Oh, this is the week when no rhymster may rhyme On the joy of the bush or the ills of the time, Nor pour out his soul in delectable rhythm Of women and wine and the lure they have with 'em, Nor pen philosophic if foolish discourses, Because of the fury of galloping horses... -CJ Dennis When we are ill, life goes on. We work. We cook dinner. We wash dishes. We walk the dog. We take out trash. Life goes on.
When babies are sick, we can't help but stop the things that seemed so necessary before and focus on caring for our little ones. The horses, like illness, gallop with fury and stop for no one. Our animal instinct tells us to care for our young at any cost. And so brings me to this post. Yesterday, Eleanor and I went to the cardiologist. Slowly, her heart has begun to fail her and her body shows small signs of stress. Breathing and eating have become slightly more difficult for her, and her heart has a "galloping" rhythm, the cardiologist describes. This means the pressure in her tiny heart has shifted and more blood is flowing to the lungs than the body because it's the path of least resistance. To manage this, she will receive a small dose of Lasix each morning. At this time, we will continue trotting this course until we need to adjust, add more doses of medication, and eventually schedule her surgery. For now, we stay the course and saddle up for the long ride ahead. We continue to pray for her health, weight gain, consistent eating, and above all else- her happiness. She amazes us with her strength and resilience. She fights hard and gives us strength we didn't know we had. We are incredibly blessed every day we get to share with her on this earth. Those tiny holes in her heart are one more opening to let my love for her pour in. As always we appreciate all the prayers flowing in from around the globe. In the spirit of Thanksgiving, we want to thank you for all of your love and support. This would be a lonely and difficult road without you helping to shoulder the burden of worry and carry the load.
18 Comments
Name sOmething chunky... b.) a sumo wrestlerc.) cute wedgesd.) eleanor rose! Hoorah! (7 lbs. today!!!)Like the Loverboy lyrics, Everybody's working for the weekend.... That isn't always the case for us, but with Lauren and Eleanor at home, I try so hard just to get home and spend time with those two amazing girls.
Lauren has been like many before her, becoming super mom when she is alone. She has started to learn the tricks of the trade from getting out of the house, having a quick bite, changing diapers, getting Nora to doctors appointments, and coping with the new medical prognosis. All of this while trying taking care of herself as she is still recovering from her C-Section. I can tell you most guys out there will crumble from this stress, but yet somehow women manage to do it all, and go back for more. When I complain about being tired, she is doing three more things, or getting up many more times then me during the night. I know I married an amazing girl, and these past weeks have shown me all of her strength through any obstacle or challenge. I try very hard to get home at a reasonable time, put my amazing kids/students on hold (this is very hard for me), and spend time and help around the house as much as I can. As you saw above, Lauren has become super mom by taking on all of the work and stress during the day, so I just want to come home be with my two favorite girls, and let Lauren get a break. Our weekend has become a sacred time, much of it we try to reserve for family time what ever that may be. We get visitors, but as you know we have to be very careful and need to be limited on who comes over as to not get Eleanor sick. To get around this, we love to facetime so we can speak with friends and family from all over the world so they can meet our little Heart Warrior!! We watch old, terribly good family movies (well, let's get real we watch usually one in a 13 hour period!). We also just spend time exisiting and enjoying these special moments. We know that she won't be this small forever, and that our focus will eventually become helping her get better so we can get back to watching one movie in 13 hours as a family. It is hard to watch, but we will remind her as she grows older and the reality sets in that she has to see cardiologists regularly, maybe take some extra precautions, and wear her scar with pride- not disappointment. We will let her know she will always have us as a voice and her biggest cheerleader. We will share with her our own battle scars and stories of surviving a very premature birth (Lauren) and conquering Meningitis with some physical adjustments. Hopefully these experiences will continue to not only make her stronger and know she's a warrior, but we will continue to grow and become stronger too. As this weekend closes and our work week is going to start, my goal is to get home and spend even more time with my favorite people. I am going to try and live by a philosophy John Whitwell taught me about when he worked in the public school system (he is a retired director of bands at Michigan State). He explained that you put on your knight's armor when you walk through those work doors and prepare for the day. You help students, get through rehearsals, and even counsel them the problems they face. At the end of the day, you have to hang up your armor after it's been been marred with battle wounds and leave it at school to be cleaned and repaired. Then you can return home to be with your family. The next day that armor is set out at work waiting for you: cleaned and shiny, ready to start another day. I'll be ready for my armor come Monday. I'm trying my best to leave work at work. I don't want to miss any moment. We are weekend warriors. Peace and Love always!!! With tears in my eyes, I tell our cardiologist "I feel like I'm just waiting for the other shoe to drop."
" Well, you are... and it will..." says Dr. Cutler. Well damn. I like shoes but I've never been one for waiting. I like old, worn in, dirty, comfortable shoes. The ones you could wear every day and walk 20 miles in. Lately though, I've been feeling like my shoes are of the new variety. Stiff and uncomfortable, giving me blisters and causing me anxiety when I have to even think about walking down the hall. And the waiting in them. Don't get me started. Dr. Cutler said the shoe will drop. Those new, unforgiving and miserable shoes. And that it will happen sometime in the next two to four weeks. We are to look for signs of heart failure beginning: quick breathing with chest retraction, nostrils flaring, trouble eating because of labored breath, and as a result, a lack of weight gain. At that point we will begin Lasix to clear fluid from the lungs caused by the excess blood flow there. Darn, I don't like these shoes. My heart aches. I'm full of anxiety. I'm afraid. It's too real. I don't like to think about it. Sometimes I lay in bed awake and listen to her breathe, too afraid to sleep. Right now is one of those moments. So I sit here at 3 am and write and cry over these shoes. But tomorrow, I will wake up and look into her eyes, renewed by a sense of wonder and love and ready to put my shoes back on. Today, she smiled at me for the first time, and MEANT it. It was amazing. My heart soared. I can't describe the joy and deep love I have for this sweet girl. That smile. It makes those cheap, painful shoes seem like pillows on my feet. I'll be ready to try to walk again. There are a lot of things in this world I don't get to choose. I can't choose my eye color. I can't choose how other people behave. I can't choose whether it will rain or be sunny. But today, I got to choose to eat granola for breakfast. I chose to watch old episodes of Criminal Minds and swoon after Shemar Moore. I chose to exercise my right to vote. Collectively, today we will choose a new president. Some choices in life come easy, and some at a price. But, this year, we've made the best choice. She came at a price we would pay a million times over. We chose Eleanor. We chose to not give up on the hope that she would come into our lives when we least expected it. We fought until we almost couldn't anymore. But we waited. And waited. And fought. And chose to not give up. And now she is here. She is THE SINGLE best gift we could imagine and hope for. She is our miracle. Our favorite choice. We have an incredible team of doctors. We made some great choices with her care. They are truly an amazing group of doctors who treat us like family. Her last appointments with the nurse, cardiologist, and pediatrician have gone really well. She is gaining around an ounce a day, which is about as good as we could hope for. So far, though we can hear the murmur of the holes in her heart, we can't find any outward signs of heart failure yet. We continue to tweak and change her feedings and formula to help her with her fussy tummy, and I've gotten a ton of great recommendations about non-dairy options to ease the pain of losing cheese in my life (hahaha!). This is the first week since I've been out of the hospital (with all of my surgical complications) that I've been on my own. My parents, mom especially, and Adam's parents have been a tremendous amount of support to us all. Even though you can't choose family, I sure am thankful I ended up with this one. And though I did choose Adam, I'm eternally grateful I married his family too. Man, am I lucky. I don't know how I would have survived all this heartache and pain without the love, patience, and efforts of my family. So overall, life is good. I am happy. Our girl is growing and thriving. I choose to rejoice in this moment. I choose to not let the things we can't control get me down. I choose love. One month <3 Her first smile on film.
|
AuthorHere we are! Adam, Lauren, Nora, and of course our fur baby Baxter. This is our story. Archives
June 2018
Categories
All
|