Tiny but Mighty Baby Daanya

08/12/2024

Since Daanya has been successfully extubated, I’ve gotten some questions❓about when she will get discharged. The short answer is that there’s no way to tell exactly when because at baseline, there are no guarantees in 💉medicine. As infuriating as that can be to hear and experience, this isn’t our first 𐚁 rodeo 𐚁 and we generally know to expect it. There are many things you have to grin and bear 😬 when you deal with a lot health professionals because it’s not an exact 🔬science. So as much as I’d like to bust out 🏥 tomorrow, I can go on living in this uncertainty knowing that she’s in the best place for her and we will get her in the best shape possible before leaving. 😊

We’ve come down on the respiratory support and now we are working on feeds. This piece is the most unclear in terms of timeline 🗓️ because we have a whole new setup (anatomically) and, in turn, it’s a different ball game 🥎 than we played before. First we work up to full feeds (a volume that theoretically could sustain her) while on a feeding pump 🔌 24/7, then we’ll start to “squeeze” the time frame ⏳to create windows of her to be able to be disconnected. There’s no telling how long that will take because it depends on how much she tolerates. All that is to say the feeds are the driving factor for when she will ultimately get discharged. For now, we will just keep chugging along with advancing them and we will let Daanya decide the timeline. 🙃

29/11/2024

We can now officially say that Daanya has been successfully extubated! 🎉 She’s happier with the breathing tube out and they were able to pull back the reins on some of the drugs 💉. Yesterday they did a finger prick 🩸and Daanya watched the whole time (like she usually does) but she didn’t even cry! She is such a champ! 💪🏼She’s still super sleepy 🥱 and I haven’t seen her smile yet but we will get there. We hope she will keep progressing throughout the weekend and expect some testing early next week to make sure we are ready to start the feeding process. 😊

28/11/2024

During this season of thanks and giving, we ask that you find it in your hearts to consider alleviating some of the financial burden my dear niece and her committed parents continue to face. Daanya underwent another, extensive surgery earlier this week. We are forever grateful for her surgeon and the progress she’s made during her short life, but she continues to face many obstacles with prolonged hospitalizations, therapy, medical equipment, medications, etc. for the foreseeable future. Any amount would be greatly appreciated by our family and as always, prayers are forever welcomed 🩵🤍🩷

As some of you may know, Jessica Fischer’s baby girl has been in the hospital since birth … Laurie Fischer needs your support for Tiny but Mighty Baby Daanya

28/11/2024

If you can find it in your heart to give, please donate to help Daanya in her fight against CDH @ https://gofund.me/7b1ffcb1

Happy Thanksgiving everyone! As you all are enjoying the holiday, I’d like to give you a peek into the long days at the hospital 🏥. I haven’t really talked about how time ⏰ is like a black hole 🕳️ in this place. It c r a w l s 🐌 and flies 🪽simultaneously. It’s some machine beeping 🚨off every 15 minutes and an endless parade of doctors 👨‍⚕️, nurses 👩‍⚕️ and medical staff 🩺. No one really gets any sleep 🥱 in here, but Daanya generally doesn’t seem to mind since this is what she’s known most of her life. 🥺 As annoying as it is, we are so thankful for the team here taking the very best care of our sweet baby girl. 💜

P.S. do you think she’s spoiled? 😆 Sound machine ✅, iPad (Ms. Rachel) ✅, movie on the TV ✅! Of course we’ll give the girl what she wants, she’s earned it, right? Now what are we going to do when we need to start peeling it back once we finally get home? We may need some prayers for that too. 😅

27/11/2024

Well, we weren’t able to take the breathing tube out today but that’s okay! Daanya gets another well-deserved day off. 😌 Despite being heavily sedated 😴, she’s waking up quite a bit and still showing off her silly 😝 (and sassy) personality. It’s amazing how she’s still “with it” under all the medications, keeping everyone on their toes. 🙃She got to play with OT and PT today, which meant moving around a little bit. Sitting up is her favorite position to be in! Daanya is in and out of it but she’ll still fall asleep clutching onto a toy. If you think you could pry it out of her fingers, you’d be sorely mistaken. 😆

27/11/2024

Daanya’s surgery went well yesterday overall, and everyone is exhausted, including the surgeons. 🥱 The whole thing from top to bottom was a long, grueling 15 hours. 😳Considering all that, she is still recovering ❤️‍🩹 much faster than we were expecting. I’d like to think that means there is some reassurance we made the right decision. 🥹 The whole team is very happy with how she handled surgery and her progress post op thus far. 🩷 Of course she’s still quite swollen and the breathing tube is still in, but we are looking to get that out tomorrow. She’s already gotten rid of a few medical devices and we will keep peeling them back/off piece by piece. Even though it’s hard to see her like this, I’m honestly surprised by how fast she’s improving.

Because we know her (old) patch was infected, 🦠 we will have to treat with antibiotics for at least a couple weeks. The real question❓about how long she’ll be in the hospital will likely depend more on how we advance with her feeding. She has a new digestive setup now as part of the surgery yesterday, so it may take some time ⏱️ to acclimate. The interesting thing about it is that the feeding aspect is what usually takes up the longest time of the initial hospital stay for a baby with CDH. Soon we shall see how Daanya conquers this obstacle with her newly - albeit hopefully improved - internal arrangement. 🙂

25/11/2024

We just took Daanya down for her BIG surgery today. 🥺 It’s expected to be an all day affair and we are so nervous about it. We are hoping and praying that all goes well, there are no unforeseen complications and that she can heal without issue. We hope and pray that this surgery will help her get over the hump and progress in multiple areas, to get her to a more sustainable and better quality of life. 💜 We love her so much and hope that we have made the best decisions for her. We know it is all in God’s hands 🤲🏼 but more prayers from you all couldn’t hurt! All of our prayer warriors, please join us in solidarity as we seek the best possible outcome from our Lord, the Exalted, the Most High, for only He has power over everything. (Bismillah!)

18/11/2024

I know I’ve been quiet 🤫 for almost 2 weeks now but we have been waiting on a plan 📝 from the surgeon 👨‍⚕️ here, one whose plan is worth waiting for regardless of how maddening it is to wait. 🤷🏻‍♀️ He went from putting off surgery as long as possible to us being surprised on Saturday to hear it would be today😅. Because of the magnitude of the surgery (technically several 🔢 if you break down by procedure), we collectively decided to postpone for sometime in the next few weeks. The main talking point between now and then is to decide what to do about her esophagus and stomach, which have both proven to be difficult to manage from multiple angles. In the meantime, we still plan to do a small procedure today, which is technically a surgery and requires a trip to the OR with intubation and anesthesia. Keep those prayers coming, please! 🤲🏼That she does well during the procedure and she can be extubated immediately without a hitch. 💜

This leads me to another question❓for everyone here - have you or anyone you know ever had a gastrectomy and/or true gastric bypass, wherein they connect the esophagus directly to the intestine? 🤔 If willing to discuss, I need to pick your brain. (And yes, this is a question in regards to our sweet Daanya, a very difficult decision we soon have to make).

04/11/2024

CDH … 3 letters we did not know would forever change our world when we got the diagnosis at 20 weeks. It stands for Congenital Diaphragmatic Hernia and as the CDH community always says, it’s not just a hernia. It’s when the organs meant to be in the abdomen end up in the baby’s chest in utero because the diaphragm didn’t fully develop. Besides things being in places they shouldn’t be, the lungs 🫁 are usually most affected because one or both of them is being smashed by all the other organs they shouldn’t have to compete against. This causes chronic lung disease, one of Daanya’s many diagnoses. Her grandma (“Mimi”) always says “she looks fine on the outside, a beautiful baby girl, but her insides are a mess.” I think it’s the best way to describe our beloved Daanya in a nutshell. She’s been through more in 29 months than most adults experience in their lifetimes. To know her is to love her and with her we will keep fighting!! 💪🏼

04/11/2024

While we have a moment to reflect 🙇🏻‍♀️ as we gather all the test results, I’d like to again thank 💜 all those who have helped us on this long and winding journey we attribute to CDH. (I’ll post later about what those letters actually mean). Many individuals have sent 💰donations and prayers 🤲🏼 alike, from family to friends to mere strangers! We have also received help from different organizations along the way, which I fully intend to name one by one. We want to express our gratitude 🥹 to each and every one of you who have shown such kindness and generosity. Thank you so very much, we couldn’t have made it this far without you. 💖

One organization that has been there for us time and time again has been The CDH Foundation. From care packages to multiple grants, they have helped us in so many ways. The people at the CDH Foundation are such wonderful, compassionate souls and they deserve a shout out (or two or three 😉)! I truly hope that one day we will be able to give back even more than they have so graciously given us. From the bottom of our hearts, THANK YOU!

The CDH Foundation helps parents of CDH Survivors and Angels navigate the CDH journey through the provision of financial grants and support groups.

03/11/2024

Safely nestled in the care 🤲🏼 of Dr. Kays and team, we are now in the testing phase. One thing I usually cannot stand to hear in a hospital 🏥 setting is “we need to collect more data.” 📊 However, this time, I’m welcoming it with open arms. 🤗 We know it can be uncomfortable and bothersome for Daanya, but she’s been a trooper 💪🏼 through it all. We hope to have some answers in the coming week so both short-term and long-term plans can be made to get her into a good place! 💜

31/10/2024

We made it to Florida! ☀️ I’d be lying if I said it was a cake walk, but thankfully we made it in one piece! It was a big risk traveling with Daanya but we are here now and we know we’re in the right place for her. It’s hard to believe we arrived 🛬 here for the first time TWO years ago today! Now, we begin all the testing 📈 to figure out the extent of what’s going on with her. We know we will be in the hospital here for a while, but we can be at peace knowing she’s in the best of hands. 🤲🏼🥹💜