Hello everyone!!

It has now been one month since Samira’s surgery. Wow! It feels like it was yesterday, but it also feels like it was so long ago. I’m so thankful those days are long gone & we pray they stay that way. It was a LONG month full of so many emotions. What’s most important, is Samira isn’t suffering as she was before this whole adventure began.

To update you all, Samira has recovered tremendously from her operation. She has a scar from under her arm around to the middle of her back & even that is looking so much better (thank God for Mederma!) Since we have been home, Samira hasn’t had one episode of dyspnea-which is difficulty breathing, nor has she stopped breathing. Thanks to GOD!! It took us a while to figure out what feeding regimen works for her. She eats small amounts often, takes breaks, & must burp out her gasses before continuing her feed. She also takes a few medications to ensure things are moving along & staying down as they are supposed to. All of this takes a lot of effort, time, & appointments with her doctors. But we cannot be more thankful she is doing so well in comparison with just 1 month ago.

That being said, Samira’s trachea still hadn’t opened after surgery as expected. Five days post-op Samira had a brochoscopy which showed it was still narrowed to just a few millimeters. This is why her feeding regimen is so imperative to keeping her from having an episode. Her surgeon told us it may just take time for her trachea to realize it has room to expand. If it doesn’t open, she will need to have another heart surgery. But, in this last month, her feedings have increased by 2oz & she is loving solids. No doubt, carrots are her favorite! So we have faith her trachea will open & she won’t need any additional surgeries. For now, we have to be super strict with her feeds, about being around people, & going places. The doctors remind us that if she catches ANYTHING, it WILL put her right back into the hospital. She is also receiving Synagis-RSV therapy, monthly, as an additional precaution. Samira’s follow-up bronchoscopy is scheduled for April 5th & we are so anxious to see what measurements her ENT comes back with!

We have made our best efforts to personally reach out to our close family & friends who came to us during this trying time. Now we would like to thank all of you who have supported us virtually. We cannot express how much comfort God has given us thorough all of you. There is no doubt that your prayers are why Samira is home again & well on her way to being a perfectly healthy baby girl. The support we have received through this journal has been so amazing. We could not have gotten through this, as well as we have, if it weren’t for all of you. So again, THANKS SO MUCH from the bottom of our hearts for all of your love & support!!

 

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