Grumpy Monkey

One of my favorite times of the day is book time during our nightly routine. It's a time when we calm down, climb into bed with a flashlight, and share a favorite of mine-books. Last night, we read a book we've read several times together but I found myself choking back tears as I finished the book. It hit a little too close to home. I quickly shoved those tears down so as not to ruin book time with the kids and made my way through the rest of the stack of books. The book that had me almost crying is called Grumpy Monkey. 

Grumpy Monkey is a cute story about a monkey named Jim Panzee that wakes up to a wonderful morning but doesn't feel like it's a wonderful morning. His friend Norman keeps saying Jim is grumpy, but Jim insists he's not grumpy. As he goes about his day insisting he's not grumpy, his friends continue to say he IS grumpy because his brow is frowed, he's frowning, or other physical signs. So Jim corrects them. Now he doesn't look grumpy anymore. He looks happy! But he doesn't feel happy inside. 

His friends can't seem to understand how he could possibly be grumpy on such a wonderful day. They tell him all the things he should do to be happy- dance, take a bath, laugh, take a nap, etc. Jim doesn't feel like doing any of these things. He just doesn't want to. He explodes at his friends and runs off on his own. 

A little later, his friend Norman finds him. Norman is sad because he danced with porcupine and got hurt. What does Jim do? He just sits with him. And both of them agree that right now they don't feel happy. And that's ok. They will feel happy again soon and they already feel a little bit better since someone is sitting with them letting them just sit with their emotions. 

I cannot tell you how many times I have felt like Jim. Today is a wonderful day so why don't I feel that way? What is wrong with me? I can slap a smile on my face but it doesn't reflect my inner turmoil. This has been especially true as of late. 

This NICU stay has been hard for many many reasons. I have felt so alone. But I have also felt the pressure to be strong and focus on the good. 

It's important to note that Jim's friends were trying to help. They weren't trying to be mean or spiteful. Similarly, well meaning people have bombarded me with "shoulds"- you should be happy he's progressing, you should be more grateful and focus on your blessings, you should be happy he's in Conroe now, you should be more patient, you should try serving someone else, etc. 

Several years ago, I was telling my counselor how overwhelmed I was about all the expectations I was failing to meet- I should be happier, I should be a better example, I should be better at keeping the house clean, I should be a better mom, and on. She said something I will never forget, "Stop should-ing all over yourself and don't let anyone else "should" on you either." The "shoulds" are too much and I will always fall short. I know where my weaknesses are and don't need them pointed out to me. Am I saying that we can just be lazy and have no expectations? Absolutely not. But we can be a little easier on ourselves and be ok with where we are and try to let go of the expectation to be everywhere and do everything perfectly all on our own.

Sometimes I feel like the way I'm feeling is bad. Like it's a sin to have depression or feel the anxiety and loneliness. Something I should repent of. I mean how can I possibly feel so sad and scared when Heavenly Father has given me so much? Everyone telling me the things I "should" be doing leads me to feeling like my emotions are wrong and bad.  I'm slowly learning that it's ok to feel emotions besides happy. It's ok to be sad. It's ok to be scared. I am not suggesting we just mope around all the time. There is a time when the moping is over and it's time to pick ourselves up and push through. But we can also take the time to sit with our emotions and just feel them. 

Like Elder Holland so wisely said, "tears are alright." This concept is one I am still learning. I am still learning it's ok to be sad and that it's ok to cry when so much of the world insists we "put on our big girl panties and deal with it."

I have felt more alone this past year than I ever have before. I don't think I'm the only one. So instead of judging, wondering how others could be so sad when it's such a wonderful day, or "should-ing" on all of our friends, let's instead commiserate and validate. "Mourn with those that mourn." Let's sit with them and say "what you are going through is hard and you must be sad." Give them a shoulder to cry on. A non-judgmental shoulder, full of patience and love. Thomas S. Monson said, "We were not placed on this earth to walk alone." So why do so many of us feel so alone? And why do we suffer more than necessary through our trials as we insist on doing it all on our own and wear it as a badge of courage that we didn't need any help? 

I hope while you struggle through the trials of life, you feel validated and loved. That you don’t “should” all over yourself. That you recognize and take advantage of the army of angels both on earth and in heaven in your corner ready and willing to mourn with you. 

Lessons from the NICU

 Sister Bonnie H. Cordon posted on facebook a few days ago about a bouquet of flowers she received. As with all flowers, the bouquet started to die so she was ready to throw them away. She carried them to the trash and turned them upside down to empty them into the can but they didn't move. She tried again and shook a little harder, still nothing. As she pulled the arrangement apart, she noticed small coils, wires, and lattice hidden being used to make the bouquet strong and long-lasting. She then related it to us. Sometimes we have to be pulled and torn apart to see the strength within us. 

Let me tell you, that's where I am right now. I feel like I am being pulled and ripped apart. I only hope that I have enough strength to make it through, but I know any strength I do find during this time is coming from Christ. 

One of the first ultrasounds of Spencer, he showed

 us just how strong he is by flexing' a muscle

I am no stranger to trials. And each time I question "Why me?" but not in the way you might think. I question why me and why right now? What is Heavenly Father teaching me through this trial and how can I become more like Him because of it? What do I need to learn?

Here are some of the things I've learned during this NICU journey so far:

Lesson 1:"Never suppress a generous thought"-Camilla E. Kimball

I have had a couple of people approach me and say things along the lines of "I was going to text you and see how you were but I know you're probably being bombarded with texts and calls from people and I didn't want to bother you." I get it. I have had those same thoughts before. But apparently everyone must be thinking the same thing because no one is checking in with me. I'm not getting texts. I'm not getting phone calls. No one is bothering me about anything. 

I don't write this for pity. I write this because this is a lesson I needed to learn. I have had so many thoughts of things I could do or say for someone else and I never followed through because I was worried about burdening them. But seriously, what's the worst that could happen? They get a text from you, think "it's so nice that someone is thinking about me", and then don't respond because they're busy. That doesn't sound like a bad thing if you ask me. This experience has helped me to re-commit to not only thinking of others, but following through on all of my random thoughts of things I could do for someone else whether it's a text, a meal, flowers, chocolate, whatever.  You never know what a difference just one text can make.

Lesson 2: Just because we've done the NICU thing before, doesn't mean we are "pros" at it or that it is easy.

Each one of our NICU experiences has been so different and it seems like each one has gotten progressively more difficult. When Lydia was born, Thomas and I had just graduated from BYU and we weren't working. We had no other kids so all our focus could be on Lydia. We visited the NICU 3 times a day most days. When Danny was born, Thomas was working long hours in residency, we had 2 kids at home, and because of COVID we were not allowed to visit at the same time. It was hard to find time to visit Danny, but with the hospital being just 10 minutes away I was able to visit almost every day. With Spencer, it is a whole new ballgame. He is a little over an hour away and we have 3 kids at home. Going to visit him means I need to carve out at least 5 hours so I have time to drop off kids, drive to the hospital, get Spencer out which takes a while with all his wires and tubes, hold him, pump, drive back, and pick up the kids. Lydia has been extra clingy lately and begs me not to go to the NICU and to stay home. 

Each kid has been different, too. They each have their own challenges and the long NICU stay is so full of ups and downs that its hard to push through. We try not to think too much of the expense as well, but it's pretty high. Between the actual hospital bills, eating out since we are driving so much, gas for the long drives, and child care, it can get hard. I have skipped so many meals between driving and being at the hospital.

I feel like I am being pulled in so many directions. No matter where I am and what I am doing, I feel guilty for not being somewhere else or doing something else. Should I be at home with the older 3 or at the hospital with Spencer? When I'm home should I be playing with the kids, cooking, cleaning, mowing, working on my calling, pumping, or a host of other things.

I know most moms feel the pull of having too many things to do. It's just so hard to feel like I'm either abandoning my 3 older kids or my helpless baby. I get choked up thinking of poor little Spencer laying in isolation at the hospital all by himself for days at a time.Then when I get back from visiting Spencer, I'll hear about Danny crying the whole time or the kids fighting and feel guilty for leaving them. Not to mention the utter exhaustion.

So no, we are not pros. It is so different than our other NICU stays.

                                                    

Lesson 3: You can't judge a book by it's cover

You never know what people are going through. When I step into an elevator at the hospital, I don't know if the other people in the elevator are going to visit their wife who is about to or just had a baby, going to visit someone that has been in the hospital for weeks, going to the NICU to see their baby who will soon be going home, or going to the NICU after getting bad news about their baby. Everyone has a mask but what is behind that mask? A smile? A frown? Concern? Hope? Despair?

Even without a mask, it is easy to smile while crying inside. It is easy to put on a front of strength, faith, and hope when deep down I feel terrified, depressed, guilt, and pain. Twice I have had to leave the NICU early and rush to my car before I let the tears flow. 

Spencer is ok. He is stable. But it is going to be a very long road ahead of us. He is 4 weeks old today and it feels like we are exactly where he was 4 weeks ago. He still is on the non invasive ventilation, he is still having bradys and apnea spells, he is still under contact precautions and in isolation, he gains weight sometimes but then will lose weight, and recently they found a heart murmur from a PFO. This will most likely not need intervention, but it is still hard to hear. I feel like he isn't progressing. He's not moving forward. The doctor calls with an update every day and 90% of the time they say "Spencer is stable. We're not making any changes today." No changes. I guess it's better than going backwards (which he has done a little), but no changes really stinks. 

Life is hard. Everyone has challenges. I just hope that I come out a little bit better after each of mine. I hope I'm a little more empathetic, that I have eyes to see the pain behind the smile, that I can have the courage to help even when someone says they don't need it, that I can say the right things to let people know I truly care, that I can be real and vulnerable so others know its ok. I am grateful for the help I've gotten and I'm sure I have a lot more to learn from this experience. 

You were NOT a mistake!

 Spencer Allen Seymour was born May 2, 2021- just shy of 9 months after our Danny boy. Because of this, we have gotten a lot of questions and comments such as "Oh well that was definitely an accident", "What were you thinking?", "How are you ever going to do that?", "Your husband is a doctor, don't you know how it works?", and other similar things. 

First of all, it's none of your business. This is between Thomas, me, and the Lord. Secondly, yes of course we know how it works. And thirdly, I do not want Spencer to EVER think he was an accident, mistake, or unwanted. 

Yes, Danny became a big brother at 9 months. And yes, I am worried about being a good enough and strong enough mom to handle it well so when you ask what we were thinking or question how I am going to do it, it doesn't really help my confidence. Some support would be more appreciated. This was something we thought through and prayed about a lot. 

But since we've had so many questions, let me tell you about how our decision was made. While I was pregnant with Danny, I had a distinct impression that he was not going to be our last. I thought it was strange since we hadn't even had Danny yet so I kept it to myself. Once Danny was born, things were really hard for me. I cried a lot and struggled through his NICU stay as he had several ups and downs during those 10 weeks. Even though I was consumed with worry about Danny and struggling balancing time between the NICU and home, while I was sitting holding Danny one day, I felt that strong impression again and added to it that we needed to have our next one soon. Lydia, Evan, and Danny are all about 2 1/2 or more years apart so I figured maybe we should have another one in a year or so. I went home and told Thomas about my feelings, nervous he would think I was crazy. Surprisingly, he told me he had had the same exact impression and felt that we shouldn't wait. 

Now, when we had the thought that we shouldn't wait, we figured it'd be a while. Getting pregnant takes time, right? Apparently not for us. We knew we weren't supposed to wait, but we definitely didn't expect to get pregnant so soon after. But accident/mistake? No. 

When I started feeling nauseous, I figured it was a stomach bug or my gastroparesis acting up. I randomly took a pregnancy test just to see and when it came back positive, I kinda freaked. I took 3 more to make sure then I texted Thomas at work and said "hey let me know when you have a minute." Thomas was pretty shocked to get a pic of a positive pregnancy test while in the middle of rounds at the hospital. I was/am terrified of how I was going to handle it. But at the same time, in the back of my mind, I had this sense of peace that this was according to God's plan. 

                           

Fast forward 20 weeks. I started having the preeclampsia signs. My blood pressure was rising, headaches starting, etc. This was the earliest the symptoms have started and I was so scared of what that meant. I held out for as long as possible but despite medications and other interventions, my symptoms continued to worsen. At 27 weeks and 5 days, I felt terrible. I was in tears since the headache that had been going on constantly for a month was even worse and I just felt bad all over. I went to the hospital with a blood pressure of 185/109. While there, the team decided things had gone on too long and were worried delivery would be soon. Unfortunately, the hospital in Conroe only goes down to 28 weeks gestation, so I was transferred to the Texas Woman's hospital downtown. There, the NICU takes down to 22 weekers. 

       

While there, I kept hoping that I would be able to stay pregnant until at least 32 weeks. However, the symptoms kept getting worse. Sunday morning, I woke up at 2am and the thought "May 2nd isn't a bad birthday" popped into my head. I was like, wait. Where did that come from? I'm not ready yet! 

I said a prayer. I asked Heavenly Father to help me know if this was the right thing to do. During my hospital stay, I had been tempted several times to lie about my symptoms and say that they were gone or had diminished when in fact they were just getting worse. But I wanted to keep this baby in as long as possible. I would suffer through the symptoms if it meant keeping him in. I needed to know what to do. Should I lie? 

My answer came about an hour later when I woke up to contractions. I have never in my life had contractions. At first, I was confused. What was going on with my body? What was happening? Then the nurse came in and asked if I was feeling contractions because they were showing up on the monitor. The thought came into my head, "Spencer is ready to come into the world now. This is how he's showing you." 

Peace. That's the only thing I can say. I wasn't as terrified as I thought I would be. 28 weeks is the earliest of all my babies and being a boy puts him at a disadvantage since they seem to struggle more in the NICU. I should be freaking out. I should be taking everything back and saying the headache and vision changes were gone. But I didn't. I should be worried about how in the world we are going to make the commute to see Spencer all the way in downtown Houston while still making sure the other 3 are taken care of. But I felt good about him being at this hospital. They took 22 weekers! They will be pros with a 28 weeker.

Sweet Spencer was born at a whopping 3 pounds. He is here. We love him. He is part of our family. So no, he wasn't an accident. No, he wasn't a mistake. He is a special child of God and him joining our family this early and so close in age to Danny is part of the plan. Why is it part of the plan? I have no idea. I'm sure he will teach me many things and as always, our time in the NICU will be a sacred and trying time. I hope Spencer will always feel not only wanted, but needed in our family. We love you, Spence!

 

                              

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.