Share Your Story Tuesday- Lincoln Isaac
The day I found out I was pregnant, I also found out that I needed my appendix removed. You could say that day was memorable. I was on birth control (we had two other boys so another baby wasn't in the plans at that time) so unexpected would be the best way to describe it. We knew there were some challenges and risks that came with surgery so early. So the best way to explain it was that I was hesitant. Hesitant to get too used to the idea that we would have another baby the following May, and hesitant to tell anyone for fear of something going wrong. Week by week things looked okay, I had some bleeding off and on that no doctor could find the cause for. But baby looked healthy through it all. Around 22 weeks I went in again with bleeding and cramping. I was told they didn't know what was causing it but every bleeding episode put me at a higher risk of my water breaking spontaneously. At 24wk and 3 days I went into labor and delivery with contractions. I was told I was fingertip dilated and definitely contracting. The doctor did everything she could to prepare for if delivery was soon and we got contractions stopped. I was sent home with instructions to come back the next night for another steroid shot. The next morning my water broke. My local hospital doesn't have a NICU equipped to handle babies under 30 weeks so I was sent to a bigger hospital. The goal was get as far along as possible. If at any point infection set in, or baby was safer outside than in, we would deliver. There were several close calls where the doctors debated was it time yet. One time they even had the staff start prepping things because it looked like it was go time. Then he calmed down and they decided waiting was best. The day I was 25 weeks I got my first shower in days. I went to sleep and woke to a nurse telling me how hot I felt. Sure enough I had a fever, she decided to put the monitors back on and I almost cried because her pushing around to find his heartbeat hurt so bad. His heart rate was in the 170s and rising, and the doctor came in and said unfortunately we ran out of time. Infection had set in and he was in distress.
February 11th Lincoln Isaac was born weighing 1lb 10.5oz. Things looked stable for a couple days then it became evident he was sick. Through labs we found out Lincoln had E coli from the infection I had while he was in utero. While he was fighting ecoli he developed NEC (necrotizing enterocolitis). NEC is where your bowels become diseased and infected and can eventually die. I remember when he was about 6 or 7 days old, Lincoln decided to show his feisty spirit, his monitor started alarming but when we lifted the isolette cover we saw this tiny arm jerking almost waving. Stuck to his hand was one of the monitors, the wire was just dangling. We couldn't help but laugh and I stood in awe of how someone so small had such attitude. At 10 days old in the middle of the night i got a phone call from the NICU. They had been watching his NEC and unfortunately his bowels had perforated because he now had free air in his abdomen. This NICU didn't have a pediatric surgery team so he needed to be transferred down to the children's hospital. When I saw him for the first time in 2 days I cried. His little belly was so swollen and a different color than normal. The next few days we waited, we watched for what the surgery team said was the right time to operate hoping we could avoid it. His first surgery they removed almost half of his intestines because they were diseased and dead. The surgeon said he was so much sicker than anyone would have guessed. Even with everything he had going on he was fighting like hell. Now we had to wait and watch. Over the next 12 days he would have 4 more surgeries. During one surgery they also removed his spleen because it too had become diseased. At some point he developed a fungal infection in his trach tube, and eventually we found the fungus in the fluid in his abdomen as well. He was on more medications than I could name, he had some of the most amazing doctors. But none of it was enough. At 27 days old the neonatologist kneeled down beside me in his room. I knew that wasn't good news. She said words I will never forget. There may come a point where we are doing things to Lincoln rather than for Lincoln. She went on to say that while we aren't there quite yet, nobody would blame you if and when you decide that this isn't what you want for him anymore. We need to start thinking about end of life care. What are you okay with, when do you feel at peace saying enough. I felt floored and said his dad is at work. She said it might be best to get him here.
I remember I stumbled through that call,
torn between crying and being in shock. Just a couple hours later I went to a NICU parent’s support group. I was less than 5 minutes away in the hospital but I needed to not be faced with that for just an hour. I heard these moms talking about their babies, I couldn't say much because what was there to say? I am having to think about giving up on my baby (I know now that wasn't the case but at first it felt like that). After that group I found a couple moms I knew from the Ronald Mcdonald house and suddenly tears just streamed down my face. I told them things were bad, Lincoln was really sick and I was having to have the end of life discussions. I remember asking how I was supposed to say anything other than do everything you possibly can for my baby. One mom said that Lincoln was in control, until that moment I hadn't thought of it that way. He really was the one dictating what happened based on how he responded or didn't respond to treatments. That night my mother in law and husband arrived, I remember having no clue what to say. My husband and I left to grab some dinner while my mother in law sat with Lincoln. We sat in the dining room at the Ronald McDonald house and a wonderful lady who I had talked to from time to time asked how Lincoln was doing. I had told her the day before that he was sick and I was feeling helpless. I guess the look on my face gave away that it wasn't good news. I shared my fears about "giving up" on my son. We had a really good honest conversation and in the end I felt like I knew I wanted Lincoln to live of course but I didn't want him to only live because I was terrified to let go. We went back up to the hospital for a bit and I talked to Lincoln. I sat beside his bed and told him how much I loved him, how much I wanted him to live. But I also told him I needed him to show me what was best for him . That we all knew he was running the show, he always had, but I needed to know what to do. So I asked him somehow to show me the right path. Unfortunately overnight he didn't get better, all the treatments they had tried were not helping. With each set of new blood work the clinical picture looked worse. The doctor came in and said the words I had been dreading. We had reached the point we were no longer doing things for Lincoln, but rather to him. I remember feeling like I couldn't breathe. I walked out of his room and quickly walked to the bathroom, I locked the door, and slowly my back slid against the door as I lost it. In the room I had to be the calm, collected mom Lincoln needed to make the best decisions possible. For just a couple minutes in that bathroom I was the terrified heartbroken mom. I got it together, splashed some water on my face and walked back into his room knowing I would hate the conversations that lay ahead. The dr talked us through if his heart were to stop did we want them to do CPR. If they were able to resuscitate him the chances he would code again were high. Until eventually they couldn't get him back. I didn't want that for my baby boy so we decided to make him DNR. Which means do not resuscitate, if his heart stopped let him go. I thought that was the hardest conversation of my life. Until a little while later his labs continued to look worse and he started to struggle more. He was always comfortable we made sure of that. We had a talk about what it meant to end all curative care, to simply provide comfort measures as he passed. I couldn't wrap my head around how my little boy was alive but not going to live. That I looked over at the baby they were asking me all of these decisions about and he still had a heartbeat. But every single decision we made that day we made out of love, we wanted the best for Lincoln. We held Lincoln for the first and last time as we transitioned him to palliative care. I never thought the first time I held him would be the same day as the last one, but I am so thankful for being able to hold him as he died.
That is what I wanted Lincoln- if he had to die that he was at least surrounded by love and feeling his parents. We took turns holding him, as I held him I sang him a song that says you’re not alone anymore. The dr came in at one point and said he was still hanging in there. It sounds silly but that gave me a tiny bit of hope, he was dying but he wasn't dead, he was hanging in there. A little while later she came in and listened and I will never forget the look on her face as she said she was sorry but he was gone. I was holding my son as he was pronounced dead. Over the next couple hours we held Lincoln as the palliative care team did hand and foot molds for us, while the nurse trimmed his hair. We held him as the guy from the morgue came up to talk about what we wanted. All while trying to get as much time as humanly possible in. But unfortunately his body and skin changed rapidly and we decided to keep our memories of how he was. We walked out of the hospital carrying a couple ziploc bags of his things, of things the hospital or palliative care gave us. I remember feeling like I had died and they forgot to bury me too. It has been almost 5 years and part of me is still missing, but I am learning to love through the spot where that piece should be. Helping Lincoln leave his legacy that love never dies.