Wow. Is it really 2015? How did that happen. Actually, I'm quite ready for a new year. A new beginning. 2014 was the most challenging year yet. But there were many, many good times too. And the most important thing is--we made it through. And Lily is happy, healthy, and growing! So here's to a new year full of HOPE, full of HEALTH, and enjoying the HAPPINESS of each moment.
Looking back at 2014, it seems like a bit of a blur. It really did go fast. We moved back home to Steamboat Rock last December and while we were very thankful to be closer to family, it was a hard transition. I left behind my job and good friends. I have always loved the Ankeny/DSM area and had been there for many years. Levi and I had started talking about moving back home before we were even pregnant with Lily, although we weren't always sure where we were supposed to be and went back and forth on moving back. However, God knew all along and had a bigger plan in store for us and brought us back home for reasons which were unforeseen at that time.
After we got settled in Steamboat Rock last winter, Lily started physical therapy at Covenant Hospital in Waterloo. We were referred to PT because she wasn't meeting developmental milestones and had decreased mobility, particularly in her lower extremities. After numerous visits to Covenant and appts with her new pediatrician in Waterloo, it was suggested that Lily be seen in Iowa City and evaluated by a neurologist because she wasn't making the gains in strength that we had hoped, despite great efforts. Of course we couldn't get in for several months, so we kept going to therapy and working with Lily at home in the meantime.
In March we went to Iowa City for Lily's initial evaluation by the neurologist. We talked with him, he asked us lots of questions, assessed Lily, and said he was going to run a few baseline tests to start with. He told us his concerns about a possible neuromuscular condition, but really wouldn't let on more than that. So then we waited, (for what seemed like an eternity) to get our tests results back. They wanted to discuss the tests results in person, of course. So we went back April 1, 2014 and that was the day that our lives changed forever. Lily got diagnosed with SMA (Spinal Muscular Atrophy) Type 1. After he told us the test came back positive, I really don't remember much that he said after that, but words like genetic, terminal, progressive- stuck in my mind. I remember sitting there holding Lily and just crying as the neurologist and nurse talked with us. Feeling numb, sick. Just wanting to get out of there as soon as possible. Levi and I had never even heard of SMA before. Even being a nurse and having worked in the NICU, I wasn't familiar with it. On the way home from Iowa City, there were lots of tears. Lots of silence. Lily slept peacefully in her car seat, and inside, my heart was breaking. Thus begins the journey of SMA.
The weeks after Lily got diagnosed were hard. Very hard. I've never cried so much in my life. We had been given a crazy amount of information about SMA and what it was, the genetics of it, how it affects mobility, respiratory health, nutrition, etc -it was all very overwhelming. The Dr. had told us that children with Type 1 SMA had a poor prognosis and usually didn't survive much longer after two years of age due to respiratory weakness/failure. It was hard to stomach that news, let alone believe it and tell other people. It took us a long time to wrap our heads around what was going on and hard enough to share with family, let alone others. The more we told people about it, the more "real" it seemed, so we didn't like to talk about it. In time, we grew more accustomed to Lily's diagnosis and began to share more about it. It was somewhat of a relief to know that the word was getting out; I felt like we didn't have to hide it anymore and we could start to live our lives again. The support we received as well was overwhelming and we were so grateful for the number of people that began to reach out to us in a variety of ways.
Our journey with SMA began too quickly after Lily's diagnosis. It seemed like we were diagnosed and about a month or two later, things started going downhill quickly. Lily started showing more overall weakness and it became harder for her to breastfeed and suck well. Which led us to the NG (nasgastric tube) that goes through her nose and down into her belly. She had lost weight, so the NG was a temporary solution to get her the calories she needed.The NG tube made Lily miserable; it irritated her and caused a lot more secretions, which became more troublesome as she started to lose her swallow. She hated it-she would not sleep well with it so we ended up taking it out after her last feeding at night then I would put it back in the next morning. Being a NICU nurse, I had done my fair share of putting NG tubes in. But it's a whole different world when it's your own child. She would get so upset and would just cry! I hated the fact that it was getting harder for her to nurse because I really enjoyed it and Lily had done so well and stayed so healthy. However, it got to the point where it just wasn't safe and she just didn't have the strength to do it anymore, although I could tell she wanted to. That was heartbreaking for me. It was such a bonding time for us and gave me the opportunity to snuggle and hold her close. It was hard to have to give that up. But it wasn't a choice-it was necessity. The NG tube had been a pain and we were ready to have it out for good, but it meant moving on to the g-tube, which meant surgery and a hospital stay (which we were not looking forward to.)
So we come to June. June was not a good month for Lily or for us. We went to Iowa City the 5th because we had to be admitted the night before her surgery. She was having the g-tube placed as well as a procedure called nissen fundoplication which helps prevent reflux in kids with SMA so they don't aspirate. The nissen procedure was more extensive and required a longer stay in the hospital and post-op recovery but the Dr.'s and SMA community encouraged us to do that while Lily was stronger so she could tolerate the everything better and recover more easily. It was still very scary to see her in the PICU, intubated, sedated, and hooked up to numerous wires and cords. What a tough little girl she was though. I was amazed with her strength and how she pulled through and came out smiling. We were at the hospital for about a week and a half after surgery to make sure she was tolerating feeds well. The feeds were very slow going and Lily had a lot of trouble with increasing the volume of her feeds once we returned home. We had to feed her every 3 hours (for about a half hour) during the day and at night and do pain meds as well, so Levi and I were up every few hours. We became zombies; rather crabby zombies. Looking back I'm really not sure how we survived through that month with next to no sleep and being stressed out to the max, waking up to Lily's alarm going off all the time, and having to suction her or use her cough machine.
Then Lily got sick, so back to Iowa City we went. We were there for a few days then went home, thinking she was better, but unfortunately had to return due to increased congestion and constantly suctioning her secretions. We were sleep deprived and weary, trying to muddle our way through this SMA mess. We were continuing to acquire lots of new equipment for Lily, which was to help her, but it was overwhelming and all seemed to come at once. First there was suction, then the pulse ox which monitors her oxygen and heart rate, then the cough assist machine (helps her to cough and get rid of secretions in the lungs). Then of course, with her g-tube placement came the feeding pump, bags, syringes, and pole. Then at the beginning of July we went back to trial the bipap, which was very intimidating at the time, but now we are so grateful for it. It helps Lily sleep well and allows her lungs to rest at naps and nighttime. So needless to say, June and July were pretty rough months. We spent basically most of June in Iowa City; we rarely left Lily's side except to go eat. We stayed in her room and showered at the hospital. I couldn't bear the thought of leaving her overnight, especially when we had never left her before at night. (Yes, I am that mom :)
The summer was harder than I had ever imagined. After being in the hospital for so long, not sleeping, not eating well, trying to pump, and being super stressed out with everything going on-I kind of hit a low point. I had never experienced pain and sadness like I did last summer. Watching Lily lose strength and endure all she did (in just a few short months), was too much for me to take. I really didn't think that we were going to be able to get through it and be able to take care of her. I didn't want to have to be my daughter's nurse and do all this "stuff" to her (suction, cough, chest therapy, feedings, meds). I just wanted to be her mom, and to enjoy her. I didn't want to have to see her go through SMA and progressively get weaker. I got to the point where I felt I had nothing left to give because I had given everything I had to Lily. She was my focus and where I put all my energy and time. I had neglected my own needs, and I was left feeling helpless and inadequate. I was so tired and worn out. I was just SO sad. When I looked at Lily, it was hard for me to focus on her and not SMA or the many limitations it brought. There were some dark, dark days. I was so overwhelmed with everything we had to do and the time it took to do it. It took her several months to work up to tolerating the feedings that she had once taken in no time. Her room filled up with equipment and medical supplies. We weren't able to do the things we used to do so easily without a second thought---going out to eat, going to movies, really-going anywhere and taking Lily with us. She had to be transported in her car bed so she could lay flat (due to secretions) and if she was going to sleep, then she had to have her bipap on, which meant she had to have her feeding tube vented, etc etc. Things were just not as easy anymore. Taking her anywhere, even to the grandparents (less than ten miles away) was not an easy task.
It took time and a great deal of support from family and friends, but once I realized that I needed to let go and trust that God would lead us through this and had so far, things started turning around. I recognized (with the assistance of my family) that I had to take care of myself and had to have some time away from Lily to be a better mom and better me. My husband was patient, supportive, and listened (besides being the best daddy). Our family was nothing but supportive and helpful and they were always there to talk, let me cry, run errands, watch Lily, or help with anything they could. Looking back on last year, I know without a doubt that the Lord brought us back home for many reasons, but one of the most important was to be close to family --to have their help and support and to walk with us through this journey. We literally would not be where with are now, had it not been for our family. **shoutout to the best family ever!***
There were many times last summer that I wanted to give up and I didn't think I had the strength or that Levi and I were going to able to get through this. I didn't understand why this happened to Lily and actually I still don't. But by the grace of God and by His strength, not mine, we made it through those trying times. And now...many months have passed and we have come to a "normal" place for us in life as we learn to deal with SMA and what we encounter with it. The suctioning, coughing, chest therapy, tube feedings, bipap, meds, etc are just a part of what we do. They have become our normal. Our routine. And I would rather do that every day for the rest of my life than not have that sweet little girl here with us. That sweet little Lily girl- I could never live without and hope and pray I never have to. She brings us so much joy and she is the sweetest, most content little girl I know. She is teaching us so much-about everything. About being content with who we are and where we are in life and about what we have, about enjoying the moment, living in the present and not worrying about or focusing on the future, not focusing on the limitations of SMA (cause there are so many) but focusing on what she can do and who she is. And she is starting to get a bit of an attitude and show her personality (being the toddler that she is!) She has blessed our lives and the lives of so many others. She is THE MOST LOVED little girl. Not just by her parents, but by her grandparents, aunts, uncles, cousins, etc. We thank God every day that she is here and try to see each day she is here with us as a gift.
And when my heart breaks because I see kids sitting up, walking, running around, and playing----I will try my hardest not to focus on the fact that Lily can't do that and it's not fair. BECAUSE one day she will. It may not be here on this earth. But we have the absolute certainty that she will walk, run, play and do whatever she wants to do when she joins her Lord in Heaven. And that is a reason to hope not to fear. And a reason to choose joy. That is one of my goals for 2015- to be content with where we are at, to choose joy, and to let go of trying to control what happens with this life.
I realize this was a very in-depth blog post and different from my usual posts, but I just felt led to share more about what we went through and how we got through it. Also, to encourage others, (especially moms), that when you feel like giving up or you feel like you're not going to to make it through, you don't have what it takes to care for your child, you can't watch them endure an illness or disease, you're not enough, DON'T GIVE UP HOPE because they need you. And you are enough! They need to see that you will fight for them and with them and that every day matters!! Every day is a gift!
Below is another picture overload because of my infrequent blog posts, but here are some of the great memories we created this year, mostly in the past few months!
Snuggles after nap with Gma Stewart
Swinging with Gma Schwarck
Mid-November we went up to visit Dr. Schroth, a pulmonologist that specializes in working with children with SMA- she is great!!
Bundled up to keep the cold weather and germs away!
First hair cut ---by Angie Luiken
Like I said, an overload of pictures but I needed to catch up from my last blog post. Hope you have all had a very Merry Christmas and happy new year to start with. Thank you again for your thoughts and prayers--they are greatly appreciated. Here's to 2015! We hope and pray that it will bring a cure for all those affected by SMA.