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. 

Itty Bitty Pretty Liddy

Lydia is turning 6 in 2 days! Around her birthday, I always take the time to look back at our NICU journal and our blog from that time to see how far she has come. I don't ever want to forget the roller coaster, the tender mercies, and the testimony building experiences we had. This year I'm feeling particularly sentimental about it for some reason.. let's blame the pregnancy hormones. Anyway, I felt like a post recapping Lydia was in need so here goes.

We have a bin of Lydia's memories and these are a couple of the things in there. Above is a scrub brush. Every time we went to see her, we had to scrub in for 5 minutes with one of these and use the nail thingy too. Below are a couple of her first diapers. It's hard to believe she ever fit in something so tiny!

It was today, May 7th. 6 years ago. One of the scariest days of my life. Thomas and I had graduated from BYU and we were planning to move to Texas soon. We had an OB appointment set up there and everything. My blood pressure had started creeping up, so I was put on blood pressure medication and we were monitoring it. After a long day of teaching, I headed to my OB appointment with Thomas. I sat down to get my blood pressure taken and took some deep breaths in an effort to keep it low. The nurse looked at the numbers and just shook her head.

My blood pressure was 164/103. It wasn't going down even with the medication. I thought to myself, I guess we'll have to increase the meds. No big deal. It then took my OB 20 minutes to come into the room. I sat there with my 'no big deal' theory slowly fading away. She was usually quick to come in after I had my vitals done. What had gone wrong?

Finally, she walked in the room. She said, "Your blood pressure is high and the protein in your urine is increasing. You have preeclampsia. Go home and pack your bag and go straight to the hospital. I just called them so they know you are coming and I will meet you there. You will most likely deliver in the next 48 hours."

The next few minutes are a blur as I walked out of the office in a fog. I got in the car and Thomas suggested calling my family to let them know. I started calling. No one was answering. I have a big family and tried pretty much everyone. I called my mom I don't know how many times. I tried my dad, my brothers, my sisters... why was no one answering? I was starting to freak out but kept my cool while we packed our bag and got back in the car. My mind was racing. We didn't have a name. We hadn't bought a crib. She was supposed to be born in Texas. We weren't ready. I wasn't ready. She was too little. I can't deliver yet! I had decided where we would bury her because I was sure she wasn't going to make it. I started to break down. When we drove up next the hospital, they had one of those digital signs that has lots of different messages on it. However, when we drove up, the sign 'just happened' to proclaim proudly "Level III NICU: down to 24 weeks gestation" This sign brought me peace and I was able to calm down and start having a little more faith in the situation.

I had a steroid shot as soon as I checked into the hospital to help with Lydia's lungs. The 8th was uneventful besides playing around with baby names since we hadn't decided on that yet. But on the 9th , they did an ultrasound where they saw that Lydia wasn't growing very well because of the preeclampsia. A decision was made that she needed to be delivered that day. The Neonatologist came in to talk to us about the risks and what challenges we may have. Thomas actually recorded this conversation. The doctor told us her survival rate which was actually pretty good and then he went on to tell us of things that may result- her lungs were little and she'd have trouble breathing, her brain could have swelling or minor bleeds and her heart may as well, she may have special needs anywhere from mild to severe, she may have learning disabilities, and to expect her to have delays on her milestones.

We were told we would be given an hour's notice before they took me back for the c-section, but soon after they came in saying that my platelet count had dropped and we were doing the c-section now. When they pulled the little thing out I heard the faintest little whimper. SO quiet. They rushed her to me so I could touch her cheek then quickly rushed her to a corner where they had lots of people ready to assess and work on her. I told Thomas to go over there and be with her while they closed me up.

She was alive. She had whimpered. She was a whopping 2 lbs 6 oz. Thomas followed her incubator to the NICU and I was wheeled back to my room. I felt so scared and alone when I saw my sister's face and was overwhelmed with gratitude. She had made the long drive out just to be with me. I don't think Jill will ever realize how much I needed her in that moment. She said she had gotten there and seen Thomas and Lydia in the incubator being wheeled into the NICU and then she sat with me and helped distract me. Thomas texted me updates and pictures. They told me I couldn't go see her until I could stand up so as soon as I could tell my toes to wiggle, and they did it, I stood up and said I wanted to see her.

                                  
                                         

We had no idea what a roller coaster the next 11 weeks would be. How different it would be than we expected with our first. How certain milestones would mean the world to us when otherwise we wouldn't have even recognized it as a milestone. I journaled in the NICU journal given to us so that I would never forget. There are sacred experiences written in this journal and countless tender mercies recorded. But there is also the raw emotion of being in the NICU for 77 days. The uncertainty,  the fear, the lack of hope, and the jealousy when I saw healthy babies. Here are a few of the things we wrote about:

May 10th-- I got to hold Lydia for 30 minutes! (I didn't get to hold her again until May 18th because she was put back on the ventilator and her breathing was weak)

May 18th- Thomas got to hold her for the first time!
                                   
                           

She pulls all her wires off, pulls out her feeding tube, and pulled off her CPAP even when the nurses said she shouldn't be able to because she was too little to pull that velcro off.. she proved them wrong and earned nicknames like "Houdini toes" as she'd get the wires stuck in between her toes then pull them so they'd come off. She was pushing her feeding tube out of her mouth with her tongue so they put it through her nose and she pulled it all the way out. Multiple times.
                               

May 19th- I changed her diaper for the first time and we got the news that we can now hold her every other day for 30 minutes.

June 3rd- I wrote about how hard it is to see other babies come and go and about having nightmares every night about getting bad news about her. I wrote about feeling like I am abandoning her every time we leave the NICU. I wrote about seeing a family take pictures of them holding their baby while their baby was on a ventilator.. which isn't allowed so I knew something was off. The next day, that bed space was empty. It was scary and sad to have a baby lose their life so close to our little one.
                                                 
                                        
June 4th- She wore clothes for the first time! I never would have thought putting clothes on a baby was such a big deal, but it was a huge milestone!
                                            
June 8th- Thomas made friends with another dad while we were scrubbing in and the next day their baby was taken off the ventilator and passed away. The heartache in the NICU is real.

Also June 8th- Lydia somehow caught a cold. She was put in isolation and her O2 sats were dropping. I tried to hold her but she kept dipping too low and I had to put her back. We had to gown, mask, and glove to see her.

Thomas makes the comment that having a baby in the NICU is like getting a Christmas present and not having the batteries for it. It is getting harder to leave her.

July 4th- I wrote, "The alarm that goes off when a brady cardia happens is my least favorite sound. The other night it went off 8 times."

July 20th- I wrote, "When the NP told me it would be 2-3 more weeks, I had to leave the hospital. Thomas was still out of town and I couldn't handle the news on my own. We have done our time. I just want my baby at home with me and Thomas. "

Also July 20th- feeding tube out!!

There were so many ups and downs. I remember going to the hospital anxious to hold Lydia and getting to her bedside only to see the respiratory therapists surrounding her while her oxygen alarms were going off. I wasn't allowed to hold her. I remember Lydia getting really upset and a nurse saying "oh let me take her and calm her down" and then ripping her from my arms, patting Lydia's back, and putting her back in her crib. Why couldn't I calm my own baby down? Why couldn't I hold MY baby?

July 25th, 77 days later, we were finally able to take her home on oxygen.  She has been a blessing in our lives ever since. She doesn't have the complications they warned us about. She had a small bleed in her brain that corrected itself. She met almost all her milestones according to her real age, not her adjusted age. She has no learning disabilities. She is brilliant, curious,  and above grade level for reading. She came into this world a fighter and has kept that spunky, feisty personality. We love her so much and we are so grateful she is in our forever family.