Let's be real about Daniel McKay

 The symptoms started in late July. My blood pressure was creeping up, my head was starting to ache, and my vision was changing. I tried to ignore them at first and I told myself it was all in my head. Maybe I was  so nervous that I would get pre-eclampia again, that my brain was making up these symptoms. My OB was starting to get worried and started having me come in twice a week. My urine came back with way more protein than is normal. About 6 times the amount. I was sent to the hospital for monitoring and to get the first round of steroids just in case delivery was close. The whole time, I kept insisting I was not going to be staying and this baby was going to stay in. That time, I was right. I got to go home. 

It was really nice to have Thomas be able to stay with me. Definitely got some perks since he works there!

This picture was hanging up in the observation room. It reminded me of forget-me-nots and Pres. Uchtdorf's talk. Re-reading it was just what I needed at the time.

Fast forward a few weeks, and the doctor sends me straight to labor and delivery after my appointment. My blood pressure was extremely high and my symptoms weren't improving. I once again insisted that it wasn't time yet and that this would be the same things- a little bit of monitoring the baby and getting steroids then I'd get to go home again. But I was wrong. They called in the high risk specialist and he said I would be staying at the hospital until I delivered and he thought that would be in the  next few days. I was heartbroken. I had told Thomas early on in this pregnancy that I didn't think I could handle another NICU stay. I broke down many times during the pregnancy just thinking about it. And here we were, about to deliver a 31 weeker. 

Thomas and I played Farkle to pass the time.

They kept starving me just in case they needed to do the c-section. I wouldn't be allowed to eat or drink all day until dinner time. I was so hungry but I didn't even care. I just wanted this baby to stay put. They tried a few different medications to see if it would improve any of my symptoms with no luck. They did another round of steroids. Thomas and I had been talking and decided 8/8 would be a pretty cool birthday. Then the high risk dr came in on the 7th and said he thought we should deliver that day. 8/7 just doesn't sound as cool of a birthday.. and lucky for us someone else needed that time slot so my c-section was pushed back to 8/8 and 8am. Perfect. :)

Our last picture of us as parents of 2 kids

The time in the hospital before Danny was born, was pretty uneventful and I still had faith that this was the plan. I felt at peace with him being born at the 8th and I felt ready. During the csection, I was just waiting and waiting to hear his cry. I just needed to hear him cry so I would know how healthy his lungs were. I remembered Lydia's tiny little whimper of a cry and hoped his would be stronger. Finally, he came out and gave us a good cry. I was so happy. This wasn't going to be so bad. His cry was strong. We could do this. 

They let me "hold" him before taking him to the NICU. 

                               

At first the NICU docs were impressed with how well he was doing. After day 1, the honeymoon period was over and things went downhill and got scary fast. He wasn't responding to the things they were doing. He wasn't keeping his oxygen up. He had a PDA in his heart and his lungs weren't working as well has they hoped. He'd have to be intubated after all. It was a horrible, raw, and dark time in our hospital room. Because of COVID, Thomas and I couldn't go to see him together so we were getting bad news on our own and then texting the other one. I had held it in as long as possible, but then I just started crying. I was so nervous a nurse was going to walk in which would be humiliating so I just went to the bathroom to cry. We had FaceTimed the kids a few times and each time I felt guiltier and guiltier. They missed us and felt like we abandoned them. This would only be the beginning of wondering how best to split the time between visiting Danny and staying with Lydia and Evan and letting them know we love them, too.

My ob said I could stay a few more days so I could be closer to the baby or I could go home, I jumped at the opportunity to go home. I couldn't hold or touch Danny anyway and at home I could cry without worrying about someone barging in on me. Thomas and I both just cried when we got home. Our Danny was struggling. 

When the nurses found out we had a 29 weeker, they would say things like "oh then you know how this goes" or " this isn't your first rodeo". Yes, we've done the NICU thing before, but this time is very different. With Lydia, we expected her to do poorly and it was just Thomas and I. Thomas had just finished undergrad and I was a couple weeks away from finishing my first year of teaching. That meant we were completely free to visit Lydia anytime. We went 3 times a day and we always went together. With Danny, we expected him to do better and he struggled a lot at first. Thomas is working and I have the 2 kids at home while also trying to help Lydia with virtual school and find time to pump. It's hard to find convenient times to visit the NICU. And every time I step into the NICU, I worry about what's on the other side of the door. What new setback will we have today? I have nightmares every single night about our little baby boy.

I finally got to hold him!

He likes pulling on his tubes and wires. They've replaced his feeding tube 3 times now thanks to those grabby little fingers.

Thomas mentioned that on facebook I've been the face of hope and haven't been very real about how I'm feeling. One of the hardest parts of this, is my guilt. Since the day he was born I have felt a huge amount of guilt. Danny is struggling to live and breathe because of me. If I hadn't had those symptoms, he would still be in me. I always wonder, should I have lied? Should I have said my headache was gone and my blurry vision was clear again? Would it have given Danny the chance to get a little stronger before being born? Could he have avoided being intubated? Would his PDA have closed early on if he had had longer in me? I take every setback personally and feel personally responsible for how he is doing. It's hard. My hope is slowly wavering and my pessimism is setting in. Why was he struggling so much when he got 2 rounds of steroids? He was supposed to be able to get off the extra breaths and go to just CPAP but he only made it an hour. I wasn't surprised. Of course it wasn't good news. Then they raised the top of his isolette to see if he could keep his temperature. He kept his temperature well for 2 days but he also has to keep gaining weight. Last night, Thomas went to see him and they weighed him. Before he said anything, I knew he hadn't gained weight and he'd just end up back in the isolette instead of moving to an open crib. Sure enough, he lost 10 grams. It kinda depends on who his nurse is today and what the doctor thinks, but I'm not holding out hope. My guess is he'll be back in his isolette when I go to see him. 

To most people, putting your baby in clothes is not a big deal. For NICU babies it's a huge milestone and super exciting! Danny got the ok to wear clothes and we are super excited!!!

Before he was born, I had this vision of him blowing us all away with how well he did and only needing a few weeks in the NICU. That's not how it's going. At all.

 Every day is a struggle. A struggle to put on a good face. A struggle to ignore the racing thoughts and guilt. A struggle to make sure I spend quality time with the kids, get all homework done, and find time to keep the house at least semi-clean and still find time to visit Danny and make sure he knows he's loved, too. A struggle to have hope.

At the end of the day, I know that for whatever reason, this was the plan Heavenly Father had for us. I know He is aware of us and that He loves us. The veil is thin in the NICU and I know Danny has visitors from both sides of the veil. I know one day we'll look back at this time as a distant memory, but for now it is hard and it is painful. It's easy to post positive, hopeful things on Facebook and put on a happy face. I hope by being a little bit real about how hard this is for us will help someone else realize it's not only ok to struggle, it's good. It makes us reach out to our Savior and come closer to Him. Our struggle is real, but so is Christ.