shaped & on the underside of his pancreas. He had approximately a 50% pancreatectomy, but Dr. Adzick said he should have enough pancreas left that he shouldn't be diabetic later. SUCH a blessing!!!!!!!!!!!!!!!!

Pre-Op

My Boys

We are back in the NICU with him now. He's still pretty out of it, but is moving around & really looks great.
As far as recovery time, it's really up to Link. They won't really tell us how long it will take because he has to have his bowels start working, his blood sugars need to be stable (between 80 & 180), and he needs to be eating well before they'll let him go home. Could be a week - could be 6 weeks or more... we're praying for a fast recovery.

Post-Op

Incision site looks good. 

Still a bit out of it

PET scan

ready to get anesthesia

Talking about what is going to happen

Today was Link's PET (Positron Emission Tomography) scan. To know more about the scan, click HERE. Basically, they bring him to the PET scan room (we walked him down - he was asleep in my arms :), give him general anesthesia (they put the mask on him while he was still in my arms. I had to move my head so I wouldn't inhale & go under as well!), then they give him 18 fluorodopa (a nuclear medicine - radioactive) & put him through 2 different scanners. The medicine goes through his body & to his pancreas & lights up any areas of focal lesions on his pancreas. We had to leave once they administered the general anesthesia. It was a long 2 hours of waiting till we could come & get him & help bring him back to our room. We passed the time by getting a bite to eat & checking out the Ben & Jerry's across the street :)  He did pretty well. I think the breathing tube they put in irritated his throat, but other than that, he did just great. 

Then, we waited to find out the results of the scan...

Sometimes waiting is the hardest...

Dr. Palladino just stopped by & verified that it does look FOCAL (yes!) and that it looks to be in the body of the pancreas (double-yes!!) What that means to us is that Dr. Adzick should only need to remove the smaller part of Link's pancreas. Because it doesn't look to be in the head of his pancreas, he shouldn't have to have his bowels "re-routed," which is great & also means his recovery should be quicker. 

So, now, we wait for surgery on Friday. More waiting! But we are so very thankful for this news! 

We are enjoying spending time with our baby boy. This morning (NO LIE - & Jason will back me up on this), he was wide awake & smiled - three times!! Of course, catching his smiles on camera are a bit tricky, but he REALLY did smile & it brought such a smile to MY face as well!  

Before the scan

Hangin' with dad

November Newsletter & Slideshow

Well, this newsletter is going to be different. And I'm sure the December one will as well.  Usually I have a paper that I keep on or by the fridge where I document the things the girls say or do. Since I was at home with my girls for a total of 7 days in November... I wasn't able to capture much of what they said or did. I will just have to go off memory & what others' have told me. Here goes...



FAMILY: Wow. what a month! We knew that adding a baby to our family was going to be life-changing, but no one knew just how much. Linkin Dallin Hamilton was born at 6:40pm on November 7th, 2012 at the Valley View Medical Center in Cedar City,  after 18 hours of labor. He came a week early (Heidi's water broke) and weighed 9 lbs. 6 oz. We're sure glad he didn't wait another week or more!! Jason's mom, DeeAnn, Heidi's mom, Patricia, and Jason attended the birth. In the first hours of his life, they found that Link had low blood sugar & they put him in Cedar's small NICU. Low blood sugar is common in larger babies, so we were assured that this shouldn't be a problem & we might just have to stay a couple extra days.After more low blood sugar readings, they decided to send us to the NICU in St. George, where we stayed for 18 days.  Dr. Carroll was Link's doctor & after all those days of unsuccessfully trying to wean off the glucose, he collaborated with The Children's Hospital of Philadelphia (CHOP) and it was determined that we would need to transfer there. Grandpa Potts & Cindy came down & got the girls so Jason & Heidi could take the life flight to Philadelphia. After we got to CHOP, the results from a specific genetic test came back to show that Link had a recessive mutated gene - and that gene came from Jason. This is good news, since it means that Link should have focal disease instead of diffuse disease & they should only have to remove part of his pancreas instead of the entire thing (resulting in diabetes). We will know more information once Link has his PET scan (scheduled for Dec. 4) and then his surgery with Dr. Atzick is scheduled for December 7th. It has been a whirlwind past few weeks. In between all our time in the NICU, we spent as much time as we could with the girls. The Hamiltons were SO good to have them sleep over at their house & feed us every night. The 22nd was Thanksgiving & it was as normal as possible considering we were missing our baby boy. Jason made chocolate pies. Heidi put together a veggie tray that looked like a turkey. We made some stuffing & gravy. And Keeley did all the rest! Turkey, rolls, cookies, frog eye salad... it was a bounteous feast for sure. We also enjoyed the company of Kenny, Keeley's dad. The rest of the day was spent watching football & movies, taking naps, and playing in their backyard. We also did our annual Gerald the Grateful Turkey activity. The next couple days we went to a couple different parks (we also ran into Kevin Costa & his wife), played, went to the Jubilee of Trees, talked, went to church, went to the St. George Visitor Center, got ice cream at Sub Zero, watched Brave, and just enjoyed each other. We went to Cedar City for one day and night while we packed up and got ready for mom and dad to leave for Philadelphia. That night we had a family sleepover in mom & dad's room - complete with the fire going, popcorn, reading books, and making up stories. It was so nice to spend that time as a family before we were separated. This has been quite an adventure for us as a family - especially during these holidays. We want to especially thank friends that have helped with the girls and the house, and family that has taken over with the girls and the dogs and have given so much support & love. THANK YOU. We are also so grateful to be at the Ronald McDonald house in Philadelphia - the first one ever built. They have been so good to us.

JASON: Jason has been so supportive throughout this difficult time. He saw Heidi through 18 hours of labor. He watched the girls while Heidi was in the NICU in St. George. He has been there for Linkin throughout his medical difficulties. We are also SO incredibly thankful for Jason's job. They have been so very understanding & he has been able to work as needed from his laptop & be where he needs to be to support his family. We feel so very blessed.

HEIDI: Heidi has admittedly struggled through this, but she continues to learn & grow. Recovering from having a baby & dealing with Link's medical issues has been difficult. Definitely not what she pictured. Not to mention she has only slept in her bed once since giving birth. HOWEVER, she has been the recipient of so many wonderful acts of service. It truly warms her heart. She is so thankful, as well, just not to be pregnant anymore! Having more energy, sleeping on her tummy, the soreness in her hips & carpal tunnel almost vanishing, being able to bend down, and breathe - these are all such blessings!! Her midwife was talking about not being able to induce her until 41 weeks since she wasn't dilating, so Heidi is so very thankful that her water broke & was able to be induced & that her baby is here.

McKINLEY: McKinley was SO very excited to be a big sister again - and to a BROTHER this time! She has been such a big girl through this whole time while mom & dad have had to deal with Link's health issues. She always puts on a brave smile. Both her grandmas came to stay with the girls while mom & dad were with Link, so she had fun with them. McKinley made a really cute picture of a raccoon out at night for Link & we put it up in his room. She also made name cards for every person at Thanksgiving. They were so cute. A boy, Blayden, has apparently been bullying McKinley on the school bus. Grandma Devenish found out about it & daddy called the principle, who talked to both McKinley & Blayden. He got moved to a different seat on the bus & we are all glad that things seem to be going better. McKinley & Ireland stayed with Aunt Cindy in Salt Lake for a week before going to Grandma Potts' home. McKinley had lots of fun playing with Michael's rats!

IRELAND: This situation has probably been hardest on Ireland. She's old enough to start to understand what's going on, but young enough that being apart from mom & dad has been really hard for her. She keeps asking when we will get to come home. When she talks to us at night, she has a hard time hanging up & she keeps calling us back. One time she called mom back & said "Mom - what land are you in?" and "Are you coming back for Christmas? If you are not coming back for Christmas than just call me and I will tell you that you HAVE to come here for Christmas." She cries a lot when we talk to her. We sure miss our Ireland. Ireland & McKinley stayed with the Edwards for the first week of our separation. Apparently, multiple times she used a permanent marker on walls & furniture  :(

KEZIA: Kezia also has had a hard time with mom & dad being gone. When she called daddy, she would cry and ask him to come pick her up and take her to the hospital to be with us.  Kezia stayed with Aunt Trisha while we were gone & got to play with her cousins Parker & Spencer. Aunt Trisha was so sweet & painted her nails so cute and did her hair & took her to the park & did some crafts with her. Aunt Trisha said one night she woke up at 5am & said there was a girl in her room. Aunt Trisha asked where & Kezia pointed, but there wasn't anything there. Eventually she went back to sleep, but she is sure a strange sleeper! When she had the sleepover with mom & dad she said "NO!" and "MOM" and "I want my popsicle cut in half!"

LINK: We are so excited that our baby BOY is finally here! Everyone tells us that at least he won't remember all this medical drama when he's older & mom tells everyone "you're right... he won't. But I will remind him when he's older how much trouble he was from the start!!" ;-) We all love our baby boy so very much. He has the cutest sleepy smiles. He really is starting to be alert & watch us when we talk to him. He only cries when he's in a lot of pain. He doesn't even hardly whimper now when they stick him to test his blood sugar. He's so used to it. He's gotten more coordinated with his movements now & has tried to pull out his feeding tube. One time he succeeded & they had to put it back in. We are all PRAYING that his surgery goes well & the recovery will be short. We want to get this baby boy HOME so his sisters can love on him!

Finding Joy - Gratitude

One of the first days in the NICU in St. George, I opened my scriptures, praying for help & guidance to get me through these difficult days. It opened to Mosiah 24. Here are the verses that caught my eye & my heart:

13 And it ^acame to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
14 And I will also ease the ^aburdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as^bwitnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their ^cafflictions.

 15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did^astrengthen them that they could bear up their ^bburdens with ease, and they did submit cheerfully and with ^cpatience to all the will of the Lord.

 16 And it came to pass that so great was their faith and their patience that the voice of the Lord came unto them again, saying: Be of good comfort, for on the morrow I will deliver you out of bondage.

After reading these verses, I truly felt like I needed to learn how to "submit cheerfully and with patience to all the will of the Lord."

But HOW???

Truly, I was puzzled. Every time Link's blood sugars were high, I got hopeful, I was happy. And every time they plummeted, so did my spirits. This obviously was NOT finding joy in the journey. My happiness was contingent on his blood sugars being good, not on my faith in the Lord. I felt like I HAD to figure this out. And just so you know - I'm still figuring it out - but in my frustration, I turned to a dear friend. This friend (I went to high school with her) lost her husband to brain cancer. I didn't know her well at the time, but she lived near me and I saw her at church sometimes. The thing that struck me was that even during this trial of hers - in the midst of her knowing her husband wasn't going to make it - and having to take care of him and her 2 young sons - whenever I saw her, she had a genuinely loving, happy smile on her face. Even after his death, her smile remained.  HOW did she do that? I always wondered, but now I really needed to know, so I sent her a message & she responded in her wonderful, loving way. She gave me scriptures to read & talks to read & offered her personal experiences. She is an a m a z i n g person. Truly, amazing. I feel like she is light-years ahead of me spiritually, but she is such a loving person, too. Truly Christlike.

Yesterday Jason & I read one of the talks she suggested. It's called Bread or Stones: Understanding the God We Pray to. By S. Michael Wilcox . 
It's a great talk. And something familiar came up that I wanted to share: 

Now God tends to do everything backwards; we worship a backwards God, in a sense. I say, “Lord, help me understand and then I can believe.” But in the scriptures, the Lord says, “No, believe and then you will understand.” I say that’s backwards, and He says, “No, you have it backwards.” So here the Lord says, “Be comforted, rejoice, give thanks, then I’ll answer your prayers.” And I say, “Lord, answer my prayers, and then I’ll be comforted, rejoice, and give thanks.” That is backwards.

AGAIN! Again there's the message that I need to LEARN how to find joy in this journey, even when I don't have my prayers answered yet. Even when I'm still here - and going through this trial. And so I am learning this & growing in ways I never wanted to grow. But I am seeing the need for it, too, because what if I'm constantly focusing on just the destination? Well... I will wake up one day when we're home & I will be so happy that we're home, but I will look at my baby & realize that he's already 2 months old & I will have missed all those precious newborn moments!! I will have missed the joy! And I won't be able to get that back! 

I still have a long way to go, but I am learning to smile. I'm learning to reach out to others even when I'm feeling like curling in a ball and wanting the world to go away. I'm learning that my pain & my hurt & my grief  is so small compared to so very many. I've met people that haven't been here for weeks, they've been here for months & months. I've met people who have come back for the fourth or fifth time. I am trying to smile, enjoy THIS journey I'm on, "submit cheerfully to the Lord", and "Be comforted, rejoice, and give thanks" so I can get my prayers answered! :) 

Speaking of giving thanks, I feel like I need to give thanks today for a couple of things especially:

1. YOU. You people out there. You people praying - and even FASTING today for my son and our family. It's an overwhelming feeling, knowing so many people are offering prayers and sacrificing for us. It's humbling. And I want you to know that we feel your love and concern. This next week is going to be a busy one for our son with the PET scan on Tuesday & the surgery on Friday, so this fasting & prayer could not have come at a better time. THANK YOU. 

2. We made it in the Ronald McDonald House. Seriously, SUCH a blessing! Sleeping on the couch or in a cot in Link's room was getting to be difficult. Sleep was so minimal. Being here in the Ronald McDonald House is also a humbling experience. Getting fed. Having a comfortable bed to sleep in. So many things I take for granted every day. Also - these amazing people I'm getting to know. Each one has a story. Each one is amazing. My heart fills with gratitude for the sacrifice of SO many people that made and make this house possible. Did you know we are staying in the FIRST Ronald McDonald House? Very, very neat. so thankful. 

Link is doing well. They are changing his PICC line again today to ready for his scan & surgery next week. They are also consolidating his NG tube feedings so his body can get used to regular feeds after the surgery. And they are letting us try a bottle of breastmilk when he's hungry. So far, he hasn't really been ready to eat from the bottle, but we are hopeful that soon he will! He's really starting to watch things & track things with his eyes. They got him a mobile & he's starting to really pay attention to it. We got some books, so we're reading to him. And he went for his first stroller ride a couple days ago! :)  And here's a cute video of Link's silly sleepy smiles. He does these a lot when he's in that stage of sleeping when he's trying to wake up or just going to sleep. It's so cute. The smiles start at about 30 seconds. Love this baby boy. 

Some answers & info

The past couple days have been busy. They moved Link from the NICU to the Encdocrinology floor. Then they moved all of us to another room on the 5th floor so Jason & I could sleep here with Link. We're still on the waiting list for the Ronald McDonald House.
They took out the PICC line in Link's left arm & put a new one into his left foot. That was a painful process & I hate to hear his screams. :-( The other difficult thing was that they tried to draw his blood when his blood sugar was low & they couldn't get enough & he was screaming & he ended up getting so upset that his blood sugars rose & they ended up not being able to get the sample anyway. Not fun. They also removed the PICC from his head, which is nice :) Right now he is on 30% Dextrose at 18.5 ml/hr. That's quite a lot of sugar. And now he's having some intestinal issues. Poor guy. He has been pretty good overall, though. Love this little dude.
Today was a bit better than yesterday. The biggest reason is that we got some answers on what's going on with our sweet boy. The genetic tests are back. They got Link's test & it showed one genetic mutation. It took another day before they got the results back from us - the parents. But we JUST heard that the results show that the gene came from Jason. Which is REALLY good. That means that there is a VERY high chance that Link has focal disease instead of diffuse, meaning that they should only have to take out a portion of his pancreas instead of the entire thing.

So - Link has officially been diagnosed with hyperinsulinism. If you want to know more about it, go HERE.  Jason & I watched this yesterday & it REALLY explained a lot & went through the whole process of what needs to happen. Right now, Link's PET scan is scheduled for Tuesday, December 4th & his surgery is scheduled for Friday, December 7th. I am so relieved that we are getting some answers & are looking at moving forward. Dr. Adzick will be doing the surgery & he is really THE MAN. He has done more than anyone & he has pioneered amazing surgical procedures (among which is a breakthrough in-utero Spina Bifida surgery that he was on Good Morning America to discuss).
Jason & I got to walk to the grocery store today. FREEZING! But so good to get outside finally & walk around & see all these beautiful old buildings. Also - Carrie Underwood stopped by CHOP today & it was fun to hear her answer the kids' questions :)
THANK YOU again for all the prayers & support! They have truly sustained us!

Philadelphia

I have thought about how to start this post & I'm not sure even where to begin. 

It's been a pretty amazing, intense, crazy past couple of days. My heart has been going through such a range of emotions:

Link & Dr. Carroll

Frustration that the nurses & doctors have to keep pricking & poking my little boy. You should see his poor little heels. I think about that initial PKU test & how hard that is to watch your baby go through. Think about doing that every 3 hours.
BUT ALSO...Gratitude for those same doctors & nurses. They truly care for him - they have the knowledge, the technology, and the concern that helps them care for my baby.

The Life Flight plane we took from St. George to Philly

Discouragement that we had to make this trip to Philadelphia. I mean, really, Philadelphia...what in the world!!??

Cozy cabin :)

BUT ALSO... so thankful that we made it here safely. We left at 3am this morning. Jason got to sit in the copilot chair. We made a couple fuel stops. Link was fussy for a little bit, but great for most of the time - he slept a lot. I slept a little, too. The Life Flight nurses were awesome. We really had no hitches & the weather was beautiful. SO thankful that Jason & I got to fly together. In the beginning they said only one parent could fly with him, so I was so thankful that we both could fly together & be together. We got here at 4pm Philly time. It's been a whirlwind learning protocol, meeting doctors & nurses, etc. But SO grateful that we're here & he can get the help he needs to get better & COME HOME.

Disappointment that we weren't able to get into the Ronald McDonald House today.
BUT ALSO... so grateful that they are letting us stay in a boarding room here & we get to sleep in the same BED! Yay!

Saying goodbye to the girls :'(

Extreme hurt and pain having to say goodbye to my girls yesterday. There were times I thought I wouldn't be able to breathe when I thought about not being able to see my girls for a month or more. I can't tell you how difficult it was to give them that last hug - smell their hair - kiss their cheeks. I love & miss them SO much already.
BUT ALSO... full of gratitude for my family in Salt Lake who are caring for my beautiful girls. I know they are in good hands and I'm just so thankful that our family did not even miss a beat & stepped in right away to support us in our time of need. Jason's family has been so amazing as well & I truly don't feel worthy of these awesome people.






So sad that we are here - not knowing anyone. In this huge city.
BUT ALSO - grateful to all the family to came to see us before we left. Link has had so many wonderful visitors. Both grandmas. Both grandpas. Jason's Aunt & Uncle & their spouses. My sister. Jason's brother & sis-in-law. So many wonderful people to see our beautiful boy.

Depressed that we are here at this time of year. Honestly... I can't even THINK about it being Christmastime or I start to get teary-eyed. How can I face the holidays when our family is separated? How can I listen to Christmas music without being able to dance with my girls? How can I enjoy all the lights & decorations when ours are going to sit in boxes this year?
BUT ALSO - thankful for my Savior, who this season is really all about. Through Him, I can do all things. Because He was born, I can have eternal hope.

Sad that we are the "needy family." I want to be the family that gets to GIVE, not receive.
BUT ALSO  - so very, very humbled in appreciation for those that have supported us through this ordeal adventure. The Facebook messages, texts, e-mails, calls, prayers, gifts, words of comfort... I cannot tell you how overwhelmingly amazing it is to know of & feel everyone's love & support. We are SO VERY blessed to have these people in our lives.

Heartbreaking to watch my son go through this. Sometimes it's just so hard to think that he is not just a regular, healthy newborn. He looks so good. You would never know he has low blood sugar issues. The heel pricks, the vials of blood taken for tests, the IV lines in his umbilical cord, his arm, his head. Wires & cords all over him. The endless noises & beeps. Sometimes I have to refrain from just ripping everything off of him & making a break for the door.
BUT ALSO so thankful for him in our lives. So thankful that so far he has been so good & mellow & sweet. He's let them prick him & do all these things to him with minimal fuss. He's so adorable. I LOVE kissing those cheeks. I LOVE watching him come into awareness more every day - he loves looking at mom & dad. He loves looking out the window. He loves hearing us sing to him. I love him so very much & so thankful that his issues are still so minor compared to so many. I am so very thankful for him in our lives.

Can we say EMOTIONAL ROLLER COASTER? I think Jason is feeling a little bit like this...


We'll know more tomorrow, but we talked briefly with a couple of the endocrinologists tonight. They are going to keep things as they are tonight - try & keep him stable - and then probably run some more tests. They are still waiting for the results of the genetic test I mentioned in my last post. They said that will tell them more about what they are dealing with. If Link has issues with his pancreas, they would be either focal or diffuse. Focal (a recessive gene from one of us) would be a smaller portion of the pancreas that is producing too much insulin - and they would just be able to remove that smaller portion & he should be fine. If it's diffuse (a recessive gene from both of us), he might have to have most or the entire pancreas removed & most of the kids who have to have their pancreas removed will later have diabetes as a result of not having enough insulin. If he needs surgery, they are talking 4-6 weeks of being here.

So - that's what we know right now. I'm sure this week we'll be learning more about hyperinsulinism, hypoglycemia, and how things work at CHOP, including meeting all the doctors & nurses working with Link.

Everyone has been so amazing - asking what they can do to help. At this point, I think we mostly just need prayers. Please pray for Link's doctors & nurses - that they will be able to help him, comfort him, and understand his health problems. Please pray for Link - that he can continue to be mellow and understanding and that his body may heal. Please pray for Jason & I - that we will have the mental, emotional & spiritual strength to get through this & learn what we are supposed to learn through this trial. Please pray for those amazing family members watching over our sweet girls who are missing their mommy, daddy & brother. THANK YOU from the bottom of our hearts for all your support.

Update on Link

Life can just be hard sometimes. And sometimes (many times) our expectations don't match reality. I expected to have a perfectly healthy little boy. I expected to be able to take him home in his new car seat within a couple days of his birth. I expected to let his big sisters smother him with hugs and kisses - help with burping, baths & binkis. My expectations certainly didn't include being in the NICU - let alone for 12 days now. But, of course, no one really expects that. 

Link's doctor says he's "that kid" - you know - the one that keeps him up at night, researching... trying to figure out what the deal is. For a while, he was doing great with weaning off the glucose, but at 25% concentration, 6 ml/hr Dextrose (sugar water - glucose), Link has stalled. Every time they try to go below that level, his blood sugar readings drop. They want his blood sugar readings to be above 55, but they keep dipping into the 40's & 30's. They've tried upping the hydrocortisone. They've tried upping the food - they have his feeding tube at 25 ml/hour + as much breastfeeding & bottlefeeding as he'll take. And just yesterday they started a new medicine - Diazoxide. It is supposed to block the insulin. They started the dose at 5 - today they are maxing it out at 15. It will take till Friday to really see if this medicine is going to work. And we are all P R A Y I N G it will work. Because if it doesn't... (d e e p breath, cringe)...
they are setting things up for a transfer to the Children's Hospital of Philadelphia (CHOP). This Children's hospital is where all the research & experts on hyperinsulinism are located. From their website: 
An additional cause of hypoglycemia in children includes a condition called hyperinsulinism. This may occur as a result of abnormal cell development of the special "beta" cells in the pancreas that secrete insulin or from a mass in the pancreas. Some children are also born with errors in their metabolism that can lead to hypoglycemia.

Today they are taking out his UVC (the IV through his belly button) and putting in a PICC line - and the people at CHOP recommended some labs that would help rule out some rare genetic disorders. One of the labs is a very specific genetic test where they are drawing blood from me, Jason & Link. That lab alone is $8,000 (did I mention how grateful I am for insurance?) 

Jason & I are holding up pretty good. He is my rock & my anchor. What a wonderful daddy & spouse he is.  He is watching the girls for today & tomorrow & then they'll come back down to St. George (they were here last weekend as well) so we can be a family for Thanksgiving. 

Prayers on Link's behalf are very much appreciated. We have felt them. We know that we are loved & being watched over. I truly believe Link sees some very special angels watching over him that we cannot see. I will try to update this blog again when we know more. Thanks again for all the support & prayers. 

The Adventures of Link Hamilton

I have posted plenty of this on Facebook, but I thought I'd give a few more details & pictures on the blog: the adventures of our 4th-born child, 1st son, Linkin Dallin Hamilton.

I woke up a little after midnight on November 7th (I was 39 weeks). Gosh, I sure seemed wet. I really doubted that my water had broken - it usually never breaks until RIGHT before the baby is born. However, while I knew that my bladder control had weakened since delivering 3 other babies, I didn't think it was quite that bad. And then I stood up and - GUSH - my doubts were quickly dissipating that that this was anything other than amniotic fluid. I called (& finally YELLED) to my sweet husband to get outta bed & we talked things over. This was quite unexpected. We called my friend Diane (ANGEL ON EARTH) who came to the house to be with the girls & I drove over by myself just to make SURE this was what we thought it was (as if there was any doubt as I left a trail of water walking to labor & delivery). I arrived in L&D about 1:15am or so. Jason arrived about a half-hour later. 

And then... it was a L O N G night and following day. 

I was only a 1+ when I got there & they gave me 3 doses of cytotech over about an 8 hour period before I was dilated enough for pitocin. Did I get an epidural? You better believe it - by that time I was so exhausted. And I was so thankful that I did get the epidural. The epidural was light enough that I could move my legs & feet. In fact, my midwife had me do some hands & knees positions & I could hold my own. I could feel the pressure, but not really the pain. And I'm pretty sure I would have felt some pain given that he was posterior & was up there, turning him as he came. Link didn't arrive until 6:40 PM(!!!)  He came with the cord around his neck & was pretty purple, but the purple quickly subsided to pinkish/red and was fine. I held my precious baby boy for the first time and just COULD NOT believe he was here. 

And that he was that huge. 

I knew he was a big boy from the moment I saw those huge cheeks. And then when they put him in my arms - WOW - so much different from the girls (7 lbs 11 oz sizes).  He ended up being 9 lbs, 6 oz! He was so adorable, though, and I was instantly in love.  I cherished that skin-to-skin time with him before they took him away. Little did I know that would be the last time I would hold him for a while without him being attached to some sort of machine. When they found out he had low blood sugar, they kept him in the nursery in Cedar & gave him some glucose & were hoping that things would improve. I would come into the nursery & feed him & we were told maybe it might be another couple days till he could go home. I wasn't quite prepared for the phone call from our doctor telling us that he had been working with the NICU doctor in St. George & with his blood sugar levels being so erratic and low, he felt they needed to transfer him to the NICU in St. George. He said the ambulance would be there in an hour & a half. I hung up the phone in disbelief. Everything was kind of a blur after that. Rushed check-out, paper-signing, gathering our things, watching as the emergency crew surgically inserted a line through Link's umbilical cord stump and loaded him into the waiting ambulance. I was kind of a wreck. A long, draining labor, minimal sleep, and all the post-pregnancy hormones were definitely displaying themselves as sobs and prayers and tears. 

  

So - here we are - day 5 of Link's life, and day 4 in the St. George NICU. We are staying in a boarding room one floor above the NICU, so we are able to be close to Link. The hardest part of this whole thing for me has been that I haven't been able to breastfeed him. They are worried that he is using more energy (glucose) breastfeeding than he's getting from the breastfeeding. I'm hoping that will soon change. For now I'm pumping every 3 hours. Waking up to feed your sweet baby in the middle of the night can be hard, but waking up in the middle of the night to a machine pump is just downright depressing.

So - do we know why his body is low in blood sugar? Well, Link is acting like a baby who's mother had gestational diabetes. I've been asked by numerous doctors if I was diagnosed & I tell them all no! My 28 week test came back totally fine. My weekly samples came back well in the normal range. What they are telling me is that even if I didn't have gestational diabetes, it is probably a matter of genetics. We do have some family history of diabetes. And Jason has some on his side as well. So... the poor kid gets to deal with bad genes. The GOOD news, though, is this isn't something he should have to deal with in the long term. Once his body learns to maintain its blood sugar levels, he will be fine & it doesn't mean he'll have diabetes or anything. 

So - what's his treatment plan & timeline? Well, they are giving him glucose and hydrocortisone. They are trying to SLOWLY wean him off the glucose. I say slowly because every time they try and push the weaning, his blood sugar levels drop & they have to up the glucose levels again. He's shown us that he's not going to just let them crank down the glucose & he'll adjust. He really needs time for his pancreas to stop shooting out that insulin. So - they are slowly weaning him off the glucose. Then they will be weaning him of the hydrocortisone steriod. Then they need to make sure he's going to be stable for a couple of days. So - right NOW that translates to about another week here - if he cooperates 100%. 

So - that's the scoop. It's been rough, but we have SO much to be thankful for. And in this season of thanksgiving, I want to count my many blessings & list them so I can remember how much I have to be grateful for!

1. I am SO thankful that my baby is HERE! There are not enough underlines, bold, italics, etc to express how grateful I am that my baby boy is here - on the earth, in my arms, and in our family. SO GRATEFUL!

2. I am so very, very thankful for my amazing, wonderful husband. For the 4th time, he was the force that grounded me in my labor. He was SO wonderful - multiple nurses and doctors marveled over how helpful he was & they kept saying they were going to hire him :) Not only has he seen me through the labor & delivery, but he has helped me work through it & keep it together through this whole NICU experience. There is a tiny baby girl in the room with Link & her mom is so sweet & is going through a divorce right now. I can't even imagine trying to go through something like this without your best friend & husband by your side. 

3. Our family & friend support system is unbelievable! Friends that have watched our girls whenever we have needed it. My mom & his mom - coming to watch the girls and staying to help. Our amazing family here in St. George (Hamilton's) - feeding us, watching the girls, helping us in every way. Prayers to heaven offered by SO very many family & friends. Messages from so many people asking what they can do to help. I am overwhelmed by the love, support & sacrifice of so many people. 

4. Both at the Cedar City Hospital & here in St. George... SO many wonderful, amazing nurses & doctors. Understanding, helpful, informative. They have been awesome. 

5. So thankful for this boarding room - and for the INCREDIBLE view of the St. George Temple from our window. Talk about helping us keep an eternal vision:

6. Insurance. We're still going to have some hefty medical bills, I am sure, but I am SO thankful for health insurance. It might be tight, but we should be fine. 

7. My girls. They are SO VERY excited to have their baby brother here. It's sad to have them only touch him through the isolette or hold him with all the wires, but they LOVE to kiss him & hold his hand and sing him songs. Can't wait to get him home & let them really get to love on him.

7. The weather. Still wish I was in Cedar, but I have to admit the weather here in St. George has been chilly, but just about right for me! 

8. Gospel perspective. I've had a few reminders lately through song or scripture that have reminded me that I chose to come here to have trials and see if I will choose faith instead of fear & doubt. I still have a way to go, but I  am going to choose to trust in God & His will for us. 

So - keep the prayers coming. We are certainly playing it by prayer. And waiting for the day we will have our "wireless Link" ;)

Some more pics :)