July 28 marked one year since Lily's final connection surgery for her esophagus. Happy 1 year anniversary Lil! Wow. This July also marked a time when Lily was home longer than she was in the hospital. 9 months if you count the stent placement in February. It's amazing how much progress she has made this past year. When she came home at 8 months old, she could barely hold her head up. Now she is almost walking! There are certainly a lot of things to celebrate and give thanks for, but I can't help also feeling defeated sometimes. Lily eats very little by mouth right now. For a while, she was eating puree 2 to 3 times a day and wasn't throwing up or spitting up very often. Now, she throws up at least once a day and has very little interest in eating. She won't eat if it's something I have to feed her, like the purees. She will eat a few nibbles of something she can feed herself.
Some days it feels like we are making zero progress (with eating). Some days feel like this is a horribly long journey that has no end in sight. Sometimes it almost feels like the NICU days were easier. I know that seems crazy, but the goal and the one thing we longed for most was the day we got to bring her home. So up until that day, we had something we were working towards and getting closer and closer to. Now that she's home, it's not like everything is magically fixed. I can't help but feel sorry for myself because our lives are not what they would be if we had 3 healthy children. I know that sounds horrible, but I just want to try to explain some of what I'm struggling with and working through. Lily's feeding tube dependence and frequent throwing up really limits what we can do. We occasionally get a babysitter, but I worry about what could happen with Lily if I'm not home. I often worry that Rose is missing out on normal childhood fun because I can't take her a lot of places. I know that is nonsense. I'm thankful that she is young because all it takes is going outside to play with bubbles, and she is the happiest girl in the world. I realize that I am putting a lot on myself. I am trying to be a perfect mom, creating a perfect childhood for my kids. I know if a friend or even a stranger were telling me this about themselves, it would be easy to say, "That's crazy! You can't be perfect! You're doing an amazing job! Your life is hard, but your kids are happy!" Lol. It's never easy to see that though when it's you.
So it's a DAILY struggle to deny self-pity and to embrace what the day brings. I have been relying so much on my own will and determination and that has gotten me nowhere. When I try my hardest, I end up angry, yelling, screaming, basically becoming someone I do not want to be. God has been reminding me over and over the past several months that I need to just give it all to Him and rely on Him. He's been showing me how much I NEED Him. I need His grace daily. Like every second of the day actually. It can be hard though to know how to do that. Like, what does it look like to surrender it to God? Oswald Chambers wrote, "To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring. This is generally expressed with a sigh of sadness, but it should be an expression of breathless expectation. We are uncertain of the next step, but we are certain of God." When I stop striving and just embrace I realize how absolutely wonderful my life is. Our lives may not look like the life we would have without a medically complex kiddo, but that's ok. It's still a great life. Sorry I'm going on and on, but it really does help me to write about it. That's why I'm also including another post after this called, One Heck of a Ride. I wrote this next one over the course of a few months, January 2021 to March. I didn't know if I wanted to post if for a long time, but decided why not.
One Heck of a Ride
This isn't an update really, but my attempt to process some of the things that have happened this past year. I won't be offended if you don't care to read it. It does help me to write about it though, so if you do read this feel free to comment or reflect. Sometimes it's eye opening to see someone else's perspective of what you're going through/went through.
Speaking of eye opening, as a healthcare worker it has been crazy to be on the receiving end of healthcare so much. It's a really weird feeling. It's like you know what goes on behind the scenes and you're part of this play or act, but suddenly playing a very different role- a role in which you feel very powerless. Mostly, it has been inspiring or motivating for me to be a better nurse. I'm happy to say that's because most of the care we received was so stellar. There were some bad things too, but for the most part our care team was incredible. There are some nurses, doctors, and other caregivers I will never forget because of how they cared. It's not just about the skill, although that is important too. It's about how you speak to a grieving parent, or deliver some bad news, or how you stop to listen and let someone think. I'll never forget Lily's cardiologist in Grand Rapids. Her name is Heather. She is the one who viewed the fetal echocardiograms and diagnosed Lily with the VSD and possible aortic arch concerns before she was even born. I remember I could tell something was wrong as she viewed the images. With Cora's images, she just kept saying "beautiful" as the ultrasound tech went through the pictures she got. When they got to Lily's pictures, she just said "ok" and asked for more pictures. She kept her voice calm and quiet the whole time. When it was time to tell me what she saw, she sat down next to me and calmly and slowly explained what was wrong with Lily's heart. She drew pictures. She sat in silence as I bawled my eyes out. She encouraged me to email her with questions as they came up because she knew that I would think of questions later as I digested the news. I did message her, and she responded the same day.
Lily's cardiac surgeon was another life saver. Literally. It just blows my mind when I think about human hands operating on such a tiny vital organ like a premature baby's heart. Like, how do you do that for the first time? His name is Marcus. He had this calm demeanor everytime we talked to him. It probably helped too that he had a British accent, ha! He was confident, but definitely not cocky. He had numbers and research to back up his reasoning for doing or not doing something. That was reassuring. He also was very personal. He never felt rushed. There's no worse feeling than feeling like someone doesn't have time for you when it's so important to you (and your baby).
I know I've talked about Lily's primary nurses before, but I just have to say a few things about them as well. The first few days and weeks in the NICU were so chaotic. Having consistent nurses that knew Lily was such a reassurance to me. I should mention Cora too since she spent 3 weeks there. Cora had Beth and she took great care of Joe and I as well as Cora. I feel so blessed that Lily had Betsy and Emily a lot early on. It was the best decision to ask them to be primary nurses for Lily. A NICU doctor told me much later on that we had a very good team of primary nurses.
A lot of people tell us that we handled (are handling) everything so well. They say things like, "You are so strong" and "Your faith is amazing" and things like that. I always felt a little weird receiving those compliments and didn't know how to respond. I did feel pretty calm and in control most of the time, but I also felt like I wasn't processing anything and that surely it would all catch up with me at some point and I would completely fall apart. I was in survival mode. We did what we had to because what else was there to do? There were a few times when the gravity of the situation would sink in, and I would send up desperate hail mary's. Right before her first heart surgery I remember just praying, "Please.." During her several hours long second heart surgery I had to fight back the panic. During her failed extubation in Boston I thought I might fall apart as I watched the attending ICU doctor step in and start bagging Lily while the team prepared to reintubate. I remember I watched silently, helplessly as tears and snot were pooling under my mask.
Those were some dark moments, but most of the time I felt like I was just taking everything in and putting it somewhere to deal with later (emotionally at least). On good days, I knew that our calmness and resilience was not of our own strength, but from God. I've witnessed in others and also experienced myself that He gives us the grace that we need for our unique situations. I'm often reminded of a Beth Moore lesson I heard several years ago about the Israelites going out to gather manna each day in the dessert. Just enough for their daily needs. And every new day they would go gather fresh manna for that day. God provides us individually with what we need. Sometimes I felt very distant from God when I realized that I had spent very little time pursuing Him either in the Word or in prayer. Most of my time with Him was spent listening to worship music on my way to and from the NICU each day (about 25min each way). There were a few songs that really sustained me. I Choose to Worship by Rend Collective, The Secret Place by Phil Wickham, and I Breathe You In, God by Bryan and Katie Torwalt. There's something very powerful about saying, I choose to worship you, God, even when I don't feel like it or when I have doubts. Even when I don't understand, I will choose you, God.
It's also really strange to look back at the beginning and see how much changed in the world. The girls were born Jan 20, 2020. Almost 2 months before the lock down and before covid was even on our radar. Our parents, some of our siblings, sister in laws, and Rose were all able to visit Lily in the NICU. No one was wearing a mask. The nurses had so much fun playing with Rose and letting her play with the Big Sibs toys in the NICU. Then one day in March I got a call from the hospital informing me that no one would be allowed to visit Lily except for me and Joe, and only one at a time. Not even Rose and Cora. Thankfully, the next day they changed the policy so that twins were allowed. I was able to bring Cora at least. Our experience with covid was different than so many others' because we did not/could not quarantine at home. I still went to the hospital most days and thankfully, Joe was still working at the airport. I couldn't help but feel some resentment when people would complain about being at home and being bored. I would have done anything to be stuck at home with my family (all together and healthy). In some ways, what was happening within our family, with Lily, was so monumental that even the world coming to a halt didn't seem to register or worry me. It did affect us of course (the limiting of visitors and not seeing friends and family), but in some ways our lives would have looked the same covid or no covid. Work, kids and NICU.
I'm overwhelmed when I think back on all the love and support we received from our families, friends, coworkers and even strangers. We received a tremendous amount of financial support, sometimes anonymously. We received many home cooked meals and treats, which I appreciated a lot. Cooking at the end of the day was always the last thing I wanted to do. There were a couple women from our church who came to watch Rose and sometimes Cora while I went to the NICU or ran errands. Friends sent encouraging letters and texts, and I have no idea the colossal amount of prayer we received. All I know is that it meant the world to me. At a time when it was difficult for me to pray, I welcomed all the intercession on our behalf that we could get. Thank you dearly, to all who supported us in any way, big or small.
Our journey is far from over. As I write this last part, Lily and I are still at Boston Children's following her stent placement for a stricture (not now, this was in March). I'm hopeful that the biggest hurdles are past us and that the road will be smoother for her going forward. We appreciate your continued prayers.
