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 ❤

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!.

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

Part 2 – First Day

May 20, 2014May 20, 2014 / stephhuff / 4 Comments

2 Samuel 22:19
They confronted me in the day of my disaster, but the LORD was my support.

That first day at Riley was such a blur. All kinds of specialists coming to look at Lincoln and talk to us. At one point they came in and covered his head in little electrodes to check his brain activity. They talked about scheduling him for an MRI that night. They said that Marion General Hospital had sent a lot of great records along with the flight team. They had done a CAT scan before the helicopter arrived and the doctors told us that they wanted to talk to us about what was happening. At this time our families had arrived and were waiting in the PICU waiting room, though we hadn’t actually seen them yet.

The doctors led us down the hall from the PICU where there were a lot of closed doors. They opened one and led us into a room with office furniture style couches and chairs. There were no windows in the room and I started to feel incredibly nervous. We all sat down and one of the lead PICU doctors, Dr. Hoskins, began to speak to us. I remember one of the very first things she said… “we don’t know that your son is going to survive this.” I immediately went into shock. If you have ever been in a car wreck, the way I felt was like the feeling you have right before the impact… except there isn’t one so the feeling just stays and stays. Dr. Hoskins went on to say that if Lincoln did survive they didn’t know if he would ever breathe on his own, eat on his own, be potty trained, or the even know that Jeremy and I were his parents. That moment in that small cage of a room was absolutely horrific.

Another doctor, Dr Brault, started telling us that she had looked at the CAT scan from MGH and it appeared that Lincoln had several stokes that night, before the seizure had begun, and they had left a lot of damage. There were black spots all over his brain, including the brain stem, which controls so many of our basic functions, which is what lead them to believe what they did about his prognosis. Many of the doctors were crying as they relayed this information, including my husband, but I couldn’t shed a tear. I could not believe they were talking about my sweet boy… just a few hours ago we were cuddling together in our bed at home, safe and sound.

Dr. Hoskins asked what we wanted as far as care, and Jeremy said that there was no question, “that is my son, do what you have to.” Jeremy asked if we could be alone and they left us to absorb the information we had received. We hugged and cried so hard… Jeremy asked if I would pray and I begged God to please prove the doctors wrong.

The social worker who had been in the room with us had waited outside the door incase we needed anything, and Jeremy asked if she would get our family… I remember telling our family about finding out we were pregnant. They were so excited! My mom screamed and my dad cried. My sister immediately wanted to start knitting something for the baby. Jeremy had been an uncle for years and now the role was reversing and his brother would be the uncle. We couldn’t wait to be parents and start our own family.

So Excited!

How different this news would be to deliver… our parents, siblings, and Jeremy’s grandpa filed into the room, and we all broke down as Jeremy relayed the news from the doctors. Our little Bubby, who had brought such amazing joy into our lives, might be taken away.

After all that information I just wanted to go back to the PICU and see Lincoln. They were getting ready to take all the electrodes off of his head so he could go down for the MRI. They had seen some good activity that confirmed he wasn’t brain-dead, which was a huge relief, but they wanted to further confirm the results of the CAT scan. We walked by Lincoln’s bed as it was wheeled to Radiology. No one else was in the waiting room as we waited for the scan to be completed. After it was over we went back to his room and the nurse told us that they had gotten us a room down stairs, and Lincoln was stable right now so we should get some sleep since we had been up since 2:30am. We reluctantly agreed. I really wanted to stay with Lincoln, but everyone agreed that tomorrow would be better if we were rested. So we kissed our little Bubby goodnight and went down to our room.

Head still red from the electrodes

As we collapsed onto the bed I began to sob… how could this be happening? Little babies aren’t supposed to have strokes! There really isn’t any other way to say it, we just begged and begged God over and over to heal our son, until finally, we gave into sleep.

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…