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…