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