Sunday, December 30, 2012


This was another difficult post to begin.

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

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.

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.


Colby~Megan~Hayden said...

I cried reading this!! I'm so happy for you guys!! You truly have experienced a Christmas miracle!!

Roleen said...

I, too, cried reading this blog. That is just amazing what you have been through and now what you have to look forward to. God bless you and your family.

Lisa-Lou-Who said...

I am so happy for you guys! What a season full of blessings for your family. We are so glad to have you back home again!

Chelsea said...

This is the best Christmas miracle. I totally cried. So glad he is home with your sweet family.

Tiff Meister said...

Oh Heidi, what a wonderful post (besides the part where I'm a dork and don't know a stranger from my nephew...). :) I LOVE your text updates. Please keep them coming! We love you guys! Give Link and the girls big kisses from us. Love you!

Jessie said...

I'm so happy for your little family and so thankful I got to have a tiny part in your surprises. Happy new year, and best of luck to you with that sweet baby! Let us know if you're ever back in Philly.

Ryan and Shannan Hoffman said...

This is the best post ever... such wonderful news. I loved reading every bit of it! So thankful you are home as a family.

The Parry Family said...

That' s awesome Heidi. I am so happy for your cute family!