Today was one of those days that it was hard to leave and go to work. Lauren has been pulled in every which way mentally and physically, with taking on doctors apointments, feedings, meds during the day. All the while she is still trying to fully recover herself. I know I have said it before, and I will say it again... she sure is a SUPERMOM!! I don't know how she manages it and is still standing on two feet by the end of the day. Friday was the first day I left for work and Eleanor was awake. She's been kind of awake when I leave for work in the past, but that day she was awake and fully alert. I said goodbye to Mommy and Nora and exchanged some playful baby talk and faces with Eleanor. I thought to myself, I haven't seen her this awake in the morning since I have gone back to work. We smiled and laughed, and then it was time for me to get going to school. When I said good bye, you could tell that her she was using her eyes as her voice. She was pleading to me, "but daddy where are you going!? Don't Leave!!" As I walked out the door, Lauren said "look at her, she is looking for you." I can tell you, my heart broke, and I would be lying if I said didn't want to put my PJs back on and spend the rest of the day with them. I told myself "it's almost the weekend at least I am going to rush home and be their with them ASAP!!" I am hoping this gets a bit easier, but I have a feeling it probably won't. Every day when I get home or see her, there is always something different. Even in just 24 hours!! Her eyes are more curious, she is reaching and trying to touch new things. You can even tell she is trying to communicate with us in different ways. I know this girl is so tough and curious about everything. If she's anything like her mom and dad were, we are going to be kept on our toes for a very long time. There is always something new or another first experience I see being and work and coming home. Lauren has something exciting and new to share, or I just get to be surprised and see it first hand when I am home hanging out with her. Every parent says their kid is smart and so amazing, so I'll...........................tell you the same damn thing :)!!! I love seeing all these new firsts. I can tell you the first I am not looking forward to, "Dad I think I like this boy!!!" Like the previous blog, it was a first for some vaccines, and boy, Thursday night was not fun. Between getting home and getting the info from Lauren about her pediatricians appointment, we said goodbye to my brother, sister-in-law, and neices as they open their new chapter in another state. They have been super helpful and supportive and we are going to miss them. I think between that and doctors appointments, Nora was done for the day and she was not having it. She was uncomfortable from the shots and she didn't want to eat much for a bit, and just being fussy. I know this was one of the first times she has been quite so fussy and helpless, and I know it wont be the last. Let's just hope there aren't many. I love this little one, and I am now more than ever not looking forward to what's to come the next few months. And the last first... good news! It seems like we've been hit with so much bad news that we have been struggling and waiting for some good. Today, we got some. Eleanor's ASD (hole in the upper chamber) continues to remain open, though small. Her lower VSD (hole in the lower chamber), which was substantially larger, has developed some tissue that has split the large hole into two smaller ones. This means she has less blood blow and pressure released to the lungs, which is a huge deal in terms of managing her symptoms to delay surgery. It's *possible* that we could delay surgery until summer if this trend continues, which would be awesome because Lauren and I will both be able to be with her. This has been a major concern for us because Lauren didn't have any leave time to be with her for surgery and recovery, so this would be wonderful for both of us to be home to support, love and comfort her. All things considered, I know we are a strong loving family and she's a fighter!! We have a great support system, and just the support we are receiving from here shows we are extremely loved and we are not alone! As always ☮️❤️😁!! Two Months Old!
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I am amazed that 8 weeks have flown by in a blink. I've watched our beautiful girl grow from a fragile, 4 pound, 11oz baby to a fighter: a 7lb, 11 oz baby. She's gained three pounds, which is something to rejoice in! Despite this, she has yet to place on the growth chart for height and weight- she is still too small and behind where she should be. Realistically, she is two months behind (she now weighs what a baby should at birth). We are fighting the clock as her body continues to shut down. She is eating less and her body is working harder. We may need to add another dose of Lasix to battle the heart failure. She tires faster but with an attitude like hers you'd never know it. She greats each day with giggles and a smile! It's my FAVORITE! I love waking up to her. She teaches me what it means to be brave. I have to dig deep to hold it together when I think about the fight ahead of us. Eleanor however, champions each day with bright eyes and warm snuggles. Her smiles light up a room and melt your heart. She coos and sticks out her tongue 👅 when you talk to her, and the doctor says these signs say she's going to be a chatterbox. Watch out daddy! You've got some talkative gals on your hands! She observes and watches everything, especially the people around her. She's so social and lovable- my heart almost cannot contain my love for her. I can't imagine my life without this tiny person who it seems I have just met 8 short weeks ago but feel I've known forever. Her pediatric appointment today was a toughie for me. Poppi came with me to meet her doctor since he, Gramma, and Nannu will take over when I (reluctantly) go back to work. Today, she had three shots and a liquid med. She screamed so hard no sound came out. Watching her red face and her tears streaming down, my heart broke but I didn't show it. We cradled and comforted her and slowly she fell asleep. Now, she's smiling and looking around like it ever happened. 😂 Doc also said we should add more calories to each bottle by putting a coconut oil drop into each one. Feeding her continues to be one of the most most critical things (aside from limiting her exposure) we can do to prepare her for surgery. She needs to be nice and big so her heart will be bigger, but also so she won't lose too much when she's ventilated after her open heart surgery. Lastly- this is a topic that is difficult for us to bring up but crucial that everyone understand. Our team of doctors has reiterated the importance of keeping Nora healthy this holiday season and thereafter. This means we continue to not only be home bound, but must limit the company we invite into the home. Though we long to share Eleanor with you, we ask that you appreciate her from afar and we will do our best to share her via Facebook and our blog. Limiting her visits to immediate family equates to limiting her chances of becoming sick, which could wind up putting her in the hospital. If she were to catch something as seemingly small as a cold or flu, she would most likely be admitted to the hospital and not released until after her surgery, which could be weeks or months later. It is very serious, so we kindly ask for your understanding as we do our best to protect and care for our little girl. Thank you all for the support, kind words, prayers and understanding. God bless you and your families this holiday season! ❤️ We are so grateful to know you and share our experience with you! Look mommy! I'm getting so good at taking my medicine! Lots of practice with you taking my Lasix at home 🏡 Poor girl 😞 lots of snuggles after those pokes.
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. 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.
What a crazy week its been for our new little family! We've done everything from having electrical work done, doctors appointments, to appliance installation. All along with Adam going back to work.
Wednesday started my first few days back to work. It was tough to go back to work and leave Lauren and Eleanor at home. I was very excited to see all of my students and get back to see my colleagues, but I sure was ready to get home and be with the family at the end of that first day. It was also a bit tough this week because there was a home football game on Friday, and that makes for a long day of getting to work at 6am and not getting home till 11pm. I think that's going to be one of the hardest things as a parent is to be able to balance my band obligations with my family time. We we have been very busy taking care of different odds and ends around the house. We had some electrical work done and some fans installed and had some new appliances put in. So between the feedings, diaper changes, doctors appointments, and getting Lauren better it's been a busy week! When we do things at our house like have a baby we try to go big or go home!! This weekend will hopefully be more relaxing, and we will get to just spend some time together. Nora was visited by the home care nurse and we are super excited that she is now up to 5lb 4oz!! This is a small victory, as she continues to eat and grow everyday. It is becoming more apparent she has the heart defect as her respiratory rates are higher and the docs can now hear a definite heart murmur. One of the hardest things I think I will ever have to do is watch Eleanor go through heart failure. When you look at her she's so sweet and peaceful and you want to do everything you can to just take all that away from her. I know she IS a fighter, and our family will never give up. Through all this we will grow and become a strong, close family. As always, thank you to everyone who has taken the time out to call, write, send cards, food, and baby gifts. We are also so grateful for all our parents continue to do for us!! Without them we wouldn't be able to get to appointments, or even eat sometimes. I think the best thing we learned is to let people help us. This difficult time would be much worse if not for the caring people around us. Much love to all ☮️ & ❤️!!! The good... I LOVE NAKED NORA! She was officially two weeks old as of yesterday and has surpassed her birth weight and hit five pounds and three ounces. She's eaten like a champ the last two days and has met her goal of 10 ounces a day. When we met with her pediatrician this afternoon we decided that we will also be fortifying her breast milk with a drop of coconut oil, in addition to the added formula, to increase her caloric intake. Our goal is to have her hit 15 pounds by 4 months to be big and strong for surgery. Ive been dairy free for a week now, and you'll be happy to know it didn't kill me. I'm getting used to almond milk in my cereal and today I am to begin new adventures with dairy free cheese. Oh boy! Lol. But wait- just have to throw this in there... what a love bug! Thank you Diane for the new outfits! So cute! Now moving on to the bad... Mommin' ain't easy. Why didn't anyone say it would be so hard? I've been struggling with my incision that didn't heal and filled a pocket of fluid. The tissue inside had to be debrieded and cleaned out twice. Now I've got to have someone pack it 2-3x a day with antiseptic gauze?! It will be a few more weeks until it's healed and this will need to be repeated daily. Seriously... eww. The ugly...
Also, I've got mastitis. So there's that. Things for me are not as sunny as of late. But at least Nora is doing well? I guess if I had to choose I'd much rather me be on the suffering end than her. As always, we learn to take the good with the bad. I'm lucky to have discovered the mastitis quickly enough to treat before symptoms were too serious, and I have a huge support system to help me along the way. Plus, Nora is doing awesome! I'm grateful for her continued strength and perseverance. She's such a tough cookie! And lastly, thank you for the continued thoughts and prayers. We would be totally lost without them. After a long busy day of doctors offices on Thursday, Lauren, Eleanor, and I are getting so much need family quiet time!! We have been so overwhelmed by support, help, and kind words over the past few days. Without that support, our experiences on Thursday would have been much harder to swallow. Friday was was a great day!!! We had a great visit/lunch with Nannu and Amma. Nannu is quite the baby whisperer. He just has a way with babies, and boy do we enjoy Amma's cooking. Lauren's first day without dairy was a success. We have found some great substitutes for a few of her favorite foods. I can even tell you that the Ben and Jerry's non-dairy ice cream is actually really good. We've also been getting lots of other tips for supplementing different things for dairy. We will post some of the things we try in case there is anyone else out there that needs some ideas. Lauren was extremely excited, because she got three hours of sleep in a row Friday night/Saturday Morning. We had quite the day today. The morning started out with a surprise call from some family from across the pond. Eleanor was super excited to meet David, Edward, Clarie, and Nerissa. Nora was quite the character with them on the phone. She sure knows how to ham things up. She doesn't know it, but those four folks really kept Daddy and Mommy sane through the ups and downs of getting pregnant, to the cardiac experiences. Eleanor is so luck to have some amazing family who care about her so much in the UK and Malta! This afternoon I had my little MSU football watching buddy. I sure am glad she is around or else this season would be a lot more tough to get through with all of these losses. Those of you that know me know I get pretty passionate about the Spartans. Although ever since Nora has come along, just sharing my love for MSU and the Spartan Marching Band has been so awesome... win or lose!!! I can't wait to take her up to MSU some day to see Sparty and experience the band in person. I guess she is learning Mr. Madden's mantra at an early age, "It's better to lose as a Spartan then win as anything else" Nora also had some wonderful visitors today. Nana and Poppi came for a visit. She really enjoyed their visit and is so thanks for for all the hard work Nana puts in when she is here. Amma and Nannu continue to run errands for us non stop. They have done everything from grocery shop, return items, and even take back our over flowing returnables. Not only has Eleanor been visited by all of the grandparents this weekend, but she got a visit from her godmother and Uncle John. She had such a good time with them. We are pretty sure she's going to be so spoiled by her Godmother! She already is, actually! Nora is so lucky to have them in her life. Nora is pretty lucky to have two godparents in Anton and Alana!! She has some smart and amazing role models to look up to.
We are very excited to have Nora's care plan in place. We will be having a home care nurse visit once a week, along with a weekly pediatrician appointment to see how her heart is progressing and visits to the cardiologist every two weeks. It seems very daunting with Adam going back to work, but with family help and perseverance, we will make it though this. Thanks to those who have written, cooked a meal, or sent a motivational message. We appreciate all of it and could not get through this with the support of family and friends! |
AuthorHere we are! Adam, Lauren, Nora, and of course our fur baby Baxter. This is our story. Archives
June 2018
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