Something we never expected - Your babies right lung does not look normal. I'm so sorry. As some of you may know, our daughter Ember has a condition called CPAM (Congenital Pulmonary Airway Malformation (CPAM.) There is no known cause for it and it affects around 1 in every 30,000 to 40,000 babies born per year. A little backstory - On January 11th, 2024 as we excitedly headed to our 20 week anatomy scan, the technician informed us during our appointment that there were pockets in her right lung that did not look normal and she would need the doctor to look at it. To say I could feel my heart break may seem dramatic, but that is what this news felt like. No one wants anything to be "wrong" with their children (que the first round of tears.) It was then suggested that we go to Denver Children's Hospital to have her looked at. I called them immediately to get her scheduled, and the soonest they could see us, was a couple of weeks later (talk about stress!) At the end of January, Justin and I headed to Denver (with the incredible help from my parents who took care of Oakley while we were away.) We had to have a full day of testing done to check out our sweet baby (MRI, Ultrasound, and then a meeting with the Specialists team.) To say I/We felt overwhelmed is an understatement (que the second round of tears), as the doctors let us know that she would need surgery to remove the cysts in the right top lobe of her lung once she reached 12 weeks old. *Boom* - The thought again creeping in of "Why is this happening to us? Why are we the ones who were dealt this card?" Over the next few months, I was seen weekly at Maternal Fetal Medicine here in Grand Junction, to continue to monitor the cysts and make sure they were not growing any larger. Thankfully, the cysts sizes were staying the same as she grew. Unfortunately, when I was 35 weeks pregnant, my care at the midwife center had to be transfered to the hospital for the safety of myself and Ember (I am so thankful that they let me stay with them as long as they did.) They fought hard to keep me, but unfortunately due to the possibility of Ember needing NICU care after birth, it had to be done. Ember was born May 6th, 2024 and fortunately she did not need any additional care. Praise God!!! We headed home with our perfect girl, but knew that within the next few weeks, we would be headed back to Denver. On June 28th, we had our follow up appointment. Ember had a CT scan (que the third round of tears), to see what the cysts were looking like. Unfortunately, they are still there and in addition to a very large cyst in the top lobe of her right lung (which we already knew about), she also has multiple smaller ones in the middle lobe as well. *photos below* The doctor informed us that he will be removing all of her top lobe and parts of her middle lobe on her right side. Fortunately, he did let us know that children's bodies are able to grow new lung cells and it is likey her lung will be mostly funtional in the years to come. Unfortunately, the right side and the top lobe of the lung are the hardest to work on, therefor the surgery will be a bit longer than usual and we will need to stay longer than most. If we chose for her not to have the surgery, the risk for infection in her lung is high, as well as a slight risk for it to be cancerous. Neither of which is something we want to chance. The possibility of her having ashma after surgery is there, but we would much rather that than the latter. With all of this being said, we will be heading back to Denver for Surgery in the next couple of months. We feel very confident in the surgeons ability, but as we all know there are many scary unknowns with these types of situations. For those that know Justin and I, we do not ask for help often. We try and take care of everything on our own and take pride in that. However, we could use some help. Whether that be financially or even just praying for us, that would be huge. We had absolutely no idea that this would happen (as most people don’t), and the expenses have hit us incredibly hard. Anything we may receive is going directly to her surgery costs. We are incredibly grateful to those who are even just reading this and appreciate you! We will continue to make the best out of this situation!! Thank you! Justin, Abbie, Oakley and Ember
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