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.

I Am Not Alone

June 17, 2014 / stephhuff / 5 Comments

I carry your heart (I carry it in my heart) I am never without it. ~ E.E. Cummings

I see Lincoln constantly. Things that I never would have thought would remind me of him pop up everywhere. As I sit here outside writing, the fireflies are beginning to come out, floating over the grass. There is a soft wind blowing the humidity and heat of the day away. And I feel him. I don’t think a mother’s heart can ever fully be separated from her children. Where ever they are, young, old, near, far, earth or in heaven, she is always connected to them. From the moment your little baby begins to grow inside you, there is an unspeakable, unexplainable love.

I remember the first time I ever felt Lincoln kick. I was around 21 weeks and had been having ALOT of serious back pain. My belly was really starting to grow! I was soaking in the tub (Jeremy’s orders), reading a magazine, singing along to some Adele music on my iPod when I felt I little nudge. I stopped singing and thought, “was that what I think it was??” I sat there silently waiting and when nothing else happened, I went back to singing away. And then it happened again… and again!! I knew without a doubt that I felt my little baby kicking me! I was so excited!! My eyes welling up with tears, I hurry and grabbed my phone and texted Jeremy the awesome news. I will never forget his response, “Aww that is so sweet, he loves his mommy’s singing.” I treasure that memory and the excitement we shared together.

Everything is so different now. Life now consists of before Lincoln’s death and after. I wish I could visit the before again, but I know that for the rest of my life on this earth, I will sadly be in the after. My heart longs for my son in a away I didn’t even know was possible. Our whole lives were devoted to his care. It’s so hard for everything to just… stop. No more changing diapers, no more baby laundry, no more baths, no more anything. I still feel like I should be taking care of him somehow.

I guess that is why I am OCD about his grave. I tend to his spot like no other. I visit often, and always after it rains; just to make sure everything is still perfectly arranged. I was there recently, cleaning off the dirt that had washed onto his head stone, and as I was crouching down, I heard a noise. When I looked up there was a squirrel just a few feet away, just standing straight up staring at me. After a few moments he slowly pranced away. I looked back down at Lincoln’s head stone and said “I love you… you’re here aren’t you?” and just then the wind picked up out of nowhere and his little pinwheel decorations twirled like crazy. I felt comforted in that moment. I knew that God was letting me know that He sees my pain and I haven’t been been forgotten. I am thankful for all of His subtle reminders that I am not alone, and that my heart can never truly be separated from Lincoln, even though we can no longer be together physically.

Lincoln is always with me. He is forever on my mind and forever in my heart. XOXO

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

Memorial Day 2014

May 26, 2014May 26, 2014 / stephhuff / Leave a comment

Missing Lincoln so much as we move into these beautiful warm days. I remember how I couldn’t wait for warmer weather, and the cute little outfits I would be buying. I specifically wanted to get him a little pair of swimming trunks with a swim shirt…

We visited the cemetery today, and there were so many people there. There were other people in the baby section as well when we were there, and it was sad to know that they have experienced the same deep pain of saying goodbye that we have… I wanted to give them a hug. It was a gorgeous day and there were so many flowers and flags and sunshine, it was so nice for all the visitors.

We went to my parents house for a cookout; very yummy. It really shows that Lincoln is missing when we have our family get together. We try to do something special to honor his memory, and include him in the festivities. Today we planted an Apple tree on my parents property in the country. It was my dad’s idea, and it was so awesome! We are going to add flowers around the base and something with his name. I’m so happy to have yet another reminder of his impact and sweet memory. I love you Bubby!

Positioning the apple tree

Mommy and Daddy with Lincoln’s Memory Tree

Grandpa with Lincoln’s Memory Tree

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.

Mother’s Day – Empty Arms, Full Heart

May 11, 2014May 12, 2014 / stephhuff / 4 Comments

This is not how I imagined my first Mother’s Day would be… but who ever, when dreaming of their lives, would imagine such tragedy would be a part of their near future? So I join the ranks of mommies who have to experience Mother’s Day with their only child in heaven…

I’ve decided I am going to be gentle with myself today… I decided not to attend church today because I did not want to throw myself in that situation, seeing all the mommies with their little kiddies… just too hard right now.

I did get to experience one Mother’s Day with Lincoln while I was pregnant. I was so excited to be a mom, and couldn’t wait to meet my little fella. I dreamed about the future Mother’s Days where we would celebrate together, not knowing that this would be our only one. I’m glad that I had those days of unknowing bliss that I could dream of our life with Lincoln, even though none of those days will come to be on this earth. I am so thankful for Lincoln, and him making my dreams of motherhood come true.

First picture of mommy and Bubby after leaving hospital

Jeremy bought me this little statue for Mother’s Day, and it rings so true to my heart. I fought for Lincoln, and protected and cared for him with all my might while he was here with us. And while it was incredibly difficult, I know that the ultimate protection of him was giving him back to the One who had blessed me with him in the first place.

~ The Guardian ~

When we were told at Riley that it was time to stay by Lincoln’s bedside, I held him for hours that night. I didn’t know when would be the last time. I told him over and over again, that we had a bond that could never be broken. The connection between my son and I was so precious, so strong. I knew that even if he left this world, our hearts would always be one.

So, as I write, even though my tears are flowing and my hands are shaking, my heart is full. Full of love for my son, and full of the expectation and hope that we will be united again. And when we have that reunion, it will be eternal. So for now, my heart is already in heaven, because my son and my Savior are there.

Lincoln’s Headstone

http://www.youtube.com/watch?v=Gtud5pvF08A

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…

Holding Lincoln at Riley PICU for the first time

A little back story…

April 30, 2014April 30, 2014 / stephhuff / 2 Comments

Our little boy has always been a fighter… we knew it from the moment he came into this world with a 19 hour labor! His first week was spent on a biliblanket and daily visits to the hospital to check his bili rubin levels. Finally, we got the results we were waiting for, no more blood draws, his levels were normal! everything was hunky dory for us after that, or so we thought…

Around a few months old Lincoln was barely gaining any weight. He had begun struggling to eat from a bottle, choking, spitting up, trouble breathing after eating. We brought up our concern at his doctor visit, and after explaining we noticed about his behavior he was diagnosed with acid reflux and put on some medicine, along with the other usual things, add rice cereal to milk, small frequent feedings, etc.

After a month of that I really began to suspect that something else was going on with our little boy. At 3 months old, he had grown inches, but was still at his birth weight. People were beginning to question why he was so skinny, which of course didn’t make me feel great, but I knew we needed to find out what was going on with our baby. The acid reflux tricks weren’t really helping and Lincoln was still struggling to eat.

Our Doctor decided that we needed to try an NG tube to force Lincoln to take in the calories he needed. He told us that if this didn’t work we were going to have to start testing for possible metabolic issues, to see if there were other causes to the lack of weight gain, but Lincoln started gaining weight like it was going out of style. Around a pound a week! We were so relieved that it wasn’t a metabolic issue, but he still struggled with drinking from a bottle and it got worse as the weeks went on so we were referred to a gastroenterologist at Riley Hospital for Children at IU North.

NG Tubing it

We saw a lovely doctor there who suggested being admitted right away, having a swallow study, and meeting with a speech therapist. During our stay we learned how to place the NG tube ourselves, which was scary at first, but we became pros in no time. During the swallow study we found out that Lincoln was aspirating when he ate orally, but they weren’t sure the cause. They diagnosed him with “Failure to Thrive – Feeding Difficulties” and sent us back to the gastroenterologist, who we saw a few weeks later. She ordered a head ultrasound when we went back to home as she felt we needed to begin to rule everything possible thing out as she wasn’t satisfied with the diagnosis.

Spending the night at Riley at IU North

Lincoln had his head ultrasound and was such a good boy! The radiologists couldn’t believe how he laid so still and was all smiley and sweet. They remembered me from my ultrasound when I was pregnant and were so excited to actually get to see the baby outside of my belly. They had trouble getting some of the images they needed, and were going to put a recommendation through to our gastroenterologist to order a CAT scan, but we never got the chance to schedule one…

The Perfect Patient – head ultrasound at MGH

Beginnings

April 28, 2014April 28, 2014 / stephhuff / Leave a comment

The desire to begin this blog comes from a special place within our hearts. It comes from a place that longs to share the life of our son Lincoln Robert Huff; his memory and incredible impact on this world during his short life. We will be blogging all of our Facebook posts during the last week of Lincoln’s life as well as revisiting those memories. As we share ourselves with you all we hope to find healing and to extend healing and hope to any others who are bereaved.

Jeremiah 29:11
New International Version (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.