Wednesday, July 17, 2013

Link's Story

Many of the people that have read this blog know that Link died, but many don't know how he LIVED. Link had quite a journey in his short life on this earth, and our family did as well. I wanted to document his entire life adventure here & hope to have it as a separate page to keep on this blog. 


OUR "LINK" TO HEAVEN

 In June of 2012, when we had the "big ultrasound" and
found out we were having a boy, we were a bit disoriented. After three girls (ages seven, five, and three), we wondered if it was possible for us to ever have a boy. But we were filled with joy and excitement. Visions of father-son campouts, matchbox car races, and dinosaur-printed onesies filled our minds.

We discussed names. I knew it had to start with the letter L. We had names in our family that started with the letters H, I, J, K and M. We were just missing the L. My husband, Jason,  liked the name Lincoln – as in Abraham Lincoln. Good, strong, noble American name. But I wanted just Link – as in, he would link our names and our family together. In the end, we compromised and decided to name him Linkin – and just call him “Link.” His middle name, Dallin, comes from a combination of his grandpas' names - Dan and Billy. Each of the girls also have names from grandmas & great-grandmas. 

After an exhausting 18-hour labor, Link was born the evening of November 7, 2012. They handed him to me and at 9 lbs, 6 oz, I just remember thinking “Are you sure he is really mine? He is huge!” He had beautiful, enormous cheeks  and broad shoulders. We were instantly in love. Our fourth child. Finally a son.

Jason and I as well as his grandmothers got to spend some truly sweet, precious moments with him before the hospital did their first checks and tests.  That was when they first noticed that his blood sugars were critically low. He was rushed to the Newborn Intensive Care Unit (NICU) to get started on a glucose IV. We were assured that it was more of a precautionary step and that he should be able to wean off the glucose in the next day or two and come home to three very excited, anxious sisters. I remember a photographer coming into our room the next day and asking about pictures. I informed her to come back tomorrow. Link would be out of the NICU by then and we should be ready to take pictures before we headed home. The next day came, and with it came a phone call from our doctor, telling us that Link was still having low blood sugar issues and he needed to be transported to a larger regional hospital, 45 minutes away, in St. George, Utah. He said the ambulance would be there for transport in about an hour. I hung up the phone in complete shock. What was going on? This was not how it was supposed to be. How was this possible? All our other babies were so perfect & healthy! We were supposed to be able to take him home and be a family.


We spent two long weeks in the St. George NICU with Link as they tried and tried to wean him off the glucose.  Link’s sisters got to visit a few times and they were enthralled by their new brother – they loved to feed him, hold him, and kiss those chubby cheeks – even if it was only through the isolette or with him attached to any number of IVs and monitoring devices. This was a trying time. Physically, I was recovering from just having a baby. Emotionally, I was torn apart from wanting and needing to be there for my baby and also knowing that my three daughters needed me, too. Thankfully, we had a lot of support from family and friends in helping with our daughters. I spent a lot of time in prayer, asking for the Lord to heal my baby and let me take him home. I also prayed for patience, peace, the ability to learn what He wanted me to learn from this trial, and pleading for an eternal perspective. Gratefully, we had a visual reminder right outside our hospital window of eternal perspective – a beautiful view of the St. George temple. I also worked on keeping a gratitude journal to remember all the miracles and blessings we experienced along the way. They were not few. At the end of two weeks, Link’s doctor came to visit with us in our boarding room at the hospital. He said that everything they had done to get Link to wean off the glucose was not working. They were going to try a new medicine, but if that didn’t work, he was recommending transport to the Children’s Hospital of Philadelphia, where they had specialized diagnostic equipment and experienced physicians and surgeons.  Again, shock prevented me from processing this information. Philadelphia? That’s across the country! We have three little girls at home! Still… we had to do what was best for our son and all we could really do was trust God and hold on for the ride. Link's doctor also arranged for Jason, Link, and I to have blood drawn for a genetic test that might provide more answers. 

The medicine did not help Link’s condition and on November 26th, 2012, Jason, Link, two nurses, a pilot, and I flew across the country in a small life-flight plane to Philadelphia. Link’s three sisters went to live with their grandma and grandpa in Salt Lake City, Utah. I felt like my heart was being stretched in two – one part of it stayed behind in Salt Lake City with my daughters. The other part across the country in Philadelphia with my husband and son. The genetic test results came back within a couple days of arriving in Philadelphia,  showing that Link had received a recessive-mutated gene from Jason, giving him a rare genetic condition – hyperinsulinism. Hyperinsulinism is a condition where the pancreas simply produces too much insulin. The
genetic test results pointed to the likelihood that Link’s hyperinsulism was coming from a focal lesion on his pancreas. They performed a PET scan and confirmed that he had a focal lesion in the body of his pancreas.
On December 7, 2012, when Link was one month old, he underwent surgery. That day there were more than 200 people fasting and praying for Link.  The surgery was successful and he ended up having a 50% pancreactectomy. After the surgery, everything about Link’s recovery was amazing – nothing short of a miracle. They said he was in the top five fastest recoveries they’ve seen for his condition. Within a few days, Link was up to full feeds and within a week, he was taken off the glucose IV. What a joyous, blessed day that was! We finally had our “wireless Link”!

Throughout Link’s hospital stay in St. George and Philadelphia, we formed a strong bond with him. He was such a good baby – even with all the pokes and prods (typically he was poked every three hours to check his blood sugar level)  and IV lines. He started smiling just before he reached a month old and had such an amazing, pure, sweet spirit. Beautiful blue eyes. Adorable cheeks that were impossible not to kiss repeatedly. Being in the hospital with him for almost two months was so very difficult, but looking back, we also feel so very blessed for that precious one-on-one time we had with him. Especially Jason never would have spent as much time with him if he hadn’t been in the hospital so long.

On December 19th, after an 18-hour fast without dropping blood sugars, the doctor came in, raised his hands in the air and proclaimed “he’s cured! He’s a cured baby!”  Tears came to my eyes as I heard those words and I could not stop the grin that formed on my face.  After just three and a half weeks in Philadelphia  we had a cured baby. What a miracle! What a blessing!  During his recovery, we never let the family really know how well he was doing. We didn't want them to get their hopes up. We also thought if it was possible, we would like to surprise them for Christmas. When we had first arrived in Philadelphia, the doctors informed us it would be 4-16 weeks before Link could be discharged, so we bought round-trip tickets to Salt Lake for Christmas to be with the girls. No one anticipated he would recover so quickly that we wouldn't need to use the ticket back to Philly! On December 21st, we flew to Salt Lake City with our son – but none of our family or friends knew Link was coming home with us! There was a couple on the plane that we had met in the Philadelphia LDS ward we attended while we were there and we asked if they would help us carry out our Christmas surprise. After we got off the plane, Jason and I went to meet grandma and our daughters and hugs were shared and tears were shed – the girls were so thankful to have their mommy and daddy home – even if it was for a short time. But – to their surprise, the people we met in Philadelphia came a few minutes behind us with the car seat carrier. On it was a huge red bow. As she handed the car seat to us, she said “I think you forgot this! Merry Christmas!” Oh the joy and happiness!  More tears! The girls and grandma were overjoyed at this true Christmas miracle! We surprised each member of our families with the news that Link got to come home with us – he was home – for good! He was a beautiful, healthy, cured baby! He was seven weeks old when he finally was able to come home to Cedar City, Utah. To be a complete family in our very own home felt too good to be true. I wept freely many times at the miracle to be home with a healthy baby.


The next two and a half months were joyful bliss for our family. We didn't travel. We mostly stayed at home and warmed ourselves in the glow of the happiness of being together as a family. Link’s sisters smothered him with kisses and hugs. We had to set a timer to make sure everyone got enough time to hold him. We had to take turns with who got to take a bath with him, sit by him in the van, etc. He was truly loved and cherished. Beautiful memories were made and strong bonds were formed with his sisters.  He was healthy. All his follow-up appointments went well. There was no lasting effect from his condition. He grew. He smiled. He giggled and laughed. He cooed. He "talked." He played with his toes.  He was always putting his fingers in his mouth. He was getting really good in his exersaucer and jumper. His presence and effect in our family was profound. He was our miracle baby. He was our duder-dude. He was treasured and held and loved. March 3 was his blessing day. He was so incredibly handsome in his little white outfit - complete with a tiny bow tie. I remember dressing him in that outfit, trying to wipe the tears away. I just was so thankful for him and he was JUST so handsome. Both sides of our family came to celebrate him, hold him, kiss him and rejoice in his good health. 







Taken the night before he died
Then, on March 26th, 2013, without warning, our world was turned upside-down.  I had put Link down for a regular afternoon nap. When I went in to get him up and feed him, I saw that he had rolled over. I thought that was strange, but I didn't panic until I picked him up. He was limp. He was cold. He was blue. He wasn't breathing. I held him as I ran out of his room. I screamed. I called 911. I put him on our living room rug. They walked me through giving him CPR. After a while some police officers came & took over for me - giving him CPR. I called Jason. I cried. I screamed "He HAS to be okay! He has been through too much in his life already! He HAS to be okay!!" They were asking me questions & I was trying to answer between sobs and screams. I felt nauseous. I felt sick. I felt despair into the bottom of my stomach.  Jason came. The paramedics came. Jason went with Link in the ambulance & I waited till my sweet friend came to get my two younger daughters. Then I rode with a police officer to the hospital. He drove fast, but not fast enough. I called my mom. She said she had to look at the caller ID to make sure it was really me. I was frantic. We said a prayer on the phone.
When we got to the hospital, Jason met me in the hallway. We went to the room that they were working on my baby, my Link. There were no signs of life. I sobbed. I went to where his body lay & held his tiny hand and the doctor told us that he was gone.

Everything else is kind of a blur. People were there at the hospital - helping, talking, giving hugs & holding hands - our bishop, our friend, Jason’s brother.  An officer put us in a tiny room and asked a bunch of questions. I kept looking at him like he was speaking a foreign language. I was just in such shock.
Eventually we left the hospital and went home. I went into my room & sobbed. My friend brought the girls to our home & we had to tell them that their baby brother had returned home to Heavenly Father. Friends, family, ward members were coming & going - helping with the girls. Cleaning.

That night was the hardest night of my life. Every time I closed my eyes, all I could see was his little blue face. All I could feel was his cold lifeless body. We let the girls sleep in our room. Jason slept on one side of me. Our oldest daughter on the other. We were all so close & they were breathing in and out, in and out. I just felt like they were breathing for me. They were my life support when I felt like I couldn't make myself breathe. Still, even though they were breathing for me, my heart was shattered, and I could not sleep. I tossed & turned. I felt shock and grief in the pit of my stomach that kept coming. Finally, sometime in the middle of the night, I got up & went into Link’s room & grabbed the blanket from his crib. I laid down in the bed next to his crib & just sobbed & sobbed. Oh, how I needed my baby boy in my arms. How I NEEDED him. My prayers were desperation. They were pleading. They were demanding. They were "God - can't you see? Can't you see how badly I NEED him? I need him! Please NO!" They were "Oh God, NO! You have the wrong girl! I CAN'T do this! I CAN'T! Other women can. They are strong. They are courageous  They are faithful. But I can't. Please don't make me!"
After a while, Jason came in there. He laid there & cried with me.

The next few days were full of things that no parent should have to do for their child. And, indeed, my mind would NOT accept that this was happening. We chose pictures, we went to the mortuary and picked out a beautiful tiny casket, we went to the cemetery and chose a plot, we put together a program for the funeral, I put together a slideshow, we dressed my baby boy's body for burial....and all the while my mind is screaming "I am not here. This is not happening. I will wake up. He is fine. He is beautiful. He is healthy."

Words came from my mouth. I blinked. I breathed. I pumped milk for a baby that wouldn't drink. I cried tears constantly.

And in the background were angels seen and unseen. So many amazing people were coming & going. Flowers. Cards. Paintings. Gifts. Food. So much love. I have to admit that at the beginning, I didn't want any of it. I just wanted it to all go away. I wanted it all to disappear & I just wanted my baby boy back in my arms. But I felt the love & support. I felt the prayers.

Most of all, I turned to my husband. He told me everything was going to be okay - even when I was looking at him with tear-swollen eyes and asking "How? HOW can it be all right? How can we do this?"  He is my anchor. He is my rock. He helps me to breathe. To remember. To kneel. To trust.

The day of the funeral was horrible and sweet and surreal. Somehow I got up and got dressed. Somehow the girls got dressed, too. Somehow I got to the church & as a little family, we kissed & talked to Link's body. Somehow I stood there for an hour and a half while people came. They came. From all over. Family. Friends. Loved ones. They hugged me. They told me they were sorry. They told me how beautiful he was. Somehow… somehow I listened as my father gave a prayer. Somehow I tucked my baby boy into a casket of white and watched as they closed the lid – never to see his face in the flesh again until the resurrection. Somehow I sat through a funeral where heartfelt prayers were said, beautiful talks were given, memories were shared, sweet poems were read, powerful songs were sung. Somehow we got to the cemetery and I listened as my sweet husband dedicated the grave. Somehow I stayed there after everyone left with my groom by my side and watched as they put his tiny casket into a vault and placed the lid. Then somehow I left the cemetery and came back to the church and talked some more.

Now... it's been four months since Link died. It still hurts. I know it will continue to hurt, but I cannot disregard the tender mercies - the love letters from heaven -  that have happened in our lives since the passing of our son. Some of them are too sacred to share, but they are real.  This whole experience has tested my faith in the Plan of Salvation, but I can say that I know that I will see my baby boy again. I know he is happy. I know he watches over us. I don’t know why this had to happen – especially with all he went through his first two months of life, butI know my Heavenly Father loves me. At first I wondered how he could do this when he knew how much it would hurt me - and I'm sure I will keep on wondering that - but at the same time, his peace & love have abounded. There was a rainbow on the day of his funeral. The forget-me-not plant that my grandma gave me is blooming like crazy.  I've had some amazing dreams. I've heard some very healing, loving songs. Read and heard some wonderful talks.  The fact that he died on the week of Easter - with General Conference to follow the next weekend - is a complete tender mercy. I wrote this the week that he died:

Empty:

An empty crib.
An empty room.
An empty car seat.
An empty exersacer.
An empty jumper.
An empty Bumbo seat.
An empty swing.
An empty tiny chair.

Empty eyes.
Empty arms.
Empty laps.
Empty hearts.
…..


An Empty Tomb.


I am SO thankful for the resurrection of my Savior. SO THANKFUL! How horrible it would be to think that this was the end for my precious son. How horrible not to have the hope that the resurrection brings!

The Lord has taught me so very much through my son Link in his short turn on earth. The first big lesson was to find joy in the journey.  The Lord repeatedly tried to help me understand through prayer, scripture and song the need for me to submit to His will and not to wait until we got home to enjoy my son – to enjoy the experience – to cherish every minute with him – to praise God’s name – even as our family was torn apart and we didn’t know when we would be together again. I know this lesson is supposed to be applied even after Link’s death. We are still to find joy – even amidst the “furious winds” – for we know that it’s these horrible, difficult trials that will push us along in our journey to the “promised land” - being reunited with our Savior – and our son.

Link’s death has been an extremely difficult trial for every member of our family – from my husband down to our three-year-old – and extended family and friends, we have all felt the aching loss. It really does amaze me how such a tiny person can leave such a huge hole in our hearts and in our family. 


At the same time, this trial has brought us closer as an earthly family and closer to our heavenly family.  It has solidified our knowledge of the plan of salvation, the power of the priesthood, the infinite atonement of our The Savior and the resurrection! We truly know that our son is the “Link” that will hold our family together forever. 



8 comments:

Trish the Dish said...

Beautiful my sister. I am so happy you wrote down the entire story in one place. I love you so much and I'm so grateful for little Link in our lives!

Molly said...

It breaks my heart every time a new family is forced ton experience the loss of a baby. I'm so sorry Link's life was so short. I am so sorry after everything you went through- he still isn't here. I just hate to see another family suffer... I'm so sorry that you have to be a mommy to a baby in Heaven.

Keep writing. It helps. Thanks for posting this. It takes a lot and shows your strength. You are strong.

Molly said...

Ps. He's so cute. I LOVE his name!

Tiff Meister said...

What a beautiful memoir Heidi! I am so thankful I met Link and spent the time I did with him. He is so precious! I am grateful to have an AMAZING sister who shares her story and depth of her testimony with all. You truly are a strength to others. Love you!

Anna said...

Heidi, I think about you all the time. I love how you chose his name...and how it still has so much significance as he is now your "Link" to Heaven. Much love!

Molly said...

I just finally read this all the way through. It kills me to read others stories. It breaks my heart to know another mom has found her baby unresponsive. It breaks my heart you had to hear that your precious baby was gone and had to tell him goodbye for what feels like forever. I'm so sorry you had to bury him... I'm so sorry you had to celebrate his life... And put together a tribute for your baby. It's all so very unfair. People often have told me how lucky Jovi is to be in Heaven. While I am glad she's there and they we have the hope and joy that she's in a beautiful place full of happiness and she doesn't experience hurt, I still selfishly want her here. Still. After a year, I'd do anything... Anything... To bring her back. I'm so sorry life with Link in the beginning was stressful, but I'm so thankful you have good memories. And you were able to spend good time with your sweet boy before he left... The empty carseat kills me. This took me right back to the beginning... Those new, intense, paralyzing days filled with constant reminders your baby is gone. I'm just so sorry.

I'm so sorry you have had to attempt to move forward and continue living while a piece of you is and will always be missing.

I'm praying for you.

Em said...

Hi Heidi,
Thank you for commenting on my sweet Eva. Our story have many similarities. Beating the odds, and dying anyway. Three boys then a girl. Three girls then a boy.

Most of all, knowledge and hope in our saviour.

Tom/Tabitha said...

I am so sorry. I hadn't read your blog since before Link was born and I came back to learn he was here and gone again. Thank you for sharing. I also have a baby boy in heaven.