Monday, November 26, 2012


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.


val said...

Wow Heidi. What a crazy roller coaster you are on. Prayers coming your way. My sisters little baby was at primary's last year during the holidays. It was so hard but also brought the true meaning of the season to heart. Hope your little guy will continue to be strong. He's got great parents and support system. Loves.

Lisa Riddle said...

I'm so sorry you have to go through this Heidi. I can't wait for you to get back to the street and meet your sweet little boy.

Katherine said...

You guys are amazing and SO very strong. Your sweet little boy is lucky to have such loving and devoted parents! You can do this....just try to remember that. Those doctors and nurses have a job to do and they are trained to do it and do it well! In those hard moments, take a minute to let yourself cry and then pass all the hurt, anguish and frustration to our Savior and allow Him to take it for you. The Atonement works in so many wonderful ways. You are amazing and know that I am praying for all of you, especially a sweet Linkin!

Ryan and Shannan Hoffman said...

I have just been thinking constantly about your family. We are praying for answers, for a quick recovery for Link, and for strength and comfort for you and Jason. Love you!

Lisa-Lou-Who said...

As always, out thoughts and prayers are with you. Also, the 19th ward is holding a special fast for you guys. We love you and hope you guys can come home soon. We'd love to send letters to your kids up North and tell them that we miss them. If you get a minute can you send me your mom's address?

Johanna said...

Thinking and Praying for you and your family Heidi!!! You guys are so amazing. That sweet little boy is so lucky to have you all as his family!!!

Bren said...

Heidi, you guys are amazing. We are praying like crazy for your family! I'd love to have your Mom's address too if that's okay.

Bren said...

opps, I posted under Bren's name, but this is Elise

Chelsea said...

I love that picture of you kissing Link. He has the bluest eyes!! Our prayers are with you, and sending our love all the way to Philly. Hope you guys are able to come home soon.

Patricia Potts said...

This post made me try and smile and join you on your roller coaster. It was so full of love and inspiration that I felt blessed to sit next to you. Love, mom/sis