When you can’t be with the one you love

August 1, 2015September 16, 2016 / stephhuff / Leave a comment

I thought I knew how much I loved Lincoln while he was here. I would’ve done anything for my boy. At Riley all I could think when I saw that sweet little baby in that hospital bed, I would’ve given anything to trade places with him. I absolutely would have died for him so that he could live.

What I didn’t understand at that time was that while he was here, at least I could still show him affection; I could still hold his hand, and kiss his face. I could lay my head down beside his on the little hospital bed because I knew our connection was so much more deeper than him needing to be awake to know I was there; our souls were connected because he was my baby. I knew that if I was close to him he would know his mommy was there.

I still have so much love for Lincoln in my heart, but there is no release of giving him the love daily. Instead it builds up, builds up and builds up until it feels like my heart is going to burst. That is part of what makes the pain and grief so incredibly hard. Loss mommies have to find other ways to show their babies love once they’re not there for you to physically give it to them. You have to find a release.

This is why I write. This is why we have our charity Lincoln’s Hope in his memory. This is why we have golf scrambles and walks and sell T-shirts. This is why we do things like visit his grave and set off lanterns and balloons and light candles. Anything we can possibly do to get some relief from the built up love we have in our hearts.

This is also one of the ways I have found some healing. The love that pours out of a grieving parent’s heart is powerful enough to change the world. That is the legacy my son has left behind. A legacy of love. God is using the love that we have for our son to make a difference in the world. Through our love for Lincoln we are able to show others the love that God has for that them.

So while this isn’t the life I would have ever in 1 million years have chosen I am so proud of my son and what he was able to accomplish during his short life. I don’t know how I could be a prouder mom of my first born. He has forever changed my heart, and this world, for the better.

Sweet Lincoln

July 24, 2015July 25, 2015 / stephhuff / 4 Comments

When we were at Riley with Lincoln, I really bonded with one of the music therapists there. She was so sweet, and would come in with her guitar and sing to him. The music was soothing… I usually just sat there and cried while she serenaded him. It was a true moment of peace in his PICU room.

I showed her pictures and videos of Lincoln because I wanted her to know that he was so much more than the silent little body lying there… he was a smiley, happy, intelligent little boy, who had an incredible bond with his parents. She sang a song to him called “Sweet Little Lincoln,” that just made me fall apart when I heard it. The words say “dear sweet little Lincoln, our sweet little boy, we love sweet little Lincoln, he brings us so much joy. And when we’re together, O how happy we’ll be, ‘cause we love sweet little Lincoln because he is so sweet.”

After Lincoln passed away the music therapist came to our room to help console us and offer her condolences. As we hugged she asked if there was anything she could do for us. I asked her if there was some way we could have a recording of the “Sweet Lincoln” song. I was thrilled when she said she would go record it right away.

We ended up playing this song at his funeral. I cherish this song, and I will always have it bring me comfort and memories of my sweet baby boy.

It is because of our experiences at Riley with our awesome music therapist, I have decided to go back to school and get my music therapy certification. I already have my B.A in Applied Voice from IWU, so I applied and was accepted late last year to St. Mary of the Woods College. I will be going through their Music Therapy Equivalency Distance (MTED) program. This certification will be an equivalent to a B.S. in music therapy. I have been taking the prerequisite psychology classes since January to get ready to begin my music therapy classes this fall. I will be heading there for a short 3 day residency in August, where I will get to meet my professors and attend some music therapy classes and seminars. I am incredibly excited that I have begun this journey! If I can touch one life the way the music therapist at Riley touched mine, I will be so thrilled. I can’t think of a better way to use my gifts and abilities to help others, honor the memory of my son, and to share the love of God.
The “Sweet Lincoln” song is below… I’d love for you to take a listen ❤

When Joy doesn’t mean “Happy”

April 10, 2015 / stephhuff / Leave a comment

“Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I will show you how.”
Matt 16:24 msg

It’s been a rough week in the Huff household to say the least… we finally did something we’ve been dreading, but knew needed to be done. We removed Lincoln’s pack n’ play and swing from the living room. It was hard, and we both cried while we did it, but we both knew it was time. The pack n’ play was still full of Lincoln’s laundry that I had washed the day before we ended up at Riley. The winnie the pooh hooded towel… the little outfit that said “daddy’s best friend” that I had waited to go on sale for weeks at Kohl’s and finally bought that he never even got to wear… it was just too overwhelming. I couldn’t bear to try and sort everything and put it away, so I just stuffed it all in a bag, and put it in his room. I think we just finally reached the point where seeing his empty stuff became more painful than the thought of having to remove them.

I have had several pictures printed and bought frames and hung them up in the living room, and we also have our willow tree items, and other momentos that make us think of Lincoln through out the house that bring us comfort and think of memories with our sweet boy. It’s more comforting to look at those things it seems like at this point.

I still go in his nursery though. It’s difficult to go in there, and I don’t do it everyday, but I always at least look in there daily. His smell is still there. I whisper up a prayer of thanks every time I can still smell my baby, and can feel any sort of closeness to him.

We’re just trying to focus right now on anything that can bring us moments happiness. I always have joy, no matter what because I know I will someday be with Lincoln again, and I serve an awesome Lord that loves me so, so much, that He made it possible for us to be together forever. But for now, we are here… always having joy, but not always happy. Those moments of true happiness are rare, and I know in my heart they will always be tainted with grief. I’ve accepted that.

It’s so easy to become discouraged, as I see other young families and mom’s with their babies and children… why do they get to have it so easy, and us so hard? How are we going be patient as we wait to come up with funds to try to have more children? We were so excited to find out it would $15,000 instead of $26,000 or more, but $15,000 still is an incredible amount of money. It’s at these times I just simply have to trust. It’s so hard, but I literally have to make a conscious decision to do so, and say to myself, “I trust in Jesus.” He is better than anyone at making impossible situations possible. We have seen it in our owns lives over and over again. And so we wait, and we trust.

We keep pressing on. Towards what we are passionate about and what we feel that God is calling us to as we seek to help others and share with them the love that has been so graciously given to us.

I want to say thank you to everyone for their prayers and kind words and for donations that have been made to help us on our journey. I was so worried about making the fundraiser, that people would think we were just wanting money and asking for handouts, but my wonderful friends and family really made me understand that this isn’t what it is at all. What we are doing is opening ourselves up and allowing God the opportunity to work. We are just showing up and saying “we trust in you” and believing that He really can do anything.

“Commit thy way unto the LORD; trust in him; and he shall bring it to pass.“

Psalm 37:5 kjv

A Year Without You

March 21, 2015 / stephhuff / 3 Comments

I haven’t written in awhile as the emotions have been pretty intense… sometimes there are no words when your hurt goes so deep. Exactly one month today ago today, we had the one year anniversary of our dear Lincoln passing away into heaven. It has taken me this long to be able to write about it.

Jeremy and I both had the entire week off from work leading up to the actual date…
We spent it relaxing and spending lots of needed time together.
Our wonderful family and friends spoke encouraging words to us throughout the week.
I had a girls day with one of my best friends.
We received a beautiful care package from good friends.
We spent a fun day in Indy with friends.
Our wonderful church family surprised us with a weekend away.

We were blessed.

Friends and family also messaged us with “good deeds” that they were doing that Saturday in honor of Lincoln. Some of things were donating bibles, clearing snow from neighbors driveways, paying for other’s meals at restaurants, etc. It was so comforting to hear of the good that Lincoln inspired that day.

We also watched videos of us singing to Lincoln at Riley the night leading up to him passing away that we haven’t seen since he left us. After lots of thought, we have decided to share one of the videos. It was an incredibly personal moment, but the presence of God was with my son his whole short life, and He was there with us in that room as our sweet boy slowly began slipping away.

In this video, we are singing a song to Lincoln that Jeremy wrote called “What a Day”. The lyrics speak about what an amazing day that it will be when we finally see Jesus face to face and will sing praises to him in person. To think that just hours later my own son would experience just what this song speaks about… it just overwhelms me. I can barely see to type as I cry thinking about holding him for the last time, kissing him for the last time… but then the Father whispers truth into my heart; that while those may have been the last times on this earth, I will hold Lincoln again someday and kiss his sweet face. And what a day that will be…

As The Dreaded Day Approaches…

January 23, 2015January 23, 2015 / stephhuff / 14 Comments

Lincoln’s Build-a-Bear “Spots”

When I first began this blog, I was telling our story day by day of our experience at Riley. I had to stop and give myself a break because I just couldn’t handle the emotions of reliving those days as I wrote. It helped at first, but with Jeremy struggling at work with PTSD and me working and also trying to keep our bills paid and everything, it proved to be too much to finish at that time.

But I think I’m finally ready to continue it next month. It feels like an unfinished book that needs an ending. I think it will help me process my grief in the upcoming month. I have to be very careful when I let myself dwell on events of that week, or I will be sinking into a bottomless hole before I know it. The memories cause extreme emotional and physical reactions. Before I know know it, I’m right there back in that little PICU room reliving every moment.

February 21st will be one year since Lincoln left us. Jeremy and I are both taking the entire week off from work. This day weighs heavy on my heart and mind as it approaches. I just can’t believe I haven’t been able to hold and kiss my sweet baby for almost a year. It doesn’t even seem real. His swing still sits over beside the tv. His play pen is still out with his folded little outfits and towels still stacked from the laundry we did the days before he died. I’ve moved a lot of his things just into his nursery because they hurt so much to look at every day. His stroller and car seat. The unopened high chair he never got to use… But those last few things I haven’t had the strength to move yet.

I tried to clean out his play pen but when I came across one of the last outfits I bought him, that I had been so excited to buy, that he never got to wear, I just couldn’t do it. Our grief counselor once told me that we shouldn’t push ourselves to clean and move things we aren’t ready to because you can only do it once. And right now we’re not ready. I don’t know when we will be. And that’s ok.

Please keep us in prayer my friends as we approach the anniversary of the death of our son. It was truly the worst day of our lives. I actually feel guilty for even saying that because it was also the day that Lincoln was set free from his painful and diseased body, and made whole and new in Christ. So while my mommy heart knows that was truly best for my darling baby, that doesn’t mean that my heart wasn’t shattered that day too. All my hopes and dreams of a toddler running around the house this winter, first days of school, playing football and piano, years of birthdays and holidays and so, so much more were taken from me in an instant. And I have to live with that the rest of my life. Everyday he is missing. 50 years from now he will still be missing.

God give me the strength to face each day with courage!.

Genetic Testing Results

September 25, 2014 / stephhuff / 1 Comment

Today was the day we’ve been waiting for. Time has flown, and yet at the same time I can feel each second ticking by, so slow, one after the other. It has been emotional day…

We finally heard from Riley this afternoon about our genetic testing results. Jeremy and myself are both carriers of a recessive mutated EARS 2 gene which when put together, presents as Leigh’s Disease. Every child we would possibly conceive in the future would have a 1 in 4 chance of being born with Leigh’s Disease. Because of this fact, it is the recommendation of the doctors that we should not try to have any more children naturally, since Leigh’s Disease is a death sentence. If we still want to try to have our own children we will need to have IVF if we want a guarantee they will be disease free.

This has been a pretty devastating blow to say the least. We knew that it was a 99% chance that this would be the results, but to know for sure that we can never try to have any more children on our own is just crushing. I couldn’t stop crying at work today, so I went home early. I appreciate my coworkers so much as they have been so supportive. Sometimes you just need people to hug you and cry with you, and they did just that for me today.

There are just so many different emotions we are experiencing right now… sadness, guilt, fear, uncertainty… when will we ever get to be parents again? What if I accidentally get pregnant and have to bury another child? Why do we keep receiving knockdown, after knockdown?

While we may not have any answers, and may never have some of them, we are trying to face our new knowledge with courage. Whenever I feel like giving up I look at my Lincoln bracelet. That little boy showed this momma what it truly means to be strong and courageous. If my 5 month old son can fight with all his strength until his final breath, than so can I. We are going to make him one proud baby!

Please continue to pray for us and our families as we process this news and what it means for our family. We appreciate all the love and support more than we could ever let you know. I ask also that you will consider donating to Lincoln’s Research fund. You can do so by clicking the link above on the menu bar. The money goes to developing life prolonging treatments and hopefully someday a cure. Our son will help future little ones and maybe keep other mommies and daddies from saying goodbye so soon. Love to you all.

My Lincoln bracelets

Riley Memorial Service August 17, 2014

September 14, 2014 / stephhuff / Leave a comment

We were recently invited to attend a memorial service in Indianapolis hosted by Riley Children’s Hospital to honor all of the children who had recently passed away under their care. I was nervous as we made the familiar trek to downtown Indy accompanied by my mother, sister, and brother. I did not know what to expect; of the event or my emotional state when the service would begin.

When we walked into the service there was a harpist playing beautiful music. We were instructed to write Lincoln’s name on a little felt square and add it to a Memorial Quilt that was set up down in the front of the room. Jeremy and I walked hand in hand over to the quilt and found a spot for our little sweetie’s name just as the service was about to begin.

They began with a prayer and then began to read the names of the children who had passed. There were so many names… I couldn’t believe it. All of us sharing the same pain of losing our children was overwhelming. We collectively held our breath as the chaplain read – Lincoln Huff. Jeremy and I stood as a very nice nurse brought us each a flower and a little memory pebble to carry with us where ever we go. My family cried more than I did, but I seem to go a little numb during these type of events. I honestly think it is my body’s way of protecting itself from the extreme pain and grief. If I let myself go, I know I will completely lose it and I usually only do that in the privacy of my home. I don’t think it’s unhealthy, just a way that I’ve learned to cope.

For each one of the children whose parents weren’t able to make it they placed a flower in a vase that began empty but slowly filled up until it was over flowing with carnations. They also placed little pebbles around the vase for each baby that never made it out of the NICU before it passed.

The parents were then directed to come down and surround the table that the flowers were on and we lit candles that surrounded a single rose that symbolized hope, strength, and courage. The chaplains also read Psalms 23. It really was lovely.

After the service we were directed into the lobby for refreshments, and we ran into one of the dear ladies who had been in Lincoln’s room the day that he died. She and a nurse had helped us make molds of his little hands and feet. I just had to let her know that those are now our most treasured possessions! And she remembered us. I was a little surprised, but relieved we didn’t have to try to explain who we were. The work that they do is just tremendous for parents who are losing everything… they provide something tangible to remember your child by.

It was hard being at Riley again, looking down those long hallways that I had walked so many times only 6 months earlier… just more reminders of the constant ache in my heart for my son. Still, I am glad we went. I don’t want to have any regrets when it comes to honoring him and keeping his memory alive. Thank you Riley for speaking his name.

Memorial Quilt

Lincoln’s little quilt square

Flowers and pebbles representing the recently deceased children

Jeremy and Stephanie surrounding flower table with other parents

Hope, courage, and strentgh

Photo of Lincoln we shared with other parents

Safe in My Arms

July 29, 2014 / stephhuff / 4 Comments

Well, it’s official. Lincoln has been in heaven longer than he was here with us, sans belly time. It is so unbelievable. Time has pretty much stood still for us, and yet moves at lightening speed all at the same time.

It’s absolutely exhausting missing my son. I was on my way to work today when In My Arms by Plumb came on the radio. The song talks about holding your baby safe in your arms through the storms of life. I couldn’t help for feel the intense pain from my own empty arms that ache for my son. I know that he is safe in the arms of the Father until we can be reunited. That knowledge brings comfort, but it doesn’t stop the tears from flowing. I’ve copied a link below so everyone can listen, and if you’ve never heard it, you will soon know why I was a hot mess by the time I got there. I always wear waterproof eye makeup now because I never know when a cry fest might arise, so of course on the day I ran out, I have a mini meltdown. I walked into work with two black stripes running down my face.

I wanted to give an update as far as Jeremy and mine’s genetic testing. We found out 3 months ago exactly what type of Leigh’s Disease that Lincoln had, and we have been waiting to hear back from our contact at Riley Children’s Hospital about if our insurance will pre approve our testing. We finally heard back last week but it was not the news we were expecting. The doctor we’ve been working with lost our info and never submitted our application for pre approval. So we’ve basically been waiting these last 3 months for nothing. Very frustrating. Please be praying for quick responses from doctors and our insurance companies.

I submitted Lincoln’s name to be worn by a volunteer at the annual Walk to Remember in Chicago that is hosted by the Compassionate Friends. It was very moving to see the picture with his name listed

Walk to Remember 2014

I’ve learned already what deep sorrow I will forever carry on this journey as a child loss mommy. I have a Lincoln sized hole in my heart and I know that it will be there until we are together again one day.

Part 3 – Valentine’s Day

June 7, 2014 / stephhuff / Leave a comment

“If there ever comes a day when we can’t be together keep me in your heart, I’ll stay there forever” ~ A. A. Milne

The doctors performed rounds early every morning. They would go around to each patient’s room in the Pediatric Intensive Care Unit and stand in the door way with all of their clip boards and traveling computers. They would discuss Lincoln’s progress, how things went the previous day, medications, test results, possible diagnoses, and the action plan for the day. Jeremy and I always tried to be there during the rounds so we could listen in and make sense of all the medical lingo they were saying in reference to our son. They decided to try and slowly turn down Lincoln’s respirator because he appeared to be breathing well, and he was initiating most of his own breathing without the help of the machine. I remember thinking how crazy that was that they could tell all that from looking at a monitor.

The results for Lincoln’s MRI had been analyzed and Dr. Brault wanted to know if we were interested in seeing the images. They brought in a computer on wheels that had a large screen and immediately started walking us through several pictures of his brain. It was so surreal. The pictures were hard to look at, but Jeremy and I both wanted to see them. Lincoln’s brain glowed brightly on the screen, but we quickly saw what had been alluded to the previous evening… he had dark shadowy splotches all over his brain. We were told that all of the dark spots were where brain death had occurred, and that they were keeping a close eye on Lincoln for brain swelling because sometimes dead brain tissue can also damage the surrounding good tissue. The doctor than pulled up the image of Lincoln’s brain stem and the entire center was black. I was crushed when I saw that picture. The darkness in the brain stem was what led them to believe that he would never be a functioning baby again. In a way, viewing the pictures kind of made everything sink in and become tangible. Dr. Brault also said the results showed that Lincoln did not have a corpus callosum, the part of the brain that connects the left and right hemispheres of the brain. The side effects can range from undetectable to very serious. They thought that the missing corpus callosum more than likely attributed to his eating difficulties.

Dr. Brault said that because of clear metabolic issues, symptoms and the missing corpus callosum, they now believed that the top contender for Lincoln’s diagnosis was Leigh’s Disease. Leigh’s Disease is an extremely rare neurological metabolic disorder. We were told that there is no cure,and very few treatments, but they were going to begin them right away. They were going to be giving him a “cocktail” of vitamins and a special diet, along with the sodium bicarbonate (for his acidosis) and seizure medication.

If you would like to read more about Leigh’s Disease, please visit these sites that helped me to understand a little about what was going on in my little boy’s body. It is a very complicated and rare disease, with several variations, and multiple inheritance patterns.

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.8637485/k.8A22/Leighs_Disease.htm

http://www.ninds.nih.gov/disorders/leighsdisease/leighsdisease.htm

http://ghr.nlm.nih.gov/condition/leigh-syndrome

We were left alone for awhile to let all this new information sink in. There are too many thoughts, emotions, and feelings to even try to convey here. A nurse walked in and began hook up Lincoln’s treatment to his IV. She asked if we were doing anything for Valentine’s Day. I merely said “no” amazed that she asked us that, first because I forgot it was Valentine’s Day, second because how in the world could we possibly be thinking of going off and celebrating right now?? Looking back now, I know that Jeremy and I “celebrated” our love in our own way that day by supporting each other and being there together going through a tragic situation side by side. We never lashed out or blamed each other for anything. We were standing together with our son firmly on true love for one another. When you go through something like this it changes your relationship forever. You either grow closer together, or let it tear you apart. There cannot be an between. We have learned to really cherish each other.

I remembered that somehow in the rush of swinging by our house to get some clothes and stuff on the way to Riley that I had somehow managed to grab the bag that had the Valentine’s hat and socks in it that I had bought Lincoln just a few days ago. I had Jeremy run and get the bag from the car after asking the nurse if it was ok. When he returned we put on his little “Heart Breaker” hat and socks that said “I ❤ YOU”. I stood by him looking over him as he laid there in his festive little ensemble. I remember think that the “heart breaker” on his hat had kind a double meaning because our hearts were breaking, just not for the reason the hat was implying.

Bubby in his Valentine’s outfit

I always dressed Lincoln in the month’s holiday apparel when I took his 1 – 4 month pictures. I was so terrified that there wouldn’t be a 5 month picture to add to our collection. The nurses just raved and raved over his little “outfit”. I had to agree that he was the most adorable boy ever. Jeremy and I decided to go get something to eat and talk some things over, and while we were gone the nurses made adorable Valentine’s for us from Lincoln with his foot prints on them. They are some of our most treasures possessions.

Valentine’s from Lincoln to Mommy and Daddy.

I wanted to get something for Lincoln because I knew this could be our only Valentine’s Day together so I ran down to the gift store before they closed with my sister and my cousin Amber. Now mind you, there are three gift stores in Riley, so you can imagine us running around like crazy people trying to find these shops. We ended up going to two of the three because the first one just didn’t have a card that I liked well enough, so off we go, running to the next store in a mad dash! I ended up getting a little tiger, a balloon, and a card for Lincoln. Other people bought him cards and animals as well. The end of his bed filled up pretty quickly.

Lots of Valentine’s for our baby!

Jeremy broke down as we signed Lincoln’s card as he realized he had never signed “Daddy” before. It was a long, long day, but we tried our best to make it special for him. I whispered in Bubby’s ear that he was my little Valentine and gave him a kiss on his little cheek, still puffy from trauma. He is the best son I could of ever dream for… You will always be my special Valentine Lincoln, mommy loves you! ❤

Be My Valentine

First Night – Part 1

May 5, 2014 / stephhuff / 16 Comments

Lincoln slept in our bed most nights the last few months of his life. Sometimes on his boppy pillow, other times snuggled up close in my arms. This is one thing that we have never regretted… well meaning friends would always tell us we were making a huge mistake and that we were spoiling our son etc… my Grandma told me that if it works for you, then it works. My mom also told me so many times to follow my “mommy instincts,” and now, looking back, I’m so glad that I did. We had so many extra hours of closeness and cuddling that I cherish so dearly. We also wanted him close because of the issues he had been having because they effected his breathing at times.

Feb 13, 2014

Jeremy had fallen asleep down stairs in the recliner as he does sometimes, while I had fallen asleep after feeding Lincoln in our bed, around 11 pm. He was laying in his boppy and I was on my usual side. I woke up suddenly around 2:30 am, and jolted wide-awake as I looked down; Lincoln was cuddled up beside me! I thought, “How in the world?” Now, let me mention that he had pretty low muscle tone for his age; he didn’t have head control and hadn’t started rolling over yet because of his issues, but we had not been given a definitive answer what the actual cause was at that time. So in other words, if you put him in his boppy, he stayed there. So how in the world did he get over by me? He seemed fine, so I picked him up and got his milk ready for a feeding. He ate ok, Jer came to bed and I put Lincoln in his rock and play sleeper, as I was still a little freaked out by his moving around so much while I was sleeping.

And that’s when the grunting started… I will never forget that sound. It was almost like Lincoln was constipated and that’s what I thought it was at first, since he had some issues with that recently. We tried bicycling his legs and giving him some medicine, but nothing stopped this almost rhythmic grunting, all the while he kept looking at us and was alert. We discussed calling the doctor, but we were starting to think something was really wrong, and maybe we should head to the ER. It was right after that that Lincoln’s eyes floated up to the left and he became unresponsive… I knew right then he was having a seizure. We are literally less than 5 minutes from MGH, so we flew to the ER.

They cut his clothes off and went to work right away, trying to get him on IV meds to stop the seizure… time was standing still as they searched and searched for veins, not finding any as his little body was clenching everything deep inside. The ER doctor came and spoke to us, and said she was calling Riley to see if their Life Flight helicopter was available to come get Lincoln, and that they were going to do everything they could for him while we waited for them to get there.

Lincoln ended up seizing for about an hour before everything was said and done. As the meds began to kick in, he finally became still… so still that it was almost scarier than the seizure itself. The ER staff let me hold Lincoln during everything while we were there; I sat on an ER bed with him, which I was so grateful to be able to do. We found out the Riley helicopter was on the way and the ER doctor wanted to do as many tests as possible while we waited so no time would be wasted. They drew blood, and he had a cat scan.

When the helicopter finally arrived it was such a relief. They decided to intubate before they left and run an arterial blood gas test. An arterial blood gas (ABG) test uses the blood from an artery to measure the acidity (pH) in the blood and the levels of oxygen and carbon dioxide in the blood. It is also used to check how well your lungs are able to move oxygen into the blood and remove carbon dioxide from the blood. His pH levels were so unusual they thought the test was wrong, and did it again… same results. The nurse ran to call the doctor at Riley and came back with some sodium bicarbonate to give him… she said it was to basically buy some time and they needed to hurry. So terrifying.

We weren’t allowed to ride on the helicopter with Lincoln, so we had to kiss him goodbye and entrust our baby boy’s life to these kind strangers. I remember his skin was so cold when I kissed him it startled me… I prayed that I would never have to experience that ever again… As we walked out to the car to head to Riley the helicopter lifted off, and I completely lost it. My baby was in there and I couldn’t be with him! So we started our journey. The most excruciating car ride of my life at that point.

Riley Life Flight – Getting ready to take off

On our way there we got a call from Riley that Lincoln had made it there safely and they needed permission to place a central line in an artery. The doctor said that he was very sick, and asked if we would be there soon. We said we were on our way, so she asked if we had any questions… I said asked her to please just tell me my son would be alive when we got there… again, she said “he is very sick.” I can’t even begin to explain the shot of fear, pain, and adrenaline that shot through me when she said that. I prayed and prayed, “Lord, please, don’t let him die!”

Finally, we arrived and the lady at the front desk knew exactly who Lincoln was and gave us directions to the Pediatric Intensive Care Unit. As we arrived, we walked past the rooms and headed to the PICU desk to see which room he was in; that’s when Jer saw him. I ran into the room and there was my little baby, lying on that bed attached to so many machines… I thought I was going to fall over, but I was so relieved he was alive! The nurse taking care of him was very sweet and doctors came into to see us right away as news spread fast that the parents had arrived. They began to tell us that he was stable now after a successful resuscitation when he arrived. I could not get past the word resuscitation. So hard. to hear the doctors say…

I did get to hold Bubby when we arrived, I was so thankful and relieved that I could! He was out of it from of the meds they had given him, but he was alive! And through all the wires and tubes and tape they had on him, he was still my precious baby…