Marley-Lanae Delores Brown , born January 31, 2009 at 8:15pm weighed 7lbs 3oz length 19 1/2 inches long. The single greatest day of my life also the beginning of a whole new world. I don't want it to sound like a cliche when I say everything changed the day my daughter was born but in deed it was a total surprise when the doctors came back with some unexpected news.
The whole pregnancy was a breeze no nausea, no vomiting, nothing uncomfortable to speak of labor went smooth as anyone could expect. Marley was born at 38 weeks gestation and no complications throughout, a mellow beautiful baby at first site is all we saw. Doctors came back with some suspicion that Marley may have Down Syndrome, they pointed out some unalarming features that we would have never noticed like her ears being low set and a little scrunchy, her nose bridge being flat and others that really didn't matter at the state of mind I was in after giving birth to pure bliss, but at that they decided to run more tests to be 100% sure of course and so they did and not only did they confirm their suspicions but they also came back with more news Marley was not only diagnosed with Down Syndrome the day of birth but also having a heart defect to be more precise an a trio-ventricular canal defect. At the time I was a 19 year old first time mom and my head was just spinning. There were no signs pointing to any of the news prior to birth the ultrasounds all came back normal as well as all the blood tests and with my age and my health all the extra tests were unnecessary, so big day with big news not only the little girl we were waiting for came but more than expected. Don't get me wrong it was still the best day of my life but decisions had to be made and plans altered for sure. There are many different ways people cope to news like ours and different people of course go through their own motions our particular plan was "lets get all the information we need and do what we have to do" (-Brown) See it didn't matter if our baby was born yellow, orange, or red we were just happy she was finally here and healthy and it didn't matter what disability or disorder, she is our baby no matter what. So our stay at the hospital ran a few days over what was initially expected and many many tests were being ran from day one all I could remember is them bringing me my baby and taking her away for more tests. I can honestly say my stay was spent walking back and forth to the nursery to take her back every time they took her away, luckily there were no complications so I was back and on my feet as soon as she was out. Many different doctors came in and out and I cannot remember the countless amounts of conversations that were had all I needed to know was when can I take my baby home and what do we need to do from here.
Step 1 get all the doctors needed in order. We met Marley's cardiologist day 2. He is probably one of the greatest doctors we will ever have. Amazing in every way, extremely kind, helpful and understanding, Dr. Ludwick. He came in and talked about all the different steps needed from now to surgery day and so on and so forth and really was there every step of the way in that aspect of Marley's life. Our visits with him were so frequent in the beginning and mellowed out after the surgery date. Marley had an open heart surgery at the Sunrise Children's Hospital in Las Vegas, NV July 14, 2009. The hardest day of my life.
This girl is the strongest little baby I have ever known in my entire life and I'm POSITIVE there are thousands out there that go through the same things we've gone through but in my personal life not knowing anyone that's gone through half as much she by far is my hero. If it wasn't for that strong girl, her amazing supportive father I don't know where I would be right now. I can look back on this day now and remember exactly how I felt when they took her out of my arms and look to this day now and get blown away every time I think about it. Amazing to say the least and we are truly honored to have had the team of doctors and all the support we could ever have imagined. Incredible, after Marley's surgery we were released sooner than expected our stay in Vegas was less than 2 weeks (quite impressive) and we headed home and continued on with our normal check ups. Currently Marley is doing GREAT recovered amazingly and isn't expected to have to go through another OHS (open heart surgery), she will how ever probably be on meds for the rest of her life, and has yearly visits with Dr. Ludwick but other wise is a healthy happy toddler. To date she has had 3 surgery's the OHS being the main one, tubes put in, and adenoids removed (cake walks in comparison) and next year we are looking to get more permanent tubes put in and her tonsils removed (very typical for children with DS) and all those procedures have been done by my second favorite doc, Doctor Zamboni (love). We have a great team, I love all of my daughters doctors and I'm just lucky to have a wonderful group of them that really care there are more than just those 2 in total I think 5 all together but those two have really made an imprint in my heart forever. :)
Step 2 was to get the 411 on what Down Syndrome really was and find more information as to what different steps needed to be taken to insure Marley gets everything she needs. Marley was 5 days old when we took her into get evaluated at our local Early Intervention program. There they provided an incredible amount of help, direction, resources and all sorts of therapy (we will talk about all of that later) they were wonderful. A program designed for children ages 0-3 with any sort of developmental delay or disability all provided free of charge. As I mentioned before no one in my family or my husbands family really had any idea what the diagnosis really meant we just knew it was going to be a little different and so everything came together just the way it was meant to and not only can we now share our story but also teach others of all the things we never knew before as well. I love telling EVERYONE that my daughter has DS and letting them know exactly what it is because A LOT of people have no clue as to what it really is. So I know this was a lot to read if you even made it this far and a lot of information but I hope you've gotten to know Marley a little more but believe me this is only part of her story there is so much to share and I will but this is it for now. :)
Marley (Guess her age lol)